EverydayParkinsons

Again, I find myself in that field of dandelions. My old friend Fear still sits on his rock across the way. Grief winds its way through the branches of an old tree, going round and round, chasing its own tail. But the wind—the wind has disappeared. The floating dandelion seeds that are pieces of me fall to the ground. Not to be pulled back in or pushed away, just to lie there.

Depression—ugh. Now there’s a topic that will set toes-a-tappin’ and delight all, even helping small children sleep at night

I’m not sure I want to write about this topic, but I kind of think I need to, so the wind will return and finish bringing those seeds back home to me , so fuck it. Let’s quit beating around the bush and just dive right in.  Even though I would rather just hide from the world.

That’s the way of depression, right? A need to hide from the light of others because you feel the light as an affront to all that’s within you. It’s a smiling mask from Greek theater that covers the mask of tragedy, which covers something that resembles the truth. If I find out what’s beneath that mask and resembles the truth, I’ll let you know, but for now, I have no freaking idea. Perhaps, though, what hides behind that last mask is the real you—the one that’s happy and sad, courageous and a frightened little boy or girl. Again, I’ll let you know for sure if I find out.

Now, calm down. I’m not seriously depressed today. I’m not writing this as a cry for help or as an attempt to get attention. I’m writing about this because those masks get heavy and hot when the wind stops blowing, and frankly, I’m tired of hiding behind them. I’m tired of hiding from the world.

This is my truth, and my truth is that there are times I’ve had no more will to exist than a vampire trying to kick the blood habit.

For many years, I thought I’d finally gotten past the depression. If you want to know the truth, I had. Life was good. I enrolled myself back in college. I became president of the honor society. I had a good measure of respect from classmates and staff. I met a wonderful woman and married her. I got a Bachelor’s degree and then moved on to a Master’s. Yes, life was good. I could have sworn I had this thing licked. There were a few episodes that took me down for a day or so, but nothing threw my life—and my wife’s life—into turmoil (well, outside of alcoholism, but that’s a topic for another day).

Then Parkinson’s came in like an unwanted uncle whose sole goal in life is to pick on you and bully you. (Shut up; I’m a good uncle.) Seriously, being diagnosed with Parkinson’s  made me aware of how little I understood my depression and how little control I had over it.

I’ll probably butcher this description, so feel free to keep your scientific comments to yourself. Parkinson’s is a neurological disease that affects the production of dopamine in the substantia nigra (yeah, buried way in there). Now, if we don’t have dopamine, what happens? Right—your hands start to shake, you start to lose balance. All sorts of things that rely on dopamine start to go wrong. Basically, things slow down or even stop.

I know. I know. That’s an extremely light description of Parkinson’s. There’s a lot more in play. Hell, I’m not sure I understand most of what happens with this disease or even how to describe it. What I know is from personal experience or from reading others’ experiences. Reading in-depth scientific articles about Parkinson’s effects leaves me with my head resting on a pillow and a nice stream of drool running down my chin. For the purposes of this piece, though, I think that will suffice. If it doesn’t, I’m sure someone will let me know.

Dopamine affects mood. So does serotonin. I like to think of serotonin and dopamine as a happy little gnome couple that live and farm the dandelions of my brain. When they work together, the garden is happy and thriving. If either one goes away or gets sick, what’s left is an imbalance. When dopamine goes away, it leaves poor old serotonin alone to handle everything it’s not equipped to handle. Thus, depression is born in the now lopsided garden of my brain. The same thing happens when serotonin goes away.

At least, that’s my take on it. But since this is about Parkinson’s and depression, let’s leave good old serotonin to take care of herself for a while and focus on dopamine and Parkinson’s. (I like it overly simplistic, so just leave it alone—even if it’s wrong. It feels right to me and makes me happy imagining little gnomes gardening in my brain.)

It’s possible most of you have read about my fear and my grief from when I was first diagnosed. However, I put aside writing about my depression until I had at least some buffer from it. Apparently, I do right now.

When I was diagnosed, I was convinced I was terminal. Maybe weeks to live. Maybe.

I knew for certain that I had the fastest-progressing Parkinson’s ever seen and that I’d soon be unable to walk, talk, or even remember who I am. I knew that Julie would be changing my diapers any day now and I certainly wasn’t ready for that.

Let me tell you that a lack of dopamine and thoughts like those are a fairly toxic mix. Also let me tell you that is only part of the toxic recently diagnosed cocktail.

I obsessed over reading every damn thing I could. I watched these heart-wrenching videos of people with advanced Parkinson’s. I watched doctors in their serious voices explain the progression of Parkinson’s, and I became more convinced that death would be tapping me on my shoulder any day.

Death was always there, standing just outside my vision. In his deep, deathly voice, he’d occasionally ask, “IT IS ALMOST TIME” and “IS THERE ANY OF THAT CURRY LEFT?” (Bonus points for identifying the quotes)

Slowly, this was all I could think about Although, I’m hyper-aware of my body today, back then, I was feeling the future as the present. I took a possible future and lived it as if it were the truth—as if it were currently happening. I went from being diagnosed to stage 5 Parkinson’s in just days. As Redd Foxx used to say, “Elizabeth, they’re coming to get me, Elizabeth!” And I started to withdraw inside my head. You all know the inside of my head; I’ve described it many, many times as a field of dandelions with a rock and a tree. I can look at it now and know that when the wind quits blowing and those dandelion seeds fall to the ground, I’m in seriously bad territory—or at the very least, on the edge of it. The wind had stopped blowing.

This last bout of depression was different from any I’d ever experienced. Slowly, over a period of months, I crept into that windless plain. August, September, October, November, December. All the while, I was withdrawing deeper into myself. But remember, I’m a jester and can fool just about anybody.

I made it through Christmas—barely. I’m sure that Iris could see it. I knew Julie could see it, but neither knew how bad it was getting. A joke here, a smile there goes a long way in covering up what’s really going on. Acting “as if,” while the inside of my mind is a whirl of thoughts better left unspoken. Meanwhile, a fishbowl grew around my thoughts and emotions, letting nothing positive in and nothing negative out.

I did try going to a therapist, but when I met her and discussed my fears, grief, and depression about Parkinson’s, she proceeded to tell me how she thought she had Parkinson’s and described her ill health. Honestly, I’m not sure if she was counseling me or I was counseling her, but after a few sessions of that, I’d had enough and stopped going.

I made it through Christmas. I made it through New Year’s. All the while, holding it all in. I was fine. Why wouldn’t I be okay? It’s not like I have any stress or anything. I held it together at work—possibly.

Then it happened.

Sorry, folks—this is going to be a little too honest. But please, when you see me, don’t avoid asking me anything. Dancing around heavy topics makes things awkward. Just ask! I’m an open book with very heavy pages to turn, sometimes. I’d rather answer questions than know people are talking about me. Okay, back to the topic at hand. What happened?

It was the point when I could no longer fake it. I was fully trapped in the fishbowl of my brain, with thoughts that are still better left unspoken. I shut down. I didn’t talk to Julie. I didn’t talk to anyone. I slept. A lot. But it wasn’t the warm, soft bed in a dark room I didn’t want to leave. It was a bed of terror I couldn’t escape from. I couldn’t tell anyone about itf. There were no words. Just thoughts swirling, repeating those unspoken things. It was just me and my brain. A hurricane of negativity. Whether my thoughts were true or not did not matter. What was true was that I needed help.

Help is hard to ask for, but I needed it. I think my lucky stars today for my wife, who helped me see the need. This was not about something I wanted. It was something I needed. There is a big difference between want and need and I am glad I know this today, because I can honestly say it was one of the best decisions I’ve ever made. Yup, let’s go with that.

I spent six days in a hospital talking to doctors, taking medication, and getting to know the other patients. They were nice folks who had problems and needed help—just like me. This wasn’t a Ken Kesey experience starring Jack Nicholson. These were just folks.

Slowly, I managed to break through the fishbowl of trapped thoughts. The dark thoughts began to recede and calm. They became just whispers that I can still hear today. They’re always there, reminding me of my failures or how I might die a horrible death. Though they’re not loud today, but they’re there. They won’t go away. No, I’m not schizophrenic. I’m just a guy describing this the best he knows how.

We all have that little voice in our heads that likes to tell us how terrible we are or how screwed up we are—at least I think so. It’s that inner critic, the one thing in your whole life that can say anything to you, no matter how awful, and you just take it. Sometimes you take it to heart. Other times, you can see through the bullshit. But when the cocktail of chemicals that keep our brains functioning gets imbalanced, that voice, that inner critic, seems to really know what it’s talking about.

I don’t think I’m unusual in this. There are times for all of us when things fall apart, and you need to cry out to the wind, “I need help!”

In my case, it was the diagnosis of a neurodegenerative brain disorder that took me to this point.

I’m not ashamed. You shouldn’t be ashamed for me. I’m learning to live and coexist with this thing. It’s a struggle, but every day it gets a bit easier—and harder at the same time.

For me, shame is worthless. Shame serves no purpose other than to create a barrier between you and real help.

If you’re struggling with a Parkinson’s diagnosis, please get a therapist to help you come to terms with today, tomorrow, and the day after that. Talk to your MDS about your depression and what to do about it. They’ll likely refer you to a psychiatrist, which is one of those other places no one wants to be. For me, it was worth it.

Today, the wind carries all those parts of me that I thought I’d lost back to me. I’m slowly becoming whole again. Someone once said that we have to lose ourselves to find ourselves. I’ve been lost a few times in my life, but I’ve never been more myself than I am at this moment.

When I sit and look out over the field of my mind, I can see small shoots of wildflowers sprouting among the dandelions. Fear still sits upon his rock, juggling his dark futures. Grief and Fear still try to send those seeds of me away.

This is not the life I planned. This is not future I could imagine. But there is this thread of gratitude that has helped me see something bigger. Something I always imagined – a connection to others. A connection and deeper understanding to myself.