A week ago I was lucky enough to be in the front row while Michael Graves gave his keynote (watch here) at Stanford’s Medicine X 2012 conference. Months earlier, I had used Mr. Graves (along with Chuck Close) as an example in my scholarship application essay, without realizing he was going to be a speaker! I only ended up at MedX because a “frientor” (friend/mentor), Nick Dawson, sent me a link and assuaged my fears that I wasn’t e-patient-y enough for consideration.
Some background… I’ve been living with Crohn’s disease since middle school, right around age 12. I’m 31 now. I have been told that my disease is severe. For most of my life with Crohn’s, I was too busy fighting illness and trying to accomplish all the normal milestones (high school, college, work). It wasn’t until about 4–5 years ago that things calmed down to the point where I felt I had something left to give back. My mom and I restarted the local support group. I got involved in fundraising walks. Thanks to a friend, I got hooked up with the lupus and spoonie online communities.
There’s been a little voice in the back of my head for as long as I can remember. “Help people,” it whispers to me. I went to school, and work, as a graphic designers. I spent what little energy I had on myself, surviving. “Help people.” I will, I will. I wasn’t sure how, exactly, or when. But I kept my eyes open.
I do little things, and I don’t necessarily do them well or consistently; usually small actions that don’t require a long term commitment. I’ll spend my sick day Tweeting encouragement to other Spoonies. I’ll donate to charity or give a few dollars to a panhandler. I’ll participate in a Congressional advocacy day, and sit on a local panel about health care. I’ll set up a Facebook group for the support group members to have a place to talk between monthly meetings.
But I’m not a brand. Most people online don’t know who I am and even fewer people in real life even know about my illness. I don’t necessarily want that. I’m still struggling with how I want to approach my advocacy persona, but I do know I want to help people.
Which brings us back to Mr. Graves. An infection in 2003 left him paralyzed from the chest down, leaving him wheelchair-bound. Instead of ignoring the position he found himself in, he chose to use his talents to help his new community—hospital patients.
I always hated Pollyanna sentiments from other people, but turning lemons into lemonade may be the best way to describe this phenomenon. In this respect, disability or chronic illness, is an opportunity. It allowed Mr. Graves to reframe the way he saw the hospital room. His experiences as a patient and expertise as a professional enabled him to be taken seriously. He’s redesigning transport wheelchairs that haven’t changed since the 1930s. He’s creating hospital furniture that can cut down on infections. He’s helping people that have been traditionally ignored.
He wouldn’t have gotten there without his joint experience of his professional past and his patient experience. Both parts of him, as a person, are important. I feel like there are lot of “sick people” who focus only on the “sick” part and forget the “people” angle. My own insecurity about this has led me to feel unworthy of being a voice in the patient community at large. What is the point of fighting to be well, if I’m only going to wallow in illness?
Marianne, another MedX epatient later told me, “You were like a little kid in a candy shop when he was on stage.”
Michael Graves is a hero of mine because he is a real-life example of using devastating experiences to create something beautiful and purposeful to help other people. His suffering has meaning in this context. It becomes worth something bigger than himself. Selfishly, I want to believe that mine does too. It has to.