Marathon #61 – 26.2 for Phil


Amber’s Story:

I’m not an IBD patient – I’m in relatively good health.  I’ve not had to be the primary caretaker of a loved one living with Crohn’s or Colitis.  Nor am I a health care provider working tirelessly to provide relief for their patients and get them into remission.

But I am the older sister of someone who had the misfortune of winning the Crohn’s lottery – my brother Phil.

He was a quirky kid who often marched to the beat of his own drum.  And as the Big Sister, I sometimes liked to exploit that. I’d take advantage of his idiosyncrasies and persuade him to do all sorts of things that would get him in trouble. I relished the chance to needle Phil until he exploded and caused a scene that he, and not I, would be blamed for.  “Amber made me do it,” he’d cry. But no one was convinced that me – his responsible and mature older sister – could EVER have done such a thing.

Well, after all those years of torturing my little brother, he got me back. When he passed away in 2012 after riding the roller coaster of Crohn’s disease for 16 years, I was left empty and bereft. That quirky kid had blossomed into a clever and handsome young man with a wicked sense of humor. He got married and had a wife and adorable son, the spitting image of his dad. And he NEVER wallowed in self-pity about being dealt such an unfair hand. Despite his disease, he kept pushing on. Before there was Take Steps or Team Challenge, he’d walk the Mini-500, a half marathon in our hometown of Indianapolis, to raise money for Crohn’s and Colitis. He completed 210-mile charity bike rides to raise funds and awareness of IBD while his body was operating at way less than full strength. 

While he had every right to be selfish and focus on himself while going through flares that shrunk his body, caused joint pain, and resulted in surgeries – he was completely selfless.

He lived life to the absolute fullest – until he exhausted life. 

Phil compelled me to continue that legacy – of turning what could be considered a sad situation into a drive to make a difference for others.

His example prompted me to take up running in 2011 – and I haven’t stopped since. I have participated in 12 races with Team Challenge, and I’m going to keep doing them until we have cures for Crohn’s & Colitis. And Phil has motivated me to serve the Foundation in other ways – as a National Trustee and chairs of the Advocacy and Mission Committees – and I’m so proud of the work our collective IBD community is doing to better serve patients, advance new treatments, and elevate the voice of the IBD patient. So now, my brother is making ME do it – and it’s an opportunity I cherish.

Marathon #61 – Recap

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