Life has been a rocky road (not the ice cream) for me for some time now and it is only going to get more difficult… no this isn’t a post whining or saying oh woe is me, to the contrary. I don’t wallow, seek pity, and especially not self-pity, in fact, I have done more disabled than most normally abled individuals have so that just isn’t the case here. Instead, I am writing this little tidbit, this nugget, to let friends, family, and fans have a little more insight into my world than they might already have.
I am legally blind with a degenerative condition and abnormal astigmatism which will inevitably claim what little sight I have. I am profoundly hearing impaired with about 70% hearing loss uniformly in both of my ears. I also have a rare disease at only 44 years old as I write this, called DISH diffuse idiopathic skeletal hyperostosis, which will eventually claim my ability to walk (I already use a rollator to walk) and has made my neck and spine fragile like glass.
None of that even touches on my type 2 diabetes, high cholesterol, hypertension, or the numerous TBI’s (Traumatic brain injuries) I’ve had over the years. Yes, I have accomplished more than most twice my age, but I’ve also lived a pretty rough life (Hence the brain injuries). Now onto the meat and potatoes, or if you’re a vegan/vegetarian, just the potatoes…
Disabilities to me are setbacks, they are permanent, however, for me, I find a creative workaround to do what I want to do and accomplish what I want to do. Changes in life, and there have been many (especially recently with DISH) means fine-tuning life and creating a new normal, whereas I can still live and generally speaking, “be me.” There have been many things I have faced head-on in my past, some I’m infinitely proud of, and some I am not so proud of, but all made me who I am today. Those struggles helped me to be myself, and to thrive in adversity, overcoming nearly anything, and coming out of it smelling like roses (or at least a guy).
I lost my ability to do martial arts, something I dreamt of since I was five, and began practicing and learning when I was ten, DISH took that away from me most recently. I had a bout of sadness and anger, and then I knew I needed to fill that void that was left behind with something, and thus I turned to learning more instruments and doing music more. Music is something I have also always loved and can safely say fills that void nicely and breaks me from any semblance of sadness I might feel.
I cannot easily go upstairs, stand for long periods or walk very far and must use my rollator, so my wife and I moved our bedroom to the first floor of our house and I have a commode. Until I actually need a wheelchair, living entirely on the first floor until I need a shower will suffice, it’s becoming the new normal in our lives. Being disabled, even as bad as I am, doesn’t mean an end to life, it just means change, adjustment, a new outlook, and some creative workarounds to live life as fully as possible.
Okay… it also means accepting some limitations, such as now I know I will never be the All-Valley under eighteen karate championship and that I’ll never dance the Bolshoi (Damn you Barishnakov!), but there’s still a ton of life left in me… and I’m gonna ride it until the wheels fall off!
Best of all, I love seeing people’s faces when they see all of the things a legally blind, hard-of-hearing, half-crippled guy can still do and do fairly well might I add. There are so many guitars, basses, and other assorted instruments I want and want to learn (Stylophone FTW), so much art I want to paint, music I want to create, poems I want to compose, and writings I want to write. A truly motivational quote I once heard came from the movie Rocky Balboa;
…words to live by… and I do!
I wish I had more money, sure, saving up for months on end for an instrument or upgrade for one does suck, but it makes the build-up more exhilarating and actually getting it as sweet as a gift from a friend. I wish I could hire a cleaning service a few times a month to help my wife and kids around the house, sure there are a lot of ways more money would make life better, but is my life bad? Absolutely not!
I have friends and family who I know love and support me, I have a roof over my head, I have food, I have clothes on my back, I’m a part of an amazing synagogue and community, and my bills are paid on time. Crippled and handicapped or not, I live a better life than many people around the world do, and for that, I cannot express the depth of my gratitude.