Monday, April 13, 2015


Facebook has a function that brings up posts from a year ago - or two, or three, or more years ago - perhaps for the little historian in each of us. For me, that one year ago is a hard thing to look back on. I just filled out a progress report for school detailing my activities over the past year, and it's the tip of the iceberg. I can't tell my funding agency what I've really been up to.

Last year on April 13th, I went on a run - 10 km in an hour and 15 minutes. A few hours later, I posted on Facebook that typing for so long while doing my comprehensive exams was hurting my back (I thought it was fatigue, from so many long days on a terrible desk chair). On April 14th, my right leg stiffened up and started to shake uncontrollably (I thought it was anxiety, as the first of three exam deadlines approached that afternoon). On April 15th, I was in enough pain that it was hard to turn my neck or torso, or lift my arms. On April 16th, I tried to go swimming, but couldn't. On April 17th, I went to the doctor, who referred me to a neurologist. Over the week that followed, I lost feeling in the right side of my body. On April 23rd, I passed my oral exams, doped up on narcotics from the pain, hoping my committee wouldn't offer to shake my hand, since I couldn't move my right one. By early May, I'd regained feeling, but my gait was unsteady, and I was still stiff, tired, and in pain. I went to conferences and spent time in the archives, doing my best to not let people see how I felt. In June, my pain kept marching on, but my legs didn't. On June 19th, they said I probably had MS, and gave me five days of steroids. I cried for the rest of the month whenever I was alone, and tried to convince other people that I could handle this. Through early July, I gained my strength back, running a few steps for a bus, walking without a cane, and thinking that I'd seen the worst of it. At the end of the month, I relapsed again, losing some vision in my right eye and becoming unsteady, once again, on my feet. More steroids. The paranoia from steroids was so bad that I vowed never to do that again. In early August, I went hiking again, dragging myself through a valley with a pair of hiking poles and the sort of stupid perseverance that can only come from a steroid high. Then I did the MS bike tour, raising $2500, winning a coffee maker that I donated to the steroid clinic, and exhausting myself thoroughly. Two days later, I relapsed again - couldn't pee, my pain skyrocketed, and my left hand felt weak. I refused steroids, thinking it would get better over time. I got a brace for my clumsy right leg, and started on medication for neuropathic pain. I started to pee again, a few days later, but couldn't control it properly. I bought incontinence pads, and cried. In September I went for an MRI, relapsed the next day, with my walking getting less and less steady. More steroids. More pain. More medication. More paranoia. My mood plummeted. I attended a friend's party on so much medication that I could hardly stand up straight, and went to meetings that I can't remember, and for which my notes are illegible. I started writing my thesis proposal when I had spurts of energy. I joined a new choir. Then they said it was probably not MS, but NMO, which was even worse. I thought I was going to die; on bad days, sometimes I still do. They prescribed steroids and immunosuppressants. I felt lucky that I could still walk. In October, I relapsed again. My eyes hurt, and everything tingled. They gave me even more steroids than before. Every day my legs became weaker, until I bought a walker just so I could get to the bus. Then I couldn't swing my legs into the bathtub to sit on my shower stool. My muscles spasmed and released, spasmed and released, and I couldn't take the pain. I went to the ER, alone, for one of the lowest nights I have ever had. I have friends who would probably have come, but I didn't feel worth calling them. Doctors sent me home, giving me nothing for pain. My pain control was cats. My physiotherapist suggested I get a wheelchair. I couldn't push myself in a wheelchair, so rented a scooter. For days, I was ashamed to ride in it, because I didn't feel like my weakness and pain were real enough for me to need it. A new pain medication helped with the spasms. I was incontinent, and sometimes it was obvious. My friends have tact, and stayed silent. I slept more than I stayed awake, but at odd hours, and fitfully. I broke down in front of a friend, convinced I'd never survive much past the end of my PhD unless the relapses stopped; she couldn't reassure me that I'd live, and we talked about how a thesis could be a legacy. I gained 10% of my body weight. I broke down, every day, and laughed giddily, over nothing, on the same days. I kept going to tai chi class, unable to lift my feet off the floor. One scooter broke; the next got a flat tire. I presented at a conference, learning how inaccessible my hometown was. I tried to persuade my family that I was fine. I wanted to die, and wanted to live, both so badly, at the same time. The MS clinic physiotherapist said that walking wasn't a realistic goal. All the best disability politics can't help with that sort of life change. I told people I was fine so much that many of them stopped asking. One friend stopped seeing me, and I still don't know quite why. I started weaning off prednisone, bringing joint pain and nausea and fatigue that squashed my mood. Back to the ER, for nausea, but they gave me a psych consultation then did nothing. I returned the scooter, since it was too expensive. Got a new physiotherapist, who said it was worth working on walking, rather than renting a scooter. Physiotherapy was so hard, and so painful, and so discouraging. For Christmas break, my family pushed me about in a wheelchair on holiday, so I'd have a chance to see anything. They went on a walk across a footbridge, and left me behind, because I was so slow. I wanted nothing more than to run along that bridge - and jump off it. A few days later, a friend killed herself, and I promised myself that I wouldn't. So I worked on my thesis proposal, word by word, page by page. I did physiotherapy exercises until everything hurt and I collapsed, day after day. My social worker suggested accessible housing - a kick in the shins, when I was finally becoming more mobile. I went back to the swimming pool, where the old ladies saw my walker and told me about their bad knees. I gave another conference paper. I wet the bed. I lost some of the weight I'd gained, more from nausea than any sort of diet or exercise plan. I made hundreds of paper cranes. I stopped using my walker. My eyes still hurt too much to read. I went on a prednisone-fueled hike, slowly, slowly, and got stuck on a trail after dark. I broke down, day after day. I defended my thesis proposal, sick as a dog, and cried for two weeks afterwards - despite passing. I walked more, each day. I stopped needing the cane for short walks. I started weaning off pain meds, preferring pain over side effects. I psyched myself up for a urology test to get to the bottom of my incontinence. I started taking medications to help my bladder. I started running again. I started to read again, and to work almost normal days. I got back on my bike. My pain is still here. I've mourned my mobility, my hobbies, my friends, my career, my freedom, my independence. I'm still here.

How was your year?

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