"Forget about what you can’t do—do whatever you can to keep moving." So says a defiant Ashlea Deahl, who was diagnosed with multiple sclerosis at the age of 22. This is her motivating story about controlling her disease, fighting through fatigue, and "running" her first marathon.
I’m not sure what I ever did to the New York Yankees (other than devote my eternal soul to their rivals, the Boston Red Sox), but they didn’t have to give me MS. A stretch? Perhaps. But since doctors and scientists have yet to come up with a reason for my faulty immune system, I figure the Yankees are as much to blame as anyone.
The Beginning of My MS Story
Let me back it on up: It was November 2001, and I was at Game 6 of the World Series between the Yanks and my hometown team, the Arizona Diamondbacks. It was a riveting blowout against the East Coast intruders, and I thought perhaps that my vision was starting to blur from the sheer excitement of it all; the 50,000 white pom poms shaking in unison surely weren’t good for anyone’s eyes. But my blurred vision was quickly joined by dizziness and stumbling (did someone spike my Sprite?), and by the time I awoke the next morning, I had complete double-vision. I couldn’t walk a straight line let alone focus on an image long enough before stumbling to the ground in a vertigo-induced haze. I was a human kaleidoscope. After a misdiagnosis of an inner-ear infection (really, doc?), it took only three months to correctly diagnose me with multiple sclerosis. I was 22.
That was, gulp, seven and a half years ago, and if you’re anything like me, you’re thinking: OK, great, that’s super, get to the point...how are you doing today? Fine, fine, chillax, I’ll get there. But first, here’s a recap of the last almost-decade of my life: Refused medication in the first year and couldn’t read anything about MS without wanting to hurl...vision returned to normal...depression took hold; got my second exacerbation a year later (numbness and tingling in my hands and legs), which went away after steroid treatment...went on Avonex; got sick of being depressed and decided to makeover my health...became dedicated to exercise and losing the 20 pounds I had put on in college (if I couldn’t walk someday, at least I wouldn’t lament never using my legs); decided to run a marathon in 2004....walked most of it, but I still completed it!; felt great until last summer when I got my third major flare-up – numbness and weakness in my right leg, coupled with a defiant thyroid that decided to completely shut down; steroids and thyroid meds returned me to normality, other than extreme fatigue most of the time.
I think we’re luckier than all of those people with “perfect” immune systems (those cocky jerks). Why? Because we’re on a deadline...We’ve been given this gift of knowing that things have to happen now.
Learning the Importance of DMTs for Multiple Sclerosis
I blame myself for my third flare-up. Avonex had treated me so well, but I relied on someone else to give me my injection for almost five years. When that person was no longer in my life, I froze. I just couldn’t do it. Stabbing yourself just isn’t natural, is it? So I was off medication for a good six months, and even though I was more active than ever, my body retaliated. So here’s my first request: Stay on your meds! I’ve since woman’ed up enough to self-inject every week, and the sense that I’m taking control of my health has created a newfound confidence. If I deteriorate someday, which I’m not planning on, at least I did what I could to prevent it (short of seeking out stem cells on the black market).
My second request: Forget about what you can’t do – do whatever you can to keep moving. I hate running, so I walked most of that marathon. I’m tired as hell all of the time (my 81-year-old grandma has more energy than I have at 29, which is embarrassing to say the least), but I keep moving. Yoga, weights, walking, Crossfit, hiking, stretching, doing the dishes...anything to keep moving. Again, if I lose the ability to move someday, at least I’ll remember what it felt like. My next feat? I’ll be walking a two-day MS Challenge Walk in Washington, D.C., this October.
This isn’t to say I don’t have days that don’t level me, both physically and emotionally. I stay in bed all day some days, paralyzed by fatigue or depression, wondering what my ultimate fate will be. Will I be OK? If I have children, will I be able to care for them? Will someone have to take care of me? Is there a 12-step program for kettle corn addiction? Sorry...that’s another mental battle entirely.
But guess what? I think we’re luckier than all of those people with “perfect” immune systems (those cocky jerks). Why? Because we’re on a deadline. We know that someday – maybe, perhaps, hopefully not – our physical abilities could come crashing down on us, so we’ve been given this gift of knowing that things have to happen now. We take that trip now. We tell people we love them now. We go after our dream jobs and fight for things we believe in and make a fool of ourselves now, because later could be too late.
When I start getting down on myself...start wondering “why me?”...I break down the last 7.5 years of my life and realize, wait a sec, my life has never been better! I have my dream job as a magazine editor. I am active and healthier than I’ve ever been. I’ve finished a marathon and tried surfing and bought a skateboard...I even Zumba for heaven’s sake. I took a dream trip to Paris (and several other places). I choose my friends wisely. I cherish the time with my family.
Hell, I even fell in love with a Yankees fan. Perhaps they’re good luck after all.