April is Parkinson’s Awareness Month, and this is a disease that impacts me daily. About a decade ago, my husband was diagnosed with PD at the age of 44. This hit us out of the blue—there was no family history to foreshadow the condition and we were attributing his symptoms to something very mundane—a pinched nerve, carpal tunnel syndrome, etc.
I could write a lot about my husband and how terrifically he copes with the hand he’s been dealt… The man never complains or feels sorry for himself whereas I’m pretty sure that, in his shoes, I’d be the hostess of a 10-year pity party.
There are lots of nuances to his symptoms, but the upshot is this: His day is ruled by his medications and whether or not they are working. We sometimes refer to it as a Jekyll and Hyde existence but that doesn’t seem quite appropriate—while it’s “good” when his meds are “on” and “bad” when his meds are “off,” the whole Jekyll/Hyde analogy makes it sound like he turns evil, when he actually handles his off times with as much grace as any human being could muster.
Recently, he came up with another analogy—when his meds are off, he’s wooden and can’t move and when they are on he becomes “a real boy.” This seems more appropriate, and the transformation of how my husband comes to life when his medication kicks in is not unlike Pinocchio.
But I won’t presume to tell his story and instead will share my own. This is what I’ve learned having Parkinson’s “by proxy”…
1) There isn’t much I can control. I have a control-freak nature. And while having children was my first lesson in learning the limits of what I can control, dealing with my husband’s Parkinson’s is like being in graduate school. I find myself reciting the Serenity Prayer a lot. It’s a good prayer. I’m hoping one of these days it will sink in.
“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.” –Mother Teresa
2) There’s a method to His madness. While I think the adage, “God doesn’t give you more than you can handle” has some truth in it, I also think He likes pushing you right up against your limits at times. For example, I’m not the stop-and-smell-the-roses type. For a Midwesterner, I’ve got a rather intense East Coast approach to life and Parkinson’s is a condition that could try the patience of the most easy-going Southerner.
When I would think of my husband or myself dealing with illness, I imagined being struck with a more common condition, like cancer. This is a horrible, awful thing to deal with—no doubt about it. However, in many cases you can “battle” cancer, and if you’re lucky, you can win. Trust me, I’m not wishing my husband had cancer instead of Parkinson’s, but I sometimes think that fighting cancer would be more in line with my temperament. I like to think I would bravely don my armor and be at his side to help slay the dragons. But Parkinson’s isn’t a dragon—it’s the mosquito in the room whose buzzing keeps you up all night and slowly drives you insane.
There’s a David Byrne song with some slightly blasphemous lyrics that captures my perspective on this, “Green grass grows around the backyard shithouse. And that is where the sweetest flowers bloom. We are flowers growin’ in God’s garden, and that is why he spreads the shit around.”
Now, I don’t believe in a spiteful God, but I do think He is aware that my Serenity Garden is a bit overrun with weeds–and that my husband’s illness is part of a larger plan intended to help fertilize the flowers.
3) God provides help where you least expect it. Despite the negative lessons I’ve learned about myself, I’ve also learned that I’m not completely on my own. While testing me big time on the patience front, God has also sent some unlikely angels to support me through this process. People who accept me despite the aforementioned shortcomings. I’m very thankful for these people in my life.
4) We all need to cut each other some slack. There’s one aspect of my lack of patience that I’ll accept, and that is my growing intolerance of hatred and judgment and negativity. Life can be tough. But most of us are doing the best we can, and we all need to remember that. When it comes to disability awareness, I’m probably on the “more enlightened” end of the spectrum having worked for two organizations serving people with disabilities and consequently spending a lot of time around people with various conditions. Despite this experience, I cringe when I think about past incidents where I might have thought someone’s slowness was just disregard for other people’s time or assumed that someone’s lack of balance was the result of too many drinks. I know there are times when my husband’s symptoms are probably misinterpreted and that if others knew the true cause they would be more tolerant and considerate as well.
5) It’s anybody’s guess. Parkinson’s is a very individual disease. While there’s a typical progression to the illness, not everyone experiences their symptoms the same way. Some people’s illness progresses very quickly, others more slowly. I have no idea exactly what’s in store for my future–but then again, does anybody? I also have no idea how well I’ll continue to cope with it all. My only hope is that I continue to recognize the blessings in my life and appreciate those who are helping my husband and me along this journey.