Scarlett O’Hara

Needles 1

I found out I had Multiple Sclerosis in the fall of 2006. Strange back pain, burning skin sensitivity, and a progressing limp landed me in the emergency room undergoing a battery of tests. After midnight, a nurse woke me in my hospital bed to administer an anti-inflammatory drip.  “I have to do this, honey. It looks like you have MS.”

The next morning everything that came out of the attending  physician’s mouth was babble and blur. This thing wasn’t a death sentence, but still terrifying because apparently there was a chance I’d be paralyzed or crippled, or something.  I gritted my teeth and tunneled through the ache in my back and legs, the skin hypersensitivity, the temporary paralysis, the inability to lift a glass of water. Then I dove into denial about the whole thing.          I can’t think about this right now. If I do, I’ll go crazy. I’ll think about it tomorrow.

My specialist at the time said that I was in the Relapsing-Remitting group. That meant that I could experience relapses of symptoms like extreme fatigue, weakness, spasticity, balance problems, bladder and bowel problems, numbness, vision loss, and tremors that were followed by remission where those symptoms could fade or go away completely. I translated that to mean that whenever this illness sucker punched me in the gut and I doubled me over, I’d be able to eventually catch my breath again and get back into my stance.

He recommended physical therapy at the hospital to address the weakness in my left side, the vertigo and the limp. I waited until I was strong enough and went right back to my martial arts classes. I’d been a student for two years already and in my mind quitting was not an option. Excruciating spasms in my left arm and leg came and went. I ignored them. My vision blurred and faded. I blinked repeatedly to bring it back. My energy level was constantly like a half-charged battery, but I kept going like I had something to prove. I didn’t tell anyone about feeling like a block of lead in my bed in the morning, or about the tremors in my hands and the buzzing down my neck when I leaned my head down. The Baclofen and Gabapentin made me drowsy and nauseous, so I threw them away. I kept that, and the tears to myself, too.

On my visits to the Corrine Goldsmith Center for Multiple Sclerosis at Mount Sinai in New York City, I’d walk into a waiting room full of older patients, some with canes, others with walkers and still more in wheelchairs. I’d flip through People or Vanity Fair and be mistaken for the caretaker of someone who was in with the doctor. When I assured them that I had what they had, that I was a card-carrying member of the MS gang, they could hardly believe me. I kept an elastic pace with my back straight, but it felt like my waiting room counterparts didn’t know whether to encourage or pity me.

My first treatment was a daily injection that left gigantic mosquito bite style welts on my stomach and hips. I’d load a syringe into an auto-injector gun and shoot myself every night. The welts throbbed for days until I cycled back to the same spot to do it all over again. I kept this up for a year when I started thinking about smashing all those little syringes with a hammer and sprinkling them down the compactor chute. I stayed off treatment for about eleven months before confessing to my doctor and he browbeat me into trying another injection. It was only three times a week, but the side effects were horrific. I stuck it out for a year until the joint aches, the chills and sweats, the fogginess and migraines made me want to jump off a building. I stopped refilling my prescriptions and chose to coast without medicine one more time.

After another year of tempting fate, I tried a treatment I heard about from a friend. It was a monthly infusion that presented no major side effects (other than possible death by brain infection). It just so happened that the doctor who ran the office where I went also had MS and took the same treatment as me.  He calmed my nerves about the state of my brain and spinal cord, and the juice that was getting pumped into my veins. Like the other treatments, it was supposed to slow the worsening of my disability, decrease the number of serious flare ups, and I only had to think about it once a month.

But a year later, I switched jobs and was afraid to let them know that I had a chronic illness. I wasn’t prepared to explain it to a prospective employer without fear creeping into my voice. So I kept my mouth shut and stayed under the medical coverage radar. After all, I had done it before. I had gone for long periods without treatment and been totally fine. There was no reason I couldn’t do it again. Did I mention that I kept up with my martial arts training and earned my Black Belt less than a year after being diagnosed? (That’s another story for another day)

Fiddle dee dee.