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About 10 years ago, I was living in a state of post-college inertia, grudgingly underemployed, newly married, and adjusting to life in a new state. I spent most of my free time looking for friends and a new job, but neither came easily. It felt like my husband and I against the world, with pockets of warmth in the form of phone calls to friends and family.
It was unpleasant, but familiar. Things began to change one Saturday evening, with my left leg feeling kind of heavy and cumbersome. I stumbled a bit. The next day my leg was even heavier, like it was made of concrete.
I went to the ER, where they did an exam and MRI’s. After a long wait in the exam room, they called me out into the hallway to look at the images of my brain. It was covered in large blue orbs, which indicated that those areas had damage to the nerve coverings. There were significantly-sized blobs of devastation in my brain. They sent me home with a fact sheet and tentative diagnosis of Multiple Sclerosis. They scheduled me an appointment with the local neurologist.
Monday morning I woke and dragged my heavy left leg to the living room and began speaking to my husband. A slurry, drunken voice came out. The left side of my face was now paralyzed, drooping. I looked like a terrified old man. This was not a good look for me, and I was amazed at my body’s new ability to plot against and terrify me.
With my appointment the next day, there was nothing to do but wait. My husband called my workplace to tell them I was having some unusual symptoms and would be taking sick days for the time being.
The next day I saw the neurologist. He was nonplussed and complacent, surprised by my condition but not all that concerned. He sent me home to see how things would progress, with plans to start medication, or something, at some point, or see if I got better, or disappeared, or something.
His lassitude and unflinching toadlike demeanor stunned me, but this was the end of the road. All the other neurologists in my area were booked solid for months. So I did go home. And I did get worse.
Over the course of the rest of the week, my right leg became numb and useless as well, and the numbness crept up past my waist. I stumbled around the house at night, barely able to stay upright but unable to lie still. My abdominal muscles, normally used to keep my balance, were paralyzed and I could no longer sit up in a chair on my own. The next body part to lose function was my left arm. Still unaffected were the right side of my face and my right arm/hand. The neurologist office wouldn’t return my calls.
I told my husband, "Just leave a message that I died and see if they give a shit. Do it. Call them and tell them I’m dead.”
My family history contained MS. But I only had a tentative diagnosis, and only 2 percent of cases begin this aggressively. What if I had some mystery disease? What if my lungs or heart were next to stop working?
At this point my whole body was numb and paralyzed, save for my head, neck and right arm/hand. My abdomen was distended and bloated. My bladder, which was no longer functioning normally, trickled out urine slowly. I ate bowls of high fiber cereal, thinking I was constipated. Turns out my bladder was no longer releasing all the urine inside of it.
I checked myself back into the emergency room. At the hospital they ultra-sounded my abdomen and found that there was a gallon of urine inside me. They had to give me a catheter to get it out.
I somehow found the right people to yell at and scored myself a referral and appointment with a better neurologist in the city.
The hospital was in a “bad neighborhood”, but it had better doctors. Sure, it was the first stop for gunshot victims and there were street people coming inside to pee in the lobby’s potted plants. But I was finally in the right hands.
They gave me the highest dose of steroids possible through an IV. I began physical therapy and sent mental commands to my deadened limbs. The doctors didn't know if I'd get better or not. My physical therapists began talking about things like nursing homes and electric wheelchairs, to which I responded with quick venom, like a cornered animal.
One day I was able to move my big toe. Days later, I could wiggle my knee. The physical therapy continued, my nerves kept waking up, and I kept trying because it was the only direction.
They took out my catheter and began what is called intermittent catheterization. This meant that every 4-6 hours a nurse stuck a tube in my urethra, drained my bladder, then removed the tube. This went on for weeks and became so routine that I joked with my roommate, or watched Home Shopping Network, all while feeling like a bag of Capri Sun.
At night after I took my Ambien I felt like I was floating. I visualized walking again, returning to my life, even building a new and better life.
In the therapy gym, I pushed myself hard, sweating all over the equipment and my trainer. Other people were doing exercises of their own. There were burn victims that looked like mummies in bandages, car crash victims relearning what things like forks and staplers were, people who needed to be reminded what their names were.
I graduated to a walker, and then to a cane. Miraculously, the week before I was scheduled to leave rehab I no longer needed to pee through a tube. I went on to ditch the cane and now have only a slight limp and a clumsy left hand.
What has remained is crushing fatigue. The fatigue is comparable to a bad flu, a special kind of lack of motivation and energy. I also have nerve pain in my legs, which feels like I spent a day on the beach with no sunscreen, rolled in broken glass, then sprayed myself with acid. Because of lack of energy, nerve pain, and loss of some mobility I qualified for and began to receive disability.
And life goes on. MS can cause cognitive issues. I worry about becoming stupid. Sometimes I can tell that I'm processing things more slowly than I might have in the past. I spend a lot of time on my iPad, reclining and saving energy. I can't afford the copayment on the fatigue drug I was prescribed. It would stop working after a time, anyway.
I struggle to define where I fit into the world. I write a lot, sometimes for some freelance gigs. I don't like to tell people about my health until after I get to know them. Once you let the cat out of the bag, it's hard to put it back in. I don't always have the patience to field the shocked reactions and questions that come at me. My family tells me I should be less secretive about it. They might be right. But they’re not me.
I struggle between being mysterious about myself, and becoming some kind of Inspirational Disability Barbie ™. I fear being treated like a porcelain trinket. I fear being suspected of gaming the welfare system, should someone see me having a good day, or a good hour, during which I’m relatively “normal.”
But mostly I fear my identity being overshadowed by the disease. To dwell on it is to feed it, and what looks like denial is actually my best coping mechanism. I’m proud of what I achieved to overcome it, but at the same time tired of thinking about it. Today as I share my story with you, I’m in a happy middle ground.
After I left rehab, I was started on a regimen of MS medication. The medication felt creepy. What the hell was in this substance that it needed to be injected, in the first place? It regulates my immune system and keeps my body from attacking itself. The medication flows through the needle for 10 whole seconds, during which my constantly-wandering mind wonders if I can thank it for my good health, or if I’m just lucky.
It's my shot of courage. It's my shot in the dark.
Now and then my doctor asks if I want to stay on it, and I say yes for what feels like sentimental reasons. He nods, marks it on my chart, and I leave his office. I walk down the hallway into a future full of possibility, carrying the disease that sleeps inside me.