Today I read what my friend, Jewel Sanchez, had to do to get her home healthcare. She was able to gain enough independence to move out of her mom’s house and move into her own place with her boyfriend. Great, right? Well because her mother no longer will be there to assist her in her daily life, including her bowel care, bathing and dressing, she needs more hours from a caregiver. Medicaid in Florida denied her request. She was in fact being punished for gaining independence and discouraged from being able to live on her own.
The whole point of Medicaid and Medicare paying for things like doctors, medication, home care, therapy, assistive devices like wheelchairs, and more is to support the independence of People Living with Disabilities so they can live as their able-bodied peers do. Despite the great amount of frustration Jewel must have felt she kept persisting for her rights as Person Living with Disabilities and won.
It is already hard for People Living with Disabilities to get what they need. Already persistence is necessary to get what we need to live. It truly is a battle and and without this persistence we are not able get what we need. So it easy to see how the current danger looming over healthcare makes our community feel so very threatened. This is one of the many reasons why it is so important to call you representatives and say NO. We want decent fair healthcare for everyone and it’s your job to make that happen!!!
Today, I am about to embark on a little trip to play music at the ado Ya Hear We ? Fest in Chattanooga. During this trip the band, Kreamy ‘Lectric Santa, will be playing with old friends from the diy music scene. Playing amongst these old friends from when our band first started has got me reflecting on the band and it’s many evolutions and the impact of my injury of my life as a musician.
When I think back when I first had my injury I remembering thinking to myself “Well shit ! What do I do now? I want to keep playing. How the hell can I do this?” It would’ve been nice to be able to reunite with our old friends that we played with, but after 3 years of figuring out how to live life again everyone else’s lives continued to move forward. We were confronted with a tough decision. We knew that we had to still make music but how ? Together Robert and I step by step with the help of friends figured out how to get into a house shows with a flight of stairs or realizing that every venue do not hav accessible bathrooms, stages, or entrances.
As the years went by Robert and I moved around from LA, to the Bay Area, finally ending up in Asheville. Despite the obstacles that lay in our way to continue to play. We were so fortunate to run across some new friends to help support our passion to make music, travel to play it for people, and make some new friends along the way. When I was lying in that hospital bed 18 years ago I never imagined the possibilities that lay ahead for me and I thank everyone who helped me be realize these possibilities. Not sure if everyone realized how much they actually contributed but without them I would not have been able to continue to do what I love. Play music as Person Living with a Disability. Looking forward to see what else lies ahead.
This list is chronological. Robert Price, Rat Bastard, Ed Wilcox, Ricky Pollo, Damian Rojo, Kerri Drootin , Brian Boyce, Craig DeMayo, Ravi Durbeej, Buddha, Steve Funyon, Jon Paul Burns, Janese Weingarten, Ian Billet, Chris Johnson, Morgan Stickrod, Andy Loebs, Crystal Bradley, Chris Phillips, Abbychuela Kathan, and a double shout out to Chris Head who was in the band twice.
There so many things that prevent you from having your independence when your Person Living with a Disability (PLD). I have a T12-L1 spinal injury and because of that I have what is called neuropathy and spasticity. I won’t get into the specifics of what that is exactly because I assume everyone reading this has access to the Internet. What I want to tell you, is that it causes me great amount of pain. For the past 11 years I have been trying to figure out how to make go away or at least make it better. With some support from Medicare and Medicaid I have been performing my very own private science experiments with taking medications,stretching and exercising, and physical therapy, . Out of my own pocket I’ve been trying acupuncture and massage, and meditating, and taking different supplements. None which have led to any real consistent solutions yet . Not only has it robbed me of my independence that I worked so very hard to regain but it prevents me to take part of a community that I want and need to be part of so badly. Below is a piece I wrote for zine that was about people that live with chronic pain. It describes a one day out of my daily battles.
I suffer from chronic pain due to suffering a permanent spinal injury, this is my account of the excruciating pain I continue to endure, and how it affects my ability to take part in community.
Today, as is my daily reality, I awoke to the sheer terror of the agonizing pain that defines, not only the beginning, but the entirety of every day. Thanks, ‘neuropathy’. Though the word may measure only four syllables, the pain is immeasurable no matter how I spell it out. The nerve damage that I live with provides a multiplicity of sensations so neutralizing, I’m paralyzed in providing a concise explanation of exactly how painful it actually is.
In spite of the torment, this particular evening I am slated to perform violin at a local block party. While I feel like saying I can’t play the gig, or won’t do it because the misery is just too much, I also want so very badly to participate in, and be a part of, my scene. I cannot let the torment beat me.
And so I go through a series of emotions, waking up angry that I feel so much pain, feeling like crying, and sometimes actually sobbing as I begin my day thinking, “Why is this happening to me? It’s so unfair!” I have so many things I want to do. I need to do. After spending an hour or so feeling like this, I tell myself, “Ok, Priya, you have to play this block party today. You have to get up!” Then I say to myself, “It’s just pain. You’re not going to die. So, move your body to get the hell out of bed !”
This is how I get out of bed every morning, regardless of what I have to do. Don’t get me wrong, some days are better than others. And on those days, I’m so excited and make a large list of plans of what I’ll do. Then the next day the pain levels are so high. At times, I end up doing nothing, though if there is a way, I force myself to accomplish at least part of something I had planned. It doesn’t only affect my productivity, but I feel it also erodes my importance in the community, with friends, and in other social contexts.
Beyond the pain, my spinal injury also significantly limits me from participating in social activities because I can only travel in especially, tricked-out whips can stow my tilt-machine (i.e. my wheelchair). Currently, I know of only one person that owns a vehicle that can transport me: myself, but in the past, my Sprinter van was not set-up for me to be the conductor. This left me next to nil options, and ultimately, it causes me to feel increasingly isolated. And you know what that meant, more sad face, and… pain face.
I am fortunate to have a partner (my best friend, really) who is absolutely empathetic to what I go through everyday. The greatest hurdle for us was that as he was the breadwinner, I spent most of my time stuck at home.
After my van was modified so I could drive I soon found out that irrespective of whether the vehicle was conducive to me, and my lil tilty tank, visiting friends is always a challenge as most residences aren’t wheelchair accessible, or tricked out in any way, really. Though I often employ unconventional means of entering their homes, that I’ll be honest was hard due to my pain but I quietly lift my body up onto stairs that stood in my way push my wheelchair over doorways that never were intended for a PLD to go through. Despite all these challenges enters those parties or gatherings with ah huge smile on my face and quite often the most happiest person in the room. I did not care because spending time with the people I care about is the supreme payoff that makes is all worth it (even though my wheelchair may have broken one of your vases, or ran over your bad foot). However, I portend not to let the limits of my world restrict my need to be a part of it. I want so badly to have friendships and be a part of the community.
When I’m in pain I don’t really want to do anything, but I do my best to do so in spite of the obstacles. Sometimes it’s frustrating to have to endure so much to do what may be quite easily, and painlessly, executed by people who don’t have a permanent spinal injury. Quite frankly, sometimes it really upsets me. “Why me? Why does it have to be this hard? Do they get it? Don’t they know how hard it is for me to navigate my world? Will anybody go and get me some chicken wings?” All cravings aside, yes, it pisses me off. However, I can tell you that it is tremendously meaningful when someone does acknowledge how much I have to accomplish to do so little. When someone can read, experience and understand the distress my body and psyche tolerate, in many ways, it makes the pain go away.
At this point, it bears mentioning that I was raised by a mother who has suffered from rheumatoid arthritis her whole life, and a pain that is as perpetual as it is debilitating. Her example, in spite of what she continues to withstand, and without complaining, motivates me to maintain a positive attitude. Whenever I consider this fact, I smile, painlessly. If friends and acquaintances don’t understand, I suppose that’s a reality I’ll have to assimilate somehow. The irony is I never really ever understood her world of torment as a child. It was only when I began to suffer from chronic pain myself that I began to recognize her conflict.
100 million Americans suffer from chronic pain. That’s more people that suffer from heart disease, diabetes, or cancer combined. When I consider this number, I think of all the people who suffer from and I am horrified at the thought that so many in this country suffer, I perceive that as a community, we ignore them. From my own personal experience, I can see how isolated and lonely being in pain can make you feel and I have the support of my partner, family, and some friends. I think of all the people who suffer through this alone. How do we as a community fix this? The first step must be to open, and broaden, the discussion about it. Then, if you have a family member or a friend that you know has a condition that can cause them to deal with theses circumstances, reach out! Give them a call or a hug. Don’t try to solve our problems because you can’t. Trust me, when a person suffers from this it’s pretty much all they think about and have most likely tried and done everything you might suggest. It’s really annoying to hear and quite often our response may not be polite, and may not appear in the form of anger at all. Remember, we are in a lot of pain and our patience with suggestions that have already been tried, can make us feel frustrated. All we need from our community is some emotional support. Most of us that suffer go out in the world and put a smile on our face when really we want to be at home curling up into a ball, but we don’t because we want that human connection so badly. So the next time you’re at a party, show, or just hanging out with someone that you know is in pain just say hi, hug them, or even say “Hi I know this must have been so hard for you to do this. I really appreciate you for making that effort. I love you and am so happy you came. Thanks.” That can go a long way.