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.

Saturday, August 7, 2010


So I'm staring down the barrel of my 44th birthday, past middle age and cruising towards death. I feel like all that's left is trying to not be a hairy eared old man telling the same anecdotes over and over again. I don't want to become totally irrelevant. Let's face it, the only old men who aren't irrelevant are the very smart, the very rich or the very funny. I'm kind of funny but mostly I'm fucked.

I decided to do a little research - looking into what successful people were doing at 44. But what fields of success to look at? Honestly I'm a pretty shallow person so philosophers, writers, scientists and political figures were out of the question. That pretty much left celebrities.

When researching celebrities at 44 do NOT look at rock stars; you will start looking for a building tall enough to jump out of without the risk of just getting paralyzed. Mick Jagger? Dirty Work. Sure it went platinum but it sucked platinum ass. Pete Townshend? The Iron Man Musical, hated by grownups and children alike. (ok, I'm Not Going To Run Anymore was good) David Bowie? Two words - Tin Machine. Springsteen released two albums on the same day, Lucky Town and Human Touch, both were universally ignored so they just stuck him in the Rock and Roll Hall of Fame to distract him. Lou Reed? Became a Honda Spokesman and performed at Farm Aid to a generously luke warm reception. So where to look? Professional athletes? F-that, you get hailed as an iron man for being able to walk after 40.

I realized that what I was looking for wasn't about accomplishments or notoriety, it was about the half way point actually being half way. I was looking for hope that there was more to come, perhaps even something fun or exciting. So I looked to the people I know could give me hope - A-list Hollywood actors.

At the age of 44 Paul Newman had just released Butch Cassidy and The Sundance Kid. He still had The Sting, Slap Shot and The Verdict ahead of him. At 44 Clint Eastwood released High Plains Drifter which he directed and starred in, still ahead for Clint? Four Dirty Harry movies, Escape From Alcatraz and The Unforgiven which brought him his first Oscar at the age of 64. Max Von Sydow did the Exorcist at 44 and would go on to appear in almost 90 more movies.

At 44 Samuel L. Jackson was still a year away from the release of Pulp Fiction, Viggo Mortenson was Aragorn in The Fellowship of the Ring. Although both had been around for a while many would cite these films as career breakouts. Hope! There it was. Yes, I know that I'm just another schlub who won't do anything spectacular. I'm cool with that. It's not about fame or fortune, it's about how these guys kept going into middle age or reinvented their careers. I just need to find a spark to do something interesting or fun with the second half of my life.

NOTE- All celebrity ages at time of said accomplishments are guesstimates based on birthdays and release dates. Could be way off so don't quote me.