Photo by Donald Giannatti on Unsplash
I have Parkinson’s, a terrible disease. Pardon my venting on the page, but it's important for people to know the havoc this particular disease wreaks on the afflicted. My legs—from my toes to my knees—feel frozen with rigidity, numb and painful. It is becoming difficult to walk. I’m afraid I will end up in a wheelchair or worse, bedridden. Stiffness is a standard side dish when Parkinson's is on.the menu. I don't swallow the way I used to. This is also related to Parkinson's. I may end up unable to swallow—ever. Which is to say that I'm pre-grieving being unable to swallow donuts. I’m constipated, another a delightful Parkinson's symptom. Did I mention that I am also burdened with acid reflux and nausea? I have insomnia every damn night, waking up at two a.m. if I am lucky. It's a surprise to no one when I nod off intermittently throughout the day without warning and sometimes mid-sentence! I have no social life. I have no earthly idea how I'm going to feel from one day, one hour, one moment to the next. Mostly, I'm preternaturally weary. My life in the twilight zone is also a direct result of Parkinson’s. I’m in pain most of the time and sick of going to specialists who most definitely won't heed my requests for something stronger for said pain. They are protecting me from myself, of course, but when I'm deep in the pain cycle, I want answers: When will the time come when my pain and sleep problems will be acknowledged, addressed, ameliorated? How much more do I have to suffer? More specifically, how much more do I have to suffer in pain and sleeplessness? When is enough, enough? My father also had Parkinson’s, so I likely have him to thank for my winning chromosomal lottery ticket. In the end, he chose to have a feeding tube. That would not, will not, be my choice. On a brighter note, my handwriting has improved considerably. I CAN STILL WRITE. During my gratitude meditations (which admittedly have become shorter of late), I try to remember this mitzvah—I can still share my sentiments on the page. I also take solace in knowing that I am surrounded by people who love me. I will not die alone and for that, I am deeply grateful. I will not be traversing this path, forging this journey, unattended. I am a lucky person with a very Lucky dog who gives me comfort on my unlucky days. If there is a God, Lucky was a gift, as was Whender, Dana, Ann and all the people who assist me. To them, I have a message: I could not endure this journey without you. I want you to know that I love you. Thank you. To Parkinson's, I have a different dispatch: F' you. You haven't stopped me yet and despite your debilitating mix of symptoms, I plan to persist for quite some time. I've got tools and people and I've endured worse. I'm a strong woman with a potato* of my choosing, thank you very much. * ... which here is intended as a metaphor for life—namely mine.
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January 2025
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