Wednesday, May 02, 2007

210 Miles, 3 Days, and a Life Dedicated to Making a Difference


I've heard that question so many times in the last 13 years of my life.

Why do I blog? Why am I so politically active? Why am I so positive, up-beat, and passionate?

There's many ways and words in which I could answer those questions with, but I think it all boils down to these few -

I survived.

I've recently been a lot more open about my life, and the circumstances that played into the making of Liberal Lucy. Let me really give you the full scoop.

I grew up in Metro Detroit, the oldest of three, the daughter of an auto-worker and a teacher. I was the girl who was involved in everything. I was a varsity swimmer, traveled to Europe as part of an honors choir, participated on the Debate Team and Model United Nations, founded my high school's first Students Against Driving Drunk chapter, acted in school plays and musicals, active my church's youth ministry program - you get the picture. Classic over-achiever, all-American girl with a great life.

And then I got sick.
And So It Begins

I first developed the strange, embarrassing symptoms at the age of 14. Wrapped in the blissful ignorance that is youth, I decided that if I ignored this interruption to my life, then it would just go away. Of course, reality smacks you in the face and you quickly realize that's not the case.

Being sick wasn't convenient to my busy schedule, and in part fear, part anger, I worked even harder to hide my symptoms from my family over the next year, and more importantly, myself. The downward spiral continued to get worse until my parents started noticing a drastic change in the bundle of energy that was their eldest child. I spent too much time in the bathroom, I was losing weight, my energy level was drastically reduced, and I was barely eating. I don't think anyone will forget that fateful day when I finally had to come clean and tell my parents exactly how sick I really was.

That first visit to my pediatrician led to an appointment with a pediatric gastroenterologist the very next day at Mott Children's Hospital at the University of Michigan, which was followed with the first of many colonoscopies, Upper and Lower GI's, X-rays, blood draws, hospitalizations, steroids, and worst of all, unbearable, excruciating pain.

After an original diagnosis of Ulcerative Colitis, the real culprit turned out to be Crohn's Disease. Not just any case of Crohn's, but as doctor after doctor solemnly informed us, one of the worst cases they'd ever seen in anyone, particularly someone my age. My large intestine (colon) and rectum looked like a bloody war had raged for years.

That would be the story of my life for over the next decade. With no known cause or cure, those of us with Crohn's Disease and Ulcerative Colitis, collectively known as Inflammatory Bowel Disease, are left to the medical profession's highly paid guessing. I never responded to any of the medications and traditional treatments. Painful new complications and side effects popped up at an alarmingly increasing rate. I developed rheumatoid arthritis, strange food allergies, super-bacterial infections, fistulas, and quite a few close calls where my life literally hung in a perilous balance.

Not an End, But a New Beginning

Despite mind-numbing pain, long periods of deep depression, over 70 hospitalizations and a whopping 35 different surgeries and procedures, I somehow managed to graduate high school on time, go to college, date, fall in love, have my heart broken, travel, lobby Congress and our state Legislature, be a leader within the student government, and have fun. It wasn't easy, and looking back, I know there's a simple explanation for how I did it all.

I didn't give up, I kept fighting, and I believe that God had other plans in store for me.

Ultimately I made a decision that changed my life, and at the age of 19, I decided to have my colon and rectum removed, and live the rest of my life with a permanent ileostomy. While it took me several years to come to terms with this new adjustment, it's a decision that I now celebrate. That surgery finally put my Crohn's into remission, and my body was finally allowed to start healing itself. I can now do more with my ileostomy than I ever could without it, mainly because I can finally live my life, no longer around the auspice of a crippling disease.

I believe that my life is supposed to be more than just that of a chronically ill person. I deal with my illness, the incredible pain, and all of the other terrible things by believing that all of it, the good and the bad, can be used to do so much for others. My life is about making a difference for others. After many years now I believe that I have been blessed with my Crohn's Disease and ileostomy.

I don't measure my life by how many friends I have, the degrees I may or may not attain, or the money and publicity that I may find. I measure my life in the difference that I can make for others.

It is with that spirit that I advocate, blog, and even when it's hard to do, stay positive and up-beat.
Getting My Guts in Gear

It is also with that spirit that for the second year, I ride. For three days next month, I will join others who have Crohn's/Ulcerative Colitis and their friends and family and ride 210 miles in three days.

Fondly known as Get Your Guts in Gear, the ride is designed to educate, advocate and raise money for the millions of us who suffer, and even more tragically, the millions more who will join us with their new diagnosis in the coming weeks, months and years.

Last year I raised over $21,000, despite setting an ambitious goal of $10,000. This year I'm aiming for $15,000. I humbly ask you to support me on this endeavor.

You can visit my ride page online, where you can read more about my story and others, Crohn's Disease and Ulcerative Colitis, and donate securely online. You can help by spreading the word, and informing others. Chances are pretty good that you know someone yourself with one of these illnesses.

Change can begin on a blog, in the home, on a bike, and always in the heart. Thank you for being a part of this incredible journey.


Nirmal said...


Clint Wallace said...

Thanks for sharing and for leading. And good luck with the ride.

NickC said...

good luck

Pohlitics said...

I chipped in. Good luck with the ride.

Walt S said...

I heard your interview with Jack Ebling last night - also caught your act on Skubick's Off the Record show.

You are amazing. Just listening to you talk brightens my day. You have a smile in your voice that is absolutely infectious.

Good luck with the ride. I'll be chipping in a little.

Anonymous said...

I too chipped in . . . you go girl! ;-)

philgoblue said...

As my boy says, thanks for showing us "our better angels."

I'm in, nothing impressive, but I'm in.

Have a great time!

In the little religion my daughter and I share you're soul is getting awfully big.

LiberalLucy said...

Wow, thank you so much - to everyone - I'm so blessed to have all of you in my life, on and offline - thank you, thank you, thank you!!!

Anonymous said...

I'll chip in on my next payday. Thanks for sharing your story. You are inspirational , thanks so much. Rosemary F.