New YouTube Video Out — Quirky Quad “Shower Talk with Ali” — UNCENSORED!
I bet you don’t know a lot of people that have spent a year in bed. Why would you? This is definitely not normal. I’ve written about it before, but I take you on my video journey with probably more information and photos then you care to look at, on what my life was like when suffering from a major pressure sore down to my tailbone in 2015.
This is a story of hardship, triumph, mental fortitude, sexy ICU Photoshoot’s, a ton of dark humor, and how I survived an extremely traumatic experience in my life.
Most people think the physical side of living in your bedroom for nearly a year looking at four walls was the most challenging part with all of the surgery, but it really was all mental!
Some of the strategies I employed in my own life have allowed me to get to where I am today and be who I am today! Leaving my professional skill sets aside, having a lived experience with disability makes so many of us profoundly capable of so much more than society and companies give us credit for.
We only need the chance to prove that we are incredibly resilient human beings, intelligent, resourceful, seriously organized, incredible at paying attention to detail, and determined to succeed more than most I would argue.
Enjoy, but I will warn you there are some graphics that might be a little bit disturbing, but are 110% real life.
Living with a spinal cord injury as a quadriplegic is no joke. Death is quite literally around every corner every day of the year. Food for thought when you think about perspective in life.
“In law enforcement, a lot of what I saw broke my heart. I’d come home and take my clothes off and just shed the world away,” he (Dwayne) recounts … And while Dwayne’s non-textile appearance this Saturday afternoon might shock some, the reason behind it will come as no surprise to anyone familiar with a common 21st century prescription: self-care.”
I had the distinct pleasure to dine with Billy and a gaggle of other movers and shakers in the Raleigh, North Carolina Triangle area this past week. There were so many influential, inspiring, and well accomplished professionals engaging in fruitful banter.
How did I get invited to such a dinner? I had met each of these people individually over the last several months and, coincidentally, many of them were already well acquainted with each other as many of them ran in the same social, and political circles over the last several decades.
So, in a very “Ali” fashion I decided to be pleasantly persistent and arrange a dinner with new friends, old and reconnected ones.
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.
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.