December 18, 2014

A friend writes ...

"If I may ask, when were you diagnosed? I have been reading most of your blog entries, and I don't remember seeing that. If you don't want to talk about it, please don't."

Yes, you may ask. It's a perfectly reasonable question. I can even point to where you might see it, in the fifth entry in My Parkinson's Diary. That would be "Alternative Dwarf #1: Mumbly" which reveals the answer to your question as well as painting a pretty clear picture of why I simultaneously don't and do want to talk about it.

Careful reading of that entry shows that I first started noticing very subtle problems with my voice in early 2011. I pursued this with my primary care physician around that time, as well as with friends and family, but couldn't get anyone to hear what I was hearing. Finally after another school year had passed (2011-2012, the year the curtain came down on my Teacher Voice), I began seeing The Great Man for what was almost certainly Parkinson's-related depression, and when he realized something drastic had happened to my voice, my manner, my face, he sent me back to my neurologist at U-M who made the diagnosis in November 2012.

So, that would be when I said, "Holy shit, stop the fucking presses, I've got fucking Parkinson's Disease." Ummm ... that would be No. Because as I said at the close of "Mumbly," the diagnosis just set in motion the formal process of denial. Until that time, I had known that there was something seriously wrong with me, despite the best efforts of others to deny it, and now that I had received confirmation of my suspicions, it was apparently time to make sure that they remained just that. Which is to say that now that I had gotten them to talk about it, it was time to get them to shut the fuck up.

In other words, if a better question might be When did you know, the answer is I don't. Because when I look back on the past seven years or so, at least from when my brother Richard died, it seems that even as I've always seen this coming, I haven't quite been able to believe it myself. As I connect the dots from the earliest days when I fell on my ass for the first time while getting dressed in the morning in 2009 or 2010 to breaking my wrist in a fall later that year to voicing my fears of having lost a step in spring 2011 to when I realized I had nothing to say to my family in Saginaw because every time I spoke I heard my brother's voice coming out of me to the day of my diagnosis to the night I fell after getting out of bed then started this diary less than two months ago to tomorrow and every day after that, I will be trying to give two questions as answers to that question When did you know? It seems like Always? It feels like Never?