I’m sick. And I’ve been sick for a long time. And I’m really over being sick. Like, really ready to be done. But I don’t think it’s actually going to go away, so I’m learning to live with my body, even when it does not feel like my body.
For as long as I can remember, the label ‘high functioning’ has followed me around. To be high functioning means in the most basic way that you can do a lot of stuff. It means you can go into the world and for the most part, make do. In the context of disability, there are clinical measurements to determine if a person is ‘high functioning’ or ‘low functioning.’ I don’t like these terms because the point of relativity is an abled, neurotypical standard, despite the fact that the folks being scrutinized are not abled and/or neurotypical. And sometimes the point of relativity is other disabled people: a ‘low functioning’ prognosis means nothing without the existence of its ‘high functioning’ counterpart. Because I had a minor brain bleed as Cerebral Palsy goes, access to early childhood therapies, and parents that pushed me, ya girl hit a lot of marks that abled people looked at and call ‘success’: I eventually walked and talked and fed myself. I dressed myself and went to mainstream school and by many standards, live independently, blah blah blah. If I seem cavalier about it, it’s because these markers of so called capability are arbitrary. There are lots of people with lots of different disabilities who don’t do the things I listed, or do them with assistance, and live full, happy lives.
On the flip side you can be a Supercrip, fitting into all the molds abled society asks of you, and actually be quite unhealthy. That feels like my story right now. I orbited in abled spaces for most of my life- I exceeded medical expectations over and over again; I was always looking on the bright side, and truthfully pictured myself as abled until I was 18 years old. As ridiculous as that sentence is now, its true. I was determined to ‘not let my disability stop me’ because along the way, I’d internalized ‘high functioning’ and its implications. I was warned the effects of Cerebral Palsy would shift or worsen in my early 20’s. Not because Palsy itself is a progressive condition, but because the physical impact of aging and pushing your body to do the most takes it’s toll when ones body “settles” after adolescence. I didn’t believe the warnings because in my young mind deterioration happened to other people, not me. And when you’re 14, 22 feels like a world away. But it’s not. It’s here. I’m 22. And like clockwork, my Palsy changed drastically around the time I turned 20. My muscles felt tighter, and a wheelchair went from a convenience to an actual need. Strobe and sudden light began to bother me in a way that is difficult to describe- I don’t seize or fall, but I get this instant headache and begin to tremble. Experiencing chronic fatigue could be its own post entirely. Physical and emotional exhaustion will overtake me, and I’ll feel something near a drunken stupor until I can take a nap. My tired is not your tired. These symptoms were not at all present in, say, high school. As a teenager, I felt as far away from my autistic peers’ experiences of overstimulation as a neurotypical person. But as time progressed, my symptoms intensified, and new ones found their way into my days. Not only do I understand overstimulation now, but my social life revolves around it: bars are usually a no go, as are many concerts. Crowds and strobe lights can quickly go from uncomfortable to dangerous. At first, I would just tremble when nervous, shoulders shaking invisibly, maybe a knee tremor, the occasional teeth chattering. Now, my entire body will shake for anywhere from a few seconds to hours on end. And I shake when I’m not nervous about anything. It can happen anytime, for no reason at all. It’s completely exhausting and out of my control.
Tangential to the shaking is the vomiting. Oy, the vomiting. The stomach is a muscle, so when the stomach spasms, I immediately vomit. It started a year and a half ago. I shake, and then I vomit, or my stomach clenches out of nowhere and I just vomit. Sometimes, I go weeks without vomiting and think it’s “done” just for it to return with a vengeance. At first, I was sure I was eating the wrong things, so I experimented with my diet with no luck. Then I was sure it was anxiety, so I went to therapy and chipped away at every trigger I could think of. I found distance from those who stressed me out, used my chair more to decrease physical strain, ate as clean as I could on a college campus and again saw no change. Sometimes, I vomit with an empty stomach, waking up heaving and heaving until my body can no longer hold itself up. I’ve become an expert at vomiting discreetly in restaurant bathrooms, a sharp contrast from literally puking overboard a ferry when it first started. Often, food itself is a trigger, causing me to near-starve myself in an effort to avoid it. I didn’t experience actual hunger for over a year, and was sure I was going to die. Spoiler: I haven’t yet. As a general note, my chronic illness symptoms are not life threatening, though they can be life-lessening. I lost weight, which is hard for me to gain back because of the super fast metabolism from ambulating with Palsy. And I have hypoglycemia, so not eating consistently messes with my blood sugar severely. I think my sugar is fine because I don’t feel hungry, and then I’m hit with familiar hypoglycemic can’t-make-a-decision wooziness. I thought the vomiting was gone for good (again) when I was prescribed Baclofen, a common muscle relaxant for people with Cerebral Palsy. I take it faithfully three times a day, and the first three weeks were bliss: no shaking, no vomiting. I started gaining the weight back. The accompanying drowsiness and forced sobriety felt like a small price to pay. Then on week four, it all returned without warning, vomiting everything I ate and losing my appetite once again. Now, I’m waiting for my doctor to approve a higher dose, and I’m praying it helps for real. I’m still trying a myriad of other things to address the spasms and vomiting and fatigue. I am seeing doctors and therapists and reading about food and medication. I am meditating and visualizing and resting. Suddenly, Palsy seems like more than a ‘leg thing,’ doesn’t it?
I’m learning how to live my best life while chronically ill. This adjustment is sometimes self explanatory in so much as my comfort guides my needs, but is often upsetting because I lived in another body for 20 years. I drank alcohol, danced freely, stayed up too late, and ate what I wanted when I wanted. Sometimes, my life doesn’t feel like mine. It is mine, and it can be good- it’s just really different. Having language and community for my experience allowed me to accept this. Chronic Illness is defined as “a condition that lasts for a very long time and usually cannot be cured completely.” That’s me, and also a lot of other people.
Thanks to instagram and Google, I stepped into understanding myself as a chronically ill person much more smoothly than when I learned I was disabled offline. Say what you will about Mark Zuckerberg and the looming threat of government surveillance, but social media and the accessible format of the internet provides endless community and crowdsourced information for anything you could imagine. There are many people who identify as chronically ill, and many of them are like me, young and navigating unpredictable health while pursuing careers and love interests and dreams unrelated to whatever symptoms they are experiencing. There’s an ‘us’ having good days and bad days, pendulum swinging wide and fast. “Chronically ch(ill)” reads countless bios, with profiles teeming with posts about everything from catheters to colostomy bags, feeding tubes to chronic fatigue. More than once have I received a nervous direct message from someone somewhere far away that says something like “I see you have spasms?… has anything helped?” Or “You wear a fancy brace… can you tell me more about that?” Or simply “Hi! I’m stuck in bed and you seem cool…want to be friends?” The platform provides a social space that does not require one to leave one’s home or one’s bed, or do a cost benefit analysis of the threats of the outside world, like overstim or fragrance or general inaccess. This combats the history of isolation Sick and Disabled folks descend from.
Many identify as “Spoonies’ deriving from the spoon theory. Spoonies are not a theoretical population with green, sad faces in the margins. We are every age, every gender, every race; we are partnered and single; we are writers and lawyers and line cooks and actors and insurance representatives and public workers and parents; we span states and countries and languages; some run marathons and some are housebound; some were abled last year and some will never know stable health. And even on the days we think our own bodies may kill us, we continue to live our lives. I’m lucky to know myself; to trade tips and tricks; to share my blog; to say “I’m still here.”
Today, this is where she stands