Please click here to order your copy of Worth the Ride: My Journey with Duchenne Muscular Dystrophy. All proceeds go to Parent Project Muscular Dystrophy (PPMD)

Tuesday, April 24, 2007

Back by Popular Demand

Seems I'm becoming quite the public speaker. Today and yesterday, I spoke to first-year medical students at the University of Pennsylvania School of Medicine, as part of their "Doctoring" course. The picture to the right is of me outside my house, just before leaving for one of the classes. The goal of the sessions was to help the students learn about treating patients with disabilities.

Though I would have been happy to answer any medical questions, I was glad that the discussion focused on what my day-to-day life is like instead of on the specifics of my disease because, as I told the students, people like me don't exist in a vacuum. I talked about some of my bad experiences with doctors, and also my positive experiences, which far outweigh the negative ones. And fittingly enough, the topic of people being uncomfortable around those with disabilities came up, which I had just addressed in my previous blog entry. I told the students not to worry so much about saying the right thing. Certainly, it is important to make one's best effort to address patients with disabilities properly, but at the end of the day, I can forgive mistakes like that if the doctor demonstrates to me that he or she really cares.

It was with a heavy heart that I spoke to students today, having first attended the funeral of my friend Eric, who had Duchenne's. Although we had not been close for many years, he was my first friend with the disease. We were the same age and first met almost 20 years ago, when we were both just becoming wheelchair-dependent. I thought it was so cool to know someone else going through the same things that I was.

I used to be able to tell myself that it wasn't going to happen to me (even though I knew the reality), but after losing four people I have known to this disease, it's not so easy to convince myself of that any more. Even so, I'm still here and I owe it to the guys who aren't to do something constructive with whatever time I do have. My book is not just for me, but for them as well. And every time I shout obscenities at the TV when the Phillies are losing for a change, it's for them, too!

1 comment:

C said...

Hi Josh,
I'm one of the medical students you spoke to a few weeks ago - I was cleaning my room today and found your card, and thought I'd check out your blog :) Thanks so much for coming to speak with us! We all really enjoyed hearing what you had to say. Also, I really like that picture of you from halloween dressed up as a tank! What a great costume. Anyways, thanks again, looking forward to reading more of your blog :)