Two years ago I was living at home with my family, taking a few classes at a local community college, and saving up to return to university. It was the start of November, and I was watching a Golden Girls marathon with Jo, my sister-in-law. Sitting in an office chair, my feet resting on the bed, for hours. The phone rang downstairs and when I bent my legs to get out of my chair I felt a sharp pain in my knees, like I had been doing a few dozen squats. I took a multivitamin, ate a banana, and forgot about it.
The next day I couldn’t get out of bed. I had bought a bed with the mattress sunken into the frame, low to the ground. I let myself imagine that the joint pain I was feeling was caused by walking up and down stairs every day. I pulled a chair next to the bed, put my hand on the seat, locked my elbow, and heaved myself up. As things got worse, I would hold onto the towel rack in the shower, but was still falling pretty regularly. I stopped being able to pick up my nephew, terrified I would drop him. He was 2 at the time and did not understand.
When I went back to school in the Spring, I was taking 18 hours, two of which were Kinesiology classes. Every morning, I would lower myself onto the floor and scoot my way to the top of the stairs. Grab banister, pull, heave. I’d take a Naproxen Sodium, limp to the bus station, go to my first class, and then walk as fast as I could to be slightly late to my walking class. This went on for a few weeks and I made an appointment with a campus doctor. She ran some blood work, then referred me to a rheumatologist. She told me that my blood work indicated an autoimmune disease. Like the one my grandmother had. The one my mother, aunts, and cousins have: Systemic Lupus Erythematosus. The great pretender.
So I had these symptoms and this blood work. Which was enough for the campus doctor for tell me I had probably inherited the disease BUT! not enough to have the Disability Office on campus modify my curriculum. Diagnosing an autoimmune disease can take months of blood tests and visits to a specialist and I had neither money nor insurance. This is why I almost didn’t graduate because of an exercise class.
Each class was a very public, very embarrassing struggle. I learned to ignore and resent my legs – they were giving me dull, repetitive information. I focused intently on my breathing. I visualized my pain as energy. I listened to “My Body is a Cage” by The Arcade Fire. My walking got faster but HAHA the completion time kept shrinking. The pain was not the worst part. The worst part was having to be so aware of my body, every hour of the day. The worst part was being a young man with a pronounced limp. I would wait until classrooms had cleared before getting out of my chair. Every day was a lesson in humility, a lesson in fighting my own self-pity. There were days when I needed to talk to someone about how this condition was robbing me of my self-concept, unraveling my idea of myself as strong and self-sufficient. But I imagined that as long as I didn’t talk about it, my life could continue on exactly the same as before.
Over time, things got better. The weather warmed, my muscles developed, and I pushed myself. There were days when I’d put my ear buds in, steel myself, breathe, and focus only on my stride. Beatdown, can I tell you that there were days when I felt proud of myself? Days when coming in last made me feel like a champion?
In the two years since I have learned things about my own body. I have learned that once my knees start wobbling, GAME OVER. There is no powering through. There is no mystical internal light of determination that I can draw on – if I keep going my body will fail me. This has been a humiliating lesson to learn. But I can still walk. I can still exercise within limits and these limits expand the more I push them. I have also learned how much privilege I carry. I don’t have chronic insomnia like other members of my family. I’ve never lost a job because of being hospitalized, like my friends with Fibromyalgia. If I’m spending time with someone, and I don’t want to have to go into the whole story I can take an anti-inflammatory and ignore the pain, or blame it on fatigue.
But from the neck up, little has changed. I don’t like talking about my condition, which remains undiagnosed. Every time I do, I feel like I’m doing it for attention or sympathy. I talk about myself in ways I would never tolerate from anyone else. But when I ignore my own internalized ableism, it makes it harder to see the ableism in others and in myself. I still feel conflicted about identifying as disabled, given the amount of privilege I carry at this stage. Watching my mother struggle with doctors who will shower her with pills but who won’t have a conversation with her, watching a friend of mine fight with her insurance company over treatment and having them act like she’s just a big waste of time, space, and money – these people are fighting battles that are still YEARS away for me (I hope, GAWD, I hope). In the mean time I will try to stay as healthy as I can, and do what I can to support them.
Thank you for listening.