Saturday, August 28, 2010

A few words about multiple sclerosis

It fucking blows. I actually have a few more words about MS. I've had it for a little over 20 years and for the most part have been in the "closet" about it. When I was 23 I went to a New Years Eve party at a nice hotel with friends, drank a lot of booze and did some drugs. The next morning I was numb in all of my extremities and tripping over my tongue. I went to the ER and they told me I was drunk. Fair enough. Within a week my entire right side was paralyzed and I was in the hospital for a week. I was eventually diagnosed as having had a stroke and accepted that. As freakish as it is to have a stroke at 23 it was a hell of a lot better than the alternatives.

Over the next few years I started taking better care of myself. I quit smoking, started eating healthier and started running. I kept running for about seven years, even finished a half marathon. The whole time I had bizarre symptoms, numb fingers, double vision, toe paralysis. I'm not a fucking idiot - I knew I had MS but I just didn't want the confirmation. By the time I was 30 I was tired all the time, having regular flare ups, and a fiance who wanted to know what was happening and what it meant for our future. Looking back I can see that I was being selfish by hiding from the diagnosis - giving myself short term comfort instead of a long term plan.

Finally at around the age of thirty I decided to get diagnosed and see if there was anything I could do about the flare ups and the fatigue. Diagnosis means a spinal tap, which is pretty scary just to imagine. I lay on a cold gurney in a hospital hallway I watched the doctor prepare the six inch needle she was about to insert into my spine thinking "this is what it means to be sick". Oona drove me home, lying in the back of our crappy car flinching with every turn and imaging the air bubble travelling up my spine to my brain and killing me. We waited a week to find out, me in Mt. Airy and Oona in Ohio where she'd had to go for work. I went into the office and was told what I already knew. Already knowing didn't change the crushing sadness. My neurologist then listed all of the possible diagnosis that were so much worse that I didn't have - lupus, brain tumor - which was nice but didn't help at all. Thankfully she was able to tell me that with the history of my symptoms she was confident that I had relapsing remitting MS - which is exactly what it sounds like. As far as MS diagnoses go, RRMS is the best case and most common. Small comfort at the time. She told me about all of her success stories like the 80 year old guy who takes boy scouts camping. She did her best to buoy me but I felt like I was experiencing every single symptom I'd ever had right at that moment.

I started doing research into the disease, and reading every book I could get my hands on. I'd mark this as the biggest mistake I ever made. I became convinced that I'd never live a normal life. I was certain to end up bed-ridden or at the very least in a wheelchair. I knew - without a doubt - that my life was over. I sank into a pretty major depression while treating the MS through mainstream medicine.

Treatment for MS means one of three medicines, all of which you have to inject subcutaneously (right below the skin). I used a drug called Copaxone for a few years and was still having flare ups on top of getting to stick a needle in my leg every day. The flare ups meant an intravenous course of steroids over three days with varying degrees of success. MS sucks and it costs a shit load of money. It was beginning to feel like voodoo because none of the medications changed anything - the point of them is to hold the MS at bay and to keep it from getting worse, not fixing what's already wrong.

I decided to go off the grid, stop thinking about MS, stop talking about MS and stay away from people with MS. Crazy right? Apparently not. Over the last seven years I've had two flare ups and bounced back fairly well from both. I think it helps that I slowed my life down a little by staying home with the kids instead of working full time. Yes, I know how lucky I am to be able to do that.

The thing with MS is that it's different for everyone, like a snowflake, a shitty, shitty snowflake. For some like me it's mostly an annoyance. I get very tired sometimes and the roulette wheel of symptoms is hard to live with because you can never prepare. For others it's a nightmare, a slow descent into a wheelchair or worse. The bottom line is that you can have a major effect on the course of your MS. A positive attitude, exercise, diet and enough rest can do a lot in addition to or independent of a medical course of treatment.

One piece of advice to the recently diagnosed- stay away from the literature and "medical" websites, they paint a bleak worst-case scenario and will scare the living shit out of you. Stay positive and don't be afraid to try things even if they're something people with MS shouldn't be able to do. Since my diagnosis I've run 5ks, danced at weddings (drunk), hiked up and down mountains, played street hockey, freeze tag, soccer - you name the kid game I've played it.

Just keep moving and living. If you have to take a knee people will understand.


  1. Never knew this. Glad you decided to take control and do it your own way.

  2. very brave for coming out and talking about it. this is an awesome post, and I hope people find this when they are googling symptoms and diagnoses and find some hope in your words

    thanks be to Oona for putting your blog address out there on Facebook. Now I can stalk Steve and Susan's other favorite couple, figure out what you've got that Dave and I don't, steal those traits, and win their hearts in full.