My Movement Disorder Specialist told me that I should write out my thoughts, whether good or bad. She told me this, because I suffer from depression. I’ve never suffered from depression nor any kind of mental illness that would require me to have to spend the time that it is taking right now to write out my thoughts. My thoughts would stay just that… thoughts. We came to the conclusion that I suffer from depression after a lengthy talk about my life, my feelings (or lack thereof in my case), and my behavior. Next we talked about why I could be depressed and believe it or not, we didn’t blame Parkinson’s. Shocking I know. I’m extremely sensitive to medications. I take multiple medications from the hodgepodge (it is entirely possible I’m writing all of this just so I could say hodgepodge) of ailments that I suffer from. Those medications, to put it simply, fried my brain. I no longer take those medications even if I benefit from them. The latest was for Parkinson’s, although most of the severe ones (they gave me suicidal thoughts) are to treat my epilepsy. It is an agonist that was highly effective in treating my rigidity, BUT… there is always a but with illness it seems like. The but this time, is why I’m having to write right now… depression. Severe depression. Yikes!
All of this has happened multiple times in the past, and every single time I have gotten better, but it takes time. It seems this latest episode has taken me more time to heal. I will heal. Baby steps. Why did I put down the bike parts and candy to write what you probably already know about me? Great question! I’m not the only one. I’m not the minority. I’m the majority of people suffering from Parkinson’s. While it may not be as severe, or exactly what I’ve experienced, most of us with Parkinson’s live a daily struggle that is messy and downright ugly at times. Medications may affect me to a crazy level, but I’m not the only one. I’m not the minority. I’m one of the majority of people that are affected by not only the disease, but the treatment as well. Many of us have lost relationships, family, jobs, sobriety, and on and on, because of the treatments and Parkinson’s itself. I’ve heard story after story of constant sexual partners, gambling addiction, and the loss of a spouse or home due to the treatment for Parkinson’s. I’ve also heard the shame people feel from it, which is ridiculous. You aren’t what you suffer from. What you suffer from prevents you from being who you are.
Fortunately, things get better. Don’t let that mislead you. Things don’t get perfect or cured, but they get better. Anything is better than over, finished, done. Better leads to the real you showing back up. Like a plant that froze over the winter, but isn’t dead… you will bloom again. Like the cold seasons, Parkinson’s doesn’t go away. The struggle is constant, and it always will be. Remember… no cure. I’ve found that having people around me that not only accept me for who I am at my best, but also at my worst is necessary. Most of us are at our worst more often than we let on. That we can blame on Parkinson’s, and we shouldn’t be ashamed of it. Nobody wants to be at their worst. I surely don’t. Illness is messy though. I do wish that it wasn’t sugar coated or covered up by those that have a bigger voice than I do through my stupid little blog.
Most of us aren’t super heroes. We aren’t Spider Man or an Avenger. We are the Peter Parkers of the world trying to make it through the day. Trying to sleep at night. We don’t have a six pack, run marathons, climb walls, or have a PHD. We are hiding under our blanket, crying, tired, sad, exhausted, slow, walking, wheel chair bound, and are definitely not clean shaven, wearing a dress, and speaking in public in front of tons of people. We can’t help, even if we want to. We are the majority of those with Parkinson’s. I find it doesn’t help to constantly highlight the best of us, when so many of us are fighting to keep from being the worst of us. I find those people heroic. I find them to be the truly inspirational people in our community. Watching videos of a Parky walking down the street, pedaling on a Peloton, or organizations that hold our hands when we’re at rock bottom. Those are the people and groups that truly inspire me and have kept me going. They make it okay to be a fraction of who we were at our best and not feel bad about it.
Most of us aren’t okay and that’s okay. I feel we need to see more of what Parkinson’s really is. The real Parkinson’s and not what organizations want to portray it as in order to raise money or for PR. Parkinson’s isn’t an Abercrombie model and a suit, it’s a dad bod and pajamas. It’s not makeup and a gown, it’s eye boogers and a stain on a t-shirt that you can’t remember where it came from, because your memory is a little foggy. The pretend Parkinson’s makes me feel down on myself. Why can’t I be like them syndrome? I find those with the real Parkinson’s are beautiful and truly us at our best. Even when we’re at our worst. I only hope that the powers that be learn to appreciate the other 98% and decide to… keep it real.