Hiding / Not Hiding with Parkinson's Disease
In the world of disabilities, one of the top “don’t say this to me” statements is “but you don’t look sick.” In what it can infer (quit your whining, pull up your britches, and get on with it), it’s easy to see why. No one wants people to call them a drama queen/king, let alone a liar or someone looking for false sympathy. Instead, we want people to show real empathy for our plight, even if we know it can’t be fixed. Simple comforting feelings go a long way, especially if many of our symptoms are hiding or "invisible."
For me, I felt this in great detail while on vacation in Italy. The words I told my wife (“you don’t know how bad this feels”) while being discombobulated by a series of physical stressers (rushed for time, not eating or drinking enough, not sleeping right) and a few mental ones (being endlessly hounded by relentless street sellers), which played poorly with the crowds and a new traffic style known as “High Stakes Chicken” (Who is going to stop first? The pedestrian or the Smart Car?), broke me down into tears. I felt better when I got it out, but I’m sure people were wondering, “Why is this guy sitting there crying at the Colosseum?” I guess they might have assumed it was my feelings for religious martyrs, but really, it was my old nemesis Mr. Parkinson’s.
Back in the real world
For me, public issues on that level are generally a non-issue. I’m old and cantankerous enough to know when to declare that the sofa is calling me. When it does, I’m done with the outside world. However, I also have my physical issues that are becoming visible. They aren’t too severe due to only being in Stage 2, but they’re there. For this, there are times when I’m thankful to hear someone say, “I didn’t know that you had Parkinson’s.”
Case in point
Recently, I told a person that I worked with in a part-time capacity that I once was a teacher, but I gave it up due to Parkinson’s. Since she was a nurse, she saw instantly that I had Parkinson's. She just knew. I was shocked, but I didn't need to be. My walk is more “clumsy” (in my opinion) from dystonia, compensation for balance, and shuffling. Hence, I give myself a wide berth to not bump into things. Clumsy can be costly in "fragile" stores.
Additionally, my arms go rigid while walking, just like my legs. What’s more, they don’t swing like most people’s arms do. Ozzy can sing it for me or Robert Downey Jr. can announce it; “I am Iron Man” (cue the bass line).
I also sport the claw on my hands and toes. Sure, you can’t see it on my feet, but that’s because I wear my hiking boots to hide it. I’m sure that looks weird with dress pants, but for now, I chalk the boots up to the nasty weather. The point is to be comfortable and functional, not stylish, unless I’m Will Smith trying to make this look good.
Nevertheless, in the Parkinson’s-free world of work, I wear a mask to hide it from those I serve. Even if I do this poorly because of my tremors, I still try to stay in hiding. However, sometimes, as the Brits would say, “I get sussed out.” In the end, I'm still okay, and I want people to know that's for real.
At least not now.
Despite not wanting to be analyzed, I’m not in hiding. I do have a sign on my desk that announces I’m a voice for Parkinson’s. I’ve got a picture of my wife and me with Jimmy Choi. To casual company, this could be for the same reason I speak and hope for a cure for Alzheimer’s (in that case, my gram, now deceased). For all those I interact with regularly, they're aware. For those people who don't ask, I don't say. However, if strangers ask, I’ll answer and educate. Otherwise, my goal is to help others attain an education and impart the wisdom of my experience to them as long as the fates allow and hope that most of my symptoms stay hiding or at least don't prevent life from happening.
Dealing with it
For these reasons, I'm working to control my Parkinson's and to live well. Yes, it’s tough with Parkinson’s face because people still remark on that, either as to why I’m sad or moody or as to why I don't blink, but in most cases it can be explained away. In those cases, I’ll hear the “I’m sorry,” but there’s no need to be. It is what it is. I’ve learned to handle what it is and where it’s going - even if I'm hoping a lot of that won't happen for a long time.
I just wish people wouldn't remind me so often. I’d prefer to be leading a "regular life" since I’m still Dan, not Parkinson’s. So if you verbalize that you don’t notice what I'm hiding, I’m going to take it as a positive to how well it seems like I'm doing. Besides, if I hear it long enough, the placebo effect might work.
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