This week’s conference really opened my eyes to a number of new things, and at the risk of not being timely, I want to explore those things in separate blog posts. It may take me a while, but hopefully will provide you all with interesting information and perhaps open your eyes in the same way.
The first person I want to talk about is Dr. Tim Kingsbury, who is a physician in Maine, but was speaking at this conference as a patient. Dr. Kingsbury has a rare medical condition that caused both of his hands to permanently cramp in a position that’s hard to explain, so I’ve replicated it and took a photo:
Dr. Kingsbury began his talk by asking everyone in the audience to put their hands into that position, and then to try to clap; obviously impossible. His voice broke a bit when he said, now try holding your wife’s hand.
Previously, the only way to help a condition such as his was with surgery, and he could not do this because it would sideline him from work too much, likely to the point that he’d lose his job completely. So, he was incredibly happy when a new injectionable drug, paired with a non-surgical manipulation, helped him regain most of his hand function. He said that at the procedure, he and his wife – and the doctor even – had tears pouring down their faces, because they were so happy and relieved.
I spoke with Dr. Kingsbury after his talk. He said, “I know it’s not a life-threatening disease, it won’t kill me, but…” That “but…” is the thing. When you have a chronic and debilitating condition, even one that isn’t fatal, you die a million tiny deaths. When my joint pain is so severe that I can’t hold my daughter, when my fatigue is so bad that I can’t attend a friend’s party, when Crohn’s distracts me from any good part of my life, each and every time is a tiny death. Dr. Kingsbury and I talked about how it feels to be taken over by a disease, especially one so misunderstood. We also talked about the way it feels when one drug just changes your life, when it suddenly gives you your whole life back, almost as though all of those tiny deaths never happened.
It was truly amazing to look into Dr. Kingsbury’s eyes and know that he understood me, that he was me, even though we are such different people, not even suffering from the same condition. Although it sounds like a sad moment, it wasn’t – it really made my day.
And I hope to make one of my readers’ days too – I have a special giveaway that I’ll provide to one lucky reader! The prize is a copy of ePatient Dave’s new book, which I discussed in my previous post, as well as a brand new LiveStrong bracelet. To win, just post to one of my e-Patient Connections blog postings and you’ll be automatically entered. Good luck!