Running with it

Written by on July 6, 2009 at 9:48 am

I have little patience for emotional displays. So when I was first diagnosed with MS, I did what all people with low tolerance for commotion do: I refused to talk about it and pretended it didn't exist. MS? Who, me? I've since come to learn that chronic illness isn't a personal fight that can be hidden away or ignored — it's a battle fought by friends and relatives who share the pain and uncertainty of life with MS.

My MS doesn't show. I'm often told how good I look, and sometimes, those words are said in a rather self-obsessed reassuring tone ("Don't worry about your progressive, incurable neurological disease — you're still attractive for someone your age"; other times, I think I hear disbelief in the but-you-look-so-good statement ("C'mon, how bad can this disease be when you look as healthy as you do?").

For the most part, I believe the majority of people simply don't understand what living with MS is like. For that matter, sometimes I forget, too. And then something happens, a big wake-up call named Relapse, and instantly, I remember how nasty MS really is.

After my second Challenge Walk, I had a call from Relapse that meant multiple hospital stays and a recovery that took months. During that time, my Challenge Team was far more than a group of friends raising money for a good cause. These wonderful, amazing people were my lifeline. They made me laugh when I didn't think I had it in me. They made me feel strong when I wasn't and they let me pretend all was well when things were far from okay.

At this stage in my life, I've stopped running from MS and, instead, I'm focused on learning how to run with it. So how do you learn to run with a disease? You tell your family and friends. You accept their love and support. And gradually, you come to know that disease isn't a shameful word.

Living with an illness that has no horizon is difficult. Right now, there's no cure to stake hope to. The physical toll of MS is obvious, characterized by hospital beds and dark glasses, but the unseen effects are the ones that are the hardest to live with. MS challenges emotional strength, tests relationships and can make any goal seem impossible to reach.

Thanks to the Challenge Walk, I know what seems impossible isn't. While there's no cure now, there will be one some day and eventually, MS will have more than a horizon. It will have a sunset.

Diagnosed with MS in 1994, Patty responded the way many do: she refused to discuss it. It took her ten years to realize that silence isn't the answer. She, her friends and family formed the Blister Buddies for their first Challenge Walk in 2004. Patty is now on the Challenge Walk Steering Committee and chairs the PR Subcommittee. In November 2008, she became a member of the Greater NE Chapter's Board of Trustees.

1 Comments so far ↓

  1. Heather Heather says:

    Patty, what a great piece!
    I also get the "but you're so young", "but you look so good", even "you're lucky". I feel lucky to have met all of you at the Challenge Walk to help carry me through the physical and emotional challenges!