Coping Fret

“So, you’re coping,” she ‘asked’ about this major swerve in my life’s road.  “Yes, yes, I am,” I said, as we’re only acquaintances and our time together was short. Still, it took a lot of effort to resist the urge to retort, “No, not really. I could fall apart at any moment. Arm yourself and be afraid – I may not cope… right at you.” I know that she meant well – trying to take my Parkinson’s temperature without delving too deeply.  But good intentions can have awkward outcomes if we dig below the surface to the muddle of fear, curiosity and denial that leads to platitudes disguised as concern.  Coping queries are better than those who are so afraid to ask how I’m doing that they make declarative statements dressed up as thoughtful compassion: “You’re taking care of yourself, right? Right?”  “No,” I fantasize about answering, long after the actual encounter, naturally, “I’m actually trying to hasten my decline by pulling bon-bon-fueled all-nighters and living like a sloth.  But thanks for asking.”

What if I were to admit that I don’t always cope? That sometimes, in the middle of the night, when the world is quiet and the air still when my fears pop up like ghosts of what might be, well…  I don’t cope well at all. Lewy Body Dementia (a type of mental impairment associated with PD – the one that apparently drove Robin Williams to suicide) and other manifestations of cognitive impairment frighten me.  Might there be a time when it won’t be a joke that I’ve lost my mind?  Or, might my disease progress like Dr. Thomas Graboys’ did – quickly forcing a brilliant doctor to give up his cardiology practice before dying at 70. In the quiet of these nights I will my left hand still– and lie on it when it can’t comply. 

Then, there are those who ask if they can help me during my ‘rough patch’. I go for beautiful walks or lovely meals with these well-meaning people and explain my journey.  In September, I saw my first neurologist.  “I want you to get a closed MRI to make sure that your brain is okay,” the doctor said after asking me to follow a pencil across a horizontal plane, walk down a hall and jump through several other clinical diagnostic hoops.  Indirectly and more tactfully than I retell it, she said that there were three options available to explain my tremoring left hand: brain tumor; multiple sclerosis; or Parkinson’s disease. A month later, the MRI revealed my brain was (relatively) okay.  A month after that I walked down another hallway in front of another neurologist who asked me to perform another, more elaborate set of diagnostic tasks before making it official – Door Number Three was the winner. It’s Parkinson’s disease (What? No parting gifts?)  And with my new perspective, being merely a Parkie is a relative relief. We  commiserate by sighing, our expelled breaths mixed with relief and resignation – and the realization that this is not a patch, it’s my life.

I will tremor (and hopefully only do that) until my last breath.  But if I end up with dyskinesia or other impaired movements, I know that I’ll be able to adjust, as I’ve never been particularly coordinated or especially physical.  If a wheelchair is to be my fate, so be it – as long as I have my mind.  Amazing what a little perspective can make palatable.

So, yes, I’m coping with this “rough patch”— which I hope will continue for decades.  After all, if life were all smooth sailing, it’d be pretty dull.

3 thoughts on “Coping Fret

  1. Suzy Houghton says:

    People are such dumb ass’s when they don’t know what to say, they should stay quiet. You are such an amazing writer, mother, wife and friend that I am honored to be. We will get through this together ❤️❤️❤️🌹

  2. Jocelyn Cortese says:

    I so appreciate this post. Your honest, raw words are so educating for all of us as we seek to understand and be present for you and others that we love. What to say, how to help…it’s not always clear. Carol Lanning told me a long time ago that sometimes the best thing you can do is just be present with someone on their journey because words fail. I’m deeply grateful you are able to put words to your experience. I know you occasionally think your gift is lacking, but I am here to say you are wrong. Keep writing, Amy. We all want to read what you write. With love, Jocelyn

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