cic-a-trize

[cic-a-trize]

Call it home

“i know the world’s a broken bone

but melt your headaches

call it home”

I know this lyric was written years ago, and I know most of you have never heard the song it’s from, but I think this is the lyric that best sums up 2018 for me.

The world is broken. The world is an ache that’s healing so slowly. The world is a pain that’s always with you, in a bulky shell meant to heal but it feels like nothing is getting better.

But it is. You can’t see it under layers of plaster and skin and muscle, but slowly and surely things are getting better. I know some things seem hopeless and there are horrible things happening in our own backyard, but there are beautiful things happening too. You can’t be so focused on the pain that you ignore the blessings.

I’ll never be sure what Ryan meant by “melt your headaches,” but that’s what I take it to mean. Don’t let the pain blind you to the good in the world. People loving and helping others, especially strangers, and especially when there’s nothing in it for them except the joy of helping others. Babies being born to loving, amazing families that will raise them to be their beautiful selves. People finally standing up and saying “We are tired of this shit. Give us our home back.”

Three years ago I was still in the first days of my cancer MISdiagnosis (don’t want to alarm anyone new), and I’d had my first CT scan and gallons of bloodwork and I was getting ready for my first lumbar puncture and trying so, so hard not to fall for this friend of a friend I met even though I have never once had control of my heart. (Spoiler Alert: I was unsuccessful.) I remember lying on the couch, knowing that sleep would only come when I literally could not stay awake any longer. My mind was more than a speeding freight train. It was a bullet train heading straight for a wall. My life felt like a crash waiting to happen and I just wanted to minimize the number of people on the train with me and instead more people were just clamoring on.

Later that day my friends would come to help me again because my body was already becoming so tired of just...being. We would talk about what I wanted to do after the LP because I needed to be taken care of for a bit, and without even thinking I said I wanted to be taken care of by him, to go home with him. He seemed okay with that. I told myself it was because I didn’t want to burden my parents, but the truth was that I felt safe with him. (Still do). He stayed later and put my new TV together, and for some reason that meant taking off his shirt and turning his ballcap backwards. (I thought this was for my benefit but later learned that’s just how he does things. 🤷🏻‍♀️) I remember sneaking glances and counting his freckles like stars in constellations. I remember being devastated that we hadn’t met earlier. I remember me lying on the couch and him sitting across the room and both of us talking about how we liked each other, a lot, but neither of us were in healthy places to start dating someone. (And, to our credit, we never really dated. So.)

Tuesday, Wednesday, Thursday nights, he stayed later and helped more and we talked so much. Thursday night I had my brave face on for my LP the next day, but right before he left I asked him for a hug, and he gave me one of the top five hugs of my life. I learned later that he hates hugging, but he did that, for me. And again, I felt so safe.

Friday he sat with me in a recovery room for five hours. We talked and laughed and I let him feed me a piece of cantaloupe with his HAND and I didn’t even make him wash it or Purell and I didn’t know where he had been and looking back, that was the moment I loved him. I may not have been in love yet, but I trusted him in ways I don’t trust anyone and that meant everything.

When I was released he took me to his home and made sure I followed hospital instructions and cared for me and didn’t make me sleep on the couch but was so respectful and I never spent another night in my apartment again. I was his.

I love the people that we are now. I love our marriage, I love that our interactions are confusing to some people, I love that we’re learning to really get each other. Marriage is hard. Love can be hard. But he can make me snort laugh on a night when I fell in a locked public bathroom and there were fire trucks and MEMS and my body hurt and my heart hurt and I didn’t want to laugh but I couldn’t help it. He’s funny. He’s ridiculous and that’s my favorite quality in anything or anyone.

We spend way too much time together because he loves being home and I’m learning to hate leaving home (see above re: bathroom shenans) but we’re making that work too. The upside is that I still feel so safe. If I fall, he may not be able to catch me, but he’ll help me get up and make sure I’m safe and back where I belong, and in a lot of ways that’s better to me. I’m always going to fall, and I’d rather have someone help me get up on my own than follow me around with a net.

We have nothing in common and everything in common. We got married crazy fast and then got to know each other and then learned how to work together as a unit. We’re still learning and hopefully always will be. He is my favorite asshole and I love him so much.

He’s there when I wake up. He was with me for every broken bone in 2018. He was my crazy-colored cast, protecting the broken parts so they can heal. I don’t know if he knows that. I should tell him more often.

Preston. You’re my plaster cast. You’re my plastic bubble. You’re my panic room. I love you.

[cic-a-trize]

this leetle baby willow tree is growing in my brother’s backyard. it may not look like much, but my dad’s ashes are mixed in with the soil that nurtures this lil’ guy. I know that my dad’s soul, the essence of who he was, is in heaven; but in a way there are so many parts of him here, too. the hands that worked so hard to make sure we were taken care of and that could fix anything. the arms that would hug me and I knew everything would be okay. the legs that formed the lap that I would sit on. the brain that was always so annoyingly right, and soso smart, and drove me to want to be that smart.

this isn’t meant to be a sad post. this tree is beautiful because part of it is my dad. I am beautiful because part of me is my dad (...and also stubborn and sometimes too smart for my own good and annoyingly persistent and did I mention stubborn?) my memories are beautiful. I miss him everyday, and that’s beautiful in its own way because grief is just love with no place to go. I grieve so deeply because I loved so deeply, and what’s more beautiful than that?

[cic-a-trize]

ER Adventures! YAY!

So. First things first, I am my own version of fine. A little better than fine actually. Before I continue this post, I want to get that out there.

Saturday morning I woke up around 7:45 and I knew I'd have to go to the bathroom soon (long, complicated story about my condition that I don't share), so I played around on my phone a bit, then put it down to transfer from bed to my chair.

I couldn't move my right arm. Okay. I couldn't move my right leg. Okay. I had complete paralysis on my right side. Okay. I allowed myself to completely and silently panic for 5-10 seconds per my agreement with myself, and I waited a few minutes to see if it would subside.

It did not.

I woke Preston up, and my speech was slurred. I managed to get out "Preston, something is wrong" (which I have now learned is an awful way to wake someone from a deep sleep) and explained what was happening. He had me sit my bed up and try to move my right hand, which I could do with much difficulty. I was able to take a drink and not dribble all over myself, and within ten minutes from onset the paralysis was gone but my right side was extremely weak. Weak for me. Weak like baby.

After going to the little disabled's room and thinking and praying about it, I decided that I wanted to be seen and evaluated by a doctor, and since it was Sunday, that meant another visit to the ER. Honestly, I always get such amazing treatment at the St. Vincent LR ER that I was nonplussed about going but admittedly a tiny bit terrified about why.

(Backstory break! My most recent MRIs have shown evidence of previous strokes. Not TIAs, as I originally thought, but actual strokes. Obviously they have not been serious, because aside from maybe possibly the facial drooping, I don't have any lasting damage that I'm aware of, except the dead parts of my brain. But, like, 🤷‍♀️. When there are benign tumors on your brain, it's hard to tell what is and isn't related to the neurosarc.)

Based on my past and present and the knowledge that I was not at "Bridget-level" normal, I wanted to see a doctor. Worst case scenario, it was nothing and they send me home with a sticker.

We got to the ER and it was fairly empty. I signed in and went immediately to triage, and then immediately to have an EKG done (which, in case I forget to tell you later, was fine), and then when the phlebotomist was checking my veins they came in and told him not to bother because they had a room for me and would access my port for everything. (YAY lil port! Good job!)

So I am whisked away to a room and get onto a gurney which, I kid you not, had a crank to raise and lower the back. Apparently I was also whisked away to 1956. (Stay tuned for my massive rant about why a hospital has to hold onto every piece of equipment for as long as possible but I've never seen crank powered automatic rifle. It'll be a doozy!) I get settled, I meet approximately 19 people who introduce themselves kindly but I will never remember their names or functions. They hook me up to the BP cuff and sticky leads to something and those cool pulse ox thingies now that are adhesive so you can actually move your hand without the machine thinking something is terribly wrong and you have died but really you're just trying to get under the blanket, MACHINE. Geez.

I'm sorry, where was I? Ah yes. So they access the port to get blood and administer contrast for the MRI. I had a CT scan (Bridget-fine) and a brain MRI (Bridget-actually looking pretty good). The port needle hurts like a bitch when they put it in because it's nine feet long and shaped like a witch's crooked finger. BUT! My arms are bruise free and I no longer feel like the port was done for nothing. If all that ever happens is easy blood draws, it was worth everything.

A neurologist came in and talked to me and tested my strength and seemed really confused that I didn't have a neurologist and I was like, "Working on it, hot stuff" and my main ER doctor was amazing. He listened to me, and when I told him that I waited to see if maybe it was sleep paralysis he looked me dead in the eye and said, "Don't ever do that again. Don't. Ever. Do. That. Again." and I said "yes sir" like he was my dad. It was an intense five seconds.

Long story not even remotely short, the ER doc, Neurologist and Hospitalist on duty (who was also there when I had my blood clot) agreed that after taking into account what I told them and what they saw on the scans, it was not a stroke and was more than likely neurosarc related. The neurosarc can cause swelling, and meningeal swelling can cause excruciating headaches, and can cut off oxygen to the brain and mimic a stroke, but it doesn't leave any dead tissue behind. (The More You Know 🌈)

At first they were going to keep me overnight for observation, which I did NOT want to do, but Doc came in and said that they all felt I was good to go home. And he asked me if I was okay with that, which I thought was awesome. So after about 7 hours we left and I’m still slightly off, but I felt so much better. 

Two moments that really stand out for me: 1) There were probably three nurses, the CT tech, and Doc in the room and they were prepping me to go CT. When I'm scared but trying not to be, I tend to focus on minutiae to keep myself sane and on task. It suddenly occurred to me that not only had my insurance changed since my last visit but now it was Medicaid and I told them that and asked if they needed my card and they all just...looked at me. The CT tech literally said "We'll worry about that later. Right now let's worry about your brain." And I was like, "Oh right. That ol' thing."

It may seem silly but I seriously wondered if they needed to stop and make sure whatever they were going to do was covered or whatever, which is ridiculous because they can't refuse you treatment even if you don't have insurance, but this is the medical culture that's been built for us. Normally I don't worry about medical bills because you can't squeeze blood from a stone, but it's still so effed up.

2) Three different doctors and even more nurses listened to me, and in some cases deferred to my knowledge of neurosarc because it's so rare that very few doctors or nurses have a working knowledge of it. But I have been doing this for almost three years, so I know lots about it. I also know my body, and what's normal and abnormal, and in some cases I know what I do and don't need. It's a sad testament that I am really impressed by that, but I am. The computer spit out its little blurb on sarcoidosis and the discharge nurse was like, "We have some info here about sarcoidosis" and I didn't mean to but I laughed. As kindly as possible I told him we didn't have to go over that because I've been diagnosed for over two years and all that paperwork was going to mention was pulmonary sarc which doesn't help me at all because neurosarc was a weird and rare beast, but thank you! Then he rolled me out and we got food because we were both so hangry and then I slept the sleep of the comatose for about five hours. I’m up now because I had to do my methotrexate injection, but once I wrap this up I’m getting some chocolate milk and heading back to bed. Bastian is not so patiently waiting for me to do so.

ER visits are so exhausting. I am so blessed to have access to quality healthcare, and access to information about my disease.

Also, I really really really want you ALL to take this lesson thingy away from this post: Copy it, print it, hang it on the fridge, get a tattoo, I don’t care. Know this:

YOU ARE YOUR OWN BEST HEALTH ADVOCATE.

If your doctor doesn’t listen to you, find a new one. Yes, it’s a pain in the ass. I know, I’ve been through it often, but doctors don’t know everything. They are extremely educated and knowledgeable, yes, but I can pretty much guarantee that combined Preston and I know more about neurosarc than most of the doctors and nurses I saw today.  Sarcoid itself is rare, and only about 15% of sarc patients have neurosarc. It’s not that hard to understand why every doctor wouldn’t know everything about it. My last ER doc told me he probably spent a week on it in his residency. We’ve been reading everything from the  Mayo Clinic and the sarcoid center at Cedar-Sinai in NYC (love you Cathy!) and other places and I’ve been living it for years.

I repeat: IF YOUR DOCTOR REPEATEDLY DISMISSES YOU AND YOUR CONCERNS, FIND A NEW DOCTOR. Just because you’re not an MD doesn’t mean you don’t know your body. This goes double if you’re a woman. You deserve to be taken seriously because it’s your body. You live there. And it’s your job to take care of it.

It doesn’t matter if no one else thinks anything is wrong: IF YOUR BODY IS TELLING YOU SOMETHING IS WRONG, SEE A DOCTOR. It doesn’t matter if everyone says it’s “all in your head” because a) literally everything is all in your head because that’s where your brain lives, and b) even if it’s “all in your head” it’s still real. If you hurt, the pain is real. If you are having strange symptoms, those are real. If they come out in a few years and say neurosarc is completely psychosomatic, it doesn’t matter. I’m still in this chair. I still have these tumors.

If you’re avoiding going to the doctor because you’re scared of what’s wrong, go anyway. GO ANYWAY OMG. I put off seeing my doc about my weird leg problems because I was absolutely terrified it was going to be ALS. Not my best decision. And then, for three months I was repeatedly told that I had fatal brain cancer, so. I get it. I promise. But if something is really super bad, the sooner you find out and start treating, the better. Especially something like ALS or neurosarc that can take years to diagnose and tons of different doctors.

And lastly, BE HONEST WITH YOUR DOCTOR. Embarrassed about something with your lady parts? I don’t care, they don’t care, they’ve heard it all before. If one of y’all dies from cervical cancer because you were too prim to talk about your vajaje, I will be so pissed. Guys, some of my symptoms and side effects were SO EMBARRASSING AND HEARTBREAKING at first. I never, ever wanted to talk about any of it, with anyone, but I had to. And honestly in a few short months I went from shame crying in the shower for 30 minutes to looking at a doctor I had never seen before and saying, “Hey, yo, what’s up? My bladder muscles aren’t working right now and it’s getting to be a puddle problem.” Because peeing your pants, despite what Billy Madison will tell you, is not cool. It sucks, and it’s a damn mess, and if I can do something about it I’m going to. 

Eventually you will lose the ability to be embarrassed about things like that. I can no longer muster one single give-a-damn about pretty much anything. Stuck on the toilet in a country club because there are no bars and one of the cooks has to come into the ladies and help me stand up? Eh. 🤷‍♀️ And medically, I seriously said today, “I’ll take off whatever you want, let’s just do this.” As a girl who used to sleep in her bra because she was so ashamed of her body, I’m now a medical exhibitionist. The MRI tech was very careful asking about my weight, and I said “Look. I have no medical shame. Ask me anything, tell me anything, squeeze me into that machine like a sausage, I don’t care. Just take care of me as best you can.” And before the MRI, I told him what I needed: a washcloth over my face so I didn’t open my eyes and go all Wicker Man, and something to hold my knees together because now I am hella bow-legged and I’m not fighting to keep them from falling off the table and messing this sausage test up.

And I’m not special. I don’t have some magical superpower that makes me able to do this. It’s been developed over years and it helps that I have a sense of humor about all of it, but I had to start at the beginning just like everyone else. In 2015 I was very “well, um, see, my leg is a little weird and I’m sure it’s nothing and I’m sorry to waste your time.” Now I’m telling MRI techs “No, I don’t need a blanket, I’m hot as hell and about to be reborn through a magnetic vagina, so you just deal with my fat thighs, okay? Thank your God I’m wearing shorts so you don’t have to see my granny panties. LET’S DO THIS.”

If you’re reading this, I love you. Some more than others, sure, but I care for all of you 😘 I want you to be healthy. I want you to be empowered. I want you to get the care you deserve. So this one time, listen to Aunt B because she knows what she’s talking about.

[cic-a-trize]

I wanna post this picture, and I want to talk about trauma and chronic illness for a moment. If neither of these things interest you, that was your heads up. This is me first thing this morning (I woke up like dis). My hair is cray but I’m feeling it—secretly always wanted big ol’ Southern lady hair. It’s so different now- curly and thinner and obvs way shorter, and it has a different texture and I had to learn all about new shampoos. This is what methotrexate does.

I finally managed a smile that I didn’t hate as much as the others. I still smile and laugh freely but I usually cover my mouth now, because the Bell’s palsy has made my left side of my face droop and I hate it. My new glasses are cuuuuuute and I’m hoping the draw attention up to my eyes and away from my mouth. I feel like God tried to icing the left side of my face before it had time to cool properly.

I cropped it out, but there on my chest and neck as always are my port incision scars. I hate them too. They’re basically a constant reminder that I had surgery for nothing and that one time I almost died from anaphylaxis.

My cheeks are red and SUPES hot to the touch. I have the most delightfully taut and smooth skin because I am always using cucumber and aloe products to cool them down. It’s not great for my sinuses, but I have a fan on my face every night or I couldn’t sleep. But I also wear socks because my feet are always cold, because of the neuropathy.

Sometimes I lie in bed, or look in the mirror, and I hate my body because it feels like she’s my enemy. I am constantly fighting her to stop hurting, stop spasming, stop falling apart and for God’s sake can I please just hold my foot long enough to put this damn slipper on?

Right now I feel very disconnected from my body, me vs. her sort of thing. I’m not always nice to her (last night I may have called her a useless skinbag of shit and bones 🤷🏻‍♀️), but she’s not always nice to me either (excruciating leg spasms every few minutes for eight hours?! What fun. 🤬)

I want to learn to love her again but last time I went through that process I was healthy and it took 3 years of therapy. So I’m not really sure what it’s going to take now that I’m disabled and chronically ill.

But! Lest you think my life is full of woe and despair, I will tell you that I have learned a lot over the last two years of defining my new normal.

I’ve learned it is possible to be so grateful for something and also hate it sososo much (sorry, wheelchair.) I have learned that it’s okay to say no and mean no. It’s okay to just stay in bed all day if that’s what my body needs. No one is owed my attention or presence. I’ve learned who my real friends are. I’ve learned that modern medicine doesn’t have all the answers but God does and I have to trust that. I’ve learned how precious time is and that it’s okay to say “this isn’t worthy of my time” and walk away. It’s okay to be sad about what I’ve lost to this disease, and it’s okay to be angry, just not all the time. I don’t need someone to validate my experiences or tell me that “it could be worse” because this is my life and it doesn’t matter how good or bad anyone else has it.

This is my new normal now: wheelchair, a box of meds, trying new drugs all the time and trying not to be too hopeful, navigating a world that was not built with me in mind, and a very strong appreciation for time. And cute glasses.

“That’s the problem: you think you have time.” The Buddha

[cic-a-trize]

This may be my favorite Rumi quote. I haven't felt whole in a long time. I cracked when my dad was diagnosed with ALS. I cracked when they told me I had cancer, and then again when they told me I didn't. I lost pieces of myself at every MRI, lumbar puncture, CT scan.

I lost a huge part of myself when I sat in this chair for the first time.

I shattered completely when my dad died.

I was crushed when the Rutiximab failed.

I absolutely fell apart when I was fired.

Most of these, with the exception of the loss of my dad and the chair, I have healed from. This Bridget is stronger and more resilient and used some really strong epoxy to piece herself back together.

But there are still open wounds, and some of them I'll carry with me forever. Some of them I'm just discovering; when everything hurts it's hard to pinpoint each wound. But I love the idea that for each place where I am not healed, for each open wound that still hurts, Light finds its way in.

I will heal, but I will always have open wounds from loss and heartbreak. And that's okay, because the Light will always be able to find its way in, and I will always shine.

[cic-a-trize]

So hey. Hi. Most of you probably noticed that I don’t post many selfies these days and when you try to take my picture I haaaaaaate it.

That would be because I am so uncomfortable with what the Bell’s palsy has done to my face. This first picture is pretty Indicative of what I would look like when I smiled. And it’s not that I’m vain, I just don’t look like Me. My eyes have always closed because my smile was so huge I couldn’t keep them open, not because I physically could not keep them open. I’ve always actually loved my smile even when I struggled with the way I look.

But. The second picture kinda looks like me. There’s no huge smile, but there’s a straight smile. Both my eyes are open. And even my face isn’t as steroid-swollen. There is, dare I say, very little wonkiness.

In the six months between these pictures, my drugs didn’t change. I didn’t start or stop any treatment (I tried, but y’all know that story.) Nothing changed except my faith got stronger. I got stronger. The bottom picture is after a month of not going to work every day, killing myself to drag myself to an office and sit in a cube and do a job that tbh I hated. That’s why I’m praying so hard for this disability to go through: I want to continue to keep getting myself back. So if y’all could keep praying that’d be great.

There have been a lot of setbacks on this journey, but I think that because I was trying to forge my own path. Now I’m trying so much harder to be open and receptive and take the path God has set out for me. It’s not always easy, but I know it will get me where I need to be. ❤️

(And yes, I’m wearing an LED headlamp for crafting purposes. Also yes, it’s the same one I used to give my Dad pedicures on his crazy eagle feet. I think he’d approve.)

[cic-a-trize]

Having issues with my nerves causes a lot of problems in my life, but sometimes it’s also just really strange.

I just woke up from a “please go away, headache, I despise you” nap, and it feels like my legs are like the first picture. I swear I can FEEL the damn thing stretched out. I started moving my foot, look down at the end of the bed, and i can’t see it. I’m not freaked out because sometimes that happens, but then I see something moving to my left, near Bastian.

It’s my foot. Because my legs are actually in the position of the second picture (don’t make fun of my art). My legs are crossed, but I feels like a ghost leg is stretched out.

Do you have any idea how strange that is? Essentially, I have moments where I have no idea where my limbs are.

The human body is so fascinating but also so messed up. And if I haven’t mentioned it lately, neurosarcoidosis sucks.

[cic-a-trize]

“I cry because shame propels so many of us I cry because so many people forget how important it is to cry or are made to feel weak when they do I cry because I want to close my eyes I cry because I can't”

[cic-a-trize]

For as long as I can remember, I’ve been described as relentlessly optimistic. I was sunshine and puppies and rainbows and unicorns and confetti. I could find the silver lining in any situation. I was the person who never let herself lose sight of how good things were even when they were awful.

And that’s all fine, I guess. It wasn’t a fake effort that I put forth, or a façade. It was just…me. Even when I was misdiagnosed with fatal brain cancer. Even when I was poked and needled and tested almost every day for three months as they slowly figured out it wasn’t cancer. Even as I lost more of my ability to walk and my vision permanently blurred, and everything start to ache. Even when I was finally diagnosed with neurosarcoidosis, an incurable auto-immune disease that formed granulomas (tumors) on my nervous system and started shutting down parts of my body. Even as I lost my ability to walk and had to get a wheelchair.

I was still optimistic. Every day of my life was one step forward, two steps backwards, and I was ordering the sparkling pink wheelchair and cracking jokes to make everyone else feel better. I wouldn’t allow myself to be angry or bitter; I wouldn’t allow myself to grieve for all of the things I had lost: my independence; my freedom to come and go as I pleased; my ability to reach things in the upper cabinets of my house where the good snacks are.

And then March 1, 2017, my dad died and my heart was shattered. Not broken—it was filled with so much indescribable pain that it exploded, leaving little piece of shrapnel in every part of my body. Some of the pieces were just dust that could never be replaced. He had been fighting ALS for five years and then it was time for him to go home, no matter what I wanted.

And then—then I was forced to grieve because it was the only thing I could feel. I was angry and devastated; everything hurt. Nothing could have prepared me for that kind of pain. It was all-encompassing.

Outwardly, I was a daughter grieving the loss of her father; a girl grieving one of her best friends. But inside, I noticed that I was slowly getting darker.

That November I found out that the treatment I had been on for a year had made no difference in my tumors. (Although it was helping with my symptoms. Silver lining.) We were going to try a new treatment, but it would take months to get it started and until then there was just waiting. One forward, two back. Outwardly I was still shining, but inside the light dimmed a little bit more.

And then a new year, and with it the news that I was approved for a free drug trial. Hope. Brighter light. Sunshine inside and out.

Then a five-day hospitalization for a six-inch blood clot in my arm. Two steps back. I had to delay the start of my infusions because of the antibiotics from the hospital. Okay. No problem. Still going to happen, just have to wait a bit more. This was February.

Through March and most of April, there was so much trying. Second attempt, blew a vein and couldn’t get a good stick. We’ll try again next time.

Next time. Blew a vein and infiltrated another one. My veins aren’t going to work; I need a port.

I get a port.

Next time. In addition to the incision where my port was placed, they made a very small second incision in my jugular and no one knows why, but it seems slight infected. One week of antibiotics and two weeks more and we’ll try again.

Trying again! Still looks suspicious. More antibiotics, more waiting. Forever waiting. It’s getting noticeably darker inside.

Fourth try? Fifth? I’ve lost count. But everything is healed and healthy and after six months of waiting, there is a needle in my port pumping a drug into me and it will work and it will shrink the tumors and that pesky active one on my optic nerve will shrink and I will see clearly. I will walk and dance and drive and get my smile back. My real smile, the one where my eyes disappear because of my chubby cheeks and I glow.

One hour and nineteen minutes later and it’s hard to breathe. My throat feels like knives and my entire upper body is turning bright red and I’m having an allergic reaction to the drug. We stop the infusion immediately and start to flush out my system and I get more steroids and allergy meds and after what seems like forever I can breathe again.

But I can’t take the drug. Six months of waiting and hoping and praying and I’m betrayed by my body once again. There is no plan B. Doctors will discuss what, if anything, we do next, but for now I go home, weak and broken and hopeless.

And I thought and processed and searched but there was no sun. Night had fallen and things were dark, inside and out. There was no sunshine, no unicorns or confetti or puppies, and for the first time I realized that they’d been gone for a while. I’d been showing everyone stock photos, but inside it was darkness and that sunshine wasn’t coming back.

And then I found a quote about how stars are born and I thought, Well. Maybe that’s it. Maybe that’s been it for a while. Maybe I’m not sunshine and puppies and unicorns; I’m a starry sky. A light in the darkness. That’s why The Starry Sky has always been my favorite painting and I’ve been so drawn to it for as long as I can remember. The beautifully swirling night sky as seen by a brilliant madman.

I shared this new theory of self with my amazing sister-in-law, and as usual she shared more insight.

“Stars dim and glow and explode and start over,” she said.  “Unicorns are relentlessly optimistic and honestly who is? Stars explode out in the universe a gazillion times larger than my brain can comprehend for no reason.”

Who is relentlessly optimistic? I thought. What an impossible quality to maintain. Why was I forcing myself to ignore how deeply disappointed I was? Why couldn’t I be sad and disappointed and heartbroken and still believe that things were still good overall? Even dying and dead stars give off light, I said.

“Right. But there are also plenty of others around to shine too,” she replied.  “It’s optimistic but a lot more honest. And stars are real. We can see them even if we don’t know exactly what’s going on. So you just need to let yourself and your honesty be seen. Be hopeful, but be honest, especially with yourself.

Be dim. Be bright. Explode. Start over. Just feel where you are and others will fill in the light when you don’t have as much, just like you do on the flip side.“

 And here we are. No more sunshine. No unicorns, no pretending, no fantasy of being able to maintain never-faltering optimism. I’m allowing myself to collapse. I’m allowing myself to be dim when I need to be, because the truth is that right now, I’m a dimmer light than usual because I’m hurting. But I’m also being reborn, and the light will return, and my little corner of space will be brighter again.

I still want to be a light in the world; I want to leave things better than I found them. I want to be a light for other people to look at and say, “there are times when she fades but she always shines again.” The sun is alone in the sky—I want to be part of something bigger. Something more. I want to be surrounded by those just like me, as we shine and dim and twinkle together. I want to join the others in the beautiful swirling sky and inspire something brilliant and evocative.

I’m done with sunshine and puppies and unicorns and trying so desperately to be a never-ending perfect day.  It’s time to be honest. It’s time to give myself permission to collapse, knowing I’ll be reborn over and over.

[cic-a-trize]

[cic-a-trize]

[cic-a-trize]