My dear friend, Karen Roy, was gracious enough to host a beautiful podcast with Billy Warden and myself on our outing where I took Billy for a night on the town. I offered Billy a different perspective on being a wheelchair user by fitting him with a Permobil F3 power wheelchair and taping his hands up to make little “paws” as my hands are as a C6 quadriplegic.
Naturally, I cannot offer any able-bodied person a true experience of what it’s like to be a quadriplegic, but I did have the ability to offer him a perspective shift for a day a few of the challenges many of us wheelchair users and quadriplegics go through on a regular basis.
As Ms. Wheelchair America 2023 I am constantly looking to push boundaries with respect to inclusion, but also focus heavily on changing people’s perspectives in many arenas in life. Karen Roy, Ms. Wheelchair America 2019 was such an inspiration for me running as we shared similar platforms with respect to health insurance, adaptive exercise equipment, and medically necessary equipment.
A dear friend of mine writes for many magazines and wrote a beautiful piece over the last several months on my life, but what I think was very different as compared to many profile pieces was a night out on the town with me.
I fitted Billy up for a power wheelchair and taped his hands up as a quadriplegic with little “paws” like mine for a night as we went bouncing around town and dancing at the Dueling Pianos Bar.
In no world would I be able to simulate what it would be like to be a quadriplegic for the day, but at the very least, I wanted Billy to get a different perspective on life for eight hours.
I won’t spoil it because he is such a talented and brilliant writer — you get life from his perspective as an able-bodied person.
He also wrote a beautiful and wacky piece on my life.
I am humbled and extremely proud to have parted with National Nonprofit SPINALpedia. I’ve spent the last year writing a detailed guide to helping people navigate the health insurance appeals process with tips and tricks.
Navigating the health insurance approval and denial process can be a winding road filled with roadblocks at every turn, but if you understand where these barriers are placed you can divert around them in order to get to your destination. This will be a living guide and will consistently be added to over time by myself and many others around the country.
This guide is a culmination of my work over the last 10 years after being repeatedly denied medically necessary equipment I needed to not only survive in life, but to thrive. I have fought long and hard battles for equipment such as total hospital electrical beds, shower chairs, seat elevators for power wheelchairs, functional electrical stimulation bikes, pressure relieving mattresses, and more with much success.
My sincere wishes that people do not have to fight as hard as I have had to and please let this guide help you avoid some of the major mistakes I made along the way, and how I navigated multiple approvals with my health insurance company.
I never critically stopped to ponder why being a great communicator can also lead to a very lonely existence at times. Since I was a child, I have always been “perky” as they say and never had a problem in social settings. I love people, communicating with them, helping them, and always trying to find a middle ground between disagreeing viewpoints.
Since my accident so many people tell me that my patience levels, communication skills, and calm demeanor are extremely admirable. This is what I’m told to my face anyway. I believe it’s true though as I have this odd ability to stay unusually calm in stressful situations, and be patient for far longer than I probably should be at times.
I attribute much of this to Blue Cross and Blue Shield with the hundreds of hours I’ve spent on the phone with folks that are not particularly bright trying to get medically necessary equipment approved. I recall this one day I spent nearly 7 hours on the phone calling back Blue Cross and Blue Shield trying to find someone who could actually help me or transfer me to the right person. On that particular day I do recount losing my patience as I started to raise my voice, which is very unlike me.
On a serious note, and I’ve written about this on my social media before, living with a disability where you are physically dependent on other human beings to help physically take care of you each day is a blessing, and a challenge wrapped up in an emotional bow.
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.
This is hard to write – perhaps harder to deal with than chronic debilitating nerve pain, which I suffer from daily. When you are physically disabled and require 24/7 help to take care of all of your daily needs it requires a village of caregivers, family, friends, agencies, medical professionals, etc.
I preface what I’m about to dive into by first saying each and every person in my life who helps to take care of me, paid or not, Thank you! You physically help me live my life each and every day, which is the most beautiful gift I could ever ask for. I appreciate every single human who takes time out of their lives to make my own life possible. This, in turn, allows me to spend the time advocating for others who need my help. It also affords me the opportunity to live each and every day to its fullest and advocate for systemic disability inclusion.
Now, onto what is behind the curtain of my life that many who do not live with a disability simply do not see because much of it is hidden. My life is my own, but it is not at the same time. I can’t do what I want and how I want to do it at all times.
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!
Becoming a quadriplegic and being paralyzed from the chest down may appear to be the most challenging life altering event many may ever go through in their life. However, leaving aside the endless secondary complications that can arise from living a life with paralysis such as pressure sores, nerve pain, respiratory issues, osteoporosis, infections, bowel obstructions, bladder incontinence, to name a few, can, often times, pale in comparison to the financial burdens associated with living a life with paralysis. The financial hardships associated with any type of disability, one could argue, is more debilitating than the disability itself!
For the purposes of this article I’m going to be discussing some of the financial challenges and realities of living a life as a quadriplegic as opposed to a paraplegic. In general, a quadriplegic needs round-the-clock care to help with basic functions such as going to the bathroom, eating, dressing, etc. While every injury is different and there are certainly some quadriplegics who I know who live independently, I will tell you about my life in particular.