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.
There’s an art and a science to pretty much everything in life and surviving for weeks on end in the ICU is no different. With a majority of medical professionals being woefully under trained in all of the secondary complications accompanying spinal cord injury, the thought of trying to stay alive while you’re in the hospital can be a daunting prospect -especially when you have to play your own investigator in assisting these professionals with your diagnoses.
However, while there’s definitely a certain amount of research, planning, and preparation that needs to be thought out by the patient when you are essentially locked into the hospital by your medical professionals; you can have a little fun with it as well. Living on the edge of life and death, as many folks with spinal cord injury will very likely attest to, I find taking a dark humor outlook on most situations to be healing for my body, and my soul.
Despite my long ICU stay in 2016, I maintained a cheery disposition, but this time I decided to do something a little bit wackier to pass the time. What pray tell did I do you may ask?
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.
I am so honored to be featured once again in New Mobility Magazine to talk about my marriage, the challenges we face, and how we work through them. Marriage is challenging enough, but when you add in the layered complexity of disability into a relationship I find that you have to work even harder on communication and making things work.
Check out the article below and I hope you enjoy 🙂
The other day I posted an Instagram story that choosing to be happy is a conscious choice. I received a message from a person who asked me a simple, yet thought-provoking, question on how I choose to be happy? This got the wheels turning as it is a really great question.
I’ve always been a very bubbly person throughout my life with a very quirky personality. I was raised to appreciate many different aspects of life. There is this one phrase I grew up with that my dad instilled in me.
“There’s always someone in life who is going to be richer than you and poorer than you.”
I’ve adapted this over the years to say that there’s always someone in life who’s going to have it better than you and worse than you. What it means to me is there are always two perspectives in life, and, more importantly, it is completely your choice which way you look at a situation.
I’m super honored to be featured in another article by the Christopher & Dana Reeve Foundation this year. There are concrete steps you can take to navigate the appeal system and I am partnering with SPINALpedia to create a website this year for a “Patient to Patient Guide To Navigating your Health Insurance Denials.” Look out for this later this year when we have it up and running!
We have to stick together and work together for you going to advocate for change in our country and in a broken healthcare system.
The other day I was working with my caregiver and I caught myself thinking about some of the things I ask for on a daily basis, and just how unbelievably bizarre they must sound the average able-bodied person.
I started to make a list of these particularly humorous statements that most people would consider very peculiar indeed! I found myself laughing out loud because I thought back to my life a decade ago and how I never would have thought I would catch myself asking people to do these particular tasks for me. To end the year on a funny note amidst a year of complete chaos I hope to leave you with a chuckle by the end of this article.
I’ve written about this topic numerous times, but when you are paralyzed you need help going to the bathroom. Plain and simple. When you (an able-bodied person) go to the bathroom you simply sit down on the toilet and poop. I, along with most other spinal cord injury folks, especially quadriplegics, do not have this luxury.
I do not have the ability to use my abdominal muscles to push out the poop. Probably too much information, I know, but that’s life. In any event, I have to put a suppository in my bum, let the poop come out, and then I have to have my caregiver put gloves on to go into my behind to get the rest of the poop out. Yes, it’s a pretty involved process, not particularly pleasant, but, hey, it is better than the alternative of going to the hospital because you can’t poop.
So, every morning during my “Morning Program” I ask some of the following questions:
1.)“How much poop did you get out of my bum?”
2.)“Okay, can you put your finger in my bum now to get the rest of the poop out?”
Mental Health. Society has come to appreciate the importance of mental health just as much as physical health in recent decades, but somehow there still a negative shadow cast over those who open up about mental challenges they may be facing. If you break your leg people openly tend to express sympathy for the pain you must be feeling.
However, if you talk about bipolar disorder, depression, anxiety, or whatever else ails you inside the complicated workings of your brain, oftentimes, people tend to form an opinion about the stability of you as a person. The leads to people forming quicker judgments about your ability to function in your job, your life, family or home. It’s unfortunate, but mental health, in my opinion, is still not a topic that gets the attention it deserves.
As many of you know I like to crack open uncomfortable topics and dive right into them. With that said, I’m going to open up about some of the serious inner demons that afflict me on a daily basis, how I deal with them, and, frankly, how I compartmentalize most of them just to get through my days.
Where does one even start reflecting back on the year of 2020? This has been a year to remember for the ages from pandemics to politics to pandemonium around every corner of the globe. The human race has endured throughout the ages and what millions of us are facing today will undoubtedly be written as a dark chapter in the history books, but there’s one overarching concept that continues to guide many of us during these dark times – Hope. Hope for a better future, hope for a vaccine from this pandemic, hope for our fellow humans to be kind to one another, and hope for the will to survive both physically, and mentally.
Each one of us has been faced with our own personal hardships & challenges, and while many of us may have trouble seeing beyond the trees within the vast forest – we will somehow prevail as we have done for thousands of years.
For me, 2020 has been a year of incredible clarity. While there are moments I feel intense guilt for thriving in such a dark time, I have finally found my purpose in life. In short, fighting for those who cannot fight for themselves. After 10 years of fighting my own personal battles for survival through the labyrinth of all of the complications that accompany a spinal cord injury and being paralyzed from the chest down, I finally reached a tipping point in my own life where I’ve come to realize how short life really is.