Wife, mother, writer, founder The Perfect Provenance, brownie eater
Wednesday, March 20, 2013
In Sickness and Health: My Illness Anniversary
It's not easy for me to slow down. I have the stereotypical Type A personality that thrives on taking on too much, dancing as fast as I can. Fourteen years ago this month, I was newly wed, living in Manhattan with a great job and happier than I had ever been in my life, when everything came to a crashing stop. One morning at the gym, I got off the treadmill after running just a mile and said to my husband, "I can't finish. I think I need to go home and lie down." So I stayed home from work (something that I so rarely did I could count my sick days on one hand). I couldn't get out of bed that day for a drink of water or to pick up the phone. My whole body felt like a lead weight. The next morning my eyes would barely open and the right side of my face in particular seemed to not be working. I shuffled off to the optometrist convincing myself it was my contacts bothering me and not neurological. But let's be real: When your face stops working you know there is something wrong.
The eye doctor took one look at me and asked me how I was feeling. Could I breathe okay? Two weeks later on April Fool's Day, after several tests and meetings with neurologists, we had a diagnosis: myasthenia gravis, Latin for weak muscles. A rare autoimmune, neuromuscular disorder affecting the involuntary muscles -- you know, like the ones that help you breathe, open your eyes and hold your head up. It wasn't possible, we told the doctors. I'm just tired, I'd never had cavities, never broken a bone, never had a stitch. But that's the thing with a medical crisis. It doesn't give a damn about your plans, your past or your future. It's full of all kinds of absolutes and demands whether or not you want to believe it.
As predicted, I got a lot sicker before I got better. I endured major surgery to remove my thymus gland (located behind your breast bone), started a cocktail of steroids and sleeping pills that was truly a deal with the devil and hoped that in five to seven years I might go into remission. Just maybe, maybe, if you do all these things you will get better, I heard as I grew weaker and weaker. The steroids helped me get through the day, but the side effects were dramatic. I was forced to quit my glamorous job, change my diet and watched in horror what steroids did to my physique and psyche. Asleep, I hallucinated; awake, I experienced severe mood swings and saw my small frame put on 20 pounds. "You've got to help me," I pleaded with my neurologist. He sent me home with a three-month prescription for an antidepressant.
I sat on my couch staring at the pills for the rest of the day until my husband came home and I told him I didn't think I could take more pills. I wondered out loud how he could have gotten stuck with such a lemon. That was the day we took back my life, our life. That was the day when you don't simply say for better or worse, sickness or in health -- you live it.
Up until that moment, we had followed the protocols as best we could, but still I was tumbling down a mountain faster every day. The effect of the disease on my body was huge, but the games it played with my mind were worse. It took away my future and my present in one full swoop. How can anyone recover when their body is conspiring against you with such a vengeance?
So we came up with a plan, a plan that our doctors might have scoffed at had we told them, but it worked for us. We threw away the antidepressants. We decided there would be a future where I was off drugs. It involved exercise, going back to work (that's right, two things I thought I'd never do again), humor, goals and learning to understand the randomness of life. A journey that I am still on today. I took sleeping pills for one year to combat the effects of the steroids until running helped me break free. I took steroids for 4.5 years until I was finally weened off. I started a company. I had three children. I had three children because they told me I could, and we couldn't pass anything along to them. No known cases of long-term effects but of course, there were effects, and yet we soldiered on. I tried to feel guilty about it, blame myself, but my husband wouldn't let me.
We have been tested and set back many, many times since that fateful day at the gym when I first got sick. But without question, every time we have been pushed back down, the same formula of exercise, humor, diet, and believing in the randomness of life gets us back on our feet. I ran my first half marathon last year, an idea that would have been inconceivable not long ago.
I called myself the caboose out of the five women I ran with. My body may not be what it used to be, but my pride I've learned remains firmly intact, and doing that marathon knowing I would be the slow poke was monumental. A far cry from my days winning gold medals as a kid in the Junior Olympics, it wasn't pretty, but despite the fact that MG still choruses through my veins, I ran that marathon standing up. And who joined me for the last three miles, running alongside me? My husband, the quiet force beside me who helped me get up and dance again and run again. This year, we are running the half marathon together. I told him he can do it, he's got to put in the work, he needs a plan. On April 1, 2013, we will raise a glass to my illness anniversary 14 years ago with a wink and a smile and maybe a celebratory run.