A Captive Audience
Oddly enough, when I talk, people actually listen to me. Well, unless I'm at the dinner table with my family! Today, I addressed a group of pulmonary nurses at Children's Hospital of Philadelphia (CHOP). Drawing upon my experiences as both a teenager and an adult, I talked about what it's like for someone like me to be hospitalized.
For example, at home, my environment has been adapted to my needs. In the hospital, there's not much that I can do for myself. I can't change the channel on the TV. I can't read anything because I can't hold a book or turn its pages. I can't feed myself. I feel bad asking the nurses for help with these things because I'm not their only patient and they have more important things to do than to find me something interesting to watch on TV.
Help using the bathroom isn't something I have a problem asking for, but there's nothing like having a full bladder and you have to wait for the nurse to arrive. As a result, I would drink as little as possible. However, eight hours later, they would want to catherize me because I had not urinated!
Even calling the nurse is an issue because I cannot physically push the nurse call button. At CHOP, they now have sip-and-puff devices that allow you to trigger the nurse call systems with your breath, so that does help -- unless, of course, the device slips out of the range of your mouth.
One of the nurses brought up the issue of positioning. For many of us, it can take a lot of time to get comfortable in bed. I know that I often need my head moved several times. The pillows supporting my legs need to be placed in exact position. It can be very frustrating for caregivers.
"But trust me," I told them, "We find it just as frustrating as you do!"
On the subject of positioning, I also talked about the fear that people like I have of being moved by nurses because many of us have contracted arms and legs. It's not just that my legs are locked in place; it hurts when they are moved too much. One wrong move and I could be injured.
But I think that the biggest message that I tried to get across was that when you are in the hospital, you tend to act differently than you would at home. I explained how I became a lot more emotional when I was in the hospital for two months. Things that ordinarily would not have bothered me did just that. I only wished the nurses and doctors could have known me outside of the hospital because they would have liked me!
During that hospitalization, I was an adult. So if it was bad for me then, just imagine what it's like for a child. One of my most vivid memories from my hospitalization at age 15, following spinal fusion surgery (other than being in pain), was one of the nurses wanting to give me a bath. I felt awful and the last thing I wanted to do was get washed. All I wanted was to be left alone and I was less than pleasant to deal with. At that moment, whether I smelled badly was hardly the first thing on my mind.
Not a fun experience, to say the least. Let's just say that I was much more pleasant today -- and I smelled a whole lot better, too!
It seems I've become quite popular as of late. As I mentioned in my entry following my hospital appointments last week, yours truly was interviewed by The New York Times, which was gathering information for a wide-ranging story on DMD that should appear within the next few weeks, from what I've been told. The story will focus on the improved quantity and quality of life for those with the disease, which was why they observed my appointment. Just the simple fact that older guys like me are even around today is indicative of how things have improved.
