Being A Creative With Chronic Illness

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It’s a Friday night in Jersey City, and I should be at a larp.

Instead, I’m in a hospital bed in the local emergency room with an IV in my arm. My roommate Craig is sitting with his iPad nearby. We’re joking over the latest antics from the White House and the recent defeat of the SkinnyRepeal. “I get to live another year,” I joke. But it’s no joke for me. I massage my arm and try to ignore it’s stinging. The nurse came in and tried to get blood a little while ago, but my veins are so shallow from dehydration they couldn’t find a good one to tap. It took six tries before they could get the blood they needed. I’ll have bruises in the morning.

“I’m just glad I finished all my work before today,” I say. The nurse comes in to wheel me to get an ultrasound of my stomach, but I’m pretty sure I know what they’ll find. Nothing. Because what’s happening is all part of the glorious roulette wheel of fibromyalgia symptoms plus a great big dose of dehydration.

I hadn’t eaten in twenty four hours, was unable to even keep down water. By the time we made it to the hospital, I was seeing spots and couldn’t stand well to transfer from my wheelchair. And the muscles spasming up and down my back, neck, and shoulders had locked up into a single, solid knot.

And all I could think about was: I could be at a larp right now. Or I should be writing.

Welcome to the life of a chronic illness creative.


I was diagnosed with fibromyalgia when I was twenty six, but I’d been experiencing symptoms for years. I’d have muscle pain, lock ups, generalized fatigue we couldn’t figure out, and brain fog that would knock out my concentration. I’d sleep for way longer than I should and had pain up and down my back, shoulders, arms, and legs. Doctors checked me for just about everything. I’d been hit by a car in 2005 so most doctors figured it was just after-effects of the accident. It wasn’t until I saw a particularly canny pain management doctor that I got the right diagnosis.

People with fibromyalgia often have trigger points of pain where the fascia and the muscles meet (or at least that’s what I was told). My pain management doctor walked over, poked four of those spots, and watched me nearly leap out of my skin.

“Ding ding,” he said, “we have a winner.”

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Kicking ass at Dystopia Rising: New Jersey

Within days, I was in treatment. I was getting medical massage, got acupuncture, was trying out the latest fibromyalgia medication, and getting pain medication to become functional again. And I did. For a little while. I went back to school, went back to work. I graduated, kept working eight hours on my feet at Apple, kept LARPing. I would run through the woods on my weekends, ignoring the muscles that hurt so bad I could barely see sometimes. Sure, I’d fall over sometimes and throw up from the pain. Sure, I’d get muscle-tension so bad it triggered headaches so violent I would be in bed for two days. I had doctor notes for work. I exercised. I took care of myself.

 

But fibromyalgia can only be treated, not cured. And as time went on, it got worse.


Let me tell you what it’s like to try and write while having fibromyalgia.

Imagine you got in a fight. A knock-down, drag out fight with someone. Doesn’t matter who won in the end, but you came out the other side. You’re not badly hurt, but every muscle is hurting from the strain. You feel bruised in places so bad it burns. And the rush of adrenaline is wearing off, so the awful exhaustion is kicking in, so thick you want to sleep for a month. And inside your head is that foggy feeling that says you need a very long, very restful nap, just to make all the pain go away.

That’s fibromyalgia on a medium day.

On a bad day, you lost the fight, and there are places on your body that are screaming.

(If you’ve never been in a fight, substitute running up and down a really steep hill with heavy bags of groceries and a giant backpack like ten times in the heat. I think it about equates.)

Imagine then asking your body to sit in one place, at a computer, and be creative.

Or worse (for me), run a larp. For those who aren’t familiar, running a larp is half being a ringmaster and performer, half logistics manager for an improv immersive theater performance, half writer-on-the-go, and half team manager. Now try doing it while your muscles are screaming at you to just sit down, shut up, go to sleep, just stop, just stop, just STOP.

Sometimes, you just have to stop. Sometimes, you can push on. But one thing is for sure. Over time, it gets harder and harder to push. And you’re always so damn tired.


My health got worse, over time. I developed Cushing’s Disease, a disease of the endocrine system that spawns hormone-producing tumors in your pituitary and adrenal glands. I had a pituitary adenoma (that’s a tumor) we had to remove as soon as it was found. We named it Larry, and Larry was a sonofabitch. Larry screwed up my endocrine system so badly that three and a half years later, I’m still recovering. My body in fact may never recover fully, and I’ll need to take hormone replacements for the rest of my life.

Cushing’s Disease also makes you gain weight. Point of fact, it’s one of the ways they find out you HAVE the damn thing. Now I’d never been a small girl, but gaining 180 lbs in nine months is unreal. Falling asleep nearly face down at my desk, struggling with blinding migraines, all of it led them to Larry. I had a brain surgery that laid me out for over six months. I was tired all the time. I could barely get out of bed.

I continued as a freelance writer. I graduated NYU. I wrote a book. I looked for work. I ran LARPs. Because life wasn’t waiting for me to get better, and I needed to work. Because I’m a writer and a larp designer and my mind won’t slow down because my body does.

I got a wheelchair to get around. I said goodbye to larping in the woods for a while.

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It takes time to adapt to failing health. Your mind wants to tell you that you’ll recover soon, that you’ll go back to the way things were before. You’ll remember the glory days, the days when you could run, when you could fight, when you could walk across Manhattan with friends all night, talking about absolutely nothing, for hours on end. You remember hiking up a mountain, or backpacking through a country. You remember waking up in the morning without pain.

Your mind is a great denial machine, to help you stay mentally healthy. It shields you from the enormity of what you’ve lost. But one day, while you’re planning this grand trip you just know you can do because hell yes you can, you twist some way when you’re sitting down, and your back explodes in pain. And then you remember your limits. And you remember those days of doing things easily, of racing through the woods in a larp or even getting up a damn flight of stairs with ease, and know they might be over forever.

Well, the ease part is over. Whether or not you go and do it anyway, though, that’s up to you.


I got rolled into the MRI room. The technician had to do a lot of imaging, so we got to chatting. She asked me a lot of questions about my medical situation. I had to give her the full run-down, which is a long list of medications, medical issues, and treatments. When I was done, she stared at me.

“You’ve got all that memorized, huh?”

I shrugged. “I’ve got practice.”  When you’ve got chronic health issues, you’ve got to learn what’s up with you, so you can talk to doctors as an educated patient. I came prepared for speaking to my doctor with all my medications memorized or in my bag, the full run-down of what’s been going on, and the doctors to contact if more information was needed. Par for the course.

We chatted for a while longer. She asked what I did. When I told her I was a game designer, she gave me the same response plenty of people do. “Man, my __________ (insert relative here) would love you! It must be a great job!”

And I always say the same thing, “It’s a hard one, but I love it.” Because I do. Every day, I get up and I know I’m working in the creative field I love. I get to write words and people read them and enjoy them. I help bring books to development that will give people joy. I run larps and see people get excited, and get immersed, and come out loving what they’ve experienced, the stories they lived through if only for a little while.

I think about my deadlines as I’m lying in the MRI room. I’m thinking about the larp I’m writing, the books I’m developing, the projects I have planned. I think about my novel and the few chapters left to the end, dragging on and on because I’ve just been so stressed and exhausted.

I am exhausted. I’m always exhausted. And I’m always, always mad. I’m furious at my body for giving out on me in the prime of my life, of how it fights me for the littlest things these days like going up a flight of stairs or reaching for something in a store aisle. How I wake up in pain that robs me of a good night’s sleep. How I have to take medication just to get through the day, especially painkillers so often demonized by others for their addictive properties.

I’ve been on those painkillers for six years under a doctor’s care, and never deviated from treatment, never taken more than I was supposed to. But I’ve still had people in my creative field try to slander my name by calling me a junkie. I think about life without pain management, about the screaming muscle pain and the blinding migraines and the fatigue from just fighting the pain. A junkie, huh?

And people wonder why I’m always so pissed off. I do a lot of meditation, a lot of spiritual exploration. People tell me I should do yoga, as if yoga will cure things. People suggest a lot of things. “Have you just tried not thinking about it?” is my favorite. Or, “I heard if you just go vegetarian/paleo/Atkins/low carb/stand on your head, you’ll feel better.” Or the old favorite, “You’re always sick all the time.”

Yes. Yes, I am.

I practice a lot of that anger management meditation to deal with dumb-ass questions, concern trolling, unsolicited medical advice, inaccessible venues for my wheelchair, and unapologetic discrimination against disabilities. I need a lot of patience. There’s a lot of bullshit people deal with when they’ve got chronic disabilities, especially some that are invisible. You need a lot of patience explaining your needs to people around you in everyday life. At airports, conventions, at the corner store. Some people make it easier. Others make your head just plain hurt.

I practice a lot of deep breathing and remember that old saying: oh lord forgive them, they know not what they do. And even if they do, anger is only some bricks in my already overflowing backpack. I do my best most days. Most days.


But I can’t do that best alone. The days of being able to just bear up and do things by myself have sadly vanished. And because of that, I have to rely a lot on the kindness and support of others around me. It’s not a natural state for me, to ask for help. Anyone who knew me in my twenties would know I was always taking on too much without delegating, without even letting others know when I was in trouble. It’s an ongoing challenge. Once I got sick, however, that went out the door. Some days, getting food can be a challenge, or wheeling down to the corner coffee shop, or out for pizza.

I have good people in my life. Amazing people. Brilliant people. We travel together to conventions, to concerts, to days out. And some days, that includes pushing my wheelchair, snagging me food, making sure I sleep, I eat, I drink. I push too hard and fall over, and they’re there to make sure I don’t fall. Without them, I wouldn’t be able to survive, let alone be creative.

I remember every day they give me strength. I remember to thank them as often as I can. I am afraid I’ll wear out my welcome with them. I’m afraid they’ll get tired of the sick friend, who makes it hard to get places, who has a wheelchair. I get concerned I’m asking too much when I ask for help. I am afraid I’ll lose them.

I have lost friends. Friends who didn’t get it. Friends who called asking for help ‘being selfish.’ Friends who just drifted away because I couldn’t come out as often, couldn’t be there. It was painful. It hurt. But people drift out of our lives. And I learned to be more thankful, to let people know how much I appreciate things more, both in my everyday life and at work. People throw around the word blessed on Instagram and Twitter in hashtags, but that’s what I know I am. I’m blessed. And it fuels me to keep moving every damn day.


The MRI tech finished up what she was doing and got me ready for transport.

“You know,” she said, “you’re doing better than a lot of people with half of your issues. A lot of folks would have just given up by now.”

I blinked at her. “And done what?” I asked. “What’s my alternative?”

She started laughing. “See, that’s why you’re making it.”

As the attendant pushed my gurney out, I shrugged and said, “Nah, I’m just stubborn. They’re going to have to wheel me out of this life feet first.”


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My first Star Wars larp in college.

When I was sixteen, I was diagnosed with bi-polar disorder. A very brusque, uncommunicative doctor in Brooklyn sat me down and explained why I was so depressed and then utterly manic, why I was having trouble with suicidal ideations. He said the only way to get things under control was medication. He didn’t explain much about my illness, only that I was going to have it my whole life. That was eighteen years ago, and I spent most of my twenties struggling to come to grips with my mental health. I can only be glad I got it (fairly) under control before my health kicked out.

 

I get up every morning, and I take my medication. I feel no shame in talking about taking medication for anything that’s going on with me, be it chronic health or mental illness. These are everyday parts of my life, my reality. And I find no shame in seeking treatment for what is wrong, for what needs correcting so I can live a healthy, safe life. I take my mental health as seriously as my fibromyalgia or my Cushing’s Disease, maybe more. Depression, to be blunt, can kill you as fast as a mismanaged endocrine system. Maybe even faster.

The MRI tech reminded me of something I’d promised myself when I started the latest course of anti-depressants and mood stabilizers. I was just starting grad school and I’d been on and off medication for too long. I took my first dose of a new medication and within hours I was feeling better. I called a friend and asked him if this is what normal felt like, when the windstorm of mania in my head had calmed down and I could think straight for perhaps the first time in a long while. And I promised myself that day I’d take all that energy I used to use to hold onto being stable, a fight I sometimes only won by my fingernails, and I’d turn that to working and gaining my goals. To succeeding at my dreams, and never, ever give up.

They’ll have to wheel me out of this life feet first.

I keep that motto in mind every day.


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Me at the Women’s March on Washington D.C. in 2017

And some days, it just doesn’t work.

 

I woke up today and I’m fairly sure I’ll be asleep for a good chunk of the morning. I’m back from the hospital, and I was right. The doctors found a nasty case of severe dehydration (my medication makes me dehydrate pretty fast), some gastric issues, and a whole lot of fibro symptoms that masquerade as something more serious. (Ever get rolling chest, arm, and neck pains that squeeze the breath out of you? If those symptoms sound like a heart attack, ding ding ding. Now play the home game, “Am I dying or is it fibro?”) I lie down, thanking everything that looks out for itinerant writers that the ACA provides me with the insurance I need. I drink a ton of water. My body is still sore from the muscle spasms. I’m loopy from medication.

I have to work today.

I don’t have to. But my brain is itching to write. I wake up at 8AM and put hands to keyboard and write this post, not because I want to bitch about my health (although a little exposition to get out the feelings never hurt) but because I need to write. I need to. It’s a part of me as much as anything else, and so much more true to me than the pain from the chronic ailments. Because writing was here before I was sick and will go on through it all.

I don’t have to write today, then. But I will. Hell or high water, I will.


I’ve met a lot of people in the gaming and writing world dealing with any number of medical issues, any combination of chronic illnesses. I’ve seen people I know get knocked down by serious illnesses and terrifying diagnoses, or else stand with family and friends when they’ve had the same. Being sick or being a caregiver saps the hell out of your energy. It rips away from you the daily stockpile of spoons you have to spend (and if you’re not familiar with Spoon Theory, check it out here to understand more) and instead leaves you at a deficit that can wreck agendas, plans, even careers.

For everyone out there facing this, I see you. I see you struggling to get up in the morning to finish that game book on time, or to attend a convention no matter how much energy it will take. I see you fellow wheelchair buddies fight to get into accessible venues, or those with chronic issues seeking accommodations at events so you can participate. From creating quiet rooms for those with overstimulation to people advocating for longer breaks between events at conventions for proper self-care, and to every game dev and editor who recognize chronic health issues and are understanding, I thank you.

I see you and what you do. I thank you for making sure the games world makes room for creatives who are chugging along, trying to make it work. Who aren’t willing to give up the muse, even when sometimes the body is trying to give up the ghost.

Today, I’ll take it gentle on myself. I’ll try to give myself a wee break. I’ll curse a little at my muscles, still ripping me up with tension. I’ll pull out my edits and get back to work.

And I’ll take this day head on, until they take me out feet first. Because I know no other way.

2 Comments

  1. Wow! You are quite an inspiration! I’m reading through your blog pages, and finding so many wonderful things that you have accomplished, and far too many parallels to my own life.

    A friend had shared your post regarding post apocalyptic stories, and the fate of the disabled. That brought me to tears, as I have often found myself wondering if I would find myself being expected to “get out of the way for others”, or some friend might find themself unexpectedly coming to my aid.

    Then I found myself bawling, over your story about losing your mom. I lost my Mommy-Lou in June, suddenly and unexpectedly, still getting over losing my Grandma a little over a year prior. I have live a few states away for years now, about a 4 hour drive. I still drive locally, but that trip has been beyond my abilities for quite some time, so I had not been able to spend nearly enough time with my family.

    I was diagnosed with Multiple Sclerosis in 2005, while in the middle-years of being a “stay-at-home-mom”. Giving up any professional, independent identity for that role was one that I consider to have been a great privilege, but one that also left me with little to fall back on, when divorce came along. By the time I found what I’d hoped might be my new niche, disability knocked on my door, and the slow decent into my lonely little life, lol. Right now I am working on creating my own home bakery, using my newly identified passion, and watching my children wander off into their own lives. =)

    I love that you have maintained such a beautiful creative life, in spite of all of your challenges! I completely identify with the stresses of never knowing what a symptom might be from, for me its “…or is it MS”. I’ve even been in hospital a couple of times from worry that I might be having that heart attack, only to get a nonspecific diagnosis of “MS hug” (and yes, some asshat decided that the terrifying squeeze of the muscles in your chest, that cause panic about the heart, should be called a “hug”!)

    So sorry! I’ve just noticed that I could be writing my own blog entry here, lol. Never meant to ramble on so. Especially since my fingers are slower than molasses, and just about as accurate. I just wanted to tell you, how wonderful it is for your friends to stand by you, and what a wonderful writer you, and that you inspired me! ❤

    1. Thank you so much for the kind words! It’s been a real challenge to be open and honest in my blog posts, so reading that it reached you honestly really helps. Good luck with your bakery, that’s an awesome home profession and also just fantastic in general (who doesn’t like baked goods?!) And of course, I wish you strength and good health in dealing with your illness.

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