Not All About Me

There's nothing like a degenerative illness diagnosis to make one obsess about oneself. I remember not long after getting the word that I have Parkinson's disease, my husband and I were crossing the street on our way to a restaurant when I tripped and almost landed on my ass. When my husband asked if I was okay, I started crying. He, of course, thought I was crying because I had hurt myself; I said no, that I was upset because I was starting to lose my balance already. (Loss of balance is one of the signature symptoms of PD.) He took me back to where I had tripped, pointed to a rather large pothole that I hadn't seen and gently pointed out that anyone stepping in that would have had trouble not falling.

Yes, so there's a long list of fun things to obsess about: physical symptoms, progression, who to tell about one's diagnosis, who not to tell, what to do when the time comes that you can't work anymore, the high cost of health care. There are certainly a lot more things to include in this list, but you get the idea. Besides, I'm getting depressed thinking about it. More importantly, that's not the point of this post.

What I'm thinking about now is what it must be like for other people, the people who care about me, knowing that I have this illness, and wondering about my future. Because while it's only natural for me to think about these things, I'm sure they do too. On top of that, I think that they must worry about how much to tell me about their own fears. Really, not many of them do, probably because they figure I have enough to deal with as it is. But actually, I really would like to know. So, here's an invitation to share those things, either by leaving a comment on this blog, or getting in touch with me offline.

And in addition to thanks upfront for sharing, I want to thank you for everything else all of you do for me, most of all by simply being there.