Patient Worthy is proud to support Parkinson’s Disease Awareness Month, and we are honored to share John’s story.
It was something my therapist told me that started this whole thing. She said, “John, you are grieving.” Point blank, just like that. It really did not matter that I was sobbing like a baby and telling her of all my Parkinson’s woes. The nerve of her! How dare she tell me I am grieving.
I sat with it though. I sat and thought about the ‘thought worm’ she had inserted into my brain. “I’m grieving? How ridiculous.” That was where my thinking on this began. Seriously, thinking about grief is not in the top 200 things I think about often. In fact, I do not know when I ever thought about grief. I certainly never considered that I would be grieving something as silly as a Parkinson’s diagnosis.
Grief meant loss. I hadn’t lost anything, except a little dignity when my hand tremored in public. It was certainly embarrassing but not grief worthy. I was not sure what I had lost. I was not diagnosed with a terminal disease that will kill me in a week or even a month. I still had my family and friends.
It was one day, a Sunday, I think. I was drinking my morning coffee on the porch and having my morning cigarette (I know. I am going to quit.) It was one of those beautiful mornings where all you need is a light jacket. The wind blew lightly through the trees that separated my property from the neighbors. The birds were awake and starting to sing. My dogs were rough housing in the grass. I do not know what the smell was, but it was some kind of plant that was sour and kind of musky. I was just watching and listening to all of this. That is when it hit me. “Wow, I am never going to be able to play disc golf again or go skydiving one last time.”
That was the moment I knew she was right. I was full of grief over my Parkinson’s diagnosis. It brimmed over like an over full cup. I started thinking about all of the other things I would never get to do. I grieved for a future that may or may not have ever happened. I grieved for the loss of possibility and potential. In fact, I am still grieving those things. I even grieve things that I know I never wanted to do.
I was grieving this imagined future where I was going to do all the things when I got old. I was going to travel the world with Julie, rescue damsels in distress, slay dragons, become a hero and let the world bask in my magnificence. I grieved for an imagined future where I could sit in my front yard and yell at the kids to stay off my grass – all while cackling like a mad man.
It felt as though the diagnosis stripped all possibilities and potential from me. I felt like the little kid that had his new Chuck Taylors stolen, tied together and thrown on the electrical wire, left dangling there as a constant reminder. I was left to walk home barefoot into a house of angry parents. In other words, I could do nothing any longer other than just wither away and die. That was all that was left for me. Just this bleak future.
I sat on the porch a very long time that morning and rivers of grief ran from my eyes and plunged into pools of sadness I did not know existed. Not only was I mourning a future that was possibly real, but I also mourning the loss of my childhood. I was mourning the loss of my late adulthood. I mourned for my entrance into old age. I mourned for all those things I never did. The girls I didn’t kiss and wanted to. I mourned the decisions I made in life that I was sure that led me to Parkinson’s. I mourned all the bad decisions I made throughout my life. I mourned the good decisions. I just mourned everything, and the pool of grief deepened.
I know now what I had lost at that moment. I lost myself. My past, present, and future disappeared in a fog of despair so thick that I could not even feel my way out.
That is how I discovered my grief.
I am still grieving. I am moving through the steps of grief. Somedays I am in full blown acceptance mode and my steps are light as a feather and my coffee-stained teeth are smiling for all the world to see. Other days, I am seething at the world for the injustice of giving me this fucking disease. Sometimes, I even question whether it is really true. Doctors are always wrong. Right? Inevitably, I will stumble, or my hands will shake to give me a quick reminder that Jimmy is alive and kicking.
I ping pong around those stages of grief, well, like a ping pong ball trapped in a pinball machine. Hell, sometimes, I even go through all the stages in just a few minutes. There ain’t no consistency or perfection here, folks.
Notice though that I did not bring up depression. At some point I will write about my depression, but not now and probably not tomorrow either.
But let’s move on to a cheerier subject. The opposite side of grief.
I really have no idea what the opposite of grief is. The thesaurus says it is happiness, elation, joy. I do not agree. Grief is too stoic for those to be the opposite. Maybe it is mindfulness (oh yeah, one of those hippy dippy folks.). Maybe mindfulness is the opposite of grief where both sides are in opposition, and both are true. Where grief mourns the imagined future and the fantastical past, it is possible that mindfulness grounds us back into the present where we can see the past and future for what it is – imaginings shrouded in the fog of sadness. Maybe mindfulness can bring us back into the present and allow the sun to burn off the fog and reveal the love around us, showing us that when the fog clears, we are not alone at all and are surrounded by hosts of loved ones.
In all honesty, I know nothing about any of this stuff and I am just a guy feeling his way through the fog of grief. I get directional input from my gorgeous wife, who shouts into the darkness so I can find my way home. I get input from my therapist, who tells me where to put my feet, so I don’t trip over the rocks in the dark. I get input from my daughter, who reaches out and grabs my hand.
In the end though, I am the one who has to take the steps to get out of the fog. However, I cannot do it alone, but it is for me to figure it out and come to terms with the diagnosis for myself.
I wish coming to terms with this was as easy as getting exercise and eating well. I wish it were that easy, so easy that you just do those things, and you will come to terms with it all and everything will be rainbow farting unicorns and puppies. Do those things and you will be surrounded by a life filled with bliss and happiness. I know nobody says that. I won’t claim they do. I just wish it were easier.
I still feel the loss of those things I might never have done. I still feel the loss of my adulthood and feel like an old man at 58 (almost 59. Funny I keep thinking I am 59 until my wife reminds me.) I still grieve and I guess that is okay. It seems natural. Maybe it makes no damn sense to you or anybody else. It makes sense to me.
Bits of myself are slowly drifting back to me like dandelions seed drifting in the wind on a spring afternoon. The wind shifts and sends parts of me away only to shift back once again to bring them home. It is a slow process, one where the wind gathers enough of me and pulls me together where I begin to drive my roots deep into the earth. Maybe that is what Parkinson’s is for me? Maybe Parkinson’s is the wind that brings all the seeds of me home to myself and eventually becomes the root I have always longed for.
John Gorman is a writer, husband, father, and favorite uncle, who somehow knows way too much about Parkinson’s disease—and won’t stop talking about it. When he’s not writing about misbehaving brain cells, he’s usually wandering around the house looking for his keys and cellphone. John believes that humor, honesty, and knowledge make the best medicine—though, let’s be real, actual medicine helps too. He also wants you to know that he is not a doctor, just a somewhat normal guy trying to help others feel a little less alone after diagnosis.
EverydayParkinsons – Living, loving, and laughing Parkinsons
