About a week or so ago, when traveling back from Corpus Christi Texas, to pick up our 3 Alpacas, we were listening to a classic rock channel on Sirius XM. The song, Comfortably Numb by Pink Floyd came on, and for whatever reason, these lyrics from the song really hit me:
“Now I’ve got that feeling once again
I can’t explain you would not understand
This is not how I am
I have become comfortably numb”
Then I realized, this is how I have become in regards to me having Parkinson’s. Disease. I have become, in a strange way, comfortably numb with having this disease. Honestly, I wasn’t sure how to feel about that initially.
It hit me after a few days. I am comfortably numb with my Parkinson’s Disease. It is what it is, as they say, and I have become resolved to that I guess. I have become numb to it. Most people can’t even tell I have Parkinson’s Disease, most of the time. Thankfully my DBS System has worked great for me and continues to do so. However, for me it is at the forefront everyday. There are so many non visible things I deal with on a daily basis that no one sees. Yet again, I have become pretty numb to these things. It is just part of my life now. It’s who I am without anyone knowing what I truly deal with on a daily basis. I go back to the lyrics, “I can’t explain you would not understand”. Frankly only those of us living with the disease do understand. When I look “okay” or look like I don’t have Parkinson’s Disease, I often think to myself, “This is not how I am”. I am not okay. I have not been cured. I only live behind this mask of being okay, of looking okay, of being strong and not afraid. I feel as if I have to put on this strong front. That wears on me. I grow tired of being “strong” in the face of Parkinson’s. I grow frustrated educating those who will not take the time to educate themselves about Parkinson’s Disease. Yet, I have to press on and keep pushing, because I feel like, if I don’t, who will? I embrace that, for the most part, but sometimes it wears me out. A lot of times, it wears me out.
However, when the opportunity comes to educate, or speak, or encourage, or advocate for Parkinson’s disease and the various treatments, I will be there. I will talk about my experience, my struggles, my knowledge, my encouragement or whatever else I can regarding this disease. I am okay with being “comfortably numb” to Parkinson’s. I am okay with pressing on and doing what I can each day and making the most of each day, living my best life now.
Parkinson’s disease isn’t just Michael J. Fox or any other number of celebrities who have this damn disease. It could be your neighbor, or grandma or mom or dad or cousin or uncle. Parkinson’s disease is ME! I wish I could scream that from the rooftops. Not for pity or ego or recognition, but just to say that, goddamnit, regular everyday people live and navigate Parkinson’s disease every damn day. We navigate the doctors appointments, the medications, the treatments, the insurance, keeping our jobs, the cost and many other things that no one has a clue about.
Don’t get me wrong, Michael J. Fox is my hero and always will be. He has done more for Parkinson’s research than anyone, including our pathetic government. (If you haven’t watched STILL: A Michael J. Fox Movie, available on Apple TV, please do! It is incredible.) I will always be so grateful for the work his foundation does and continues to do, to find a cure for Parkinson’s Disease.
I truly doubt that a cure will be found in my lifetime. There have been so many promising studies and so called breakthrough’s that look promising only to see them go nowhere. I have gotten to the point that I hesitate to get excited about possible cures. I get more excited about treatments and medical devices and medicine that helps us live with this disease at this point. I really am okay with not seeing a cure in my lifetime, at this point. It doesn’t bother me. I am okay.
“Now I’ve got that feeling once again
I can’t explain you would not understand
This is not how I am
I have become comfortably numb”
As always, Peace and Love
~ Darryn
Punk Rock Parkinson's! 