#cause i did this on the 11th anniversary of my mom's death

[foreveranonymousfa]

Me 🤝 Arven Pokemon Scarlet

Having a dead mom

[jonjordanforrealz]

12 Years Is a Long Time

September 29th is my son Arron’s 11th birthday – a cause for celebrating for sure, and a time for this parent, as most parents do, to ponder aloud, “How in the hell did that go so fast?” For me, sentimental sap that I am, birthdays are always a time for reflection too.

In doing so this morning, I was, of course, reminded that September 29th is also the anniversary of my brother Michael’s passing. A year to the day before Arron came into this world, Mikey left it. 12 years ago today. That’s gone a different kind of so fast itself.

I’ve talked about my brother’s death many times over the years and it never bothers me to do so. Most of the time, it makes me happy just to talk about him at all. To be remembered is to be loved and he certainly is in both instances. But I don’t think I’ve ever really shared much publicly about his last day.

And I need to let it go.

Who knows? Maybe something like this can help somebody.

For 12 years, I’ve carried the weight of that day and never really faced it or dealt with it. And I’m tired. It’s heavy and I’m tired. And to fulfill my final promise to Mikey, actually, I need to get rid of it, once and for all.

Following a lifetime of major medical issues and severe mental and physical handicaps, and doing all he could over the course of his 25 years to beat the odds and somehow conquer and survive one and all, Michael would meet his match in the form of an internal bleeding issue that just couldn’t be solved.

A kid like Mikey, who couldn’t really communicate outside of very basic emotions, had no way of conveying to doctors what anything felt like, where it hurt, how long something had been bothering him, and so on and so forth. So oftentimes, things got worse, sometimes as bad as they possibly could get, before anyone could even get anywhere close to figuring out what the hell was going on. And in his final chapter, this reality first led to him being transported to be treated by specialists in Tampa, and then ultimately, to our family’s greatest test. That we were so conveniently able to face that final decision together thanks to his relocation to my neck of the woods was a stroke of luck that I don’t think anyone appreciated until years later.

Michael’s bleeding issue just wasn’t going away no matter what the doctors tried. Not to cheapen the matter, but I think someone likened it to plugging a hole in a hose with your finger, only to have another open shortly thereafter. At some point, you run out of fingers. And so, we were faced with two choices: An exploratory and very invasive surgery that guaranteed nothing or a nonsurgical Hail Mary that was every bit the final hope. My parents encouraged me to speak freely and honestly in that days-long conversation and as I recall, my opinion never wavered, though of course, I respected and understood their agonizing back-and-forth.

To me, this kid had already been through so much, literally since Day 1. Countless major surgeries and painful procedures that would absolutely hammer (and maybe finish) most “regular” people were the worst of the lot. Other concessions over time – simple things like eating and drinking normally – also took a toll, I’m sure, as every human needs simple joys.

Throughout his last ordeal, there had already been several procedures, and in my eyes, he didn’t need more of that. With the proposed surgery highly likely to kill him anyway, I didn’t see the justification to put him through that sort of torture again. I didn’t want that to be his way to go out. As his closest advocate, because “brothers” means something more that those who don’t have can know, I knew he didn’t want that to be his way to go out either.

Instead, I argued, that through the non-invasive course of treatment, while the odds of that working were stacked heavily against him, this put the ball in his court. This made it so that he could fight, if he wanted to. For a kid who rarely had the chance to call his shot at any time in his life, this was that. “Scrap if you want to, kid,” I thought. “If anyone can beat the odds one more time, it’s you.” And if not, I thought he had that right too. And I wanted to fight for that. This time, I wanted to fight for his right to fight. Or not.

And so, with my parents on board, we gave him his shot, and at first, true to form, the kid was responding positively. Amazed yet unsurprised, we carried on with some hope for the first time in seemingly forever … and then everything just tanked. Quickly.

I’d prepared for this my whole life. And I had thought I had been stepping into this moment already time and time before. But I wasn’t nervous. I felt a sense of urgency, after getting the call, because I wanted to be with him but I wasn’t nervous or scared. Something that always comforted me was a belief that if anyone ever deserved a peaceful end, it would be Mikey. Once we were faced with the grave news, the doctor assured that as they stopped doing whatever they had been doing to treat him, and focused on making him comfortable, that he would indeed get that peaceful transition. And I know in the medical world that nothing is ever guaranteed but I really believed it. I believed in that. It’s all I wanted, then, knowing that there was no winning this last fight.

But it didn’t go down like that. His last day wasn’t, at first, peaceful at all. It was prolonged. And there were gasps and groans. At one point, a seizure. And I was mad. I was so mad.

At the same time, I knew what it was, really. This kid’s will to fight just doesn’t go away. It’s funny because from the very beginning, one of the things he was diagnosed with was some syndrome called Failure to Thrive. Fuck that.

When the worst moments hit, and I watched my brother and my family suffering, I didn’t feel mad anymore. I just felt like I had to do something.

There’s a picture that I have of my brother and I in bed. I was maybe 10 and he, six. We shared a room at that time and when my mom or dad would come in to get us up, if I was being a bum and still laying there and we had somewhere to be, they’d plop Mikey right in my bed next to me. That always got me up. Nothing like an eye poke or swift kick from the kid who “couldn’t control his movements” to start your day – accompanied, of course, by his trademark giggle.

That little shit … It’s still my favorite picture in the world.

In those final moments, I just crawled as far into his hospital bed as I could to lay next to him, just like we did on those mornings as kids, and I whispered to him, “It’s okay. You don’t have to fight anymore. We’re going to be okay.”

You see, I’d often wondered, when I was very young, why he pulled through so many things that most people wouldn’t. After all, I’d always noticed people bitching and moaning about the stupidest things (oh, contemporary America!), wandering around aimlessly in perpetual woe-is-me mode. If anyone should have ever just said, “Screw this!” and checked out, Michael should have. But he had us. And we, him. He pretty much defined us, really, for better or worse. I felt like there was at least a little something in him that told him he needed to stick around for us. And I just wanted him to know that we would be okay if he couldn’t anymore.

Within minutes, things calmed down. His breathing slowed. The stupid machines making noise start doing so more sporadically. And then, before we knew it, it was over. That was it. The end.

I remember lots of hugs and tears and one of many goodbyes to come. And then we said thank you to some staff members – really a symbolic thank you, from me at least, to so many over the years. To people in the medical field, I look at you as I do teachers, and that is in the highest regard, having intimately known both worlds, whether I wanted to or not.

I remember going outside and nobody saying very much.

I remember sitting down at a table.

And then I remember saying, “Well, what do we do now?” I don’t think I ever quite figured out what to do. A purpose I’d always had was now gone.

Of course, in the coming days and weeks, we had plenty to do – plenty of the mind-numbing, gut-wrenching things you have to do to prepare for a loved one’s final arrangements and all that. I took on a lot more of the sort than I ever had at that time because I felt like my parents shouldn’t have to, so I was distracted by productivity. But soon after that, I don’t remember anything. Don’t remember his funeral. Don’t remember leaving my parents and coming back home. Don’t remember going back to work. Sports, friends, events … nothing.

Truly, I think I completely lost a year. I don’t remember a lot at all about the time in between Mikey’s death and Arron’s birth. And then the latter happened and it was like the pause button I’d pushed on life had been pushed again, whether I was ready or not.

And while I was obviously happy to be a dad for the second time, I was also still hurting, which I must have forgotten about too in that year prior. And again, I was mad. I was so mad.

In the years since, that anger lingered, because if you don’t hit something head-on, it doesn’t just go away. Anger leads to hurt, fear, panic, anxiety, a defensive existence, and isolation. I’ve experienced it all and I wouldn’t wish any of it on my worst enemy. I’ve distanced myself, I’ve been checked out and I’ve lashed out, retreated within and pushed people away. It has caused me problems in every element of my life at one time (or more) or another.

None of it is any excuse and it’s a lot for which to apologize over a long period of time but if my suffering has ever caused any sort of suffering for anyone reading this, I am sorry.

(Note: I’m still going to enjoy my space and my distance more than most people but, overall, I can be better!)

I feel like some of this might be a surprise to people because I don’t show it, hardly ever. I’ve gotten good at projecting this version of myself at any time, regardless of what’s really going on. I even manage to have and to be a good time, probably a bit too often influenced by some additives I’ve grown fond of over the years. But there are times when all of that is just masking a wreck. And it has to stop.

I don’t know why I’m shedding this now other than that I need to – because it can’t go on forever. I haven’t come close to being the best version of myself and I have people around me who deserve nothing less than that. What better time than now if I’m finally recognizing that, at times, I haven’t been good? And at my worst, I haven’t even been okay.

And the bottom line is that I promised my little brother, as he left us 12 years ago, that I would be.

I’ll never let go of him. He’s on my arm and in my heart and I hear his voice – especially that laugh! – every single day.

But I’m letting go of that day.

12 years is a long time.

It’s been heavy.

And I’m tired.

And I have to be okay.

[eloarei]

A little rambling: on grief; and grieving a dog, a cat, an unborn child, and pieces of me that got hurt along the way. 

2300 words under the cut. 

It’s a very gloomy day today. I don’t usually mind; I like rain. But on a bad day, or a bad week, it only seems to insulate me in my own dark thoughts. That’s what today seems to be. I’ll work on fixing it later-- getting some exercise, sunlight if the clouds clear, making some tea. Should’ve done that already, but I forgot. Ate half a banana, at least. 

As I’ve complained about a few times lately, I’ve just not been doing especially well. When and why did it all start? It’s hard to say, but this ‘unwellness’ spell seems most potent starting April 11th (my anniversary, unfortunately, which is why I can remember it), when I came down with a gruesome stomach bug. Really haven’t been feeling right since. I’m really bad about being sick; it scares me and I handle it badly. I assume that’s part of what has messed me up. 

But grief is the other part, I think. Grief, and my being scared and worried that what caused it could strike again at any minute. Look, I’m... 32 now, and I’m sure that most people by this age have experienced profound loss. I’m probably not unusual, and I’m certainly not alone, but I think all the loss I’ve experienced is just piling up on me now, like there wasn’t enough time to process the new fresh ones before newer fresher ones came on, and so now even the old tough scars are aching. 

When I was a teenager, my parents died. They were old, and it was health problems. It was not a surprise, but that didn’t make it easier to deal with in freshman year of high school. (What made it easier to deal with? Rabidly cleaning out the fridge and watching Lord of the Rings tapes the neighbors lent me. That’s all I did for three days after my mom died.) It’s been a long time-- more than half my life ago-- and I do feel like I’m ‘over it’, but sometimes it just wells up, tears from nowhere. Maybe that’s just how grief is. 

A certainly had a good decade of my 20′s. I got married at 19, and had a pretty uneventful set of years. That felt normal to me. I do think, though, that the loss of my parents haunted me in that time, quietly. It influenced everything I did; it probably still does, if only because it changed the person I have become. But other than that, things were good, I think.  My dog Roxy died two years ago, when I was 30, not long after I got back from seeing my siblings for the first time in ages. She was violently ill, and died right in front of us as we were getting ready to take her to the vet. I think I’ve written about it. In fact, the next day I wrote a depressing fanfic piece, certainly as a coping mechanism. (It made people cry, so, mission accomplished, I guess.) I think that helped a lot. A few months later, my in-laws’ dog died too, while mom-in-law was on vacation, and that was rough as well. I wrote another sad fanfic about death. I really like both of these pieces, because they mean something, and they’re very raw. Furthermore, I’ll always have them, as tokens for Roxy, Ginger, and the little pieces of me they crushed when they died. I don’t know if the exchange is worth it, but it’s what I have. 

My grief over Roxy was gentle, as time went on. It didn’t bother me. I think I’d processed it well. I’d written out my feelings. I held her body in numb arms as my husband dug her grave. It was okay. 

In early 2020, basically on my 31st birthday (and right as Covid was happening), I found I was pregnant. Long story short, those were the densest two months of my life, where everything seemed to change so quickly. My thoughts and feelings could fill so very many pages; this is not the place I’ll leave them. The point of this particular story is that it didn’t work out. The baby ‘died’ not terribly unlike Roxy had-- violently ill, in front of me, with far too much blood. I passed out three times-- the real start of this current fearful nature, because I cannot overstate how very much I felt like I was going to die. I went to the ER; it was miserable, an ordeal I could say quite a lot about. I won’t, though. I have before, and I likely will again, elsewhere. 

This... This grief... I think I still don’t know what to do with it. I don’t think I ever will. Months later, I started writing a fic to deal with my feelings, though it took 90k words and many months before I got to the part where I could really delve into my trauma. And it has helped, I’m sure. I’m really sure. And I care about this fic so much, because like the others it is raw and real and it’s something I’d never have if not for my experience. Again, it may not be a fair trade, but it’s what I have. 

I don’t grieve for the baby. It didn’t make it far enough to even have a heartbeat. It doesn’t have a name, a gender. It doesn’t have a grave. We let the hospital take care of it. But I still grieve. I’m sad. Wrecked. I grieve what it could have been. I grieve the hope that was spent and lost on it, a precious resource that will take a long time to grow back, if ever. I grieve over not only my own disappointment, but my husband’s, and my in-laws. They’ve never pressured us to have kids, but they’re in their 60′s now, with no grandchildren. I think they feel... lacking, in a way. I understand. I feel the same (though different). I wanted to give them that. I wanted to have that. 

I still....?

I can’t say. I don’t know what I want. The event complicated my already complex emotions. I’m still waiting for them to simplify. Maybe they will, or maybe they won’t. 

I was alright for a while. Stressed enough because of Covid and family’s declining health. Then in early April 2021, just a year after the miscarriage, I got badly sick. Gross, but not what most people would call a real issue. But only a year after the miscarriage, when my body betrayed me and I was at its horrid mercy, this felt like too much. Again I felt like I was going to die. A week of near delirious fever and nausea; I’d have handled it badly enough in any other circumstance. 

As expected, I got through it. A horrible week, but just a week (or so). And then my dog Tobi died, just days later. 

This is it. This is the one I... I’m speechless about. The one I... maybe haven’t processed enough. I was just back from the edge of being badly, violently ill. I didn’t have the energy to write, physically or emotionally. And that just made it worse. I love writing. It’s my outlet (surprising, I’m sure). I wanted to write. I thought I ought to write. I needed to write. But I couldn’t. I couldn’t muster the words. I still... can’t. 

Tobi was... my baby. Not literally, of course. I didn’t conflate him with my lost child or anything. Tobi was 14. I’d had him since I graduated high school and got an apartment. Adopting him was one of the first things my husband and I did as an established adult couple, before we were even married. He was there, at my wedding. The photographer took a cute picture of me holding him before the ceremony. He was 11 months old at the time. Still had all his brown spots before they turned tan, then later white. He was there; he was always there. He was my entire adult life. And now I’ve lost him, the pup I had longer than my marriage (though soon we will outlast him). He was the big brother to all my other pets. He practically raised all the cats, and they adored him. (Tobi was a chihuahua, so they might have thought he was just another cat.) 

He was a sweet boy, who loved his mom and dad first and foremost. When he was little, he was scared of everyone else. Eventually he warmed up to strangers and friends, and in his old age he mostly liked to nap somewhere on his own. He was silly and playful; he always chased the cats when they wanted to be chased. It was a game they all loved. 

The vet... well, we took him in when he started to cough badly. He’d had a cough for a few months, but it wasn’t constant and didn’t seem to be affecting his quality of life much. But that day it was bad, so we took him. (We can’t afford frequent vet visits, so this was clearly desperate.) The vet took him and put him on oxygen. We had to stay in the car because they weren’t open for human guests. Then she came and told us a scan had revealed cancer, marbled through his lungs. He was suffocating. In fact, he wouldn’t likely even make it home, not even the two mile drive. We had to put him down. My husband and I cried like babies. We’d never put an animal down before. Generally speaking, we don’t really ‘believe in it’, if that makes sense. But faced with this situation, we had no choice. 

I didn’t see him again. I think that’s the worst part, though it would have been equally bad to see him, I think. And it was all so sudden. He was playing and chasing the cats the day before. Begging for treats of human food. Barking at the Roomba. And then I had to pay hundreds of dollars to say goodbye to him. It felt so unfair. I cried all day. My husband and I, we just went home and laid down and wept. 

But I still haven’t written about it, not in the way that I wrote about the others. For all that I wrote here, it doesn’t begin to encompass my deeper feelings on what it means that he is gone, and how I felt to have to make that decision. I have ideas. I think I know what I would write, if I could, but writing... still mostly eludes me. I may try. I probably should. 

I take a deep breath. I know I should sum this up and take care of myself, but there’s yet a little more to say. 

I think Tobi’s death is a large part of what affects me still, but several weeks ago I had what I could only call a panic attack. In the middle of the night I awoke, my heart beating rapidly, a horrible feeling of dread like certainty that all I could possibly do was die. It took over two days for me to feel mostly normal again, and then I still felt vaguely nauseous for two weeks. Then, just a few days ago, it happened again, but this time before bed. I could feel it rising in me, this indescribable sickness. It took several days ago before I felt normal. And this is where I am now. 

Sadly, a little while after the first panic attack, my husband and I failed to save a malnourished feral kitten. It was not a surprise, but yet one more reminder of the fragility of life, and how little I can do to keep death away from those I care about. This poor thing, it was so desperate to live, but nothing we could do could save it. I could have poured all my time into trying, could have scrounged up money to take it to the vet (when I should take my own cats, who all have colds), but I know better. I know... so much of the time, there’s nothing you can do. And now I’m trying to help what might be its siblings, a few cute feral kittens nearby. My favorite seems... a little lethargic, and not very interested in eating the wet food and meat scraps I sometimes bring by. I don’t think there’s anything I can do, if it ends up being sick, if it ends up being malnourished. I can’t bring it inside when it could infect my own cats. I have to care for them first. 

But knowing that it could die... it bothers me. 

And knowing that I could die. I could die. I’m too aware of that, on top of everything else. I hate doctors, so I never go. (Also I’m poor.) This toothache? Could be a terrible abscess. My brother went to the ER for sepsis from an abscess tooth recently! That’s probably what caused the panic, to be honest. But then... why have I felt so week? Is there a problem with my blood? Am I sicker than I know? Do I have breast cancer? My grandma did, and I know I should get it checked out, but it’s just ONE MORE THING. It’s always like that. 

And that’s... how I feel right now. Covered in ‘one more thing’s on rainy days and night-work schedules. Trying to take care of myself but not always knowing what that means. Lacking the inspiration to do the things I know I enjoy, because worry and apathy holds me back from everything. 

I’m okay. Really. No day of mine is ever entirely without merit, and I have plans to do most of the things that should keep me healthy. But the day is short when my needs and long, and the day is long when I’m paralyzed by apathy. 

So. I’ll just take it a moment at a time. And when I can, I’ll try to keep writing. 

[shanie-the-toyaddict]

Ok, so I’m like, two days late with this...

This past Thursday, I had a doctors appointment. I had to fill out some paperwork, and when I wrote the date (5/23/19) I did a FULL STOP and just went “...OH”

Now, to explain. There are certain dates that affect me. January 15th is obviously one based on my love of Shane.

May 23rd is another for a WHOLE OTHER REASON.

For anyone who doesn’t realize what I’m getting at, this past Thursday was 20 years to the day since Owen Hart fell to his death at Kemper Arena at the Over The Edge PPV.

It was a night I can never, and will never forget.

Being a minor at the time (I was I think 15), I had ZERO say over wanting to watch a PPV, let alone a WWF (Again, yes F) PPV. HOWEVER, there was a technique back in the day, where if you turned your TV to channel 1, you would get to LISTEN to the PPV while the video feed was scrambled.

So naturally, this is how I watched ALL PPVs from October ‘98 until about September 2001. Basically, until I got to college and could visit a Sports Bar and watch it properly. 

So, anyway, there I was, sitting in the basement, TV on (quietly) doing my homework. When IT happened. At first I didn’t realize what was going on. But as it dawned on me, I got really upset. I turned up the TV to better hear JR and Lawler. Of Course, this brought down my Mother who demanded I turn the TV off and focus on my homework. I refused shouting “You don’t understand, I THINK SOMEONE JUST DIED!”  My mom, not believing me, rolled her eyes and took the remote from me and clicked off the TV. She then proceeded to sit with me for the rest of the night and made sure I didn’t turn the TV back on. I never got to hear the end of the PPV and I never heard the official announcement of Owen’s death.

Fast Forward to the next morning. My mom, at 6am, rouses me to go to school by saying “Hun, get up. Wake up. Remember how you said someone died on WWF last night? You were right. I’m so sorry.”

I SHOT out of bed like a rocket and IMMEDIATELY called my Boyfriend’s house... at 6:15 am. I get his mother. “Hello??? YESS???? Who is there???” “Um yes, It’s Missy. Can you put Josh on the phone, it’s an emergency”

I had to be the one to tell him. He was a bigger wrestling fan than I was and I had to tell him. It wouldn’t be the worst thing to happen to me all day though.

That came once I got to school. I arrived at school, and met up with my best friend at the time, Aurora. She was all excited and the first thing she asked me was “So... did Owen win the belt last night? Tell me, I need to know!” Y’all don’t understand. Owen Hart was her HERO. He wasn’t just her favorite superstar. Owen was to her what Shane was to me: Her reason to wake up in the morning and function. She had actually gotten to meet him years earlier and it was the “Best day of my life” she always told me.

Do you have any IDEA... and NOTION what it is like to tell a teenage girl that their hero just died? To tell ANYONE that? To just hear the words leave your mouth and just watch someone’s entire WORLD CAVE IN.

She just started SOBBING and fell to the ground because her legs refused to hold her any longer. And she lay there, on the floor of the upper commons, for a good seven or eight minutes after the bell to go to homeroom rang. She simply could not process anything. I eventually had to basically pick her up physically and guide her to her locker and homeroom because she couldn’t stop crying. 

Mind you, I was bullied almost non-stop from kindergarten until 11th grade. I spent a whole year of high school as a suicidal mess. I was humiliated by my “Friends” during school events several times that still haunt me.

This... this was the worst day of my entire childhood.

I really don’t want to remember much more than that. I watched RAW is OWEN that night and cried the entire time. Watching the superstars who I had so recently become vested in cry, WATCHING SHANE CRY, it only served to further cement Monday, May 24th, 1999 as one of the worst days of my entire life. 

I read an article tonight about how the event not only caused an ever further rift between the Harts and the McMahons, but also caused an internal fracturing of the Hart family. I don’t know enough about that to comment nor do I really want to. But I do know this. Bret makes a good point. By preventing the current WWE from airing/honoring/acknowledging anything about Owen, all that has happened is an entire generation has gone by and knows nothing of his legacy. While it may be for different reasons, he has been erased just as much as other superstars and alumni that have been blacklisted. I’m not naming names, but there are many people in the current HOF who don’t deserve it NEARLY as much as Owen does. But we all know he will never be allowed it and it SUCKS.

This has gone on way too long, but I felt the need to put this on here. I don’t know how many people will actually read this, and it’s almost more of a journal entry than anything. But to me, May 23rd is one of those days which I can’t help but notice as it comes and goes every year. Being the 20th anniversary just meant that I had to say something this time is all.

PS. Aurora was not the only best friend I ever had who went through this. My current BFF, on tumblr as @aquilalorelei, had to experience the death of Kevin Tod Smith (AKA Ares, from Xena). By being her friend all these years (I luckily didn’t befriend her until AFTER his death) I have seen proof that this kind of pain doesn’t go away. It lingers and eats at you. You might not have been a part of that person’s life IRL, but they were very much a part of yours. At least when an actual IRL loved one dies, you have memories with them to hold on to. Very few people ever get to experience meeting their heroes. Those that never do will never have that first-hand experience to remember. So do I think losing an idol is worse than losing a true love or family member? No, not worse. More like ‘equally painful in a different way’. In conclusion, I have posted twice tonight about the parallel worlds notion. Somewhere, in the multiverse, we can take solace in the fact that there is an alive and well Owen Hart who got to retire, and how resides in that world’s Hall Of Fame. We may not be lucky enough to ever experience that world. But the thought that it exists does cheer me up slightly. 

RIP Owen. We still haven’t forgotten you.

[byerly-strange]

If you do what I request I have a wish: please post this on Remembrance Day, please (not trying to sound rude). I got this idea of Will getting his hands on a piano and loves it, on Remembrance Day Will plays the song: Last night I had the strangest dream (Pete Seeger) and sings along with the piano and the whole party was planning to go to Wills for a meet up, and they hear him and listen in awe when the song ends Will see them and gets really embarrassed (fan fiction if you can)

Sorry this is late, I really wanted to get this out yesterday but my parents visited me at school so I never had time. It is slightly different than what you asked but I felt as though it kind of fit. I hope you enjoy. This will also be on my ao3.

It was a cold, and windy November 11th. The kind of cold that made Will’s teeth chatter, and body shiver. The brisk fall wind blew against Will’s face as he walked over to Mike’s house, dipping the bottom of his face so that his mouth and nose were covered by the tip of his winter jacket. The walk was about 20 minutes and usually he would be biking, but his chain had broken the other week and Dustin hadn’t gotten around to fixing it for him yet. Will didn’t mind the walk though, there was something serene about the cold air tinging his nose and ears red at the tips while the fallen leaves were being picked up in the wind. It gave Will a sense of calm that was much needed in his life. 

He reached Mike’s door and just kind of stared at it. The whole party was supposed to be coming over for a movie night, which made Will a little queasy. Seeing Mike and El together always made Will’s chest burn and his stomach feel a empty. Will knew it was jealousy he was feeling but he needed to suck it up. He didn’t want to ruin everything he had with Mike, Mike’s relationship with El, and his own friendship with El just because he couldn’t get over and old childhood crush.

Will was taking his hand out of his pocket to knock when the door suddenly swung open and staring back at him was Mike in all his lanky glory. The boy towered over Will, who was only 5’3” at 15, Mike was at least 5’9” so Will had to crane his neck upward to meet Mike’s eyes. His eyes were a deep coffee colored brown and seemed to stare right through a person’s walls and straight to their soul.

“Hey! You’re early! I am going to get El and Dustin cause they don’t wanna walk.” Mike had gotten his license two weeks earlier and had since become the party’s designated chauffer. “My parents left to take my sister to some birthday party, so you can either stay here and wait or come with me to get them.”

“I’ll just stay here and wait. You won’t be gone long anyway.” Will didn’t really want to be in a car with Mike and El while Dustin made weird jokes in the background. It just sounded all too much for him to really enjoy himself. 

“Okay, well you know where all the food and drinks are. I’ll be back in 10.” Mike walked by him and waved goodbye. Will watched him walk to the car before showing himself inside and grabbing a glass grape juice, which he mixed with some of Mrs. Wheeler’s red wine. It was something he had picked up only recently. This time of the year was extra rough for Will because it was the anniversary of him disappearing, and the anniversary of Bob’s death. His Mom didn’t drink much but Jonathon had left a bottle of wine at home when he came to visit a few weeks ago and on a particularly bad night Will had begun drinking it. He didn’t drink much still but knowing that he was going to be around Mike and El all night made him want to numb all his feelings just a tad.

Will wandered around the Wheeler house, finding his way to the living room where the piano was. Jonathon had gotten him a book for his birthday last year and Will had been learning to play on a keyboard that Jonathon had found while in the city. He began to play on the Wheeler’s Upright piano, which was slightly out of tune since Nancy had left for school and no one played it anymore. It was different playing on the ivory keys of a real piano rather than the weightless keys on his keyboard. 

He first played a stylized version “Add It Up” by the Violent Femmes. He had learned the chords for the song and slowed it down so that he could sing along to it. Will did not advertise that he liked to sing mostly because it was already hard enough at school and being singer wouldn’t help keep his bullies from calling him every gay slur in or out of the dictionary. He didn’t even tell his friends, but that was because if he wasn’t good at singing he didn’t want everyone to know.

He finished the last note and just stared at the piano. The wine was starting to kick in and he couldn’t stop thinking about Bob, and the music he used to put on while he was at the house. There was a song that he used to play, and Will had learned it on the piano the other day. He hit the first G chord and began to sing.

“Last night I had the strangest dream I ever dreamed before.” His voice was high and soft. The original singer, Pete Seeger had a very deep and folky voice, but Will just couldn’t hit those notes. “I dreamed the world had all agreed to put an end to war.” Memories of Bob Newby, superhero, began to flood Will and he began to cry. Bob wouldn’t have died if he hadn’t been caught by the Mind Flayer. He deserved to live, all he wanted was to be kind and for everyone he loved to be happy.

“I dreamed I saw a mighty room, the room was filled with men.” Will’s voice began to falter as his tears began to fall more steadily. He didn’t hear the door open behind him and all his friends file in one after the other. They followed the sound of the small boy’s voice and the piano. They all stood in the door frame a little startled by the music filling the whole house. Will continued to sing, and everyone could hear the pain in his voice. It hurt them to hear him so devoid of joy. 

Mike walked over to the piano bench, Will didn’t notice him until Mike sat down next to him and put his arm around him. Will stopped singing and playing immediately, and his face went from broken to embarrassed in record time. “Holy shit, how long have you guys been here?” 

“Long enough buddy. I didn’t know you could sing.” Mike was the only one Will was looking at, Mike was so calm and understanding. They weren’t going to talk about the tears but Will knew they could if he wanted to, and that made him feel safer than he had felt recently.

“I don’t sing, not well at least, not like Lucas or Dustin. And I didn’t want anyone to know, but I got caught up in the piano.” He looked away from everyone, clearly embarrassed that they had heard him sing. His face a shade vermilion red.

“You absolutely can sing; your voice is different from Lucas’ and Dustin’s but still beautiful. It is soft and understanding, just like you are.” Will turned his face to meet Mike’s eyes. His eyes were doing that thing where they look right into the deepest part of your being ignoring every wall you put up around you. “Come on we got a movie to watch.” Mike grabbed Will’s hand leading him from the bench to the couch. Will’s heart skipped a beat, but he knew it meant nothing special to Mike. Doesn’t mean that Will couldn’t enjoy the feeling though.

[rilenerocks]

February 28th, 2015

Michael woke up feeling nauseous and vomited bile. We waited a few hours – then he tried an Ensure and some applesauce. Those came back up so off we went to the ER for dehydration and anorexia evaluations. Neither was found and his blood work was all within normal limits except one liver enzyme which is still recovering. He is still taking oral pain meds-are they the source of the nausea?

We roll into early March, getting ready for the next scans. There are times when the pain abates and Michael experiences occasional hunger which we try to maximize, stuffing food into him to in an attempt to keep him as strong as possible for whatever lies ahead. On these good days, we go out for a meal or try to see a movie. During one of these rare forays into regular life, a romantic song from our very beginning pops up in the film. We both get chills and squeeze each other’s hands tightly, as for a moment, we drift back to that exquisitely innocent time. Meanwhile, our oncologist Dr. Luyun, has decided to have M try a fentanyl patch for pain. Michael is ready to try anything at this point. He experiences immediate relief and feels great for a day or so, but the pain returns fast. We received little information about how long it takes for the drug to build up in the bloodstream so we didn’t realize that he’d need supplemental oral meds until it did. We are so overwrought and frustrated. When he’s hurting and tired, I am as well. He’s tired of reminders about food and drink and I’m tired of feeling impotent. Our personality differences serve us poorly  during these stressful times. When I get quiet, to stop being a bother, Michael doesn’t like that personality either. Finding a balance is hard as I am imperfect and certainly not saintly. Neither is he. At night, I lie in our bed, feeling him twitch and have tremors. We never sleep apart – there’s no room for that distance even if we’re both irritable.

March 9th, 2015

I lay here, wondering what the scan results will show, where the cancer is now, if it’s hitting his spinal cord, whether he will have permanent damage, become a quadriplegic, lose control over bladder and bowels. I want to know everything and nothing and I want both to hurry up.

By mid-March, we have scan results that show that the cancer spots are all growing but still reveal no clues about the cause of the intensity of Michael’s pain. We asked for a referral to orthopedics where there’s a very smart doctor out of Harvard. After checking all the scans, he recommends MRIs for the lumbar spine and both hips. He thinks those will provide the best diagnosis which can’t come soon enough. I’m still writing to principal investigators running Merkel cell trials across the country. The idea that you can get into a trial easily is completely false. The bureaucratic aspects are truly maddening, especially when there’s blatant evidence of a terminal disease. If a person is going to die anyway, why not let him have a chance? But that thinking is for another time.

The MRI results are terrible. The cancerous lesion that has been sitting in the disk at T-12 for months has permeated the disk wall and is compressing the lumbar spine. All the nerves in the cauda equina, the nerve bundle in the thoracic spine are being squeezed. Big pain.  We are now in a medical emergency and in need of a neurosurgeon. Our radiation oncologist tells us that the disk has to be removed and that an artificial one must be inserted in its place. This would be a lengthy, complex operation. We quickly acquire an appointment with the most experienced neurosurgeon at our facility. He reviews all the MRI images and informs us that in his opinion, this compression is not a medical emergency and that we should return to oncology for radiation and chemo. We sit dumbfounded. There’s no time to go hunting for a different doctor. We realize that his pronouncement is code for either 1) his not being able to perform the procedure, or 2) that there isn’t any point in trying. We head back to Dr. Stanic, our radiation oncologist, who takes a deep breath and designs a radiation plan for the lower thoracic and upper lumbar spine which he warns carries the risk of paralysis. The treatment will be coupled with the chemo drug Topotecan, the second line of defense for MCC. Michael and I are both terrified but he continues to be willing to do whatever what might possibly keep him alive. For me, I bounce between admiration and despair.  The appointments are scheduled. 

The beginning of April starts with the first of 15 daily rounds of radiation. The chemo will be given once a week. This beautiful spring month will be consumed by treatment. When Michael isn’t too fatigued, we decide we’ll just enjoy spending time with our family. Our world has gotten very small. Michael is inner directed and focused on trying to stay alive. I’m committed to helping him in any way I can. The stress is punishing. On April 6th, the fourth day of radiation, we are entering the Cancer Center when I receive a phone call from one of my nieces, letting me know that my brother was found dead that morning by his wife. The cause was determined to be congestive heart failure. He was a troubled guy and in the previous few months, I’d been so consumed by Michael’s cancer that we’d barely spoken. There was nothing to do but go forward, sitting in the waiting room during the radiation appointment, contemplating life and death and everything in between. My goodbyes to Fred would have to play out as I kept plowing through what was in front of me. No more big brother. The days went by, blending into each other. Every time there was a chemo treatment, Michael would have blood drawn to see if his counts were stable enough to cope with the infusion. When the time for the third one came, his platelet count was so low he was at risk for a stroke. The chemo was withheld and instead he had a platelet infusion. Then he started a course of steroids to try preventing any potential bleeding in the brain. Another stunning blow. April is ending.

We head into May, trying to achieve some stability, physically and psychologically. There are days when Michael feels okay – we head outside to appreciate the weather and the garden. Throughout his entire ordeal we have managed to stay intimate. On May 6th, during the process of running my hands over his familiar body, I find a lump in a new spot near his spine. The next day, I call our oncologist to request a scan and find out that he’s resigned from the clinic. We are now without an oncologist – every original member of Michael’s treatment team is now gone. We go back to Dr. Stanic who quickly orders the scans for the next day. The results show stable disease. I can’t understand it. I remember that PET/CT scans don’t show any masses smaller than a centimeter. Now it is May 11th. Our May 1st wedding anniversary kind of slipped away. After running an errand, I came home and found flowers, anniversary cards and Mother’s Day cards from Michael which make me weep. May 18th. Michael seems to be getting weaker. His appetite is poor and he is deconditioned. Sleeping a lot and getting breathless just walking through the house. I’m reading books for widows. I don’t find them very enlightening. Michael talks about death with dignity, although he says he feels stable. He doesn’t look stable. He is weak but trying to act normal.

What is happening inside me? I feel like pieces of who I am slough off every day. Like silt.

May 24th, 2015

I am lying in my bed on the morning of my 64th birthday. Michael’s hand is on my leg and I’m listening to him breathe. I fear this is the last birthday he’ll be next to me. Forty three birthdays shared. This one feels meaningless. There is a lump on his neck at the base of his skull. Last night I felt one in his left groin. Scan or no scan. These lumps are real. I am walking through this life, feeling mostly dread. My hope is dwindling. I have used myself up.

 May 29th, 2015

This morning I found 3 pea-sized lumps on Michael’s head, very close to the site of the excision of his tumor on February 25th. The lump at the back of his neck is a tumor. I just know it. On Monday there will be biopsies of his head. This time, the surgeon is too busy to see him and a physician’s assistant will do the cutting. We know it’s Merkel cell. We’re only going to let him biopsy one growth. Then we’ll finally have the soft tissue requirement that kept him out of the Barnes clinical trial. We are still hanging on, albeit by the proverbial thread. We meet with a palliative care team on Tuesday to see if they can help keep Michael comfortable, both physically and mentally as this all unfolds.  So much darkness while we fumble forward.

June 2nd, 2015

I am visiting mom at the nursing home. She has about run out of money and I am trying to get her Medicaid in the midst of my nightmare. She always remembers that Michael is sick. She asks me, “if Michael dies, do you think we should try living together?” I remind her that we already did that. In the midst of her dementia and my grief, we both laugh.

June 5th, 2015

Michael is getting weaker and less hungry. Today is his birthday. We spend a lot of it crying. Michael’s emotional pain is finally bursting out of him. He says he’s never lost anyone before, that the first person he’s losing is himself. The kids come over and we all sit in the yard for awhile. We all act just like ourselves which is both bad and good. The weight of what’s ahead of us is like a massive tsunami getting ready to wash us all away.

June 8th, 2015

SCAN DAY.

June 16th, 2015

The week has been madness. The scan of the 8th showed widespread disease including a pleural effusion which is one of the reasons Michael’s breathing is so labored. Dr. Stanic soberly tells us that malignant infusions are virtually impossible to get rid of so that we should be prepared. Lumps are pushing out everywhere, neck, collarbone, both rib cages. I have no idea how Michael is still breathing. We now have a new oncologist, Dr. Zhang, who we’d seen a few times when Dr. Luyun was unavailable. He is smart and aggressive. We go to see him the day after the scan. Michael is so weak he’s in a wheelchair, but eventually has to lie on a bed in the infusion suite for his appointment. Miraculously his recovered platelets, plus the soft tissue disease finally qualify him for the trial at Barnes. Dr. Zhang goes to call those awful people in St. Louis to clear a path for us. Now all we have to do is gather up all the records, forward the scans and move into the trial. At last. Michael is resting at home while I run around gathering all the information. Again, I’m communicating with Dr. Linette and his nurse. A few days pass and there is no action from Barnes. When I call in again, I’m told that Michael isn’t in the trial, but rather that we have to come back so they can do their own scans. I am enraged and feel like I’m going to have a breakdown. I vow that when this ends, I will eviscerate Dr. Linette and his harsh nurse Joanne. Meanwhile we are to see Dr. Zhang tomorrow.

June 17th, 2015

Dr. Zhang is infuriated to hear that we are not in the trial. He asks us to sit and wait for awhile. When he returns, he tells us that he has managed to order pembrolizumab (Keytruda) off-trial for Michael and that he will receive an infusion immediately. This drug is in the same immunological family as the trial drug at Barnes and has been used for melanoma patients. This is an outside the box move. We are grateful for anything as we get ready to leap into this unknown, untried space. Unless this drug is a miracle, we have to face Michael’s death. Can we find a way to walk this path without crashing into a thousand pieces? Michael has suffered agonies. I am as close to him as anyone can get to another human being. Off to the infusion suite.

June 20th, 2015

I am lying in bed with Michael while I still can. The days are the same. I wake thinking of his death and the horror it will bring. I go away to the park in the morning and cry. Then I run errands and on good days, I swim for awhile. Then I go home and wait for him to come downstairs so we can begin the endless battle over food and protein. He sleeps a lot. We are next to each other, often in silence.

June 18th, 2015

Although it seems crazy, the day after the Keytruda infusion, the visible tumors on Michael’s body seem inflamed. The immunological drugs are supposed to remove blockades from the body’s killer immune cells, releasing them to kill your cancer. This sudden release produces an inflammatory response. Michael’s fatigue is profound. But I decide to start measuring what I can see to track the potential progress. Within two weeks, the tumors which initially looked worse, are visibly shrinking.

Michael is dragging himself through this process. Even though his style is so different than mine, I am awed by his stubborn courage. The Keytruda has impacted his pleural effusion. Twice in July, he has had to be “tapped,” to have fluid drawn from between his lungs and body wall. This is done by inserting a needle into his back. Dr. Zhang doesn’t want to chance having any tubing inserted permanently to stave off the risk of infection. The first tapping fills a 2 and a half liter container. The fluid is blood-red and is 100% Merkel cell lymph fluid. The second tapping fills 3 liters – as I look at it, I think half of it looks more amber colored than red. It appears the drug may be having a positive effect. July 12th, 2015

Mom has fallen in the middle of the night at the nursing home and has broken her hip. I run to the hospital where she tells me that she doesn’t think she can “make it through this one.” I an worried about surgery for her but the orthopedic surgeon says the pain without intervention would be intolerable. What he doesn’t talk about is the hospital delirium that accompanies dementia patients after general anesthetics. Mom survives the procedure but is in a dreadful mental state in addition to having post-surgical pain. For eight days, I run back and forth between her and Michael – finally I request hospice for her and a return to the nursing home before she forgets it altogether. I have to fight for hospice but she actually recognizes my conflict with the staff and supports me. Four days after she’d been returned to the home, I receive a call from a staff member saying that she’s asking for me, just as I’m walking Michael into the cancer center. My daughter swaps places with me. My sister joins us on that July 24th afternoon and we sit with our mother, watching her slip away.

She died on July 25th. We had a rapid funeral with those of her family who lived in town. The heat was blistering and I was terrified that Michael would keel over at the cemetery.

Four days later, our beautiful dog Flash, who’d developed a cough, had me very worried. I took him to the vet and asked her to diagnose him before I left. I didn’t think I could stand to bring him back there again. Bloodwork showed nothing but then she X-rayed his chest. Poor Flash had lung cancer and a pleural effusion, just like Michael’s. I held him as he was euthanized, went home and sobbed with the whole family. What an impossible time.August, 2015

Michael was still fatigued but slowly improving. The physical part was challenging but so was the mental exhaustion. I was utterly spent too, but continued to push forward. Day by day, he began to recover in teeny increments. We went out to eat. He worked in the yard. We tried a staycation at a hotel where he sat bundled up and wasted, but was grimly happy to be out of our house. We went to a rock concert at our local sweetcorn festival.

September, 2015

Scan month. Living between scans may be the hardest challenges we faced those many months. As time went by we got smarter about them, scheduling the follow up appointment for the day after the scan so we wouldn’t have too much time to worry. The early September scan was no exception – we went in for it one morning and by the next were getting the results. Which were spectacular. Between June and September, 80% of Michael’s cancer had vanished, including the pleural effusion. Dr. Zhang brought a colleague in to see the results as he was so excited he was barely contained. Michael was one of the exceptional responders to this new class of drugs, one of the 30-40 % whose bodies were just waiting for help in unleashing their cancer-killing cells. We were thrilled but still cautious. Every three weeks, there would be more treatment, more blood tests. But Michael was almost over the precipice and now, was back in his life. And mine.  

Cancer Drops the Hammer – Part 2 – Chapter 10 – Be 278 February 28th, 2015 Michael woke up feeling nauseous and vomited bile. We waited a few hours - then he tried an Ensure and some applesauce.

[thatsbrookie]

Nov 13 - STRESS

This weekend was such a roller coaster.. I'm just sitting here thinking about all the events and I was like "MAN, I wanna write bout these events" So, here we go. Saturday was good. Except not really. Let me tell you some backstory.. (I had to Google to see if 'backstory' is one word) About 2 weeks ago, Greg and I were hanging out and he said he heard about some anime convention going on at the civic center on Saturday the 11th. He said he really wanted to go, and even though I am only mildly into anime I was on board. I like to support Greg's nerdiness. The next day, I went to work and told Morgan about it. She said she hasn't heard of it but looked into it, got hella excited and told Andrew that the four of us are going together.  Side note: Morgan is really into anime. And she always says I am the one who got her into anime. (Ironic because I'm only mildly into it, as mentioned before) About a year ago we were talking about our favorite television shows and I found out she's never seen Death Note (One of my favs) So I demanded her to watch it. She loved it and she started watching more and more anime. Now a huge fan. From there, Morgan talked to Matthew about it (her brother) and he really wanted to go too. Matthew invited his best friend Molly to come too. So all 6 of us were planning to go and nerd out. Also, a couple days before I told Josh about it (Cause I know he'd be interested in it) and he said he was planning on going. Cool!  So I'm excited.  Then Friday, the day before, Greg comes over to my place to hang out. I'm cooking us dinner and he gets a call that some meetings got switched around and that he's going to have to be in his Pine Bluff territory for the majority of Saturday. He was pretty bummed about it.. Especially since it was his idea to go to the convention in the first place.. But I was like really upset. I don't know why I got so upset about it. Not at him, just the situation. And this has happened before. On multiple occasions Greg has had to cancel plans because of work, or even get called out to work in the middle of our evening together. It sucks, but it's apart of his job that he's on call a large majority of the time. I'm not sure what it was about this time that was especially upsetting to me. Maybe because I was looking forward to it so much.. So, the next day, Morgan, Andrew, Matthew, Molly and I all go to the convention. It was pretty fun. I tried to take as many pictures as possible to show Greg. I missed him. Then we went to go have lunch at Chick-fil-la.  That night I was just hanging around the house with the pups and decided to try some of the wine I recently ordered. There's this site called Winc where you can order quality wine for good discount prices and have it delivered to your home. I had always thought about trying it out, but was always skeptical. Well, after months of being skeptical, I finally ordered some. I posted a picture of them a couple days. Super cute bottles. Well, one glass turned into two. Two into four.. Four into eight.. Next thing I know, I'm waking up Sunday morning on my mother's couch.. What the fuck. How did I get here? I walk home and I am SICK. So I spend the majority of Sunday wishing to die and recovered from one of the worst wine hangovers of my life.  That night I went to Greg's house. I don't know why, but I was super emotional. I started crying and Greg, bless his heart, was trying so hard to be supportive even though neither of us knew what was wrong with me. He was trying to lighten the mood and cheer me up by making a "joke" but it wasn't funny. Very insensitive, in my opinion. So, we got into a fight and I left. Greg and I very rarely fight, so I was double upset.  It's now Monday morning, I'm here at work and I feel like shit. My body is still pretty pissed at me because of all the wine and I barely slept last night. I was just so restless because of the unresolved Greg conflict. My mind was racing last night with all sorts of anxiety. Like how Christmas is 6 weeks away and I have done ZERO gift shopping. I don't even have money saved up to buy Christmas gifts. And Mom's birthday is 2 weeks away, I have nothing planned for that.. Speaking of mom, I can't remember how I ended up at her house on Saturday and I feel like I should be really embarrassed of myself.. Who knows what I said or did. God.  Also, Greg and I have our New Years trip to Michigan. Every New Years Ryan and Gabby have a 3 day long celebration at their house. Greg always goes, and I'm invited to go this year. After looking at flight prices (CRAZY expensive) we decided to drive. We drove to Michigan before (for Ryan and Gabby's wedding), so we can do it again. We're planning on leaving on the 27th or 28th of December and coming back on the 2nd on January. I gotta start saving up money for that. Plus, I am going to have to have the pups boarded during that time, which is going to be pretty expensive. Ugh. I just get so stressed out with all this money shit.  I was kind of thinking about taking off work on Thursday, the 16th. Because that's Brady's birthday. That's always the hardest day of the year for me. I feel like most people who have experienced death of a loved one think the anniversary of the death is the worst. I think the birthday is the worst, though. But after thinking about all this financial stress, I really need to work at much as I can.. I dunno. I haven't had a day off in a while.. I'll think about it Speaking of work. A couple days ago, big news has developed. Celita is pregnant! And it's not necessarily a good thing. Celita has been in a FWB relationship with this guy named David for a pretty long while. And apparently David is NOT happy about the idea of being a father. He is 25, in college and working full time. He says he doesn't have time to be a father and has been saying all sorts of nasty things to Celita, encouraging her to get an abortion and swearing the baby isn't his. Meanwhile, Celita is really trying not to let his cruel words get to her.. She has made up her mind to keep the baby. This will be her 4th child, she's 36, and she's dealing with it all really well. I feel really bad for her though.. She's told me some of the stuff David has been saying to her.. I can't imagine. She's really strong. I admire her For about 2 weeks now, yes, 2 WEEKS our work bathrooms have been out of order. The last week of October the sinks stopped draining and one day the toilets just started overflowing. It was terrible. Someone called building management, they came over and did something and we thought it was fixed. Next day, same problem. They came again, it was fine for a couple hours, then overflowed again. So we called professional plumber people, they came and did something. It was okay for about a day and half, but then all the toilets started overflowing again. And it's just been back and forth, back and forth.. I don't what the fucking issue is, but I'm getting fucking tired of it. Because I normally drink about 3 liters of water a day, so bathrooms are pretty important to me. We've been having to walk across the street to the Vantage tower whenever we need the bathroom. And it's really annoying, especially when it's raining.  This whole text post has just turned into me bitching about life stress. I'm sorry, I'm just not in a good mood. At all. However, writing all this out has made me feel a little better Well, it's about to be lunch time. And before I go to lunch, I have a couple work things I absolutely have to do. So, I'm going to end this now.  Goodbye Tumblr