Pain. Chronic pain. It’s no joke. It’s debilitating. It can lead to death. It can be physically and psychologically crushing to your soul. Living with physical paralysis, for me, pales in comparison to pain. If asked that “What If” question whether I would prefer to live in chronic pain or be paralyzed, at this moment as I write this article – I choose paralysis. This is a pretty powerful statement if you think about it. I am essentially choosing to practically go broke, have people’s hands in my body all day long, have someone dress me, use catheters and suppositories, etc. Think about what I am saying.
This is how debilitating my chronic pain is. For anyone who lives in chronic pain, your life has been undoubtedly changed forever. I know mine has.
When I was living in the ICU after breaking my neck in 2010, I was one of the unlucky ones who also simultaneously suffered a very deep pressure sore on my behind, pulmonary embolisms, and died a few times. I thought “this was the worst of it” to myself. Wow, was I in for a rude awakening 3 weeks after my accident!
You work so hard for so long on a specific project only to have it practically blow up in your face. I’ve been working with Blue Cross and Blue Shield policy directors for the last six months and I recently received beautiful “BS” letter as they say stating that my efforts to have adaptive exercise equipment reviewed under medical necessity was not going to be an option.
I have tried to play nice, it did not work, and that’s okay. I’ve simultaneously been working on legislation on multiple fronts to be introduced over the next few months and few years from different angles. I always try the path of least resistance first, this does not always work out, but it does not deter me either.
If you’ve been following my health insurance battles you will want to take a close read of this one because my entire disability advocacy career started out with health insurance equity. It is naturally a passion project near and dear to my heart and one which I will continue to fight for on so many fronts. What will ultimately end up happening is having to create a coalition of seriously smart lawyers, doctors, advocates, etc. in years to come. This mission is going to be measured in many years, not months.
Fortunately, my spinal cord injury has taught me the definition of extreme patience. For this I am thankful!
I may Sisyphus rolling the boulder up the mountain only for it to come crashing down on me. However, I will start rolling the boulder back up the mountain in real time! I will break the cycle eventually in the name of HEALTH EQUITY, and not just Health Equality.
Very cool podcast I was part of that offers a very unique perspective on how many of us with disabilities approach the conversations with our caregivers when we want to be intimate with a new person in our life, and how we handle those conversations.
Probably not something you think much about, but it’s an important topic that constantly gets pushed aside and is left unrecognized!
I personally have had a lot of really interesting experiences and conversations when I was engaged in the dating part of my life prior to getting married. Some wild conversations for sure 😉
The absurdity of spinal cord injury with respect to the fact that being paralyzed is oftentimes the least of your challenges as compared to the endless secondary medical complications, caregiving challenges, financial burdens, to name a few, can turn a perfectly sane individual into one who is tinkering on the edge of insanity. The question remains is how do so many of us with these life altering changes cope with, what can only be described at times, as a revolving circus carnival of animals?
We each develop and build upon our own coping mechanisms as the year’s progress and as we become a little bit older and wiser in spinal cord injury years. For me, dark humor is, bar none, my number one savior to get me through most days.
It’s hard to believe that it’s only the middle of February and with the state of affairs in the world today I try very hard to focus my energy on affecting change in whatever capacity I am able to in order to bring a little bit of light into this world. I’ve said this time and time again, but kindness, positivity, and perseverance go a long way in my book.
I would be a hypocrite if I didn’t attempt to put actions to my words. So, I have made quick work of focusing on two new Blue Cross and Blue Shield cases, which I believe are so important for so many who are disabled.
My overarching mission in these constant insurance battles is not to just simply win “stuff” from insurance companies, but rather to strategically attain medically necessary durable medical equipment that not only improves the quality of so many people’s lives, including my own, but our independence and dignity.
The challenge lies in that many of our health insurance policies are simply outdated and many of them do not factor in the special needs for those who are severely disabled. With that said, it is my goal to create a host of documents with letters of medical necessity written, so patients can just hand them to their doctors and fill in the necessary personal information.
I’m working to change the system from the inside out, but in the meantime many of us really need to learn how to operate and navigate within the broken system we are currently faced with. It’s not easy and most people don’t have the time, energy, or know-how to get things accomplished. Unfortunately, many people just take their insurance policy at its word and don’t test the system.
Change does not come from blind compliance!
We have to push the boundaries because we are, the disabled community, a very much forgotten about segment of the population in the eyes of health insurance policies.