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Fight rare neuro-immune disorders. Together.
My journey began on December 3, 2010. I had just turned 23 the week before. My first symptoms were a fever and a bad headache the day before, but on the 3rd, I woke up with a backache that began as what felt like cramps, but got worse and worse as day turned into night. I had been diagnosed with lupus five years ago, so I already was very careful to watch my health. I became horribly thirsty but didn’t seem the need to pee, I broke out in a bumpy red rash all over the top half of my face, and my scalp was tingling beneath the skin. The backache began spreading and the pain started shooting down my legs, and everything from about the waist down gradually felt tighter, heavier, and uncomfortable. My skin prickled and felt uncomfortably sensitive. When I realized I couldn’t pee in the early hours of the morning, my girlfriend at the time and I decided, I needed to go to the emergency room because something was definitely wrong. Because of my backache and the fact that I had lupus, we worried that something was wrong with my kidneys.
As I was packing a small bag to bring with me, my legs suddenly gave out without warning mid-step and I fell to the ground. I realized I was too weak to stand back up, and I haven’t stood back up since. I was taken to the hospital and admitted to the ER, where they did numerous tests. By about 4 a.m., my symptoms had progressed into complete paralysis. They did an MRI and found a huge spot of inflammation stretching from about T6-T11, and a smaller one in my neck. They also did lupus blood labs, which showed activity. This was when I was diagnosed with acute transverse myelitis, thought to be brought on by a severe lupus flare, and they began immediately giving me high-dose IV steroids, which made me shake, and I was admitted to the ICU. Two days later I was given my first round of chemo with cytoxan, and moved to the neuroscience floor. About three or four days later, I was medically stable, and moved to the acute rehabilitation center, where I spent a month as an inpatient.
The manifestations of the disease (complete paralysis from about T-10 down) have not changed; my window of hope for any neurological changes came and went in 2011.
My lupus has been in remission since. I went back to school part-time two months after I was in the hospital, and then the following fall, full-time. I graduated with a BFA in General Fine Arts with a focus on illustration and painting in 2012, and did a series of small paintings for my thesis about my experiences becoming disabled and going through rehab.
The most difficult part about living with TM has probably been adjusting to the lifestyle changes, accessibility barriers, and dealing with people’s attitudes about folks in wheelchairs. I often get very frustrated about how the public at large can treat a woman in a chair. I am treated with kid gloves, have my needs and voice ignored, and talked down to on a regular basis.
However, these difficulties have also taught me some things about myself and the people who care about me, which brings me to the things that I am hopeful about. I know my family loves me and will support me and stick with me through everything. When I was in the ER, the doctors thought I might die, and it really shook everybody close to me. I also learned that I’m a lot more resilient and optimistic than I had ever thought I was. Knowing these things about myself, and remembering that I had to come through some incredibly difficult and painful experiences and that I emerged from them a stronger person, gives me the reassurance that I can most likely tackle and figure out whatever else is thrown my way.
December 3, 2016, will mark my six years with TM, and my life is so absolutely different now at nearly 29 than I ever thought it would be. I have hope that everything continues to get easier over time, because it already has; I care less and less when strangers stare, judge and underestimate me. I have tremendous hope that for future generations, stem-cell research will help reverse and perhaps even eradicate diseases like TM as well as lupus. And I have hope that accessibility and disability rights will continue to come into the limelight as very real issues that need to be addressed that can benefit everybody because, although we prefer not to think about it, everybody has the potential to become disabled one day and most of us do in old age. Disability rights are universal human rights and I’m going to continue fighting.
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