Patient Worthy is proud to support Parkinson’s Disease Awareness Month, and we are honored to share John’s story. To read John’s story about Grief in Early Diagnosis, click here.
The wind. Why does it always come back around to the damned wind? I found myself at the end of my last post writing of dandelions and the wind carrying seeds of me, simultaneously, back to myself and spreading me further from myself. Now I find myself not just in a patch of floating dandelion seeds, but within a field. A field that seems to be growing and expanding the more I pay attention to it.
Isn’t that the way things happen though? You look up at the night sky and look at a star. That star becomes two stars. Those two stars become the Milky Way, and your view keeps expanding like that until there are millions or billions of stars. Seemingly endless. And when you look at it for a long enough time, you start to realize you are only looking at a small part of a greater whole.
You are missing the stars hiding behind the stars you see.
You are missing the light of stars that have not yet reached your line of sight or the earth even.
That is the way with my thoughts. The more I focus on that one thing, I begin to see other things. The deeper things that need to be excavated from my mind and shown the light of day because those thoughts are the thoughts where the light has not arrived just yet.
I looked closely at my grief. When I looked and thought long enough, I began to see those stars where the light had yet to reach. Then I saw it, as clear as I am seeing you (yes, you can laugh at that.) There was something lurking behind that dim light of grief in the field of my thoughts.
There, just sitting on a rock in the middle of my field, was Fear. I am not sure what he looked like. He probably looks different to everybody, so my description would probably make no sense to anybody else. I have no idea how I knew who it was. I just knew it was Fear sitting on a rock drawing in those seeds of myself and whispering to them before blowing them back my direction.
When those seeds get close enough, I can hear them. They whisper to me things so fantastically terrifying that I wonder how I sleep. For a while, I slept very little and when I did, I was riddled with nightmares and woke every hour on the hour.
Now, I (need help and) take pills to sleep. And when I don’t take medication, those seeds of fear whisper to me directly.
I could time it, but I already know the time. 3:30 am is the time when fear whispers to me the most. That point in time when I am most vulnerable. When my mind should be fast asleep but, instead, it wants to catalogue all of my fears and worries. Those things that have hidden from my narrow view must ooze their way to the forefront of my mind while I sleep.
Don’t get me wrong, fear pervades every part of my life and does not just come in the middle of the night. No, just the worst of the worst comes when I am most vulnerable. I think we all know those fears. I do not want to speak for anybody but myself, but I have a strong hunch that others of us with a new diagnosis and even some who have been diagnosed for years, have some of the same fears. I think that is just the way we are built. When the proverbial shit hits that fan and scatters across our minds our fears are activated. And no, I am not talking of spiders and snakes. There are far worse things out there than those things.
When I think of fear and Parkinson’s so much comes to mind. I am, at times, so damned hypervigilant of my symptoms that I am a walking fear factory, producing fears at a prodigious rate.
Will today become the day that my fears are realized? “No,” I say, as I go to sleep at night. Then in the morning, I ask myself the same question. My story is my story, and I will not tell all of it here. Just know that unchecked fear and grief are a toxic recipe.
So, what are my fears? Good question. It is both hard and easy to answer. Some fears are not that specific. It is more of a general feeling that something is off and imminent. Others are so specific that they feel like that is the reality. That is what is going to happen.
I am afraid that I will die. That much is simple to state because the obvious answer is of course you will, we all die. No one gets out of life alive. Although true, there are specifics that are hard to share and pinpoint. I am afraid that I will not only die but die, as my mother did, locked within her body and her mind completely active. Feeling everything. Seeing everything. Thinking the entire time and not able to express myself, leaving the people I love the most in this world without them knowing my love for them and their meanings in my life. But then again, she died of ALS and Parkinsons is not ALS.
I am also afraid of quite the opposite. That I will die and that I will have no one I care or love with me as I die, because I have misused or harmed them in some way. I fear them saying, “fuck that guy” he deserves what he gets. So, I guess I am afraid of a silent death where I can no longer speak or have no one to speak with.
I fear losing myself. Finally, at this point in life I feel like I am starting to hit my stride and become the person I always thought I was. I fear that dementia will take that all away and I will become just a shell of myself. I do worry about that and that is my most recent fear. That is the one that worms its way into my thoughts at 3:30 am when I do not take my sleeping medication. In fact, that particular fear will wake me every hour on the hour without medication.
I am not going to review all my fears. That would be senseless and fucking long. Even I would get tired of reading that, whiney bunch of nonsense.
When looking at my fears, there is one thing I know for certain. I know that fear is not rational. It is the most irrational act our mind performs (well, fear of spiders and snakes will actually keep you alive at times,) but that does not seem to matter. I feel them as true. I feel them as fact. Even if it is pure fiction created by my brain.
I know that I am loved by quite a few people. I know that I love them and try to convey that when I get the chance. I know that, yes at times, I have been a callous asshole to friends, but my truest friends would never abandon me in my time of need. My family (yes, I include you Roches in that as well) would never leave me alone to die a miserable death alone and suffering. I know my wife will not go out looking for a younger healthier man that she does not have to take care of. I can say this confidentiality because I am a bit of a looker and that she shows me every day her love and commitment to our marriage.
Like I said, this shit ain’t rational. It takes what you know as truth and twists it in a way that is heart rending. I twist it in a way that breaks apart pieces of your soul that are scattered like dandelion seeds in the wind.
I guess that is why it always comes back to the damned wind. Grief and fear are just ways that parts of you are separated from you and scattered.
Somewhere along the way, we have to pull those seeds back to us. Somewhere along the way we have to reform ourselves after we have been diagnosed. Right? It is a new reality that we come to grips with, thus reforming ourselves into something better. At least that is my goal.
What choice is there, really? I guess I could just isolate myself and never speak to anyone ever again. That is an option. I did not say a good option. We could always let out grief and fear carry us so far from ourselves that we no longer even recognize the field where the seeds of who we are exist. Again, it’s an option. Not a particularly good one. Not one that I want.
I refuse to die a bitter old man who is angry at and burdened with Parkinson’s. I will say it again. I refuse to die a bitter old man. When it is my turn, I will go with a smile, knowing I was loved, and I loved. I was a pretty good dad, and a pretty good uncle to my nieces and nephews. I was a pretty good husband.
My point is that I am not what my fears tell me I will be. It will not happen the way those fears whisper to me. It will happen exactly the way it is supposed to happen, and I will be okay with that. I will still fear what may come, but I will no longer cower like a child afraid of shadows on the wall. I know I have little control over this disease. But I have absolute control in the way I handle the grief and fear. I have absolute control over how I handle the disease.
I think that the antidote to fear is direct confrontation. What is the reality of that fear? What is the likelihood of that actually happening? That is the question I must ask myself at 3:30 am or any time of day. I ask myself this all the time. This is now what I ask myself in the morning when I get out of bed.
I am looking at a field. I recognize that there are things I have yet to discover about what I see. But there is one thing I notice after sitting with this for so long, those pieces of me are starting to move back towards me more than away from me. Fear is still sitting on that rock whispering to the seeds of me that come close to him. But I know that there is no power there. His whispered words are empty and meaningless. Although they affect me still and I suspect always will. I know this today and yet I still fear. There is a saying from a group I belong to. It is, “Progress not perfection.”
I ain’t perfect but I think I have taken some small steps towards progress.
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
