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.
I’ve written numerous articles on the importance of mental health and expressing the fact that “It’s okay, to not be okay.” I believe this wholeheartedly, but often times when I find myself writing articles and reflecting back on a challenging moment or week that I had had – I do it while I am in a better mental state analyzing my past feelings. Today I’m flipping this article on its head because as I write this I am definitely not okay in the feelings I have about my mental well-being at present, which feel wildly different than feelings expressed in hindsight. I think both perspectives are valuable and I offer you today a glimpse into what’s really going on in life and how I am attempting to handle it.
I find great comfort in knowing that I am not alone in my feelings because I get dozens of messages a day from folks expressing thanks for being extremely open with what I go through as a C6 quadriplegic who is dependent on other human beings to take care of me on a daily basis.
What prompted me to write this article was Naomi Osaka. I’m not sure if you’re familiar with this young lady, but she is a professional Japanese tennis player and has been ranked number one in the Women’s Tennis Association. She is dealing with a lot of the mental stresses that undoubtedly come along with being a top professional athlete in her field. Just the other day she did not want to partake in a press conference for her own mental well-being and was penalized with a $15,000 fine for not talking to the media after a match. There was an enormous amount of support around the globe acknowledging the importance of mental health from the public, sponsors, and corporations due to the fact that she was honest with yourself, and the world.
I’ve spent the better part of a decade learning to adapt, train, push forward, and fight for survival on a daily basis to, not only accept this life of spinal cord injury, but to thrive in it. For the most part, I believe I’ve done pretty well and professionally I seem to have the ability to seamlessly keep striving for greatness even when I am faced with strikingly devastating defeats.
In my personal life, especially the last few weeks, it feels as though life has been crumbling around me. It doesn’t matter if you have a disability as I am sure many of us feel this way, like failures, whether you’re a single parent trying to handle multiple children on your own, a high-powered CEO trying to meet quarterly profits, or a starving artist trying to make ends meet – we all have the ability to crumble as human beings. Now, it’s how we get back up that of course defines us.
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 🙂
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?”