It’s not a very well-kept secret that the insurance industry can be unjust in addressing the needs of many of us with disabilities—especially when it comes to attaining the medically necessary equipment and services we need to improve our quality of life and independence. While countless folks in the disability community are frivolously working to change the system, the reality is that we need to learn to advocate for ourselves within the current broken system. It’s not impossible. But it does require a bit of ingenuity, persistence, and sheer determination.
I was injured in a shallow water diving accident in 2010 leaving me a C6 quadriplegic. I was left to fend for myself with respect to fighting for the equipment I needed for my daily survival in my home. While I have an army of medical professionals in my Rolodex, many of them are overwhelmed by the number of requests to write medical necessity letters to insurance companies. As a result, I discovered early that I was going to have to learn how to become my own self-advocate.
As a C6 quadriplegic injured in a shallow water diving accident in 2010 leaving me paralyzed from the chest down and a full-time wheelchair user, I am no stranger to being called an inspiration on a regular basis as so many others with disabilities undoubtedly find themselves in similar situations.
The challenge for many people with disabilities being called an inspiration lies in the perception beneath the word “inspiration.” Are we being called an inspiration simply because we are living a life with a disability and able-bodied people find it inspirational that we are surviving a life simply because of our disability? Or, are they calling us an inspiration because of our accomplishments and contributions to society just as any other member of the community?
I am often askedwhere I get my strength & determination to keep going when it’s one thing after another?
In short, I have mentally conditioned myself over 11 years to turn my daily pain struggles into purpose with the sole ambition of helping others realize that life is not over even when the seemingly darkest moment is upon you. I derive my strength from others positivity, family support, I’m sure a little bit of genetic grit somewhere thrown in there, and the constant urge to push through what feels like insurmountable challenges at times.
Quite frankly, it’s exhausting. It takes up nearly 1/3 of my day to just power through, but I do it. As I write this article I woke up sick as a dog and spent nearly an hour staring at the screen. I don’t have the luxury of lying in bed all day to get better because I would get pressure sores from staying in bed too long. So, I was forced to get up in my chair. Sure, I could have laid back all day and done absolutely nothing, but what I find gets me through moments where I just want to crawl on the couch and wait for tomorrow to come, is the fact that I know I may be helping others appreciate the fact that they are not alone. I do appreciate when I need to take a moment and scale back my day, but sheer determination keeps me going to make a difference in the world.
I don’t want to wake up at the end of my life and realize that I have just worked my ass off, but I want to make an impact in people’s lives in some way, shape or form. My husband and I are not going to have children, so I feel this incessant drive to keep going. I am fortunate because I have the innate ability to move from project to project without losing focus. I retain information quite well, learn quickly, and “just do it” as Nike would say. Please don’t misunderstand, this is a daily battle I take on in every moment because chronic pain can bring an ordinary person to their knees, and disrupt their entire lives. I appreciate we all handle pain differently.
If you’ve ever applied to college you’ll likely remember waiting anxiously by the mailbox for that large envelope, which was filled with hopes and dreams of your acceptance letter into the school of your choice. The small envelope on the other hand, filled with dread and disappointment, meant that you were likely going to have to fall back on your Plan B School.
As the years roll by and you grow up that distant memory of the large envelope stays with you. It certainly stayed with me. Over the last several years after fighting health insurance battle after health insurance battle I quickly came to realize the large envelope in your mailbox was the one filled with despair, rejection, and disappointment. I dread that big envelope in my mailbox that has Blue Cross and Blue Shield labeled in the top right corner.
Over the past several months I’ve been tirelessly working on two major insurance battles, which has taken my every waking moment to push forward on while simultaneously building up my disability advocacy career from every angle I could think of. Every day as I would roll down to the mailbox my throat would get a little bit tight, my blood pressure would start climbing, heart racing, and as I was watching whoever was helping me open the mailbox that day turn the key I waited in eager anticipation for either the small envelope or the large envelope.
he last two battles I’ve been fighting have been for the VitaGlide, an adapted physical exercise rowing machine, and a total hospital electrical bed. Blue Cross and Blue Shield had initially rejected both requests. The total hospital electrical bed was rejected on the grounds that it was not medically necessary and the VitaGlide on the grounds that it was a non-covered benefit. I’ll explain the difference in a moment, but I’ll start out by saying when you are rejected on the basis of something not being medically necessary you have many more avenues to pursue for appeals than you do if you get rejected because an item is a non-covered benefit under your insurance plan.
I was 300 miles from civilization in the outback country of Western Australia in the Kimberly’s in 95° heat carrying an 80 lb. backpack with holes in the back of my heels the size of quarters bleeding profusely in my hiking boots climbing a mountain with no way to turn back. All I wanted to do is stop hiking, but I was on the side of the mountain with jagged rocks and several other hiking comrades trying desperately to make it to the top while my feet could barely carry me a step further.
I know I couldn’t complain because we were a team trying to hike our way to the next water source by the end of the day with nothing but a compass and a topographical map. If we didn’t make it to the next water source by sunset we would have be stranded in the wilderness surrounded by King cobra snakes, chilling temperatures, exposed to the elements, and disoriented by the darkness of night.
Despite the agonizing torture of pain as I put 1 foot in front of the other – when we finally turned that corner or climbed over that mountain to find an oasis like waterfall in the middle of a desert like climate everything suddenly made sense. I kicked off my boots, stripped off my clothes, and dove into the crystal clear pool of water to swim under the beating waterfall, which made that day of seemingly insurmountable challenges simply melt away. It was paradise, but it was not without its perils to arrive at such a place.
This is just one memory of dozens I recall from my numerous wilderness survival trips I willingly participated in during my young teens to my mid 20’s prior to my spinal cord injury, which, I didn’t know at the time, was preparing me for the hardest journey of my life – living life as a quadriplegic with paralysis from the chest down.