There You Are

One thing I've learned in the 12 years I've known Mark is that as a result of having Crohn's and Ulcerative Colitis, you find yourself living a rather solitary life. By the nature of the disease, things like vacations, dinners out, shopping trips, movies, even visits to friend's houses are limited because you are constantly dealing with pain, bleeding, frequent bathroom trips, and/or limited menu options.

Mark and I work around it; we've found ways of enjoying a life that accommodates such things. We have 'date night' at home quite often (LOVE Red Box and Applebees Carside to Go). We pad vacations to allow for days of sickness. We see friends together on special occasions (or I go without him and 'report back').

The thing is, with all of that 'accommodating' we both began to feel very much alone in our individual struggles with this disease. No one really got what it was like. They tried, they sympathized, but they couldn't truly understand. Personally, part of me was truly thankful for that -- there are things about this disease I wouldn't wish on my worst enemy -- and part of me was a bit resentful of it. There were no words I could use that would help even my closest friends understand what living with IBD (either as the sufferer or the witness) is like.

Then, about 16 weeks ago, we signed up with Team Challenge for this marathon. We did so to have some kind of control over the uncontrollable. To take a personal stand, each for our own reasons. To prove to ourselves and to each other that we could do this and it would mean something. To raise money so that Mark could find hope now that he's at the end of the medicine spectrum, and that if Rowan should ever (God forbid) have to deal with something similar, there would be advancements in treatment.

But we found something else along the way. People. Friends. Loved ones who deal with IBD in one form or another. People who contributed to our fundraising efforts often shared the reasons why they were doing so -- and not all were because of us. Many reasons stemmed from a brother or sister, a mother or father, a friend or companion who deals or dealt with the same pain and frustration, the same solitude as we have.

Statistics can be staggering. Knowing that 1.4 million Americans suffer from this disease can make an impact. Knowing that your friend's mother deals with it actually affects you. I've collected 27 names of people who deal with Crohn's or UC on some level. These names simultaneously make me sad and give me a sense of kinship, of connection.

There you are. You're out there. You know. You feel this. We're not alone, even when we're by ourselves.

I'm taking you all with me, you 27 names. I putting you in the secret pocket in my running clothes and you're going to walk each one of those 13.1 miles with me, crossing that finish line to say that IBD will not control your life. You are not your disease. And your partner, spouse, friend, family who lives with it right along side of you has reason to hope.

I have reason to hope.

Rafael Block
Millie Tollesen
Jeff Campbell
Cindy Campbell
Linda Seide
Mike Harris
Alice Cillo
John Sheehee
Debbie Dinardo
Rhonda Sheffield
Mandy's friend, Dawn
Stacie Bergwerff
Amanda Huyck
Harrigan's friends/family: Dylan, Lois, and Bill
Fraser
Kimmer's friend, Will
Colby Harrell
Samantha Knapp
Brian O'Connor
George T.
Trish McAllister
Sherry Banker
Jeff Wilson
Erika Weidenhof Hoffman
David Sarussi

There are so many more of you out there, but know that we are all running/walking for you, for this cause, for this purpose. Sunday night, in Vegas, I'll be walking (quickly) and I'll know that there you are, too.

-- Amanda