raitchparker

[raitchparker]

Sunday, March 5, 2017

Nothing quite builds the desire to write creatively than being paid to write about power tools. So, here I am.

I spent the better part of yesterday in a room full of people as gripped by fear, anxiety, and a deep desire for change as I am. Two organizers, named Scott and Michelle signed onto the Indivisible project within seconds of the inauguration and have been pulling a bunch of us en masse to demonstrations and meetings. There is so much happening every day, to list it out is a litany of science fiction. I can’t list any of it right now. Maybe some day, I will. It’s hard to fathom what history will say about this era. 

What I have to say is that I do not share much passion for my activism. I never really have. To me, it is on par with exercise or eating a mostly low fat diet. I don’t really want to do it, but I know the painful results that await me if I don’t. Also: just like I prefer to hang out with stable and healthy people, so do I prefer the company of people who are awake. I always, always have. I’ve always run to places where awake people gather, like the coasts, the mountains, and parts of the dessert. Now, I’m tucked away in a corner of a small city, reaching out and finding my people. 

One of them, Anne, I had lunch with this week. Another colleague of ours, Debbie, sat with us through a sobering lunch where we stammered our concern, fear, privilege, and resolve. We are thankfully motivated. I am thankfully not alone. 

I felt like complete emotional shit all week. Honestly, I don’t think it’s fair to have to menstruate during the era of T****. Especially with the sick husband and a body of lawmakers who are using the health insurance on which he is so dependent as the most irresponsible political wedge in the history of my lifetime (just this side of abortion, voting rights, and all the other horrible racist shit Congress has done in our name since the founding of the Republic). There were too many days of tears last week. I was wiping them away like an angry child attacks her sadness from the unwanted pain of a scabbed knee. They shouldn’t be there, not this much. 

But they are there, quite a lot. It is not easy, starting over. I heard a voice, the voice of the yogi, to be sure, who in the midst of that turmoil, that grief, that blistering anger that spoke to me in the form of torrents of sobs. It said: “You just started over. Your friends are far away. Your husband is sick. It’s okay to feel alone. It’s okay to be scared.”

Sometimes, you turn into the skid. It’s the only way to stop. It’s also the only way to forgive yourself for moments when it feels like everything is about to fall apart. And so, even in all the spinning, I stopped. I saw the world and remembered that it’s always, always been a place of unfettered cruelty and hatred. To believe I could escape the brunt of it is to see myself as something spectacularly lucky. We have been lazying ourselves through a modestly participatory democracy for a century now. 

So, I listened to the yogi voice, because she’s the smart one. She always knows what’s up. “Please,” she said, “the world is in turmoil. Please, be soft with yourself. Be quiet. Be mindful. Be kind.”

To me, a horrid epoch started with the death of Bowie and was capped with an orange-faced monster’s inauguration. I’d never equivocate the former with the latter, but they both broke my heart, so it matters to me. I’m listening to “Space Oddity” right now, because I need that David, the David who had only recently turned away from being David Jones. I haven’t listed to that album for years, and rediscovering it is lovely.

My friend N--- was the roommate who had this album. We stopped speaking over a decade ago, and she is as self-destructive and messy as they come, but this album ties me to her and a house we shared together. I’ve had a couple of dreams lately where she floats in and is nicer, younger, and friendlier than she would be if I saw her now. It was the version of her I met in the 90s and it was like spending time with her. 

She was one of the first warriors who taught me how to be a real fighter. She led me to yoga and other esoteric practices, she gave me the instinct to chant, which I still contend saved me. So, “Oddity” is a bridge to her, and that time, the girl I think of when Ani DrFranco sings about her “starstruck girl.” I love the way the soul pulls you to the albums you need, because it knows, somewhere buried in its lyrics, in its swells and lush orchestration you’ll find the moment, a bullet, that sends you armed, ready, steaming, and flaming for the fight the next day. 

Because, FUCK. That’s the only word for it, this period. Every headline is worthy of its own new curse word. We are all armpit deep in potential losses. Everyone is scrambling looking for anything to grab so we can all have a hand free to hold onto our very humanity. These are rough waters. We are all exhausted and gasping. 

Bowie buried the shimmery, glossy, very 60s and folky (”Oddity” is his folkiest album by a mile) “Cygnet Committee,” and on it, he sings like a man whose just lost his religion. I’d always assumed it was about war, but I read in the Mojo Bowie edition that it was about the dissolution of an art collective Bowie had helped create. Or something like that. The thing is in storage and I haven’t putted together the damned book cases yet. 

The song structure belies the epic rock drama of other long Bowie movements, like the “Sweet Thing” trio on Diamond Dogs and, of course, “Station to Station.” It is a character song, and, so, no one probably really knows exactly what the song is about unless Bowie specifically said. The orchestration is demanding and remarkable. There is Dylan-influenced guitar laced within it, as well as a direct shout out to Detroit (”kick out the jams”). You can hear him pulling at the boundaries of analogue instruments, with what sounds like a spinet (but could be a Hammond) tinkling in the background. 

I need my fight songs right now, and I forgot this one existed until it spoke to me today. It raised its hands and said “I’m the song. I’m what you needed. I was right here.” I did need it. It reached out from over 40 years ago and clobbered me on the head with its history. 

Who am I to think this is the worst of times anyway? How could this be worse than an era when black and white people couldn’t legally marry? How can I know what it was like to have friends drafted into a war? I would have, had I been a young woman, a woman Bowie’s age, then. Friends of mine would have been dragged, helpless and alone, to Vietnam. 

Who am I, a Jew, to think that my life is harder than my great grandfather, a man so scarred by his own heritage that he wouldn’t tell my grandfather, his own son, his true last name. Who am I to feel suffocated when my own husband can’t take an uncompromised breath?  

I dove into the song and let it take over my sadness. I’d been writing about power tools off and on all day. I’d already taken my husband to lunch at Unioin Loafers, a remarkable bakery and lunch spot that Cassidy has been preaching about since we moved to the neighborhood. We had great food and I drank strong coffee because I knew I’d need it. (I’ve been drinking coffee again regularly for the first time in nearly 15 years. I felt about that for about 8 seconds; there are far worse fucking things I could be drinking too much of at a time like this). 

Herbert at a messy chicken salad sandwich and I had maybe some of the best pastrami I’ve ever had. it was feathery, light, very lean and perfectly seasoned, piled onto their fresh baked caraway, piled to the ceiling. It’s an elegant little spot and I could see sharing a bottle of wine with a sister or four there soon (their wine list is great and super reasonably priced). I sipped on the hot coffee and watched Herbert pick his way through his messy sandwich. (Herbert has a pet peeve about oozy sandwiches; there was a restaurant in our old neighborhood that became his sandwich nemesis for this reason.) 

To know your husband’s sandwich preferences is the normalcy of marriage. Happily married people love that kind of intimacy. I suppose unhappily married people are tortured by them. To one, it’s a reminder of love and companionship, to the other, a sort of torture.  

“When I go to a place like this,” Herbert at one point said, referencing the hip urban crowd (a very diverse one to be clear), the relatively loud music, the crowded dining room, “it occurs to me how wiped out I am.”

I shared with him that the night before, when I was networking with local activists, that I knew it would have been more than he could handle. Walking from parked cars to crowded rooms, backed to more cars, onto another restaurant, where there was more walking. I recognize so many times where he should be with me, and probably wants to, and last night was surely one of those. He’d have been with me at the Women’s March. But I’m doing all of this alone. He’s spending his time alone, in our (albeit fully beautiful and comfortable) house. 

And that’s how you normalize illness. That’s how you come back together when an ideological war is raging around you. You eat sandwiches and you talk about the disease that destroyed your husband’s lungs. You embrace all of it. When you can, you remember how lucky you are to be able to eat a nice $40 lunch with your husband, as heartbreaking as it is that he’s taking medicine that requires he wear 50 SPF sunscreen, even on an overcast day (it was drizzling when we left).

As soon as we got home from the restaurant, I clicked on the space heater and sat down to write about tools. It’s work that’s easy to get distracted from. And so I tend to Facebook and then get back to writing. Writers are experts in killing time. 

Somewhere in there I felt a yearning for the right piece of music that would remind me how to live through all this. I started with Prince’s (lest I remember how crushed I am that he’s fucking dead, too) “Around the World in a Day” which is ridiculous and got me through a blog about dust collection equipment. I went right to Kate Bush’s “The Kick Inside” with her wee, 19-year old voice and her quaint arrangements, belting out tunes on what I’d still argue is one of the most staggering debut albums ever. 

I kept going back to Spotify, until I went back to an old Bowie. I felt the young person who first heard those songs, the 20-something who lived in Tucson, kick at me. It was my kick inside. And I started crying. 

Not right away. I let the opening tracks wash over me. I drifted over to Facebook and posted a link to the song “Unwashed and Slightly Dazed” and I reminded everyone who reads my posts that I still miss Bowie. I got through about 1k words about demolition hammers and portable flashlights with “Letter to Hermione.” 

Then the lyrics of “Cygnet Committee” clobbered me in the face with their relevance, their nowness. I listed to the song two times in a row. I sat in my desk chair and let myself get rocked with deep, deep sadness. I turned into the skid. I let Bowie be my lullaby, as he has been so, so, so many times in my life. I felt possessed by hope, by the sweet knowledge that men like Bowie always matter, too. He mattered.

This is a fighting song. Whatever it’s really about it is, in every way, a 60s song. It’s got a battle march beat at the end, and it’s in the final moments of Bowie crying “I Want to Live” that kept sending me back to the beginning. Mostly, though, it was because I needed to hear this sequence more than anything. Over and over again, as this operative folk rock song churns over on itself, an ambitious 9 minutes of as well-crafted pop as has ever existed on earth, this moment felt like its heart. It pounded its way into me, and out of me, as I just let it bring me into a little pool of sobs, sobs I knew would wring their way out of me until the ship stopped spinning. This is what you listen to when you slide into a skid during the era of T****:

“And We Know the Flag of Love is from Above And We Can Force You to Be Free And We Can Force You to Believe"And I close my eyes and tighten up my brain For I once read a book in which the lovers were slain For they knew not the words of the Free States' refrain It said: I believe in the Power of Good I Believe in the State of Love I Will Fight For the Right to be Right I Will Kill for the Good of the Fight for the Right to be Right.”

Thank you, David. Thank you so much for teaching me that language. I need it right now. I need to remember that I will kill for the good of the fight for the right to be right. I don’t think it will come to that, but that’s what I need tattooed on the inside of my fucking eyes right now. I believe in the power of good. I believe in the state of love. I will fight for the right to be right. I will kill for the good of the fight for the right to be right.

You get through a traumatic childhood like mine by finding the right guideposts from the outside world. Bowie was more than a guidepost. He was a searchlight mixed with a billboard. This way, he said. He helped me name my tribe. I have to be grateful for being someone who loves music right now. Because I can’t give up. None of us can give up. This is a lousy time for giving up. 

About a week ago, I went over to Cass’s sister-in-law’s house for an event she (her name is Rachel) hosted for a friend who has just written a book. Her name is Steph Jagger and her memoir, “Unbound” is about quitting her job and taking a long ski trip. She’s lovely and some of the women there had read her book. I’d meant to, but of president T****, so I only read terrifying headlines right now. My brother-in-law’s brother’s wife, Kris, was there with her two sisters, one of whom is a theater artist and both are lovely. 

It turns out that Dot’s other aunt Rachel happens to live about a block from where this Aunt Rachel grew up. Rachel lives on a street that was literally on my way home from school. About two blocks from her sits the community theater where I did children’s theater when I was a kid. The most tender and loving moments I have of my childhood happened there. 

We got a bit giggly about that when I walked in the door and I drank too much rose. I knew I was a little depressed (heavy and soggy with a horrifically painful and heavy menstrual cycle that would dragged me down even during the relatively restful Obama era). If I could have gotten my hands on fresh doughnuts, I would have walked into her house with three dozen and a bag of sherry to wash them down. That’s how I felt before I got there. 

I spoke to the theater sister about local theater and drank a little too much rose and luxuriated in the simple joy that, yes, this is a part of my new life, too. As hard as things go, I came home at the right time. These were all perfectly charming, smart and accepting people. Kris’s sister Ellie knows a lot about the local scene, has a theater company, and is curious to read some of my writing. It felt like a gift, that night, a reminder of the smart choice I made to come back here, of the world I’m defending, of these nice people who work hard and have the right to raise their lovely children. They loved me and talked me into some well-needed joy. 

I’ll keep stumbling along like this until I can’t. I’ll keep showing up at meetings until I die. I know that now. I’ll never not be involved for the rest of my days. I get it. I did a lot, but it was never enough. I have the gift of extra time now and I will use to show my ass up as long as I can. 

Here we are, facing the dragon of our age. To this, to this epoch, to Herbert’s disease, to the threat of losing our healthcare, to the pain of growing up the child of an alcoholic, to my loneliness, to racism, misogyny, bigotry and ignorance, to the trolls I shall not name who spew venom on behalf of 45, I have this to say:

I will die for the good of the fight for the right to be right...especially if I die right after eating that pastrami at Urban Loafers. 

[raitchparker]

February 12, 2017

Normalizing Illness in the Age of Not-Normalizing T****

During these early days of President 45 (I won’t write his  name), it’s very hard to remember that there is anything else do to, to write, to discuss. It’s only been three weeks. It’s been my privilege as a white person to live most of my life in relative comfort. I’ve known, of course, that people of color, especially queer people (I’m from the 90s and I still like that word) and women, live in a different universe and always have. 

We are all now, as a country, the patient who wakes up in the burn unit, scarred, in unthinkable pain, wondering where her beauty went. We are all huddled together, listening to the doctors who are telling us that the beauty, the very skin-deep kind we knew was relative anyway, may never come back the way it was before. We know we are going to be scarred. We just don’t know where or how badly. We don’t know which scars are bound for permanence. 

Yet, we are disfigured. We are all on the same foot now. The words of James Baldwin, James Brown, and Angela Davis have come flooding back into the now, slamming into the faces of white people everywhere, reminding us all that they’ve been telling us who we are for years. The most accepting of us, those of us who have been living even the most open of lives for years, who have held the hands of people of color as lovers and friends, supported our gay, lesbian, and transgender brothers and sisters step into the light into safe spaces, we are left feeling like nothing we’ve done ever amounted to enough.

So, I stopped writing creatively mostly during this time. A rhino horn pierced what was left of my broken heart. I’ve probably written somewhere on this very site about the dangers of being frozen with grief. It is no way to live. Since Herbert became ill and since our money troubles started in L.A., I’ve been alternately frozen or thawing myself out. This, I realize, is what it means to normalize illness. 

There is a huge, empty, dismembered cardboard carton sitting in our entry hallway, engulfing it, really, that held within it a treadmill that Herbert now uses every day in lieu of onsite therapy at the hospital. Were we in a different phase of our lives, Herbert would have already broken it down and taken it to the trash. We would have already carefully separated recyclable from trash. It would be gone.

Instead, it sits like an abstract effigy of both of us. It took our friend helping us get the massive thing into the house. He stayed through the afternoon and helped us unpack the treadmill and set it up. I would have been helpless to do that alone, and Herbert is at least from a physical standpoint, utterly helpless in general. That same week, my sweet Cassidy and charming baby Dot took me to IKEA where I finally invested some $200 in shelving to replace the metal shelves the movers lost. Those now sit, unassembled, in the living room because, if anyone knows IKEA furniture, it’s not something that anyone should attempt solo. There are just some things in life that, for me, are two-person jobs and putting together IKEA bookshelves is surely one of them. 

So, I’ve got all these piles around the house that are reminders of what we can and can’t do in a timely way right now. I can do the following with some regularity (thankfully thankfully thankfully):

Buy all our food

Write mind-numbingly boring content about office products in exchange for a meager amount of money

Write not-nearly as mind-numbing blogs for somewhat more money

Cook everything we eat except Herbert’s breakfast turkey patties which he makes himself

Make all the key financial decisions for our household because that’s not Herbert’s thing and, even if it was, he gets tired when he takes a shower now, so...

Go to at least one political action per week (last week: visiting Claire McCaskill’s office in the City and pleading with her staffer)

Ponder why I still haven’t taken the dog to get his nails trimmed

Read. Read more. So much reading. We have so much reading to do every day now

Keep the house clean

Do all the laundry

Listen to my husband cough, watch him struggle, and remind myself that we’ve come to the spot in the road where I can’t drop everything and cry all the time anymore.

Normalizing illness isn’t any more normal than this president is. They are both equally challenging in completely different ways. I question my ability to handle them simultaneously. Herbert’s disease and our nation’s woes are both unstoppable freight trains of shitty. Both are completely indifferent to my pain, and yet they are both destroying things that I, without hesitation, love more than anything. 

I am normalizing the illness because I have no choice. I do, of course, still have moments of terrible grief. However, because Herbert doesn’t melt into self-pity and sadness at every turn, I can’t either. It’s his body failing him, after all. If he can hold it down, the least I can do is the same. 

Here’s an example: treadmill day was busy. Our friend, Herbert’s able-bodied friend from North Carolina who happens to live in Wildwood (a blessing of a wild coincidence in a terrifying year) also helped us schlep what was left of our steel bookshelves to a scrap metal yard (so, yes, at least we disposed of them responsibly, dammit). It was the only cold day we’ve had in weeks (it snowed a bit) and we were expecting our treadmill to arrive at a FedEx center near us so we went to lunch. After we ate, Herbert’s friend single-handedly loaded the human-sized cargo into his truck, unloaded it for us, helped me take it out of the carton, and kept Herbert company while I slogged through the horribly-written instructions to get the thing ready for use. 

After he left, Herbert was exhausted. He did very little doing that flurry of coming and going, packing and unpacking, but whatever he did, it was too much. He sat at the edge of our bed using the oxygen concentrator (which provides a straight stream of air, unlike the portable tanks which spit tiny bursts of air at regular intervals), his eyes downcast, his body sagging. 

He was exhausted. In weeks past, I would have immediately excused myself to collapse in a corner somewhere. Normalizing illness asks you to do that, too, to crumple and weep, usually uncontrollably, for months until the grief becomes, as it always does, into something else. That day, though, I just sat next to him.

“You overdo it?” I asked. Because it’s always too hard for him to talk when he’s that exhausted, he nodded. 

“Should I sit here and rub your back?” I asked. He smiled a warm smile of relief. I needed that smile. Sometimes, a lot in fact, illness forms a great shadow over the sick person and you forget who they are. Herbert always finds a way to break through. His smile exploded the shadow. I’m noticing that it’s his light that’s getting us through this far more than mine. 

I sat next to him and let my hand wander softly across his still very broad shoulders. The yogi in me suddenly started driving the bus. I can’t tell you what it feels like when the yogi arrives. Maybe it’s something you already understand. Some people call that feeling God. I call it my reward for years of patience and practice of a very specific discipline. But there she was. She took over my body and reminded me to take in the moment, this perfect moment where, even though the breath was a struggle, it was still there. 

I wonder how many women there are in the world who would give everything--literally every single possession--to hear their husband’s breathe again. There I was, nestled next to mine, squeezing  him around the shoulders while his hand rested on my thigh. There have to be millions of women who would sacrifice anything namable, save their own children, for the luxury of comforting their now dead husbands. For now, the yogi reminded me, he’s here. He’s breathing. He knows you and knows your love. 

I don’t know how to have an afternoon like that during the era of T**** (I will not write his name) and then be the same person who breaks down the gigantic pile of cardboard that’s drowning her front hallway. We’re a man down in this house, and we’ve lost our more functional one. Herbert was our dish doer, our trash remover. He’s done it all so well for so long, I kind of suck at that now. Also, with the title of “I do all the things now,” I’m just tired. 

That night, I was downstairs doing some deep, pot-tinged yoga and mat work, and Herbert was playing bass in his future man cave of a bedroom. The door was open and hearing the familiar thumping of his guitar made the whole place come alive. Suddenly, I remembered in a flash that we were still very much in a place of transition. We’ve been through so much and all at once: the move, Herbert’s diagnosis, the motherfucker of all elections, selling the house, buying a new house, another move...the yogi whispered to me then.

“Everything,” she said, “is fine. Anyone would find it hard to take out a pile of trash right now. You’re normal. Please start loving yourself right now, this instant.”

I popped up and went into Herbert’s room and I said some version of that: that I knew in another life, this place would be looking much more settled. I said it like I’d just uncracked a great code. i said it like my name belonged in a published research paper for coming to this conclusion.

He laughed like he’d known this all along. Herbert, for all his shyness, is far wiser than I am. He didn’t even look up at me from his bass.

“We have a functioning kitchen. If I weren’t sick, I’d have my record player up I’d be pressing you about getting Lacey’s old T.V. Now? I could live like this for another year and I wouldn’t even give a shit.”

Of course he knew already what I’d just caught onto: we are in a good place. We are still in a better place than we were before. If nothing else, we’re settled in a way. We’ve arrived into something better than L.A. We are the lucky ones. 

So, I’ve normalized Herbert’s failing lungs, or at least I’m working to normalize my acceptance of them. I will not, however, in any way, normalize The Republican Administration. To do so is a veritable act of insanity. I will not normalize them, but I do, as do we all, have to normalize our resistance to them. We’re all accepting right now that protests are the new brunch (a friend said on his Facebook feed the other day). I’m going to a postcard writing party this afternoon, for example. 

There is an important balance to staying vigilant without losing your shit. I’m looking to the experts, like Jeremy Scahill and Shaun King, for help. I was on Glenn Greenwald’s Facebook feed the other day and even he posts videos of taking his dogs to the dog beach. If Glenn Greenwald can go to the beach, I can keep living, too. 

Regarding living:

I went to Cass’s Superbowl party last weekend and met her friends who live merely a mile from me. The husband is one of Drew’s oldest friends; he played guitar in Cass’s wedding. He is lovely and she is a firecracker. They just had a sweet baby and they seemed like died in the wool city kids like me. She had a “Galentine’s Day” party and invited me and I went on Thursday night. 

Not surprisingly, all the girls there were lovely. Creative, bright, warm, funny. It felt like the kind of scene I’d go to in L.A. only no one cared what I did for a living. I got there about a half an hour before Cass. When she came in, wearing an adorable hot pink beanie, she saw me sitting on her friend’s couch with a glass of wine.

“Is it weird to see me at your friend’s house?” I asked.

She laughed right away, her big bright-eyed laugh she’s had since she was a baby. “No,” she said. “It feels normal now and THAT feels weird.”

I some lovely women and they were all smart. I felt right at home. The house is maybe a mile away (probably a little less) and it made me feel like moving into this neighborhood is maybe the smartest thing I’ve ever done.

Cass and I walked out together, after we’d had one of those generational conversations where I told her all about the original Mad Max series which she’s never seen. My sisters and I have gradually getting better at saying goodbye. When we first got to town, I think all three of us experienced the most shock not when we showed up somewhere together, but when we parted. For 30 years, those goodbyes have been usually pretty awful. 

I could feel all of us tugging in those early days of reunion to make immediate plans. It’s taken six months for that to change for all three of us. Normalizing our togetherness is more complex than it sounds since it’s never, ever happened before. Not like this.

Cass mentioned something to that effect as we walked to our cars. Something like: “And we don’t have to say goodbye!”

“Isn’t it great?” I responded.

“It is great.” 

“You’re great,” I said plainly. 

“You’re great. I love you, Rachel.”

“I love you, too. I like your friends.”

“They’re awesome, aren’t they?”

“They are. See you later.”

Cass barked a “See ya!” over her shoulder. 

The comings and goings with my sisters is the kind of normal that is making the other not lovely but also normal things survivable. I’ve never known what it’s like to live with supportive family around me. It’s the very kind of normal that I can get used to. 

[raitchparker]

Monday, January 23, 2017

History will address the tidal wave of anxiety that the country grappled with in the last couple of weeks far better than I can here. It happened on Friday. President Tangerine Baggy Eyes was sworn in and we, for the most part, watched. Historically few of us attended in person, which was a small relief, but it was also cold comfort. It felt as much a psychic blow as traumatizing as 9/11, to me at any rate. We are all seated, like anxious jackrabbits, waiting for the backhand of his horrid decisions now. 

On Saturday, though, we took it to the streets. I joined about 20,000 people in St. Louis, not three miles from my house, in front of our old Union Station. I went alone. I spoke to many, and befriended a lovely (black) woman from Belleville, IL. I would take her to be about my age (she has a grown daughter and grandchildren and a baby face that defies her age). It was, she said, her first protest. She joined a conversation I was having with two women, and we stuck together for most of the march.

She was far from the first protester I saw there that day. In the 90s and in the anti-war marches I participated in during the Iraq War, there were moments where I felt like I was part of a mostly-silenced clique of lefties. You’d see many of the same faces. Anarchists would battle with Greens. The movement in the 90s fractured because, let’s face it, there was a lot that needed tending to. 

I stopped going towards the middle of the first decade of the 00s because, well, the news did, too. I continued to do what I could (albeit, not nearly enough) with money, with letters, with phone calls. I started to feel like showing up in person had become the stuff of a South Park joke. My friend Steve who lives in L.A. said that he got rid of his weekend apartment  in Malibu because, in his words, he wasn’t really getting out of town. “It was the same assholes,” he said, preferring instead to hide away in calmer, far less 1% Palm Springs.

While I wouldn’t call any leftie an asshole, that is how I grew to feel about the progressive protests I mostly went to. The same people, the same faces, the same chants, preaching to each other in the absence of an effective, engaged media who gave us no attention. We were nothing more than large swaths of the converted. 

That was not the case on Saturday. I walked, for a while, next to a woman in her 80s who had also come on her own, on public transportation. Her granddaughter was in DC, and so, she said, she had her daughter look up information for her on the Internet (something this woman joked about not understanding how to use) and there she was. A young man, either just north or south of 30, admitted it was his first protest.

“Not your last, I hope,” I said. He nodded. How could it be.

Hope lives in small, dark corners always. I would argue that Occupy lit a spark that for a time, gave way to a steady blaze. I’ve felt those embers, still there, ever hot, since. Those embers gave way to Bernie, to Black Lives Matter, to the Women’s March. You can blow out a flame, Peter Gabriel sings, but you can’t blow out a fire. 

Of course it’s not so simple as that and we all have to accept that we are going to lose things. We don’t know what yet but, at very least, we’ve probably already lost much of our nation’s dignity (precarious as that was). I’m doing what I can not to look too far into the inky black midnight of the future. There is no point of speculation. There will be enough daily horrors to occupy all of us. 

My favorite sign from Saturday’s protest in St. Louis.

Herbert and I are existing on the fumes of the exhilaration of owning a new home. As I type this, a lovely man from the Container Store is performing a grass roots revolution in our closet that will add some dozens of square feet of shelving and racks. These are small things, and we are privileged to have them. Cass and I ferreted out a reasonably priced sectional sofa at Macy’s which I plan on ordering this week. 

The movers lost a few things. The shelves to our insanely heavy steel Sapien-ripoff bookcases are gone. There are pianos that weigh less than those shelves. My heart goes out to the household where those carefully wrapped, bubble rapped, multi-hundred pound bundles ended up. I’m also down an absurdly expensive Italian designed stepladder for which I had a dumb amount of affection. I’d bought it right after I moved into my loft in L.A. Flush with cash and short on storage room (I had none) everything had to do double duty as art and function. I hope whoever is now in possession of my (I won’t say how much because it’s just too white of me) ladder appreciates that it is a glorious piece of design. You know. For a step stool.

The family has been in and out helping us when and where they can. Deb and Curt Parker disinfected the kitchen the day we moved in. There are surgical theaters that have more germs than our kitchen cabinets did after that afternoon. Deb cheerfully cut shelf liner, eviscerated the contents of any box labeled “kitchen,” and within 3 hours, the place was newly inhabitable. 

Cass was here the moment I realized the shelves were gone. I don’t like those bookcases that much anymore. They were ideal for the skinny hallway in which they used to sit and, frankly, they looked silly here. However, the moment I realized that we couldn’t unpack our boxes of books, I let out a long, and sorrowful, “fuck,” and stood defiantly in our unpacked basement. 

Cass was there, arm around my shoulders. “Smoke a bowl,” she said. “It’s all going to be okay.” The empty and now useless spines of the bookcases are standing as a signal of utter Western greed and futility in our basement now, a reminder that I should have followed my instincts and sold them or given them away when we were still in L.A. 

So, we need new shelves. Herbert and I made the obligatory IKEA run yesterday which resulted in our taking home the things that always somehow vanish or need to be replaced in a house move: lampshades (hey, can we work on a design that maybe doesn’t guarantee utter disintegration of a lampshade in less than a decade?), bathroom rugs, dish towels, oven mitts, hooks, “Do we need a spice rack? What did we do with our spices in L.A.? Were they in a drawer? Why did we have the fucking spices in a drawer?”, and a new garbage can for the kitchen and, yes, an idea for the shelves which we plan on buying soon.

He was scarfing down the rest of the air in his nearly empty tank by the end. They should have marriage counselors staffed throughout IKEA stores. I mean, we made it through okay, by the skin of our teeth, mostly because our needs there were simple. I overheard so many “Well, I’m just answering your question” arguments about shower curtains and bed frames. IKEA is where fractured relationships go to die.

We are in love with our new castle. It’s lovelier than anything I deserve. Our neighborhood is quiet and, outside from the NRA sticker festooned Jeep Cherokee that keeps taking its half out of the middle in our narrow parking garage (I had to leave a note; I hate leaving notes, especially in Trump’s America), our neighbors also seem quiet and lovely. 

Then, there’s this: Herbert is going to start taking a new drug soon. The paperwork is long and demanding, and the saintly nurses at Barnes are taking care of that. This medication without insurance copays would cost us $96,000 a year. With copays: $3,000 per quarter, or about $12k annually. There is a copay program for which Herbert thinks he will qualify. In other countries, this medication, at most, costs between $100-$200 per month. 

The Senate had a moment last week where Americans could have started to purchase drugs from Canadian pharmacies. It was good, hardworking Sanders who put it up. These are the Democrats who voted it down:

Bennet (D-CO) Booker (D-NJ) Cantwell (D-WA) Carper (D-DE) Casey (D-PA) Coons (D-DE) Donnelly (D-IN) Heinrich (D-NM) Heitkamp (D-ND) Menendez (D-NJ) Murray (D-WA) Tester (D-MT) Warner (D-VA)

Even with insurance (our plan, in terms of copays, is excellent) if we were making more income, say if Herbert was working, I’d be spending over 10 grand a year on a medicine for which there is no generic. If we weren’t down to a single income, I have no idea what we’d do. If we don’t get approved for the copay, I still have no idea what we will do. I suppose, at that point, my only recourse is to be grateful for America’s Bankruptcy laws? 

I’ve been back to writing for money, which has taken a clear hit on my writing for sanity. Moving and Trump have been disruptive, but, like I did when we got a little settled at my dad’s house, I feel like some calm could be returning to our lives. The calm will calm, despite Herbert’s health, provided that I don’t have to sell the car to buy his drugs.

[raitchparker]

January 1, 2017

Last night, this household quietly rang in the New Year with pizza and cheap champagne. I finally sat my dad and Deb down to watch “Barton Fink,” and I’d assumed my dad would love it because of John Goodman’s performance alone, a cinematic feat that still stuns after all these years (it was released in 1991). Dad’s response was indifferent, largely because the story is not so clear cut.

I saw contemporary America in its scenes: an elitist writer (Fink, played by a young and hungry John Turturro, who I believe won the actor prize at that year’s Cannes Film Festival for the role) preaching to Goodman’s Charlie about the experience of the common man without ever peering his ears open to actually listen to the tales the very common man (one who turns out to be an utter sociopath) sitting in front of him has to tell. Those scenes felt like this election: the political machine rapping intensely and with brash arrogance and hubris without once listening to the rage beating beneath them. “Barton Fink” is about the perils of Hollywood and the self-importance it breeds. In it, though, is at least some of the decoding of our times that makes the early Coen brothers films so compelling, honest, riveting and timeless.

I retired upstairs to finish my champagne and eat cold pizza with Herbert, who had to rest after dinner. We rented and watched “Author: The JT LeRoy Story” which I’ve been dying to see. It was a huge disappointment. The story is rich and fascinating and the documentary is overwrought and smug. The timeline is a mess and it never wavers from the gaze of Laura Albert, a woman who remains so self-satisfied and pathological, it’s punishing to listen to her justification for her lies and manipulation for the film’s run time. There is a good story to be told there, but the film tragically misses its opportunity to do that.

We have been inching closer to assuming our new life in our new home. Our movers will arrive at our storage unit this coming Wednesday and relocate us officially. The Internet guy is coming tomorrow. It feels unsettling and a little cold, because that’s what empty places and new homes often feel like to me before you start breathing life into them. Last night, maybe because of the champagne’s delicate effervescence, I knew in my heart that we will quickly and comfortably settle into those walls and grow into it just like we did in my old condo. it’s a privileged problem to have. 

2017 is here and we are all still walking around like we have pancake batter stuck to our faces. I remember in 1983, the first time a boy broke my heart, I had this same feeling. The grief then of being rejected in that way, of losing access to a set of arms that held me for a few, too-brief months, was utterly new and shocking. I remember going about my day, and then suddenly, a single stream of bile would rise up and overtake my mouth.

I distinctly remember an afternoon where I’d finished my homework and had the carefree afternoon of a 13-year-old sitting in front of me. Why then, I wondered, did I still have this sense of dread sitting like an opened box in the middle of my heart.

“Oh, right,” I suddenly remembered, “I’m fucking heartbroken.”

My favorite explanation of grief is from the play “Rabbit Hole.” It comes from the character of Nat (the main character’s mother) while she’s talking about grieving her son who she lost to drugs a decade before the play takes place:

“I don't know... the weight of it [loss], I guess. At some point, it becomes bearable. It turns into something that you can crawl out from under and... carry around like a brick in your pocket. And you... you even forget it, for a while. But then you reach in for whatever reason and - there it is. Oh right, that.”

I have two bricks in my pocket right now: one called “My husband’s lungs are useless raisins floating in his chest” and the other is called “Trump.” I have an uncommon amount of things to look forward to right now. We have, for now, affordable health insurance. We have a truly remarkable home, THAT WE OWN FUCKING OUTRIGHT, that we’re about to move into. We have this beautiful family who has nothing but kind things to say to and about us. 

I normally use gratitude to wash away the dread. Right now, I am unquestionably grateful for the platter of “holy shit how lucky are we?” that I see myself reflected in every day. That gratitude cannot overtake the massive amounts of concern I have for my husband and my country. Herbert’s cough, his wheezing, the hum of his oxygen machine, the hiccups of his O2 tank helping him to breathe are as oppressive and omnipresent as Trump’s tweets. 

Daily, I remind myself how lucky we are while my head stuck in an oven. A friend of mine made a post on Facebook a few days before Christmas where she asked for prayers for a dear family friend who, as a sufferer of cystic fibrosis, was about to undergo a double lung transplant. It was hard not to post “He’s going to be okay. Trust me. I know all about that shit now.” It was hard not be angry that I do know so much about it. So, I got a little angry, not with her, but with this newfound knowledge I have about survival rates of lung transplant recipients. 

This is knowledge I’d rather not have. Also, there’s this: I know I can’t live my life angry, but this anger is very real. Herbert is kind, decent, thoughtful, and loving and he got sick anyway. Herbert is now helpless where he was once capable. He ran our household in many ways. Logistically, I’ve lost my partner, one I waited the better part of a lifetime for, one who got sick within months of our wedding. 

The anger is very real. I’ve had some epic verbal rips lately at the Democratic Party, a group of isolated, overly-confident, arrogant fools who led us all to slaughter by doubling down on a candidate no one wanted. They turned away from the other septuagenarian in ill-fitting suits who likely could have been our solution to this problem in favor of a woman who is in part responsible for it. Fuck them and fuck her, too. Fuck them all.

I can’t live like this for much longer. Anger is dangerous and is only effective when it pushes you towards action. I’ve had experience being angry with politics (not nearly to this level, but still, I hated George W with the force of 1,000 suns and I still managed to stay politically engaged and active throughout the 8 miserable and bloody years of his tenure), but I don’t know how to unhate a disease. That may be my task for 2017: to see the living husband in front of me, and to lough the coughs, the wheezing, the trips to Barnes for his pulmonary therapy, the hiccuping beeps of the oxygen machine that terrorize our dog, the disabled hangtag we can display from the rearview mirror so we can park in handicapped spots, and to love them, to truly love them, because at very least they all add up to one obvious and unavoidable truth: Herbert is still alive.

He is compromised. He is weak. He is not living the life he thought he would. He is constantly exhausted. He is facing it all with as much courage and grace as anyone could. He is still tender and helpful and probably totally ashamed that he can’t do much to help me physically. He is, however, there. There isn’t any easy way to accept that your husband can’t hug you anymore because it puts too much pressure on his shriveled raisin lungs. It isn’t easy to accept that, after a while, the constant rhythm of his coughs become disruptive and, even, shamefully, annoying. Becoming annoyed with your husband’s chronic, unending coughing makes you feel like a person who shoots babies. In those moments, I don’t just hate his disease: I hate myself. 

On this, the first day of what is going to be a bloody year for the world (they always are), I know my burden is to learn to live with anger in a way I’ve never done before. I am going to have to let it sit on my shoulder. I won’t feed it, but I can’t pretend it’s not going anywhere. I hate the sound of Trump’s stupid fucking plodding croak of a voice as much as the sounds of Herbert’s hacking. I can’t, and won’t, pretend like I don’t.  

My mother’s cruelty knew no bounds. The lesson that taught me is that some wounds live with you forever. This anger is likely to be more recalcitrant than I want it to be. It’s stubborn and fevered. It’s also legitimate. 

“I see you,” I’ll have to learn to say to my pet anger this year. “I know you’re there. But I have a life to lead, so we have to do the dishes and write 500 words about solid state drives now or this whole show is going down the drain, okay?” 

My anger and I are going to be hanging out together for a while, like it or not. It isn’t going to be easy. I’m quoting myself when I say this: the things that matter are never easy. Important things, the things that matter, are almost always battles. So, to you, 2017, I have this to say: here we go. 

[raitchparker]

December 23, 2016

Toby, our dog, is an obsessive licker. He doesn’t lick people, toys, chewables, or (thankfully) expensive shoes or electronic devices. He prefers his tummy, his privates, and his feet.

He’s done it since I rescued him in 2009. He was neglected and didn’t know how to carry anything in  his mouth when I got him. He’s only ever developed a fondness for bully sticks. To date, he still prefers the flavor and comfort of his own toes.

I was warned by many friends to break him of this habit. The webbing in his toes is sensitive and he could irritate it. His skin could get infected. The world could end. Horrible, horrible things could happen if I let me dog obsessively lick his own skin. 

“Stop licking” is a command that Herbert and I have tried, and mostly failed, to instill. Herbert softens the command with a loving “Buddy” inserted at the end. Toby will sometimes stop. When he does, he usually drops his head to whatever soft, fleece covered surface sits below his chin, huffing, sighing in the funny way dogs sigh. 

We are now, the three of us, living in closer quarters than ever. We spend a lot of time sitting on the full bed in our guest room watching T.V. on our Apple T.V., the device that makes it possible for millennials the world over to live at home. Toby loves to sit on the bed with us. However, his licking, now just inches from our faces, and ears, has become even more intrusive.

The other night, out of desperation to make him stop, I inserted my leg in between in mouth and his feet. He pointed those wondrous, jewel-like brown eyes at me, full of confusion and sadness. Then, he did the thing that children and pets always seem to do when they are at their most frustrating: he made me feel like a terrible person with his fragility.

As soon as my shin was near his face, and after he shot those glassy, amber, “were those made in a factory because they’re too cute to be real” eyes my way, he gladly, and heavily, put his head on my leg. It’s more accurate to say that his head just dropped there, like his desire to have it there all along was so strong, once my leg showed up, his muscles gave way and plop, head met leg. 

In seconds, he was snoring his doggy snore. The solution all along to his obsessive licking was comfort. It’s what he was seeking: physical contact and reassurance with me. (Also: note to self, duh. Of course that’s why your dog was licking himself.)

Last night, Herbert and I were rewatching season 1 of “Sens8″ in preparation for season 2, and Toby was wedged between us on the bed. He started licking away and, absentmindedly, I stuffed my forearm under his head so he would get distracted long enough to stop. His response was to burrow his forehead into my arm. The pressure was impressive for such a small head. He really wedged it there, his sweet eyes puckered closed. Like an infant, I didn’t move my arm until I heard the soft whisper of doggie sleep emanating from his nose.

“Stop licking” will now be converted to “come here.” He is as kind and gentle a creature as you are likely to find anywhere. He brings us both great comfort and, according to science, a healthy dose of oxytocin. If my dog is warding off depression and anxiety, the least I can do for him is love the licking away the five to ten minutes a day required. 

It made me think about what the world is going to look like not so much in the next four years (those will be horrible enough) the the world that awaits us after that. It’s hard to know what those impacts will be, but they will hurt people. There are children who are likely to feel the sting of what Trump will do long, long after he’s gone. A single term is our best hope now. If he does what many of us suspect he’s going to do--to the environment, to healthcare, to education, to programs that protect poor and underprivileged children--we could be feeling his backlash for an entire generation. 

There is some hurt that never heals. Toby is my living reminder of that. When I first brought him into my home, his response to visitors was to sit under a chair and growl. Now, he just assumes anyone who walks into the house is a candidate for a biscuit or a belly rub. However, he’ll never stop licking his feet. I’ve tried to introduce the wonders of chew toys, which are instruments for self-soothing. Had he been trained when he was younger, this may have worked. He came to me at the end of his first year. It was too late.

To know, at the end of his 8th year, that the cure for his licking is the tiniest demonstration of love, is maybe the greatest lesson he’s ever given me. Frailty is sometimes permanent, but we can always respond to frailty with love. It takes so little energy or effort to touch someone on the shoulder, to look someone in the eye, to say the words “How can I help you?” 

The tiniest bit of connection is not going to solve the problems we as a world (the United States did not, in any way, invent or is the sole author of the wave of neoconservatism that has been sweeping up the world in anger and greed since the turn of the century; it’s no picnic in France, Germany, Spain or the UK at the moment, either) face. It will help, though. It will help a lot.

What if we decide, as a race of humans, to let weakness trigger empathy instead of rage? What if we turn towards hurt and not away from it all the time? Does it really take that much courage to be present? 

I suppose it does, or I would have done it for my dog sooner. If I’ve failed my dog, where else or who else, have I failed? Yesterday, this happened: a girl who valet parks the cars who introduced herself to me weeks ago, sat down and told me about a fight she got into with her boyfriend.

She is young, but she’s no fool. He’s a liar, a cheat, a bum, and a slob. He brought fleas into her house because he was staying with a friend whose house is infested thanks to his untreated pets. She let him stay the night, she said, because she could tell by the way he smelled that he’d (he’s homeless) spent the night outside. 

I didn’t say anything she didn’t already know. We agreed that it’s easier said that done to cut someone off, and out. She knows it’s what she had to do. I have plenty of advice for a girl regarding a boy like that as a 46-year-old woman. What woman on earth my age doesn’t?

Still, I listened. I shut my big, smart, educated mouth and listened. I told her I knew she was smarter than that. “I am,” she agreed. “Rachel, come on, you know I am.” She soon had to go back to work and we gave each other a hearty and friendly wave when I left.

It’s hard for someone for whom codependency is hard wired, like me, to give without bleeding ourselves dry. Over giving to me is what licking is to Toby. I worry, constantly, about everyone I love. That they need things I can’t provide. To say that battling my savior complex is the great theme of my life is an understatement. My task, then, is to remember how to give, what to give, and when to give it. This is hard, like “an alcoholic walking into a bar” hard, but I have to figure it out. I have to do it soon. 

We need each other. We do now and always have. This, no matter whose in charge, will always be true. Now is the time to find structured and sensible ways to help, as much as it is the era of shoulder touching, eye contact, smiling and paying someone’s bus fare. These little gestures may be what stands between someone picking up a cigarette or a drink or worse. They may also be the acts of kindness that stop a stranger from hurting herself. 

Here’s something I’ve known for a while: if Toby has a bed next to where I’m working, he will curl up in it and fall asleep. If I do not, he will pace, whine, trot around the house, and annoy the crap out of everyone. When we first got here, I had to spend another $20 on a new bed for the desk I am using downstairs at my dad’s house to prevent this from happening. Now, as I type this, he is curled up, a lazy smile creeping on his face, a dog chasing something dream consuming his twitching, humming body. It was hardly a big investment, but, to him, it made all the difference.

I am asking the universe to send me $20 life changing opportunities for people around me. I am saying, now, officially, I am open for business. I am reminding the world that I set myself up financially so I can do this. I can’t do it every day, but I can do it a lot. I am asking for the awareness to notice those opportunities so, like Toby, the people around me have more chances to sleep soundly and peacefully. I am asking the world to show me deserving people in need. 

The world, after all, is depending on me. It’s depending on the most capable to step in, to wedge an arm or a leg in an act of love, of comfort, of empathy, of grace. It may be these moments that stand between us and a monster with a ridiculous hairdo destroying the sanctity of peace in our streets. 

[raitchparker]

Monday, December 18, 2016

Because it’s been nearly three weeks since my last contribution, I want to collect impressions from the last three weeks. 

1. I am less terrified and mortified than I was at last entry, maybe because, for now, I have no choice but to be. Herbert and I have been watching a Netflix docuseries called “Captive,” a show about people who have survived kidnappings. Of course, those types of shows cast a light on your own problems in a specific way. It’s an unfair comparison, really, to say “Well, my life isn’t as horrible as that British couple who were held captive in Somalia for a year by pirates who abducted them from their sailboat in the Seychelles.” 

That is, however, what happened to Paul and Rachel Chandler. They were held at gunpoint, tortured, threatened with death and at some points separated during their captivity. It’s not fair to them that they inspired me to appreciate the freedom I have now. It’s not fair that their desperate and horrifying nightmare poked me gently in the ribs and said, “Life is gentle. Your husband isn’t dying, at least not now. Live in this moment because this moment is all you have.”

So, I’ve committed myself to less anger, more presence. I will not suffer the critique of people who tell me, and others like me, that our Trump anger is brattish or uncalled for. I will not withstand the demand that I “give him a chance”. There does, however, have to be some level of acceptance, for now, or my heart will turn into a sad, broken raisin. My marriage already has one of its members suffering from the ruination of one major organ, we surely don’t need two. (That sentence is in no way grammatically correct, but I know what I mean, so...)

2. We have a home.

We haven’t taken legal possession which, if all goes according to plan (I can’t see why it won’t) we will do on Thursday. 

Herbert and I only spent one weekend looking at new homes, and this one found us. We were only starting our search as purely investigative: fact searching, eliminating, learning more about what we could and should afford than anything. There it was, though, on day 2, Sunday December 4th, waiting for us to discover it.

On Saturday, December 3rd, I dropped the dream of living in Maplewood. The first house we saw on our weekend of house hunting was what I assumed to be an average property in that area: a $200k two-story that had been beautifully rehabbed. I liked it. Herbert, with oxygen tube inserted in nose, climbed the stairs to the bedrooms and shook his head. Because Maplewood is a town of bungalows and two-stories of this style (our agent has investment property in the area and owned his first St. Louis home in Maplewood; he confirmed this), we walked away from that house knowing that, unlike my initial thoughts, this was not where our home would be.

That day, we saw charming and perfectly livable ranch homes in Kirkwood and a tiny bungalow in Shrewsbury. At the end of day 1, a rambling rancher from the 1950s in Kirkwood, not more than 2 miles from my sister, was looking promising. It needed work, but we could offer cash and get away with a kitchen remodel, some new floors, a coat of pain and the place would do just fine. 

Day two started at a condo loft in Tower Grove East. We walked in and I saw the look on Herbert’s face. “Wow,” was his response. It was stunning: 15-foot ceilings, grand windows, a patio that overlooked busy, but not L.A. busy, Grand Avenue. It has a big private master bedroom and en suite bath. The kitchen is perfect and big and full of the things we love about kitchens. It had a big downstairs with another bedroom, full bath and a massive den with incredible exposed stone from the original building. We were enthralled.

But: our agent noticed a mildew smell. The carpet was wet downstairs. Because it was raining outside, he was cautious.

“You learn a lot about a house when it’s raining,” he offered. “I know the selling agent. He’s a friend and a good guy. We won’t make a move until we find out what the water damage down here is from.”

The second house was in University Heights, one of the really breathtaking and older subdivisions in U-City. The house, like the loft, was as spectacular in person. It was in every way my dream home. The downstairs had a pocket den and a private 1/2 bath that I thought may suffice as a small bedroom for Herbert so he didn’t have to confront the stairs in the morning. It also had a gorgeous screened in porch with cathedral ceilings, a kitchen with a sunny dining area, full dining room, and three lovely bedrooms upstairs. I coveted that neighborhood when I was a child. 

In person, the house was more impressive than the photos.

“You love this house, don’t you?” Herbert asked.

I had to tell him I did. I didn’t want him to make any sacrifices for me, but I had to be honest. I did love it. I knew, as we ooed and ahhed our way through the rooms of this gorgeous, 1916 home, that we would not live here. The downstairs den, off the main living room, was too small to be a practical bedroom and there wasn’t an easy or cheap way to add a shower to the bath. 

I also knew that we would not see any two properties that we loved as much as the loft on Grand and this house. They were, ironically, listed for the same price. Herbert was upstairs looking at the bedrooms one more time, to humor me I think. Full of disappointment, I said, out loud, “Oh, Herbert. Your stupid disease!” 

Our agent had only known us for two days, but he’s a well-humored guy and knew I was kidding, but also recognized that I was coping. 

“Sometimes, you’re number comes up, right?” he said. I nodded. 

“That’s right,” I said. “It’s frustrating, but there’s nothing you can do about it.”

He then went on to tell me that his son, his oldest child, has a chromosomal disorder that doctors had never seen. His boy had two fused chromosomes. His condition, like Herbert’s, was incurable. Unlike Herbert, his son would never talk, never feed himself, never walk, never live an independent life. My agent told me this like he’d said it a zillion times, like he knew was heartbreak felt like, that pain and disappointment were two things he stumbled into every day. 

I said: “That is much graver than anything we have to deal with,” I said. 

“It’s all hard,” he said (or something to that effect). 

My Aunt Mony, my father’s younger sister, has always said this: Whenever I feel sorry for myself, God throws a cripple in my path. She is being literal (about the God part), but she does have a story about a bad day she was having years ago, when she turned and saw a severely physically disabled person. She said she cast off the awful day she was having and humbly accepted the gratitude for her health. (She was, at the time, only recently diagnosed with rheumatoid arthritis, a disease she has bravely and successfully managed.)

I do not believe in the same God she does, but there was the cripple, quite literally, thrown in my path nonetheless. I loved that goddamned University Heights house. I wanted it. I was feeling the worst kind of self-pity for not being able to call it mine. After learning of my agent (a guy who, as my cousin Marcia would say, wreaks of mensch) and his permanently broken and dependent son, I looked at my husband who had lived a life full of adventure and free will and thought, well, fuck it. Onto the next one.

We looked at several more properties that day, none of which, as I suspected, grabbed us as much as the first two we’d seen. On our way home, our agent called: the carpets in the loft had been soaked mistakenly by the carpet cleaners. The owners (a corporation that had developed the building for condos 10 years ago before the market crashed, and had since been operating it as apartments, only putting them on the market now) would replace them. There were no leaks. This was a simple fix. 

After a flurry of texts with my sisters and my beloved Sara, all of whom assured me that, yes, they would feel safe and comfortable driving and parking there (I am not an arrogant liberal when it comes to the dangers of living in parts of the city of St. Louis, many of which boast the highest murder rates in the country), we made an offer the next day. 

Our original dream was to come to St. Louis, find a cool loft in a cool part of the city and pay cash for it. Somewhere in my dreams of a charming Maplewood house, I forgot that part. Life, as it turns out, wouldn’t drop it. That is precisely what we’re doing. To say that this development had added some sunshine into our life is an understatement. The place is so extraordinary to look at in photos that when I showed my parents (my father, I’m sure, a bit distracted by its zip code) were stunned.

“Oh for heaven’s sake,” Deborah said when she saw the downstairs, the attached old converted stable that is now a sunny vestibule with the original horse head on the front. “That place is perfect for you.”

It’s quite the spot. It is, in many ways, our dream home. Herbert is besotted. To see him happy churns my heart in ways that I haven’t felt in months; since he started feeling sick, I think. There are millions of people worldwide who will never know this feeling of love and relief. I am privileged as hell to be one of few of them who does.

3. My dad and I took Grandma out for breakfast last Thursday. We went to the IHOP near dad’s where he’s been going for decades. She was chatty and funny. She looked at pictures of the new condo and said, “We [she meant her nursing home] takes us to concerts in the park in the summer. You can make me dinner beforehand now!” I spent a good minute during breakfast with my head on her shoulder and my arms around her. 

In the car on the way there, she said “I have plenty of AB positive blood if Herbert needs any.” I suppose she’s thinking ahead, of the surgery he may have that will surely require some transfusions. I thanked her, pausing to reflect on the simple fact that my 91-year-old grandmother is healthy enough to offer her middle-aged grandson-in-law blood like she was just picking up the tab for dinner.

When we dropped her off, I got out of the car to help her out of the backseat. It was very cold that morning, so I wanted to make sure her bones, as agile as hers our, didn’t trip her up. She is going to visit her family in Florida for the holidays, so I won’t see her until January. I gave her a big hug, saying “Merry Christmas” lightly. 

“Look at me,” she said with a sudden seriousness. I did, deep into her eyes. When she saw that mine were free from any flickers of distraction, when our gazes were briefly locked, she said, with the same serious tone: “I love you.” (Also: if your grandmother at her age slowing you down long enough to hold your eyes still and remind you of the seriousness and gravity of her love for you and your ailing husband isn’t enough to fog your eyes up with sweet, brief tears, then maybe you need to reevaluate some of your life choices. Anyway...)

4. I texted Aaron pictures of the new place and he said: “You won the real estate lottery.”

5. We had dinner last night with Herbert’s friend Aaron from North Carolina. His wife is lovely (and brilliant: she’s a Monsanto employed microbiologist working on projects that I couldn’t even really understand, let alone have a master’s degree that qualified me to do them) and their sons are adorable. Dad, when we were leaving, flinched that I was taking them some brownies I’d made in a Rubbermaid container.

“You’re bringing that back, right?” he said in the tone that told me that he was trying to keep things light, but that he was a little concerned about the fate of his container. Deb intervened (”Take that thing with you, Rachel!”) and instead of swapping out the container for a ziplock, we went out into the single digit weather with our brownies in a bonafide plastic container.

During dinner, we joked about Curt Parker’s jar obsession. We told Aaron the story about the container. 

“He CAN laugh about it eventually,” I said. 

When we were leaving, after I watched Aaron and his boys play bears and camper in their living room (Aaron being the camper hunting the two runty bears crawling around and growling up at him), his youngest, a sweet baby with fat cheeks who is roughly Dot’s age, ran away with Dad’s now empty container. 

“That container is really important to Rachel’s Dad, Miles!” Aaron said, patiently but sincerely, to his son who refused to give it up, chasing him down to take it away from the tired and crying baby. 

I told Dad that story this morning. To my point his reaction: he laughed nearly to the point of tears.

“Rachel Elizabeth,” he said snorting, “that’s a good one! Boy, is that ever funny.” In the event that we all forget just how much Curt Parker can laugh at himself, he does it to the point of tears.

6. The Thursday I had breakfast with Grandma, Stephanie’s BFF Irvin was in town doing a book signing of his first cookbook, a gorgeous book full of complex and tantalizing desserts inspired by the success of his baking blog. Lacey and I met Stephanie, Marcia and Sara at the art museum and ate dinner together at a Mexican restaurant across the street from the bookstore (Left Bank Books) that was hosting the signing. 

We ate tacos and Marcia took my casual jokes too seriously, which makes them even funnier. I joked about not wanting to live in Kirkwood because we’d be the only childless couple, rendering us mostly friendless. Marcia was mortified. 

“But you’re both so NICE,” she said. “WHY won’t anyone be friends with you?”

When even the slightest hint of sarcasm generates this response from her, I just do it more. It’s amazing. 

Sara told me that Aidan hid the rest of his Halloween candy in his dresser. When she caught him, his response was to shrug his shoulders and say, “I don’t know what to tell you, Mom. You just weren’t letting me have any more, so...that’s what I did.” He said it, she said, unapologetically, as if she had marginalized his choices SO much with the no candy rule, he resorted to this.

“He should be a lawyer,” Lacey said. 

Moments like this, when I’m together with these people talking about little moments and the children we all love still feel like huge celebrations to me. They feel momentous and singular. Even as more and more of them stack up together, they feel like birthdays, all of them.

The signing was fun. Irvin, the author, saw my solo show in San Francisco with Steph in 2009, and that was the last time we saw each other. I feel like if you’re living a life when every time you see an old friend, you’re celebrating each other’s dreams, life is still stacking up pretty well. I bought two, one for me and one for my Aaron (who loves to bake) because I know he will appreciate that I got the book from Steph’s bestie at an indie bookstore in the Central West End. 

Steph’s pal Jane (who told me at the belly dance party this summer that I could stop trying) was there with her boyfriend Brock. Lace chatted with the three of us, and the subject, somehow, went to mothers. Brock and mine may have swapped stories about how to ruin your children based on their similarities. It was oddly coincidental, but goes a long way to my theory that narcissism is more consistent than sunrises and far less dynamic, especially when you throw in alcoholism. (To any addict reading this: darlings, we all have your number. You’re not special. You’re not a snowflake, and once we see therapists, we all get how to deal with you.)

I loved that something that already felt like a celebration turned into an actual celebration. Irvin made the cake that is featured on the cover of his book. Of COURSE it was a celebration; there was CAKE (filled with marshmallow creme and fashioned to look like a giant Hostess cupcake). 

On our way back to the museum parking lot, I had to chide Stephanie for being the world’s worst navigator. 

“I get so distracted,” she said. “But I basically pretty much know where I should be going.”

“That is precisely what makes you the world’s shittiest directions giver,” I said. Everyone in the car laughed lovingly because, honestly, sometimes it is a relief to remember that Steph is, indeed, flawed. 

7. Steph made us lunch at her house last Sunday. She made Nepali chicken and rice. We spent the afternoon looking at the gray outside. The temperature dropped into the teens that week. The afternoon with her felt like she was readying us for the cold to come.  I told her how much I loved the cashmere poncho she brought back for me from Nepal.

“I wanted you to cover yourself in something delicious,” she said. She was half a world away and a monster was winning the presidential election when she thought of me and my husband’s brittle lungs, our fitful and painful year. It will mean more to me now, of course. It will mean so much more every time I pull it on over my head. 

8. I spoke to Raelle last week for the first time in nearly two months. She’s been ignoring my texts and phone calls for the most part. I finally sent her a single text after she hadn’t at all reached out after I told her that we sold the house and bought a new one. “Where. You. At?” was all my text said.

She responded with a three-minute voicemail full of tears and anguish. She has been, she said, depressed. She said that she didn’t want to burden me with her sadness, and that feeling alone made her more sad. She sobbed at the end of the voicemail. She said she’d disappeared into the project she’s directing, acknowledging her addiction to work. She said she’d call me on Tuesday. Then, she hung up.

We have been friends, I counted recently, for over 27 years now. Instead of anger, I gave the situation pause. I told Herbert about it, more so he’d know that she’d been depressed and distant than anything else. I was hurt, I said, but I wasn’t going to get angry with her. In my mind, I was going to hold her to that return phone call on Tuesday that she promised me. I let the rest of it go.

She did call me on Tuesday. I was reminded that when your life is full of dire, grave circumstances, friends around you (the good ones) often don’t want to bother you with what they feel are trivialities. If this happens to you, you should know that those people are golden. Open the door and remind them that you are an adult, that you can maintain your own boundaries and that you can assure them when you reach moments where you are incapable of listening to their hurt, when you are so overwhelmed by your own pain that you have no room for theirs. 

When my mother was ill, I had several friends who felt completely comfortable in calling me and sharing their boy problems. The lack of self-awareness is always staggering in those moments. Now, I would simply excuse myself from the conversation and never speak to that person again. (As it turns out: 0 of those people who called with boy problems are friends today, all victims in some way of my reasonable standards for friendship.) Then, I was lonely and isolated in Denver with a dying woman whose cruelty to me throughout my life knew no bounds. Then, I needed the distraction.

Today, I only have friends who feel guilty for their humanness in the wake of Herbert’s illness. I had the same conversation with Jen who said, essentially, that her problems didn’t amount to anything compared to mine. She was wrong, of course. Her problems (this chat, I think, took place in September) were substantial, having to do with her insensitive, broke, demanding, homeless and child-like mother. 

“I am an adult,” I reminded her. “I can tell you when I can’t take it.”

I said the same thing to Raelle, who equivocated what she was going through with my reasons for disconnecting with my cousin in Los Angeles. I reiterated the extenuating circumstances with my cousin, about the behavior that had gone for months unchecked, about her tendency towards selfishness that I cannot tolerate.

“This isn’t that,” I promised Raelle. “You are no burden, I promise.”

Only then did she feel comfortable in sharing what had triggered her depression this time. It’s a beast that she wrestles with often. I’ve seen it overtake her many, many times. When we were younger and more sparkly 20-somethings, she often felt like she was failing her friends when the darkness arrived.

She is as charismatic as they come and she always felt it her obligation to bring the party into whatever room she entered. It’s been a journey for her to learn that the people closest to her love her for that, but don’t expect it all the time. She’s past that now. She is just lonely and in a new city; even if New York feels like home to her, it hasn’t been for two decades. The last time she spent months in a row there (the summer my mother died) she was at her worst mentally and spiritually. 

She said that coming back has made her face more than she thought she would. Depression always finds cracks and hisses its way in. Rarely, at least in my experience, does it pre-announce its arrival. It just shows up, unwanted, unannounced. Usually, by the time you know it’s coming, it’s too late. It’s there. crushing your limbs you like a pile of wet hair. 

She and I both suffer from the same triggers, the same type of self-esteem issues. She and I both are strong women, women who seem like nothing, not a train, not lung disease, can stop our progress. This is the secret we share, that we have always shared. I know the raging voices in her head that say awful things to her because they are mine, too. 

The moment you awaken to the knowledge that those voices will never go away is both heartbreaking and freeing. Mine came in 2006. I was writing in a journal, a private one I’ll never show to anyone. I wrote the words “I have no self-esteem” down and two invisible hands that had encircled my neck since childhood suddenly vanished. 

There is freedom that comes from knowing you have to live with the constant threat of disappointing yourself. Raelle and I will never silence the voices that assure us we are awful, terrible failures. We will mostly, though, successfully drown them out with other things that remind us how wrong those voices really are. 

Sometimes, though, life intervenes and the things that help drown them out are silenced: by a move (which we both just did to places that feel like home, but, really, aren’t; not yet anyway), by illness, by an election that has left everyone I love feeling shattered and terrified. She says that she now understands that the broken in her, like me, mostly stays broken and you fix the things around it so you don’t notice it as much.

I made her promise not to hide from me. You have to do that with friends who vanish into depression. Make them promise to at least send you a text or an email. They have to announce themselves, no matter how small. This is especially true for the friends, the friends like Raelle, who are managing so bravely. 

(Do what you will with your friends who surrender to self-destruction.  At some point, boundaries are all that matter with those people. I am not suggesting enabling.) 

I am saying that now, right now, you have friends who forgot where the light is. They feel too ashamed to ask you to find it for them. If that person is, like in my case, your oldest friend who is so worthy of love and compassion and understanding and clarity, remind them that you, with your own fallibility and fractured sense of self, if nothing else want to know where the light is, too. 

Call each other. Hold hands in public. Cry together. Tell your broken friends who are trying to hold it together every day that it’s okay to be lost. We all are, really. Right now, there is no clear path. Fragile people are going to suffer terribly in the upcoming years. That, if nothing else, is certain. So, hold them. Hold each other. Don’t be angry when people try their best and, momentarily, fail you. 

“You have to just tell me that you got my messages, okay?” I said to her. She said she’d try. She promised she’d try. I told her that it was only the sound of her voice that I needed, even if it was crying. Sometimes, the crying voice of your imperfect friend is the most perfect thing there is. 

I think that my friends forget that what I mostly hear, all day, every day, is the constant sound of Herbert coughing and gasping for air. That along with Herbert saying “David Bowie died” and Hillary Clinton saying “I concede” were the worst sounds of 2016 for me. After 27 years, even when Raelle sounds temporarily defeated by all she faces, her voice, the familiarity of it, reminds me that I can survive anything.  

[raitchparker]

Wednesday, November 30, 2016

This is the longest I’ve been away from writing in this blog since I started it back in July. These days are hard for everyone right now. The country, the majority of whom voted for Hillary Clinton, knows its standing on a precipice. With each day, new announcements of Trump cabinet appointees greet us, and we collectively gasp in horror. 

We are all afraid now. I’ve been reading a wonderful journalist named Sarah Kendzior, a journalist who lives here in St. Louis. She’s been saying for months that he had a good shot of taking the White House. No one has any confidence that things aren’t about to go sideways. I can’t bring myself to write any of it down yet, because this, as far as I’m concerned, is the honeymoon. While I’m not one of them, there are people who are expecting a lot of us to give him time, a chance to lead. 

He’s a fraud, of course, which has not come as a shock to the millions, and the vast majority, of the Americans who didn’t vote him in. There will be great power vacuums that will appear quickly because his side, who in all fairness didn’t expect to win, isn’t prepared in any intellectual or logistical way, to fill them. The men who are already DC insiders, along with some of the most terrifyingly rich white people on earth, will step into those vacuums. We will demand transparency and not get enough. 

Good journalists are going to be silenced. There are rumors of crackdowns now. It is impossible to be afraid. It’s heart stopping, how bad we assume it will be. 

Then there’s the matter of Herbert’s failing lungs. We were discussing lung transplants on November 1 and one week later, President Elect Trump became a reality. I needed a Clinton win to protect his healthcare. Now, I have to worry about that, too, and the cost of his medication and ongoing treatment. 

There are rulebooks about living in uncertain times. They are meaningless until you apply them. I started the week out feeling like I was drowning in fear. I know why. I was triggered. 

Dad was listening to alt-right radio in the kitchen the day after Fidel Castro died on Monday morning, Normally, Dad shuts off the radio when I come downstairs. Monday, he let it play. I have Cuban friends. Most of them think of Castro as a mixed bag, who was an isolationist brute, but whose hand was largely forced by the west. He did do good, and quite a lot of bad. Cubans can still remember the man he overthrew. There is some gratitude there in some corners still for that.

Those people are not at all influencing the sentiments of the alt-right in America, or so I learned on Monday. I was staying calm, not without being slightly offended that Dad, who normally would have silenced that awful bullshit so I could make Herbert and I make breakfast in peace. 

On Monday, he didn’t. When I heard the main guy (if it’s Fox News Radio, although I don’t know if it is or not, it would be that drooling stupor of a moron from Fox and Friends, the guy who isn’t Steve Doocy, the guy with the fluffy hair and the frozen face) say “Up Next! What’s happening with Obamacare,” my heart caught. 

It doesn’t take much to trigger a woman with a sick husband during the dawn of Trumpism, especially when discussing the fragile future of affordable health insurance for sick people. I’ve been feeling soggy with grief since the election. I think anyone whose husband was evaluated for a fucking lung transplant the week before Trump’s victory is entitled to some soggy, grief-filled days. 

“Dad, please...I can’t listen to that right now.”

Dad was chopping onions for a soup he was making. The radio felt like he was taunting me a little. I felt like a sucker for letting it happen, but there I was, asking him to turn it off.

“I’m not in a good place to listen to someone with ideological views that opposed to mine discuss affordable healthcare right now.” (I gave myself points for coming up with that.)

“Okay,” Dad said. We have a success rate of 0% when it comes to moments like this. He’s exploded at me over politics more times than I can count. It is in those moments that his sensitive and terrible temper is at its most obvious. 

“I can go upstairs,” I said, “if you don’t want to turn it off, but I can’t listen to this right now.”

My father, in his infinite wisdom, said: “You can go upstairs then.”

So, now, two things: 

One: This is Curt Parker’s house. He paid for it. He worked hard to pay for this house. I am aware that I am a guest, generously, in his house. I’m a good guest, but I’m cooking in his kitchen, I’m bathing in his bathroom, I’m sleeping, quite literally, in his bed. 

Two: It’s to my credit that I did NOT say: “What’s the point in being Christian when you can still be such a dick at the same time?”

Dad was not an easy man when I was a child. He was loving, fun, creative, and affectionate. He was also impatient, quick to temper, and a big advocate of loud yelling. He could be a brute. He had no patience for his young daughter and that made me resent him. 

He’s gotten softer with age, but his bite, as I learned when I first got here and he was so grumpy and irascible, OG Curt is still, very much, in the house. I put away all my food, and brought my tea upstairs. I walked into our bedroom, where my sick husband, anxious about seeing his doctors the following day already, sitting up in bed.

“Dad and I just had our first post-election squabble,” I said.

Then, I cried. I just let it out. These moments are to be expected right now: the tension over politics where Trump is concerned is a razor blade in more houses than mine. 

“This isn’t normal,” I said through muffled sobs, Herbert stroking my back. “You being this sick. Trump being president. None of this is normal.”

I borrowed that from John Oliver whom I thought pitched it best on his episode, his last of the season, that aired the Friday after Trump won. He said:

“Optimism is nice if you can swing it. You've got to be careful, because it can feed into the normalization of Donald Trump, and he is not normal. He's abnormal. He's a human 'what is wrong with this picture?' He sticks out like a sore thumb. And frankly, he even looks like a sore thumb. So giving him a chance in the sense of not speaking out immediately against policies that he has proposed is dangerous, because some of them are alarming."

I collected myself eventually and went back downstairs. I made a normal breakfast and Herbert had coffee and I had a conference call with my friend about a business we’re starting. Had the call not been scheduled, I’m sure that Herbert and I would have gone out somewhere for breakfast so I could have avoided waiting in our little room for an hour before the end of Retard Right Radio. That night, Lacey came over for dinner and the family watched “Elf.” Dad and I are good at sliding past our differences. We’ve had years to perfect it and, at least, we both forgive each other. 

Herbert and I had a long Tuesday. I started it with another call with that same friend. At 11:30, Herbert told me his doctor’s appointment had been moved up to 12:30 so we had to scoot. We met another doctor in clinic whom we both really liked. The program coordinator, a remarkable nurse for whom I’d name a building if we had money, was there, too. Herbert is starting drug therapy now, too. 

She will wait to coordinate the insurance paperwork until we change insurance carriers. For now, for 2017, we have decent, affordable coverage that will pay for Herbert to see these people. For now, we have that.

This is where those rule books come into play. My favorites are the Yogic scriptures, who just tell you to stay present. The Sutras are truly a playbook for staying in the moment. It’s hard as shit to do when your mind starts doing jumping jacks and fills itself with magical thinking. 

Magical thinking is distracting and inevitable when you’re afraid. It is my minefield right now. One night this week, and I couldn’t tell you which one, Herbert said to me:

“I’m in a shitty mood today.”

We were in bed, watching streaming something or other on our Apple TV. (OTP TV Devices should have the tagline; “Now making it possible to live with your conservative parents a little more bearably.”) He had a scowl on his face, which sometimes also signals that he has a headache.

“Is it about your health? The situation in the world,” I asked.

“All of that,” he said. He elaborated that getting closer to doctor’s appointments made him anxious (this must have been Monday then). I said:

“There would be something terribly wrong with you if you didn’t have the occasional shitty mood right now.”

We held hands through it and watched good T.V. because we live in the future and I became a bigger fan than I already was of Herbert’s stunning spirit. 

By last night, a day full of doctor’s appointments, though, I was shredded spiritually. I’ve mourned a parent so I know what it is to be inconsolable. I knew what I was heading into mood wise, even when we were going to bed. 

In the midst of premium HBO TV programming, I felt a shout in my head to reach out to someone. Not just anyone, but an old friend from my San Francisco days. We haven’t seen each other in years, close to twenty by now, but we have knitted a friendship of sorts back together on on Facebook. We’ve at least texted back and forth.

I picked up my iPhone and instinctively typed: “Is there a time this week when I can hollah at you.” I said. 

Within minutes, he said: “I’ll call you tomorrow at noon.”

At 2 p.m. this afternoon, my mood had improved but I was hardly turning the world on its ear. I made Herbert and I breakfast of frozen waffles and maple sausage. I wrote a paid blog. By 2 p.m., after I’d spent time looking at houses online and editing, Herbert went to his friend’s house to play some music and I was sitting on my bed, crying, waiting for my friend to call.

“Greetings from California,” he said when I answered the phone. “How are you?”

“Not good,” I said. 

Here’s a picture of the pile of tissues I generated during that call. 

He has survived because of AA meetings, so my instincts that drove me to contact him were on the money. He coached me through what was a burst of tremendous grief with grace and patience. 

I told him that I felt alone because my support system needs my support right now. I said that marriage is both a selfish and selfless act, but that when one side of it is down, the other does all the heavy lifting. 

“Yeah,” he said. “I know that one.” He said that in the Blue Book, it mentions how despite how you can surround yourself with people, you have to accept that you still have to know how to be alone with yourself. 

“I needed to talk to someone whose been through worse than me,” I said. 

“I’ve been through terrible shit for sure.” he said, laughing because that’s an understatement. He’s black, with a history of childhood abandonment and meth abuse. So, yes. Terrible shit. 

He’s come out the other side, and he’s now a pretty wise and patient guy and, according to people I trust, a remarkable bass player. He’s working at a hospital, digitizing files and records, and likes it. Today, he was strong and available for me. 

We talked a lot about politics. I said that I hadn’t processed how hard it was to have the lung appointment and Trump’s victory a week apart. 

“That’s a collective problem, though,” I said at one point.

“Yeah,” he said, “it is. But it’s still hard. And we all have to reach out to each other right now. it’s important.”

We have to love each other. That’s how it always works. Love and being present are all we have now. It’s all we ever have. 

“I’m going to call you this weekend to check on you,” he said. 

“I appreciate that,” I said.

I am circling my wagons, I guess. I’m finding the voices I’ve always known to be wise and kind. I’m calling them all, I’m saying hello, I love you, I need you, I posted this on Thanksgiving:

“This has been a complicated year to say the least. Because today is a holiday, I'll speak in lightly coded language. Today, let's be gentle with ourselves. Let's be gentle with each other, even if it's only for one day.

Today, I hope you can steer yourself towards the things for which you have undying and unyielding gratitude. That's my plan, anyway. I'm always particularly grateful for my family. I am unspeakably grateful that this year, if nothing else, a reunion with them is only a phone call, and not a 4 hour flight, away. That is no small feat. It took a lot of humility, patience, and three decades to get here.Today, take time to say thank you for small things because they are big things. Your presence in this life, for example, is a big thing. Your heart is a big thing. Your imagination, your spirit, your drive, your principles, your moral standards and your wisdom are big things, too. If you can read this, if you can even see it, even if I haven't seen you in years, please know there was a time when I looked up to you. When I looked to you for guidance, for inspiration, for hope, for example. Even if I did that in silence, it happened. At some point, even if it was a moment, you helped me find my way. I may never have told you, but it happened. I promise you, that moment happened.

Today, know that I believe that you are remarkable. You have taken up permanent residence in my heart and imagination. During the good years, knowing that makes me giddy. During hard years, years like this one, it makes me thankful.

Today, for you, I am grateful.”

I have to believe in love. I have to believe that good people will contact other good people. I have to believe that all of us good people will turn the tides of Congress in two years and that we can, maybe, stave some of this off. I have to believe that we can. 

Mostly, I have to believe in this now moment. I believe in the other people who know the value of that. I believe that we know how to talk to each other, with delicacy and grace. I have to believe that I will be the right kind of organizer and cheerleader. Until that all works out, at least I know that my friend’s calling me this weekend to make sure I’m okay. Because, really, I’m not. I’m not because none of this is normal.

[raitchparker]

Friday, November 18, 2016

When Herbert and I started dating, I was an avowed non drinker. I didn’t stop drinking because I had a problem with alcohol (shocking, considering my upbringing), but because it started to make me feel physically awful. I’d cut considerably back in 2004-05, and then by ‘06, I’d completely quit. 

I still don’t drink much. The run of rose binging I did when we first got here is a bit unusual. It still doesn’t really agree with me. Herbert, by contrast, when we met, still liked to, as he would say, get a good buzz going and listen to music. 

He was a very utilitarian drinker. He does not, as in at all, like the taste of alcohol. He drinks solely for the affect. When he moved in, he earmarked maybe 2 nights a week and would drink about a half pint of vodka and a 24-ounce can of Bud Light. That was his routine.

We never went out for drinks. Even when we went out to eat, drinks were never in front of us. Herbert didn’t see the point in having drinks out anywhere. 

Herbert was an agreeable, funny, charming drunk. Those aren’t my words. They’re our friend Martin’s. Martin has a house in Palm Springs and would host us regularly. Martin has been AA sober for about 20 years. His husband likes a cocktail and they entertain, so there is always booze in the house. I caught Martin on one of those weekends mixing up another vodka soda for Herbert.

“Are you getting my husband drunk?” I asked.

“I am. He’s so funny and charming. I can’t help it.”

Herbert has been a man of substantial appetites in his life. I never felt like he overindulged in booze. He could, however, drink most people I knew completely under the table. He had a few friends that he nominated as fellow “professional drinkers” who he’d throw down with maybe once or twice a year. 

The sicker he’s become, the less and less he drinks. Alcohol interferes with his breathing. Beer in particular seems to make him choke. He cut out beer entirely quite some time ago and has been sticking strictly to vodka and soda. He has cut back even more since we got to St. Louis, telling me that he mostly just feels like going to sleep as soon as his buzz wears off.

We got the documentation yesterday from Barnes about his transplant evaluation. This is also the first week that he started his pulmonary therapy at the hospital. In order for him to be considered for transplant, he officially needs to quit drinking. 

When I asked him how he felt about that, he said “I was going to do it anyway.”

On our way home from his second therapy appointment yesterday, I was taking in the unseasonably warm weather (it was nearly 80 degrees), with the windows down. It was maybe 3 p.m. and I said that I thought I should enjoy a glass of wine on the patio.

The first hard frost has happened, and a warm front brought in some heat. When you live in muggy, bug-filled St. Louis and you can sit outside on a warm day in the fall sans bugs, you do it. 

I asked Herbert if he minded my stopping by the market to pick up some nibbles and a bottle. 

“Maybe this should be my last official drinking day,” he said. 

In the St. Louis grocery stores, bottles from the same brands labeled “seltzer” and “club soda” sit next to each other on the shelves. It was one of the first jokes we made while shopping together when Herbert was picking out a bottle of cheap vodka and soda. Because there’s no difference in price or content, we humored ourselves by buying both and setting them next to each other on the counter.

I thought of that while I pondered, with a surprising sincerity, whether or not he’d want seltzer or club soda for his last drink day. I almost bought both again. I settled on the seltzer for reasons I still can’t name. 

We pulled the plastic adirondack chairs out from under their protective plastic sheet for one more go around on the patio this season. I poured myself a large, tall glass of white wine and Herbert mixed himself a glass of vodka and...

“Seltzer it is!” he declared, recalling our inside joke. 

We took the dog outside along with some pimento cheese spread (a personal favorite), and Herbert’s favorite rice crackers. It was windy and everything, leaves, trees, branches, wind chimes, was rattling around us. I don’t suspect that Herbert ever thought about what his last drink day would look like. 

Missouri did give us some perfect weather for it. We polished off the pimento spread. Eventually, Dad came out and said, “How’s that last drink taste?”

“Fine,” Herbert said without a note of ceremony. 

Dad quit drinking 6 years ago. It started to hurt his bladder and he said the day after impact was just too great for him. He sometimes has NA beer or grape juice in a wine glass so he has something to toast. 

“It’s no big deal,” Dad said.

“It isn’t,” I echoed. I only missed the taste of alcohol when I wasn’t drinking. The complexity of whisky, the orchestral notes of wine were both things I craved. If you told me that I could enjoy those things without the impact of booze forever, I’d take it.

Herbert kept reminding me that being buzzed has been over for him for a while now. He will miss, he said, sometimes, how fun it was to get ripped on his birthday, listen to music all day while I cooked for him. 

When he said that at some point yesterday, I tried, and failed, to remember what that looked like last year. We were trying to move, so the rigor of open houses and keeping the home spectacularly clean and spotless overshadows everything from that month. I do remember one year, I made him homemade mac and cheese and got fried chicken from the grocery store. 

I remember him telling me how his drinking strategy and eating strategy was all organized. We often started his birthdays with a heavy breakfast at the Pantry, his all-day drinking foundation. This once a year indulgence sometimes included a visit to the one bar Herbert liked in our neighborhood, a true, died in the wool shithole called Hanks which, at least when we moved, had still gone undiscovered by hipsters.

Musically, his birthdays were usually all day bootleg concert and DVD concert extravaganzas. Herbert loves heavy metal, and I remember at least once his saying, “I’m going to play something you’re going to hate, but only for two songs.” We never had people over for his birthday typically. It was just the two of us, loud music and comfort food.

Inevitably, throughout the day, Herbert would gently grab me and hug me and remind me how awesome I was. He lip-synced the Genesis song “Abbacab” to Toby once, in its entirety (especially funny because he’s not at all a fan of late-period Genesis). Another birthday, he declared that he lived “with the cutest dog on the planet and the hottest woman in the world.” 

Sometimes, things leave your life with great fanfare. Other times, you usher out an era on a quiet back patio in the midwest. Of my own nearly 10 years of teetotaling, I would say to people who looked at me cockeyed and regretfully when I explained that alcohol had suddenly made me feel like I’d been dragged behind train for several days, “It’s fine. I had a good run.”

“I had more than my share,” was Herbert’s version of that, as he sipped down what was left of what was the last cocktail he’ll ever have. 

I remember, fondly, the first time, after I started drinking again (I think that was in 2012 for the record) making us dinner for Valentine’s Day and drinking a lot of red wine for the first time in years. I got a little drunk. Herbert drank his fair share, too, and I took over the playlist. Herbert plugged in a tabletop disco ball he has and I turned our loft space into a little dance party. 

It was the first, and one of few times, that we were really drunk together. I remember spinning the Outkast tune “Happy Valentine’s Day” and dancing my ass off. Herbert, in a rare (and to this day, singular) moment of dancing solidarity, stood up and pumped his fists towards me one by one. 

“This is ALL you do,” he said of club dancing. “It’s no big deal. You dance like this.”

On our wedding night, after everyone left our loft, Herbert and I listened to my dance playlist I’d made. We’re still the only ones who have heard it. We both drank absurdly and he was so entertaining, I strained to stay awake just so I could listen to him. I wish I had it all on tape so I could hear it all again now. I told a mutual friend about it and he said, “Yeah. That sounds like one of his greatest hit nights.”

We’ve said goodbye to a lot of things this year: Los Angeles, our home, the dream of Herbert’s full recovery from lung disease, our friends. Yesterday, we said goodbye to those moments together. There won’t be any more. It doesn’t feel like much of a loss. It is, to be sure, the end of an era. As Herbert has said many times, and will probably say a few times more, it’s okay. He had more than his share. 

[raitchparker]

Sunday, November 13, 2016

Dear 2016

Because the events of the last two weeks have been so mind boggling, so staggering, so disorienting, and so demanding of every ounce of patience and strength I can muster, I’m going to summarize the last two weeks in the format of an open letter to the year 2016, especially as it winds its way towards a close.

Dear 2016,

You told me everything I needed to know about how you’d proceed as soon as we rang you in. A mere 10 days, in fact, after you kicked in, we all learned that a truly great man and my musical hero, David Bowie, passed. I felt like I’d been stabbed. The grief was real and deep and immediate and I had no idea I could grieve like that for someone I’d never met. 

It was a spiritually cataclysmic event for me. He’d put out maybe one of his greatest albums, certainly the greatest of his late career, on his birthday just two days before his death. I’d only just started to sink my teeth into it. It is a voluptuous record. Herbert, who isn’t even a fan, described it as elegant. It is, without question, both. We listened to it together for the first time on January 9th. It is an album that Pete Townsend, Paul McCartney, Mick Jagger and anyone else from that era would have killed to make. Current, provocative, smart, and still true to his miraculous legacy. It is still outsider’s music. 

I couldn’t wait to start talking about this new album from this wondrous and newly turned 69-year-old who ended his 60s with a definitive milestone. Of course, he was dead by the next day. A line from the song Blackstar: “Something happened on the day he died.” Indeed. A lot of people around the world felt a certain kind of heartbreak. I was right there with them.

2016, you know this already, but Herbert continued to get sicker and sicker. Maybe two weeks after Bowie passed, I told my husband that we were moving. I’d had enough of being broke, of living in a condo I couldn’t afford, of living far from my family, of, in essence, living in L.A. I remember telling him in the car on our way back up from San Diego, where we visited a dear friend who was in the process of pulling up roots and heading back to his home city of Sioux Falls, South Dakota. 

Herbert was relaxing in the passenger seat and we’d hit a headwind of stop and go traffic at a time on a day of the week (Sunday, late) when it had no business being there. 

“I’m putting the house on the market,” was all I said.

“That happened fast,” he said.

I think I said something reactive and pigheaded like “We’ve been talking about this for two years,” and his response was a calm, “Look, I have been completely passive about this the entire time. I’m not going to fight you. I understand.”

And so, me and my wheezing husband set about to getting the house ready to list. It’s not a big place, but studio lofts collect grease everywhere. The inside of the oven looked like we’d roasted an entire deer, hooves and all, and left it there to rot. We had things to fix, scrub, polish, and paint.

We picked a listing date. I kept sobbing about David Bowie when I had time and a corner to hide in. It was silly and I felt like an idiot, but it was real. It’s hard to get older and lose your heroes. No one tells you that enough when you’re young.

Oh, but, 2016. You weren’t quite done telling me, were you? Me and a bunch of other freaks, faggots, fairies, and sinners from the 70s and 80s had another hero you had to grab. Only this one, a man we all assumed was sober (because he insisted as much from the moment he put out his first record, “For You” in 1978) withered away and collapsed from an addiction to painkillers in his own elevator on April 21. 

They were two sides of a similar coin, Bowie and Prince. A lot of us carried that kind those types of coins around with us. I did. I saw the “Purple Rain” Tour in 1984. When Prince finally wandered close enough to our side of the stage that I could see his freckles, I literally swooned. Prince made this girl almost faint from at least 5 yards away when she was 14. That’s how powerful of a performer he was. 

At 57, he was gone. No warnings, like Bowie. Too young. Too soon. Too tragic. And withered and in pain. 

I cried less that time because the grief wasn’t as shocking. It was also more compartmentalized, somehow, because I didn’t listen to Prince as much as an adult. I thrived on him during high school and college. I saw him twice in the 2000s, however, and both times felt like gifts. I still loved him. 

Both times, Herbert told me. Both times, I yelled “No! No! No!” the dramatic inner teenager taking over while I googled the news. It was no fun, having them both go side by side like that. It left the world--my world--without the moon and the stars. 

2016 is the year that we heard “lung transplant” for the first time. I cried again. Many times. I know the difference between this grief and the other. When you grieve the loss of a loved one’s health, especially a spouse, there’s a snake that lives inside you. It just shows up as soon as the bad news comes. It strangles your heart and your eyes. You can’t see anything else but this awful illness that guarantees you’ll never feel like you have any control again. 

I carry that grief around with me all the time, but I’m getting better and understanding how to manage it. The day we learned, at the hospital, that Herbert will not need a lung transplant this year, thank fuck, I got a text from my broker that we had a cash offer on the house.

I came home and said those things in order: Herbert doesn’t need a lung transplant this year and I have to go downstairs to email my agent because, no, I may not have to keep paying the mortgage on a house I don’t live in anymore. The next morning, the buyers had come up to a price that disappointed me (and $35k less than the offer I entered town with) but it was time to compromise so I did. We did it. We sold the house.

I started to believe that there could be a window of stillness. The financial stress was over. For now, we knew and understood Herbert’s condition. He was getting treatment at one of the best lung centers in the country. We can stop holding our breath at least. We are learning to accept the transplant, the ruined lung tissue that will never recover. 

It felt like we could get excited. It felt like we could drop our shoulders and unlock our jaws. We could buy a house now. We are finally pushing ourselves closer to the life we’re seeking for ourselves here. 

In the background of all this, 2016, is the most fucked presidential election of my lifetime. But the polls, 2016...the polls told me that the woman would win. I don’t exactly stand with this woman, but I would have stood with a bridge troll in favor of that orange-hued, petulant, spoiled-rotten man-child that was running against her.

The polls told me she would win. Handily, they said. We stood in a long voting line with a funny man in a black trench coat in front of us at our polling place, the elementary school where my sisters had both gone. He was a teacher and trying to call his school to tell them that the lines are so long, he’s going to miss his second class because there was no way he could vote and get there on time.

“It should be a holiday, right?” he said, turning to us. Maybe he saw my shaved head. Maybe our outfits are a give away. Maybe he noticed Herbert’s ponytail. 

“It is in the rest of the civilized world,” I said. “I still have no idea why it isn’t here.”

“Come on,” he said, “you know why.” He said this in a way that made me think that he, too, was voting for the woman. 

I brought salad to my cousin Marcia’s on election night so I could ring in the woman’s victory with my liberal Jew relatives. I actually said that to her in a text. It made us both LOL in message form. 

We were all so confident that the woman would win.

What can I say, 2016? Nate Silver said she would.

My cousin Jeff wasn’t so convinced. “I’m worried,” he said, grabbing pizza and going back into the living room to watch the returns come in while Marcia and I made salad and put out plates for pizza. I hugged my cousin Sara and her son, a boy who happens to be black. 

I reassured Jeff that we had no problems. Nate Silver! I reminded him. Oh, the articles I’d read, I reminded him. We’re good. The woman. She’s winning.

Of course, that’s not what happened at all. The woman had her ass handed to her in the electoral college. He won. Orange Man Child won. 

Once again, 2016, you broke my heart in ways that I didn’t think possible. Every time, it seems, you find another horse to kick me in the chest. I sobbed. As soon as it was obvious that all hope was lost, I broke into sobs. What will happen to my husband, who has a very, very, very substantial preexisting condition, and his healthcare? What will happen to all of us now? 

It’s now nearing the end of the year. We only have about 6 weeks to go. The current president, the one we all seem to like so much, is spending the last of his political capital to push a trade deal no one wants instead of fighting for the Supreme Court justice we need. 

People are devouring each other on social media. A man who is as conservative and dangerous as the men who ran the Taliban is now the Vice President, and a man who was just put in charge of President Elect Man Child's transition team. Everyone I know is gasping for air. 2016, you’re choking us out.  

This is where we’ll leave you, 2016, in the throes of despair. I like to think, 2016, that if these things had all happened with a little more breath in between them, I could have handled all of them a little better. But you, you fuck meat of a year, you shoved them all into the same 12 months. You killed Bowie at the beginning and at the end, you may have killed the world. 

I would happily cheers you away with a grand toast on December 31st at 11:55 P.M. but I know what is around the corner in 2017. President Rat Fuck and his band of merry beltway neocon Republicans are getting sworn in on January 20th. Somehow, we all have to survive the first year of his and co-president Pence’s term together. Many of us are still swirling from the last man child who ran the place, and his fumbling use of the English language and the made-up reasons for war, illegal spying, torture, and complete economic failure. It took us 8 years of Obama to get over Bush. And now, 2016...now look at what you’ve done.

You did teach me something, 2016. You taught me to shore everything up. I’m doing that. I’ve slashed my cost of living. I’ve gotten my husband to higher ground. I’ve sold my condo at a time when I at least made some money and got my equity out, something I couldn’t have done for several years after the 08 crash. Somehow, at least, for now, I can breathe. 

Still, on behalf of a lot of my friends, family, people who have suffered so greatly around the world in Syria, in Yemen, whose children have died at the hands of people who wheeled guns we can’t stop anyone from selling, from children who are dying in higher than ever numbers from painkillers they should never have been prescribed, my sweet, sweet husband who will perhaps only see his health continue to decline, for all those people, I have this to say:

Fuck you, 2016. Fuck right off. 

[raitchparker]

Saturday, October 29, 2016

I felt like I spent the rest of the week holding my breath.

We are facing a wave of uncertainty next week. Herbert’s persistent cough, ongoing evidence of his failing lungs, remains a constant. This doesn’t feel in any way like a journey. I doubt I’ll come out the other side of this, look back, and say, “remember when you spent all day in bed and we worried about whether or not you’d need new lungs?” 

Illness brings with it nothing but uncertainty, unless it is a fatal one. I learned that from my mother. Death brings certainty, not that there’s anything remotely easy about that either. I’m already learning to stop thinking in terms of progress because with that brings hope which only exposes more uncertainty which then festers, sours, and burps itself back up in the form of anxiety and depression.

So far, that’s what I’ve learned, what a dangerous thing hope is in a situation like ours. “Maybe” is a curse word. It’s hard to explain that to people, especially those who think it’s their job to direct optimism in our direction.

“Maybe,” they say, “you’ll find out that...” and I nod and smile and listen because it would be shitty and unthinkable to do anything else. Yes. Maybe. Maybe a lot of things. There’s no stillness to any of it. These feelings are exclusively turbulent, unsettling, painful, paralyzing, and scary.

I am accepting the uncertainty of my feelings, too. On Thursday, I was unsettled by my stack of mail: my mortgage is due; I have to pay a $600 assessment to our HOA; Herbert’s medical bills (which are, granted, a tiny fraction of the $16,000 brochoscopy he had) are coming in; his bank account is officially empty; the medical insurance we do have is being taken off the healthcare exchange so I have to find a new one. The mail came, I read it, and just like that, the great switch that controls my mood clicked over from “decent” to “fuck this.”

I still made pork chops (they were still good). I am accustomed to being mostly in a good mood. So, when I’m not, I feel like I’ve failed. I had to accept, by the time 9 p.m. rolled around that Thursday, such as it was, was a lost day, forever sucked down into the shitty mood vortex. I managed not to snap at anyone. I told Herbert, in plain language, that I was in a shit mood. Then, shit mood in bed next to me, on top of me, its boot on my neck reminding me always that I would probably wake up feeling like that, I fell asleep.

I woke up on Friday, expecting to be greeted by a gigantic wave of shitty mood. Instead, I felt fine. I got up late, well past 9 (sleeping is my friend), made strong coffee, did some work, got my eyes checked (they’re fine, they’re old, they need reading glasses, which I already knew, so good for me), worked some more, took my car to get inspected (it’s also fine) and then it was somehow time for frozen pizza.

Frozen pizza is my ally right now. We rarely ate it in L.A. because we had takeout Mexican on the corner and because I have just now returned to my pizza town so I have a renewed zest for it. It’s my “break glass in case of total spiritual exhaustion” meal. I keep a couple around also for Herbert in case I’m out and he needs to eat something. It’s hard for him to cook these days. So, we broke the damned glass, ate $8 worth of (two) St. Louis style frozen pizzas and then made good use of our new HBONow subscription. 

If your husband is sick, or your mother has cancer, or you are hemorrhaging money, or you can’t sell your house, or whatever it is is dragging your hope and enthusiasm for your future into the dark depths of despair, you should probably make frozen pizza and dig in for a minute. I promise, if you stop pretending like Oz, with all it’s sparkling splendor, is a thing, and that something great and easy and cake-walk like awaits you at the end of all this suffering; if you accept that this shittiness comes with feelings of great hurt, fear, more fear, and still yet more fear, you will find great moments of peace somewhere.

When those moments, which are sort of unexpected and sometimes hard to replicate, strike hold them tight. Those are the good times to text your sister and make plans to see her. Those are the times to enjoy the stillness in your chest, now absent of our fluttering, anxiety-ridden heart, and hold your husband’s hand while you watch the latest HBO prestige T.V. show (in our case, it was “Westworld” and the pilot was awesome). Accept that defeat is probably waiting for you around the corner. Which, by the way, is fine. This isn’t a journey. You’re not really going anywhere. You are, officially, stuck in the muck of the present, no matter how terrible it is. That’s your reality. 

Friday was Herbert’s friend Rich’s (his oldest friend who died the day we moved out of our condo) memorial service in Utica, NY. He showed me pictures of the friends who had gathered. It’s very hard for him not to be there.

I said this: “I can’t wait until we can, in some way, look back on this period. I’m so sorry your friend died.” 

I don’t believe that we’ll ever really be rid of the worst of what’s happening right now, but it may get better. I can say it out loud to Herbert even though I don’t really have any faith in that, conceptually. I have faith, instead, in frozen pizza, good T.V., afternoon walks and showers. Those have yet to fail me.  

[raitchparker]

Wednesday, October 26, 2016

Yesterday had an ease to it. I cherish those days now because it’s hard to know with Herbert’s health being what it is, with an unsold house that’s costing me thousands of dollars to keep empty, how many of those I can feel entitled to. 

I ran a couple of errands, one of which involved buying Herbert a warm hoodie because 100 percent of his warm clothes are in storage, which effectively means that we don’t know where they are. I took a matt Pilates class at my new little studio (where they forced me to work out to a Creed song, which is a punishable offense in L.A. but one I’ll overlook here) at 5:30 so Herbert said he’d make the chicken for dinner.

We sat down to eat right after I got home. The chicken quarters were a little undercooked, but not by much. Herbert put them back in the oven and slouched in his chair like a man who had just failed his country. 

“Honey,” I said, “don’t worry about it. I’m actually kind of full.”

“I’m just used to our old oven. I thought I left them in long enough.”

“They were just a tiny bit glassy. I wouldn’t have noticed if you hadn’t.”

“I would have par cooked them on the stove like I would have in our kitchen, but we don’t have the right pans.”

“It’s fine. We’ll have leftovers.”

Herbert is not someone who enjoys the feeling of mooching. He has, the entire time we’ve lived together, contributed to our household feverishly in any way he could. Before he got sick, in L.A., he was the primary cook, dishwasher, house cleaner, and grocery shopper. He kept the hard water scale from building up on the bathroom counter. He kept the house from being engulfed in dog fur. He washed the sheets, towels, and took out the trash. He wiped down the exterior of the garbage can. 

If he’d served us some glassy chicken on the bone in L.A., he would have been frustrated, sure, but he wouldn’t have looked like he failed me. He must feel like that all the time right now. I know he does. He will soon have to hand over all $5,000 of his credit card debt to me to manage because he’s out of cash. 

The truth was that I was full. I didn’t need all that damn chicken anyway. He didn’t sleep well on Monday night, so I sent him upstairs to chill out and unburden himself of the shame of vaguely undercooked poultry while I cleaned up. I bagged the rest of the chicken that he had put back in the oven, now cooked to perfection. Our half-mangled pieces looked a little sad now, picked over and mostly eaten. They were telling me something, staring up at me from the fat-filled glass roasting dish about our overall fortune, of being able to walk away from half-eaten chicken because we had enough. Despite it all, despite Herbert’s helplessness, our increasingly financial “oh shit” situation, we have enough.

I signed us up for HBONow because I can’t live without it any more. Look, you try being a liberal in Missouri during the Trump election cycle and living without Bill Maher. We watched the last episode of Real Time where he interviewed Anne Coulter about her latest book (where she defends Trump because she, like him, will do any bit of shameless anything to stay in the spotlight) and I once again contemplated the last time she ate carbs. I’ve used dental floss wider than that woman’s hips. Can someone please feed her? Seriously, give Anne Coulter some pizza.

We started up the rest of “The Night Of” and Herbert left his hand on my shoulder most of the night. I wish he had a spare so I could drive around with it or pick up our dry cleaning with it sitting there. 

This morning (we’re all caught up to today now) I woke up to a giant pot of grits sitting on the stove. I remembered being a kid and feeling actively sorry for kids who didn’t understand the wonder of grits. Missouri is not really grits country. Maybe the southern half of the state is, but not St. Louis. We ate grits because my grandmother is southern and my dad grew up knowing how to make them.

He would, when I was a kid, grate cheese and use a whisk to mix it into the grits and then smother them in butter, salt, and pepper for me. I can still gorge myself on them. I’ve tried to make them as well as he does and I still can’t. 

This is the Curt Parker that I mostly know, the man who leaves warm grits mixed with pork sausage and cheese in a big pot on the stove in the morning. That grumpy guy whom I dealt with almost exclusively when I got here I am certainly acquainted with, but he’s not really my dad. 

Looking back on what is only now maybe two months ago, I know it was his adjustment period. I don’t know, and may never know, why he was so terrified and stressed out when we arrived. I’m sure it had to do with Herbert’s declining health, with our not sold house, with being invaded by a middle-aged couple with a small dog. 

That grumpiness makes appearances, because he’s 71 and he’s always been a little bit that way. Yesterday, though, we were in the kitchen and I was making a protein shake, and Toby stood maybe two feet from Dad, his tail wagging wildly as he looked up at Dad.

“You’re one of his people now,” I said, recognizing the look of love and awe on my dog’s tiny face. 

Dad bent down and offered Toby a hand, which was immediately and graciously accepted. Dad pat his head which fit neatly into his large hand. 

“He really is a good dog,” he said. This is the same man who, when we first arrived and I commented on Toby’s “good dog”-ness, Dad kind of shrugged his shoulders and made a face that said “He’s okay, as far as total pains in the asses go.”

Dad is back to being the guy who loves dogs (he was the primary caretaker of Ruffy, the black mini poodle they had while my sisters were growing up), makes pots of grits, and chats with me about nothing, which I love to do. After we’d discussed Toby’s relative awesomeness, he leaned against the counter while I mixed my shake. I couldn’t tell you what we said. He was easy, and funny, and smiling, and my dad. 

I think my initial frustration had to do with my own fear that he had fully transitioned already into grumpy old man-dom. Of course, coming back here has a lot to do with not wanting to miss out on his golden years. He and I have missed out on 30-plus years of each other’s lives and making the decision to come back for his last solid years was a no-brainer. Still, when we first arrived, and I was greeting with his strange skulking, his hawking over his refrigerator, his utter Virgo-ness about his home’s organization, my first thought was that I’d come too late. 

I didn’t. Thankfully, I didn’t. He is clearly struggling with getting old, as we all do, but he’s not yet completely lost to the ice float of elderly moodiness. That crisp, funny, loving guy who respects and appreciates his kids is still mostly driving the bus. 

I still feel sorry for people who don’t have a dad who makes grits. I’m not being metaphorical about that. I literally feel badly for them. Eating that bomb of comfort food in the morning keeps you feeling full and loved and satisfied for a long, long time. I won’t need lunch today. My dad saw to that before I was even awake. 

[raitchparker]

Monday, October 24, 2016

And then suddenly 11 days bleed together and you find yourself wondering how on earth to peel that week apart. I injured my back a few years ago. What really happened was that my left psoas had become completely spastic and was wreaking havoc on my pelvis. I went to a gifted chiropractor who said: “I have to pull this thing apart so it remembers how to be a muscle again. Right now, it’s like a steel cable.”

I think that’s as good a metaphor as anything else I can think of to describe what last week felt like. PMS, something that for me (as I’ve written) is like having a head on collision with a cinder block wall took over my body. My skin felt like sausage casing. Every time I looked at Herbert, I wanted to start crying.

You can’t live like that. I can’t live like that. I froze, like my traumatized muscles did when I hurt my back. I kept turning to things I thought might help, but I couldn’t turn far enough to really trust them. It was, in a word, terrible.

Monday night, Dad took Herbert, Matt, Lacey, and I out for Chinese food at his favorite Chinese buffet. Of course, in their company, I enjoyed a reprieve. I hadn’t given Lacey the full low down yet on Herbert, but she knew it was coming so I gave her the summary in between all of our trips to the buffet. It felt awkward and forced and I wished I’d waited, but you have to tell family these things so they know these things. There’s no easy or simple way to be the messenger of news of lung transplants when the only day you know you’ll see someone you happen to be eating greasy, overcooked pot stickers (all of which I enthusiastically ate). 

Tuesday morning I met my new dentist, who happens to be, unbeknownst to me, right literally next door to Lacey’s house on Clayton Road. When I mentioned to the receptionist that my sister lived in the neighboring house, she said, “Oh, then you must know Matt Keeney.” Matt and I apparently have the same dentist. I enjoyed the same aggressive friendliness and thoroughness that I have come to expect from Midwestern professionals. It was, easily, the most informed and attentive first dental appointment that I’ve had in 40 years. 

I almost told the hygienist (who was informative almost to a fault) that I needed love that day. And that her thoughtfulness and thoroughness and commitment to her profession was a form of love and that even though no one on earth likes getting their teeth cleaned, at least I knew that this woman genuinely cared about some part of me and that, on that day, that mattered. It mattered a great deal.

On Wednesday the 19th, I had breakfast with my Aunt C. This, to say the least, was ill-advised. I should have cancelled. She lives in Irvine and I rarely saw her when I lived in California. My feelings about her are complex.

She is a ringer for my mother in more ways than I can name. Stephanie has pointed out, and she’s right, that being around my Aunt is akin to a war veteran going to a shooting range. She is one gigantic trigger for me. And she’s fucking nuts. 

I told her about Herbert’s health. I explained that I was flooded with hormones and that I would cry more than I normally would while talking about these things. She wants to be kind, but she can’t help but yank the conversation back, always, to her side of the cave. 

“I can’t,” I said at one point, tearing up and my voice breaking, “see him suffer any more.”

I am happy to say that I come from a family where everyone else (give or take) would know what to do or say at such an outpouring of grief. For her part, as soon as the conversation swung back to her, she broke down in sobs--breathless, face-contorting sobs--because she had to put her dog down a year ago.

What she means to be commiseration always feels like contest with her. She has suffered more pain, abuse, loss, and awfulness than anyone. She has triumphed over all obstacles and, therefore, knows everything. She is the winner of a contest no one else has entered. She, hands down, will always win the imaginary suffering war.

I love her very much. I wish I had more patience with her. I’ve tried very hard over the years to accept that I don’t have any. She’s never done a thing to me, really, outside of being her flawed, fractured, broken self. She’s never done a thing except for remind me of the one person who made me feel like a human alligator.

My mother made me feel like a serpentine, ancient creature of the deep. So does my aunt. I squirm in her presence. I hate the way she talks about her daughter, the sidelong glance she gave me over breakfast when I said something about her daughter being a great mother to her three children. 

“Well,” she quickly corrected me, “she CAN be...”

That I know my mother disparaged me in much the same way to anyone with ears made me want to slug her. Hard. Maybe not in the face, but surely I wanted to leave a mark.

“You,” I wanted to say, “Made her in whatever way she turned out. You married those awful men who abused the shit out of her. You are the destroyer of her self-esteem. If she sucks as a parent (TO BE CLEAR: MY COUSIN IS A PRETTY GREAT MOM) than doesn’t that have some bearing on how you did the job in the first place?”

We ended breakfast in the rain in the parking lot with my telling her the story of the one time I heard my grandfather, the seed of every ounce of bullshit in our family, apologize. It was to me for making me cry for being an awful bully to me once when I was about 19.

“Well,” my aunt said, “that’s more than he ever did for me.”

St. Louis was gray and wet and not at all cold. My aunt was still trying to give me advice lovingly as I headed back for my car. My head was throbbing. I just wanted to leave and she wanted nothing more than my love and approval, two things I have a hard time offering her in equal doses. 

When I got back to the house, Dad greeted me in the kitchen.

“Where were you again?” he said.

“Having breakfast with Aunt C....” I said.

He paused, looking at me sympathetically. 

“I don’t know how you do it,” he said without a trace of irony.

When my mother was alive, starting in the late 90s, Dad called me on her birthday and Mother’s Day to offer me support because he knew I would have to talk to her. If he and I spoke after I’d done my filial duty, he’d say something like “Well, how’d that go?” If he called before I’d done the deed, he’d say something more like, “Well, I’m here if you need a shoulder after you talk to her.”

As much as he can be a complicated, patience-zapping, pain in the ass, he’s loving. My aunts, and my mother, would never know the uncomplicated love of a father. Theirs was a monster of a prick of an asshole. He destroyed what was left of them before there was anything even there. They didn’t stand a chance.

In that rainy parking lot, after I told my aunt the story of my Grandfather’s singular apology (and maybe the only I’d ever heard him issue to anyone, ever) she told me that when she graduated from high school, he took her, his youngest daughter and by far his smartest child, away from her party to the front yard to explain that he would never pay for college because she didn’t deserve it. She was an A student who excelled in science and math. She could have been a doctor. 

She didn’t deserve it. 

The only way to love broken people is to leave enough distance between you that you don’t crush each other’s tender hearts. Mine is so brittle right now and everything around it is so incapable of supporting it. As little as I see her, and even though I probably won’t see her for another year, I realized when I was dragging myself in front of my computer to get some actual work done, ragged and raging like a slithering swamp creature, I realized too late that I never should have gone.

***

Thursday night, I finally went to a yoga class. It was a simple enough flow class and it was slow and deep and what I needed. I lay myself across a bolster at the end at my body talked to me. It told me that my heart was closed. That, even though it would be hard, I had to keep it open. I hurts to keep your heart open when it’s brittle and soft at the same time. But I heard those words ring up from somewhere deep and true and wise. I heard it. I will listen. 

***

Friday, I took Herbert to get an echocardiogram and I sent Aaron this text: 

“This is how much St Louis is turning me into a nicer, gentler person. Herbert is getting an echocardiogram this morning and there was a woman of a certain age wearing a bright pink dress (!!??) and, I shit you not, strumming a ukulele in the waiting room and I didn't have a single, snarky ironic thought about any of that.”

I took this picture of a single ibuprofen that fell out of Herbert’s pocket before he went in for the procedure because that’s what our life is right now: ibuprofen and hospital waiting rooms. 

Saturday, I took a mat Pilates class that made everything feel mostly okay. I came home feeling full of cramps but, oddly enough, cozy. I napped next to Herbert while we rewatched episodes of “Sherlock Homes” and watch the beautiful fall day outside of our window with Toby curled up in between us like a kidney bean. 

When I first thought of moving back to the midwest, I pictured the three of us taking lovely hikes to see the lovely leaves change. I haven’t even looked into hiking trails near us (there are many) because I don’t have the heart to go without my husband. I can’t see all that beauty without him right now. 

Saturday was Sarah’s birthday, so I met her, Marcia, Jeff, and wee Aiden at Momo’s, her favorite restaurant. Stephanie wasn’t dancing that night, but an old friend of hers was. I ordered a glass of champagne before they got there and tried to steady myself (my period was moving ahead full steam). The four of them headed in and, frankly, we all looked a bit tossed around. 

Sarah’s custody hearing is still keeping her life mucked up and her parents are getting older. We enjoyed each other’s company like a bunch of tired people with good intentions. I handed Aiden a bouquet of sunflowers to hand to his momma so he could wish her a happy birthday. I gave them the details of Herbert’s upcoming evaluation with the transplant center. I gave them all the worst news in the best way I could because we were all tired people that night.  

“How do you think Herbert is handling all this?” Jeff asked. I tried to answer in a way that (A) didn’t make me cry, (B) sounded truthful and (C) made it clear that I’m still not entirely sure how to answer that question. I did say that I think that Herbert is weak, tired, and happy that there are smart doctors making good decisions on his behalf, that we could only really ask for that. 

Sarah had invited several other family members, all of us at the last minute, and I was the only one who could make it. I almost bailed at the last minute (PERIOD! CRAMPS! BLOOD THAT, I SHIT YOU NOT, STAINED MY SEAT ON THE WAY HOME BECAUSE PADS AREN’T APPARENTLY BIG ENOUGH FOR ME ANYMORE! FUCK THIS!) but then realized I was likely the only relative who would be there. 

As we were leaving, Jeff carried Aiden across the street. 

“See you later!” I yelled at him, waving like an idiot. He waved back, smiling his perfect little boy smile.

“See you soon! See you next time!” He waved back like an idiot, too, happy with my last-minute game.”

“Be good!”

“YOU be good!”

“Have a good night!”

“YOU have a good night.”

They faded into the darkness of the parking lot across the street and I eased into the car, my cramps dictating an awkward and hunched posture. I wished that I could solve Sarah’s legal problems with a wand. I’m sure she wishes the same for Herbert’s health. We will have to continue to settle for our non-magical, tired selves. 

****

Sunday, I went to Steph’s for lunch. The group was Marcia, Steph, Sarah, my cousin J-- and Steph’s golden mother-in-law, Rita. I made a French-style sandwich with roasted turkey, bartlett pear, sliced goat cheese and butter. Steph made fattoush salad and we sat at her pretty table in her sunlight dining room. 

Rita told stories about growing up in a racist community in a non-racist family. There were, she said, two black families that lived at the bottom of a hill, the only two black families in town.

“We called in niggertown,” she said with candor that was refreshing. (I should point out that Rita doesn’t have a racist bone anywhere in her body.) We were all busy being loving and pleasant and then, suddenly, J-- wasn’t.

Here’s the thing: I’m so tired of the flavor of crazy that swirls through our family, I don’t even want to talk about what she did. She was shitty to Sarah in a way that embarrassed me for her and reminded me of why our relationship is as distant as it is. The thing about having a strain of crazy that runs through your family (who doesn’t have one of those?) is that it takes the non-crazy people an entire afternoon to recover from five minutes of it. 

That’s what we did. Rita after lunch, went to see her elderly mother and J-- went off to wherever she was going. The four of us, all of us somewhat imperfect ourselves, had to sit with that crazy and sweep it up. I could go into why it was shitty, what she said and did. Why it was, as Herbert would say later, something that proved, definitively, that J-- is now and will forever be completely full of shit. That she is broken and wounded and only knows how to lash out at other people who aren’t as wounded as she is. 

She had the entire afternoon to say two words to me that were conspicuously absent: How’s Herbert? She didn’t once, not ever, say them. Ever. I could write an entire book about the two of us and why and how we’ve impacted each other as much as we have. I eventually in my very early adulthood, because of her drinking, drugging and general self-destructive asshole bullshit, quarantined her. I was hoping that I could somehow lift it now. I’m disappointed, but not surprised, to learn that I can’t. Not now. Not ever.

After we put the crazy away, my cousins listened to me talk about my insane life and they admitted that they were worried and scared. We kept leaning into each other, saying loving things, the things that people should say, and I was again bowled over that in a family so defined BY crazy that these moments, and these people and my relationships with them, are even possible. 

[raitchparker]

Wednesday, October 12 and Thursday, October 13

Wednesday: I got up early and spent the morning with Cass today. She’s going to New York over the weekend to shoot her last wedding there of the season, so she reached out to see me before she left. Herbert stayed cocooned in bed (it was quite cool and rainy this morning, ideal cocooning weather for a man who spent the day prior talking about lung transplants) and I drove to her house alone. 

Little Dot’s face always explodes into a smile when she sees Toby. He scrambled after her to abscond with morsels of uneaten Nilla Wafers successfully several times. It’s hard to stop a dog from eating uneaten cookies when the toddler offers them up willingly. 

Before we left, I gave Cass the cold slap of our shitty news. The thing about my sisters that is of such huge relief to me is the calm, patient and compassionate way they respond to shitty news without making it about them and without being too precious about it. 

“Are you at least happy that you are moving forward?” she asked. Think about how she phrased that for a second. It is the heart of an optimist who thinks that way and the brain of a thoughtful person who asks the question. She is her mother’s daughter in so many ways.  

Cass drove us to The Living Room, the coffee shop in Maplewood, and we sat outside in the still misty air, watching Dot soak her tushy on the damp, rain-soaked children’s chairs they have on the patio. I had a fantastic breakfast of a soft-boiled egg on bacon with a tender layer of cheddar cheese and one of the best biscuits I’ve ever had. I shared the latter with the baby, who is all-too excited now to hold a finger for balance while she walks around on her drunk solider legs.

“This is what I was afraid I was going to miss,” I said to Cass once as we headed back to our table from the other side of the patio. Toby was even enjoying himself, scavenging the ground for crumbs, relaxing under the table. 

“She’ll always know you now,” Cass responded, which is officially a refrain of ours. Dot is a baby, and she can act like a frustrated toddler like any of them, but she is sparkling and happy and social and fun. Her bald baby head now has a nice layer of powdery blonde hair which seems to have erupted out of nowhere. She fussed her way back into her carseat and I flipped through the Riverfront Times in the car as we drove home.

Dot ate lunch of cheese, carrots, apples, and turkey when we got home. Toby was the grateful recipient of many of her uneaten bits. Dot and I played some serious peek-a-boo in the living room. She tried to get Toby to join in, and I explained to her that dogs don’t play peek-a-boo very well, sadly. 

We left at nap time. 

“Be safe,” I said on my way out.

“Okay, Curt Parker’s daughter,” Cass said.

“I’d say that to anyone,” I said.

“That still makes you Curt Parker’s daughter.” Advantage: Cass.

I told Jen the news in the car on the way home. I make sure that Aaron, Raelle, and Jen are in my inner loop. She was comforting and sweet. When I got home, I was riding a huge wave of caffeine from the not one but two cappuccinos I had that morning. I put the energy to good use and started building a new website for my copywriting business.

Thursday: This morning, we took care of Herbert’s pre-op consultation at the hospital. Blood work, chest x-ray, a meeting with the anesthesiologist. We got lunch on the way home at a breakfast spot near the house. 

I got deluged with text messages because my Aunt Carol is in town from Irvine, CA. She was planning an impromptu gathering at Aunt Betty Lou’s that evening. I knew already that I was too exhausted to be out much later than dinner, and I was also unprepared to discuss lung transplants any more that week. I’ll see her before she leaves.

I had some writing work to do in the afternoon, and taking Lacey’s advice is paying off. I’m not making nearly enough money, but it felt good just to write a single blog that day. I have to remind myself that I’m building a future where writing a blog or two a day can make me enough money to live happily. I am, as she suggested, setting myself up for what I want my life to look like here. 

I took a Pilates mat class at a nearby studio I’ve checked out a few times. It felt good to be around healthy people as it always, always does for me. My knee (which had been quite swollen for a few weeks from the crappy mattress we’re sleeping on and overdoing the barre classes) felt good. Exercise matters. 

I made a very soupy cauliflower gratin for dinner. I underestimated the size of the cauliflower (which was the size of my head) and used a baking dish that was too deep. I roasted a half turkey breast which was excellent. 

Dad came home from going out to dinner with some co-workers he’s known for some 30-odd years now. I know their names but I’ve never met them. 

“We say every year that we’re going to get together more than once a year, but then we never do,” he said. 

I thought about Grandma then and her friends who keep dying. I know that must rankle Dad, the thought that these guys, his friends, even the ones he only sees once a year, are getting older. We’re all walking around on ice all the time and we never look down. That’s what life really is, isn’t it?

Herbert and I watched “Better Things” (one of the other best new shows of the season) and I thought it was the best episode so far of the series. We are hopeless without a DVR, truly, so I played solitaire on my iPad (sue me, it’s relaxing) while Herbert watched “Planes, Trains, and Automobiles.” That movie is as old now as an Abbot and Costello movie would have been when I was a kid. It’s amazing how white John Hughes’ world was. There are zero people of color anywhere, in any of them. There’s seriously never a single black person in any of his films. Not even as background characters. I wish people in this country would stop looking backwards. Things here were never better for everyone if one of the 80s most cherished and beloved writer/directors wrote off an entire race of Americans. 

Herbert slept with a detector on his finger tonight that will reveal whether or not he needs to sleep with oxygen. They dropped the device off this morning and will pick it up tomorrow. Before we went to sleep, I took Toby out for a quick stroll down the block. In the distance, I heard a car alarm, the first, literally, I’ve heard since we got here. 

Car alarms are unavoidable in a densely populated city like L.A. I took in a stiff breath of cold air. I listened to the silence. I watched my dog’s shadow from the burning full moon overhead spill onto the sidewalk. I remain grateful that the soundtrack of my life is no longer car alarms and helicopters. That’s what I will tell people now when they asked me why I moved back. I will say because I was tired of car alarms and helicopters. I came back here to find peace.

[raitchparker]

Tuesday, October 11, 2016

There was only one event today that mattered. 

We arrived at the doctor’s office at SLU at 1:45, and waited for him for about a half an hour, nervously, in an exam room. I didn’t feel a hint of grief despite how grave I knew this conversation would be. That’s why you sob and collapse on the stairs and scream into wash clothes and take long walks and grieve when the mood strikes. There will be moments when grief gets in the way. It would have today. Since I let it rule me freely last week, I was at least clear-headed enough today to listen.

When the doctor popped in the door with a breezy and familiar, “Hey, Guys!” I thanked every stone floating in the heavens for the convenience of being from a good hospital town. Not everyone is. I happen to be. What lucky ducks we are for that.

He explained several things to us and we listened carefully and I wrote things down. For such tasks, I have the Oprah Life journal that I got for free when she launched her TV network years ago. It’s the same notebook I used when Herbert and I got married. The back pocket is still stuffed with our RSVP cards. It’s become a strange history of us, although I’m not sure that taking notes about your husband’s incurable lung disease is exactly what she and her team had in mind when they ordered hundreds of thousands of these moleskin books with Oprah’s name embossed on the cover. 

We spent an hour in serious discussion with the doctor. The bottom line is that Herbert’s diffusion levels (his lungs’ ability to bring oxygen from the air into his blood, aka their most basic and important function) is at 20 percent. They are supposed to be at 100. Their expansion capacity (which indicates the level of elasticity of the lung tissue and their ability, to, you know, expand) is at 30 percent. These numbers are nearly 100 percent down from the pulmonary function test he got 11 months ago in L.A.

Herbert’s lungs are getting shitty grades.  They’re not even getting Ds. Straight Fs all around.

The lung biopsy he’s getting in just over two weeks will tell us what he has definitively. Our doctor will send those samples to a host of what he referred to as “world experts” to get their opinion, too. There’s a chance that whatever he has could be halted with medication. There’s almost no change that the damage, which he showed us in great detail with the images from Herbert’s last CT scan, can be reversed.

Herbert’s lungs are destined to remain failing students forever.

He has, as discussed, referred Herbert to the lung transplant center at Barnes. They will evaluate Herbert soon to determine if he is a candidate for new lungs. The A-student variety. it will be a long process and we don’t know how long that will take. It’s certainly too soon to predict any outcome.

The doctor did say to ignore the data on lung transplants, which is all pretty terrifying. He reminded us that by the time most people get lung transplants, they are dealing with other factors that impact their mortality, namely age and other serious and terminal diseases like cystic fibrosis. 

“Medicine is always looking backwards,” he said. “There’s no reason to think he can’t live a full life with a new set of lungs. The transplant people will scare the shit out of you. That’s what they do.”

The other road is that Herbert, with drug and oxygen therapy, will learn to live with his F-student lungs as is. He could live an active life, replete with exercise and exertion. That could happen. His lungs could also improve slightly with medication.

I asked the doctor how consistent patients are across the board when it comes to this illness. Are they all the same, I asked, or are they more like snowflake conditions.

“You’ve got the right idea,” he said, meaning that indeed, every individual case has its own unique characteristics. He set us up for more tests, reassured us several times that Herbert isn’t any immediate mortal danger. We set things up with the friendly nurse and we drove the length of the St. Louis metro area back to my dad’s house. (Dear St. Louis traffic: yes, during rush hour, you have some impressive break lights. I am from L.A. You’ll never, ever phase me. That is a promise.)

Neither of us had eaten since breakfast, so I made dinner as soon as we got home. We were cleaning up when my parents got home from having their own dinner with Mel, Deborah’s father, for his birthday. We sat them down and told them the grave news, which I’d been sitting on until we had every single shred of data from the doctor. 

They were visibly shocked by the word “transplant” because they are human and it’s a terrible word. It’s been our worst fear all along, it’s been the very one they told me not to worry about. We explained Herbert’s two paths, one that will lead to management and perpetual compromised lung function, and the other, transplantation. 

We told them when and how these things would happen. I did most of the talking, with my Oprah notebook in my hand. I explained that it’s unusual that Herbert does not yet need oxygen, that his normal oxygen levels in his blood is part of his snowflake singularity. He should need oxygen and doesn’t. This is neither a good sign or a bad sign. It simply is. 

We talked for about thirty minutes.

“Well,” Deb said with her characteristic pragmatism, “at least you guys are getting to the bottom of this quickly, right?”

Indeed, that is our silver lining. We spent a year pining in the free L.A. healthcare system with no real results. We have been here for less than three months and we’re getting close to the end of the diagnostic line. We are free from the crazy-making indifference of an overwhelmed healthcare system for low income people. As my friend Aaron says, healthcare is the true caste system of the United States.

Herbert finally went upstairs to relax, exhausted on many levels. I went back to finish up a load of laundry. Deb showed up behind me and gave me a hug.

“Love ya,” she said. 

I don’t want to impugn her in any way, but we’ve never had a moment like that in our lives. I’ve always known she loves me, despite the fact that she’s never, once, ever in my life told me. There are families who never come together, for any reason. It leaves the wounded cracked and broken and bleeding and remorseful and alone forever. Whatever potholes and vacuums defined my childhood--and lawdy lawd, there sure were a lot of them in both my mother’s and my father’s houses--they’re gone now. No one is triggering me here. 

Herbert and I are learning how to take these things in stride now. Of course, knowing he’s not dying is a big help. We watched “Atlanta” (the best new show on T.V.). There’s no easy way to track down and adhere to normalcy when a disease is tearing its way through your loved one’s body. Still, it’s what you have to do. Here we are. Doing that. Swimming our way back to normalcy.

I’ll just mention here that I still haven’t sold the house yet. I never think about it now. It’s just the house that isn’t sold that costs me money I don’t really have. It’s just the bankruptcy I may have to file so I always have cash for Herbert’s healthcare. Compared to the bayonet wound that is Herbert’s illness, money stress is a fucking paper cut. It only stings when I think about it. I don’t think about it. Problem solved.

[raitchparker]

Sunday, October 9, 2016

I forgot what a sparkly gemstone fall is. It’s why everyone crowds themselves to live in L.A. Weather like today is what L.A. used to be like almost all the time. Sunny, breezy, glorious, perfect. As a friend of mine said, L.A. has Sunday weather every day.

If Herbert were fit, we would have gone for a hike somewhere today. I made myself a small breakfast because we had dinner plans that night. I worked more on my website. I lost a lot of time on social media because Donald Trump talked about grabbing women’s pussys on a video tape in 2005 with one of George W. Bush’s moron cousins and the world is blowing up (their second debate is tonight in none other than St. Louis, MO). 

I finally got to cleaning out my car. It was so hot on the drive out that Toby molted in the backseat. The entire back is nothing but his fur. Dad set me up with the vacuum cleaner, the hose, a bucket, a rag and soap to help expedite the process. When I was about halfway done, he came out.

“I’m here to assuage my guilt,” he said.

“Guilt about what on earth?” I asked.

“Well, because...” he stopped, motioning to my car.

“Dad, I’m a grown ass woman. It’s my job to take care of my own car.”

“I know,” he said, laughing, “I just feel like I should be helping.”

“You did help,” I said. “You got all this stuff out for me. You set it all up.”

“Yeah,” he said begrudgingly, “I guess I did.” 

This conversation is an example of how my father fluctuates evenly between utter frustration and feelings of utter inadequacy. 

“Stop feeling guilty, Curt Parker,” I said to his back as he walked inside.

“Okay, okay,” was his response. I could hear from the sound of his voice that he was smiling. 

I came back inside at some point and made myself a protein shake, because I’m in my mid 40s and can’t eat solid food any more. 

“That was a nice thing you did for Grandma yesterday,” Dad said to me out of the blue.

“What did I do?” I honestly couldn’t think of a thing.

“That you comforted her. About her friend.”

He was talking about when I hugged her and held her hand when she told us about poor Elaine. 

“Oh. Of course I comforted her,” I said.

“Well...I didn’t.”

(See. There’s that guilt again.) 

“Women do better with death. Men aren’t so good with it,” I said.

He nodded. “You sure got that right.”

The mind of Curt Parker is a complicated place. 

We drove to the Central West End at 6 to have dinner at Taste on Laclede. They sat is in a romantic two-top in an alcove right by the window that overlooked the patio. On Sundays and Mondays, their classic cocktails are only seven bucks, so I got two cosmos and Herbert got two bloody marys. 

The food is simple and delicious, tapas style. They have a corn bread grilled in bacon grease that will change your life. The french fries were “moules et frites” worthy. The drinks were great and the staff was attentive without getting annoying. Because I can’t live anywhere that doesn’t have a decent food scene, I applauded Taste silently. That places like this are still thriving in St. Louis means I can live here for a long, long ass time. 

Herbert and I talked about our music nerd friends. One, a Metallica fan, was invited to a pre-listening party for their new album in the studio. We went through our roster of music nerd friends, trying to decipher who is the biggest fanboy or girl. Somehow, that conversation took almost two hours. We still can’t decide. How do you pick between your friend who gets invited to listen to the new Metallica album in the studio because that’s how serious the BAND knows you are about their music, another friend who flew to London to see Kate Bush and came back the next day (from L.A. no less) and a friend who goes on the Kiss cruise every year? You don’t. It is fun to get drunk and talk about it over some fantastic pork belly, however. 

When we came in the door, the parents were so engrossed in season two of “Bloodlines” that they ignored us. We went downstairs and hate watched “The Strain” (holy, holy shit that show is terrible this season). Before they went up to bed, Dad asked me if we’d liked the restaurant.

“I’m so glad you guys had a special dinner night,” he said. “You do so much cooking. You needed a night off.” I’m reasonably sure that Curt never felt like he deserved or needed much of a night off when he made dinner for his family every night of the week (give or take) until my sisters left home. If he did, he never mentioned it. He does more dishes than I do even now, for me, the daughter who is living rent-free in his home. There have been many nights when, after Herbert and I are done eating, I get up to find that every pot has been washed already.

“It’s no problem,” Dad will say. “I was doing mine anyway.” 

(Remember how I was baffled when he was being a weird, distant jerk? You see my confusion now, right? Okay. Thanks.)

Before I fell asleep, I texted Cass and we celebrated the corn bread at Taste. I crawled into bed. It’s easy to fall asleep when you’re full and loved. 

[raitchparker]

Friday, October 7 and Saturday October 8, 2016

Yesterday was an inconsolable day for me. It was unthinkable that I would write anything. I managed to try out a new Pilates studio, which at least made my body feel better. I got home from that, snapped at my father and Herbert for completely no reason several times.

After dinner, I turned on Herbert again while I was cleaning up.

“You don’t have to talk to me like that,” he said. “I was asking you a question.”

My eyes filled with tears, something I’d been avoiding all day. On Wednesday, I spent a lot of quality time in the bathroom with the door closed, elbows resting on the handle of the shower door, face buried in my hands, submitting to deep, heavy sobs. As counter intuitive as it is, after a day like that, no matter how thick your despair, you’re still ready for the tears to end.

But, on Thursday, they had to come out, and so they did, right there in the kitchen.

“I felt like this all day,” I said, “I’m doing the best that I can.”

I felt pathetic and horrible. It shouldn’t be Herbert’s job to comfort me right now, but that’s his job because he’s my husband, so he did. We hugged in the kitchen, alone. We fit well together. I’m only about 5′3″ but he, at last measure, is 5′8″. He’s got a broad back and square shoulders. We stood there and hugged and I let it sink in that, for now, he’s strong enough still to hold me up when I need it. 

So, today, I needed some levity. I had already scheduled spending time with Lacey, thankfully, so I knew I’d get it. 

We watched Project Runway at her house (I still love you, Erin, and I’d wear the shit out of that swimsuit that you made). When I got there, I told her about the forecasted lung transplant, or at least the increasing potential for it, and that I’d hesitated to tell her because I didn’t really have all the information yet about Elliott’s pulmonary function test (PFT). 

“I want you to keep me in the loop,” was her response to that. She took the news with some heaviness because there’s no other way to take it. Then, we did what we should have done: we let the bad news balloon go flying up into the sky, long past where we could see it. We sighed it away, and then we watched a T.V. show where we can openly talk shit about people we don’t know. 

After, we went to Frontenac Plaza for lunch and a trip to Madewell. Lacey has been following a couple of tops for me there because that’s her favorite store and I still need respectable winter clothes. One that I really wanted was suddenly on sale. We headed there first (no woman in her right mind will try on clothes after she’s eaten) and she told me that the day before, where she learned about the sale, she and Cass had been there with Dot.

“She loves the word “shoes” now,” Lace said, which, in our family, makes perfect genetic sense. Lacey said “shoes” in the bouncy, baby way that Dot did and I realized that I hadn’t seen that little baby face for over a week. We did some trying on and the top worked well. They call it retail therapy for a reason.

We ate at Brio and sat outside because the weather was delicious. Despite all my recent long-sleeved purchases, I wore a very summery top because the heat had returned yesterday. There was no sign of it today, although it was hardly cold. We did some chatting about real estate. I mentioned that I was attracted to the Shaw area of Clayton where I’d gotten my haircut. She nodded, approving. 

We got back to her house around 4 and I played with Rosie for a few minutes before I left. Rosie is calming down enough now where she’s standing still long enough to pet her. She is growing in to her saggy face and her eyes (which are that beautiful hazel that dark sharpes get) are clearer and more focused. I promised her that the next time I came over, I’d have Toby with me.

I got home around 5. Herbert was upstairs in our room. We made a quick shopping list and I ran out again to the store. I know myself. I do better sometimes by fluttering around until my heart gets lighter again.

I came home with a load of food for the week but had no plans to cook. Herbert had already fed himself. We tried to find some T.V. worth watching. We did nothing of great importance and we held hands a lot.

Saturday morning, my dad and I went to have breakfast with my grandma. We picked her up at 9:30 and took her to a breakfast spot that’s maybe a five minute walk from Lacey. In West County, breakfast places are always swamped on the weekends. The massive lobby of this place was swarming with young families. The teenage girls, I noted, were already trotting out their new fall looks. I wasn’t the only ones who noticed.

“They’ve already got their boots on,” Grandma said. “They’ll put them on the minute the weather turns. By spring, they’ll be ready for their flip flops again.” 

Not long after we got our table, Grandma’s phone rang and she answered it. Dad and I were chatting about nothing in particular when, after she hung up, her eyes were filled with tears.

“Elaine died,” she said, her voice breaking. 

I have no earthly idea who Elaine is, but I scooted over to her on our side of the booth we shared, and hugged her around the shoulders. Elaine, I found out, was an old friend from back when my dad was a kid. She’d had a stroke. It was, in Grandma’s words, a blessing that she passed. Elaine and Grandma were a part of a large group of women who used to get together when their children were small to play cards, have dinner, maybe drinks at each other’s houses.

“I’m the last one,” Grandma said matter-of-factly. That’s the rub of being a spry, fit, active 91-year old. You outlive all your friends. 

Grandma talked about having a group over the night before to her place, how nice the private dining area is. She’s taking a trip, she told me, to visit my cousin in San Francisco to see her twin great grandchildren and their brother. She’s also going to Florida over Christmas to see my uncle and a few other of her Florida relatives (Florida is her home state). 

“it’s the last trip I’ll make alone,” she said. While it drives us all to madness that she still drives, I’m impressed by how accepting she is of her age. She’s slowly easing into her limitations, which sounds ludicrous to other people who know other 90-somethings. She’s far from the average 90-something, that woman. 

After we dropped her off, Dad and I talked about how pleasant it is to deal with her when she’s not drinking. Grandma is a mean, pissy, belligerent drunk. We had an incident with her in L.A. during my wedding that, Dad said, was maybe the final straw. After that particular incident, I thought maybe I’d lost her forever to the land of the kind of cul-de-sac conversations you have with drunks. 

She is much crisper, brighter and easier to talk to now. She didn’t drink to such excess as often before she hit her 70s (to be clear: Taffy Parker always liked a cocktail). I’m happy, especially during what could easily be the twilight of her mind, to have the version of her who can follow the plot, back. 

I hadn’t made any plans for that evening. We got home around 11:30 and I felt a little frozen by that fact. We were just going to be here, in Wildwood, all day and night, me and my sick husband. I don’t need to be constantly entertained, but I am prone to despair right now. The solution to this despair is to live like a shark: keep moving.

I worked on my business website for a couple of hours so I can start to get more work soon. I did some laundry. Herbert and I took the dog for a walk later in the afternoon (his request). Lacey is working all weekend, so I texted Cass to see if they were going to be around. She got back to me right away to tell me that she was working a wedding. She deluged me with sweet suggestions of where to go. She’s a bit worried about us stranding ourselves in Wildwood. She and Drew spent several months transitioning in this very house when they moved back from New York. 

By then, it was about 6 and as much as all of her suggestions would be fun for any able-bodied person, they would not be for Herbert. I went into the kitchen, took out the bottle of wine from the fridge (a white Sauvignon Blanc, it’s officially too cold for rose now) and made dinner. 

It was a Saturday night dinner of spaghetti in cream sauce with spinach, leeks and pancetta. I drank a little too much wine and Herbert had two vodka sodas. We went downstairs to watch some shows we’d missed the week before. At my insistence, we put the dog in the car and went to Dairy Queen (now called DQ). 

I left him in the parking lot and went inside to get a hot fudge sundae and a Blizzard. Inside, there was an older couple, alone at a table, getting ice cream. Clearly, the staff knew them. They were regulars. They looked to be about 60. I reminded the universe that I would gladly accept that as my future. Herbert and I as able-bodied 60-somethings getting our ice cream on a Saturday night. 

We ate our ice cream at home, flipping through channels, watching short segments of terrible movies. It’s worth noting that, technically, the DQ is in Eillisville. Technically, we did get out of Wildwood. I’m sure my sister will be relieved. 

Even though we did so little, it was a little too much for Herbert. We overstayed our welcome with a particular shitty movie because he didn’t have the strength to walk up the two flights of stairs to our room. 

“I think the ice cream and the drinks were too much,” he said.

We waited it out through as many excruciating minutes of “Cliffhanger,” a movie that decidedly does not hold up, as we could until I just couldn’t take it any more.

“We’ve got to go up,” I said. “I’m passing out.”

I waited at the top of the basement stairs for Herbert, who had to take a small break in the middle. The going was equally slow up the second flight to the second floor of the house. By the time he sat on our bed, he was completely out of breath. I got ready for bed while he gasped for a few minutes, hacking here and there. 

After he brushed his teeth and came to bed, we huddled in the blankets, Toby curled up in between us.

“The walk,” he said. “It’s not the drinks. I’m just super wiped out because of that walk we took.” He was clearly relieved. (The route we took is probably a little over a mile, so it’s legit that it fatigued him.) 

My poor husband was relieved because it was the exercise and not dessert, that had overwhelmed him. I followed his lead. I let myself feel relieved, too. 

[raitchparker]

Tuesday, October 4, 2016

Today was our second wedding anniversary.

I only remembered because, when I woke up, the first thing that Herbert said to me was “happy anniversary.” He can’t die. I’ll never remember anything. 

We thought we’d follow tradition and do what most couples do to mark the end of their second year together: go to the hospital to meet with the thoracic surgeon who is going to perform your husband’s lung biopsy.

That meeting itself was very straightforward. She seems confident that Herbert can handle the procedure. When we mentioned his pulmonary function test, she said, “Oh, yeah, your lung function is terrible,” which I only mention because we’re getting so used to hearing that neither of us batted an eye when she said it.

Herbert mentioned coughing. 

“If I cough a lot, is that going to be a problem?”

“No,” the doctor said, “but it will hurt a lot.”

We got home in the late afternoon. I’d thought about taking us to dinner at a place in the Central West End that my sister Cassidy loves. When we drove past that area (which is about 17 miles from our house) twice on our way to and from the hospital, I changed my mind. I suggested to Herbert that we go to that wine bar/bistro we found that we liked in Wildwood and go for cheap happy hour. We can, I suggested, go to the Central West End this weekend.

We got home around the time that Deb was walking in the door from seeing her elderly aunt. We told her our plans and reminded her that it was our anniversary. 

“I FORGOT!” she said like it was a crime just shy if infanticide. 

“I did, too,” and told her that Herbert and Lacey are the only two people who remembered. 

I changed my clothes and drew on some eyebrows. For about two seconds, I looked like someone who remembered how to groom herself. The weather was delicious. Herbert and I joked that this was the weather we’d expected and wanted on our actual wedding day, instead of the incendiary 104-degree day that we did get.

“It was like this the weekend before AND the weekend after,” he reminded me.

We sat outside and took another look at the happy hour menu. This is the second time coming, so we challenged ourselves to try at least one new thing. We got two flatbreads (for the uninitiated: St. Louis is having a flatbread moment and it’s fucking awesome), these insanely good french fries. We got two rounds of drinks. 

We didn’t talk about Herbert’s health once. We talked about what bullshit it is that Wendy O’Williams doesn’t get any love from the punk or metal community, a bit complaint of Herbert’s. I reminded him that the world is more sexist than it is anything else. I reminded him that the women of her generation who have gotten their due (namely: Patti Smith, Debbie Harry, Chrissie Hines) is because they’re all still alive. They’ve had moments to cement their legacies, at least for the moment. 

If you could freeze that moment in amber, it’s exemplary of how we like to spend most of our time: eating good food, drinking modestly, talking about music and culture. That’s us, in a nutshell. We’re happy to capitalize on a good happy hour and beat the crowds. We love a good patio. What still amazes me is that we’re together so much of the time, and have been since day 1, and we still, after 7 1/2 years together of daily contact, have so much to say to each other. 

There was a big group having a party in a private room that spilled onto the other half of the large patio. The last time we were there, I jokingly called the crowd “The Real Housewives of Wildwood.” Lots of cold shoulder blouses and wedge heels. They are, however, strikingly different from their L.A./O.C. counterparts in so many ways. For example, everyone pretty much had the faces they were born with and I couldn’t pick out a single boob job in the bunch. Also, when I walked through them to get to the bathroom, the women I made eye contact with smiled and said hello to me. (When you live in L.A., you forget such things like eye contact and a polite hello between strangers is even possible.)

I sobered up enough to drive and asked for the check.

“You don’t have one,” our waiter said.

I humored him with a chuckle. “Oh, that would be great,” I said. 

He didn’t move. 

“No really. You don’t have one. It’s your anniversary, right. Are you the Rosen party?”

Herbert and eye glanced at each other, a little confused for a fraction of a second.

“Someone named Parker...” the waiter started, and then we all laughed before he could finish. 

“Congratulations,” he said as we stood up to leave. 

Herbert and I were touched and wondering out loud whose idea it was when we passed a bench on the way to the car.

“I have to sit down,” he said suddenly. We’d walked maybe a total of 300 feet, if that. Just like that, I could feel my mood wanting to plummet. I grabbed onto it with the dregs of wine floating through me. I followed Herbert’s unflappable spirit. I put my hand on his shoulder. 

“I think I just got hit with some fullness,” he said, and popped back up to his feet.

Being a caretaker has a complicated rhythm to it. You’re constantly being pelted from all directions (this is especially true if you’re a caretaker, you’re unsold house is still on the market and you just moved back to your childhood home and you’re living with your parents). It never stops. 

You are allowed moments to crumble, but you can’t do it every time the mood strikes. You don’t do it on your wedding anniversary when those sweet parents were thoughtful enough to surprise you by picking up the bill. Even when it strikes you as utterly tragic that your 44-year-old husband can’t make the short walk to the parking lot because that’s how shitty his lungs are now. You can’t because he’s not. So...you don’t.

I stopped on the way home at Dierberg’s so Herbert can finally try gooey butter cake. There was exactly one left in the bakery section. I like to think that it was left there just for us. 

We got home and Dad had me retell the story about our surprise. He gave Deb all the credit and she said that it was all his doing.

“If neither of you are going to take credit,” I said, “then I’ll just have to thank both of you.”

Dad said again, “You know, it’s really all her,” in a low voice. “She’s the good one.”

We spent the rest of the night watching “Luke Cage” on Netflix, taking time in between episodes to discuss how obnoxiously comfortable Toby looked on the bed. Toby is at his happiest when he’s sharing a piece of furniture with us. Because our bed is the only piece of furniture where he’s allowed, he loves a good Netflix marathon these days. 

We broke about two episodes in for a round of gooey butter cake. We ate it in bed and it’s better than I remembered it to be. it’s not as sickeningly sweet as you’d think. It has a crust that’s very thin and danish-like. The custardy center reminded me of dozens of childhood meals that have all faded away. I hope I can remember this particular serving longer than the others. 

“Lived up to the hype,” Herbert said, nodding. He must have really liked it because I brought him up a second slice later. 

If you’d asked me two years ago, when I was wearing my Rick Owens dress and getting my hair done, what our life would look like in two years, well...I didn’t know the class of diseases that Herbert has even existed. He got sick mere months after we got married. I’ve joked with him a few times that I think husbands should come with warranties because I got a defective model. 

I didn’t think I’d understand what marriage really is so quickly. I thought I’d have more time. I was wrong. Change happens on its own schedule. When changes happen to you and your spouse, remember your vows. Remember that at some point, you decided this person was deserving of every sacrifice that you have it in you to make. 

Before you buy the dress or the suits or get excited about what amuse bouche is getting passed around before dinner, remember that when change barges in and disrupts your imagination of what you thought was supposed to happen, that it is indifferent and unapologetic. Change does not come with an explanation. It doesn’t ask permission. It pushes against every boundary you have. It pushes two people closer together or blows everything up. It does not discriminate. It doesn’t care how well suited you are to deal with it or if you’re relationship can handle it. By the time you realize what’s happening, you’re already going to be in the stew.

Marry someone who inspires the shit out of you. Marry someone you’re content to have happy hour with. Marry someone who is deserving. No one comes with a warranty. We are all breakable. You are. The person you love is. Remember that. Remember that if they break, you may be the bag that carries around all the pieces. That’s not a metaphor. Someday, that will be someone’s job, to be a human bag that has to hold both of you. There are only two of you. It’s lonely and scary. 

Do not get married if you’re not willing to be the bag. Do not get married if you suspect that the other person can’t sweep all of you up and hold it all together. Do not get married if you or your would-be spouse have an aversion to bad news, creepy lung diseases or spending a lot of time on hold. If that’s not you, if that’s not what you can count on, slug it out on your own. There’s nothing worse than being someone else’s crushing disappointment. There’s nothing worse than having someone leave you by the side of the road. 

The hard part about illness is that you have to imagine what your life would look like without someone. I’m only two years in and I just can’t. See it. I see us old, withered, sitting at a table, drinking cheap wine. 

I married the right one. Broken lungs and all. I’d do it again. A thousand times over.