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!
Many of you know I’ve been fighting for an adaptive rowing machine called the Vitaglide for some time now with Blue Cross and Blue Shield.
I hit a dead end working directly with BCBS policy directors and I’m now introducing legislation with NC State Senator Jay Chaudhri in May. Very exciting!
In the meantime, I’m working closely with all of the folks at Vitaglide for promotion awareness of adapted exercise equipment for long-term wheelchair users.
They were so kind to write an article on me and all of the work I’m trying to accomplish with respect to health equity and not just health equality!
Every time I fail something, and I do fail quite a lot, or something stops dead in its tracks, I usually have 10 other things in the works.
Life can be utterly exhausting, but I know one person can make a difference even if it is only to inspire others to carry on the work they have started!
Thank you Vitaglide team for highlighting some of the work I am engaged in and spotlighting my consistent efforts for which I won Miss wheelchair North Carolina 2022 on — Health Insurance Advocacy! Nationals here I come in Grand Rapids Michigan from August 15th to August 21st!
You work so hard for so long on a specific project only to have it practically blow up in your face. I’ve been working with Blue Cross and Blue Shield policy directors for the last six months and I recently received beautiful “BS” letter as they say stating that my efforts to have adaptive exercise equipment reviewed under medical necessity was not going to be an option.
I have tried to play nice, it did not work, and that’s okay. I’ve simultaneously been working on legislation on multiple fronts to be introduced over the next few months and few years from different angles. I always try the path of least resistance first, this does not always work out, but it does not deter me either.
If you’ve been following my health insurance battles you will want to take a close read of this one because my entire disability advocacy career started out with health insurance equity. It is naturally a passion project near and dear to my heart and one which I will continue to fight for on so many fronts. What will ultimately end up happening is having to create a coalition of seriously smart lawyers, doctors, advocates, etc. in years to come. This mission is going to be measured in many years, not months.
Fortunately, my spinal cord injury has taught me the definition of extreme patience. For this I am thankful!
I may Sisyphus rolling the boulder up the mountain only for it to come crashing down on me. However, I will start rolling the boulder back up the mountain in real time! I will break the cycle eventually in the name of HEALTH EQUITY, and not just Health Equality.
Very cool podcast I was part of that offers a very unique perspective on how many of us with disabilities approach the conversations with our caregivers when we want to be intimate with a new person in our life, and how we handle those conversations.
Probably not something you think much about, but it’s an important topic that constantly gets pushed aside and is left unrecognized!
I personally have had a lot of really interesting experiences and conversations when I was engaged in the dating part of my life prior to getting married. Some wild conversations for sure 😉
This has been a project near and dear to my heart that I have been working on for the better part of a year, but projects have just been popping up left and there never really seemed to be a right time to take the leap. So, I decided weeks ago to just dive right in as they say (figuratively of course because I already took the physical dive 12 years ago;) – and, I certainly don’t have any desire to do that again!
I am incredibly humbled, honored, and proud to announce the launch of my new YouTube channel called
“Shower Talk with Ali – Where No Topic is Limit”
To complement my website and my writing I appreciate many people love to watch videos. In light of this, I’ve created this YouTube channel with the sole focus of approaching and normalizing uncomfortable topics in my life and the disability world so that folks from all walks of life can understand what many of us go through on a daily basis. This is not a channel just about inspiration, but really diving into understanding some of what many of us with disabilities live through each and every moment of our lives.
In the spirit of who I am I have approach many topics through the lens of dark humor, determination, and sheer grit at times. No matter what situation I may me dealing with in life I always seem to find the comedy behind every experience my life.
I do hope you enjoy, follow my channel, like, subscribe, and comment so that I might be able to make videos on what you are all interested in! This channel is by no means just for people with disabilities, but for EVERYONE may just be curious and loves to learn about topics that are very unfamiliar in your own life.
As many of you already know I was crowned Ms. Wheelchair North Carolina 2022 in November of 2021. Ms. Wheelchair North Carolina is an advocacy competition aimed at encouraging women with physical mobility impairments to compete in a competition based on advocacy achievements or advocacy goals in order to make their communities more inclusive.
I am truly beyond humbled and incredibly honored that CBC17 News crew in Raleigh came out to my home to do a story on Ms. Wheelchair North Carolina 2022 and the efforts many of us are making in trying to reform healthcare policy within the insurance system.
“Self Advocacy” is the single driving mission I have in my life to help others with disabilities not only survive in their life, but thrive through aiding them in getting the medically necessary equipment and services they need in their own lives!
This will always be a long-term advocacy project of mine and I will not stop until we see systemic change, but in the meantime, we need to navigate the broken system we presented with, which takes a village of disability advocates standing up for the masses!
The culmination of my life’s work thus far to being crowned Ms. Wheelchair North Carolina 2022 in November 2021 is one of seemingly insurmountable obstacles, determination, support, and unrelenting determination …
… People frequently question how I have arrived to where I am today to be a professional, disability advocate, mentor, and a ferociously “Pleasantly Persistent” woman with the motto: “NO is just a starting negotiation point.”
…. Through all of this I was approached to apply to run for Ms. Wheelchair North Carolina in November, 2021. I met some incredible ladies who are now lifelong friends and I had such an amazing weekend. My specific platform for the competition was health insurance advocacy for medically necessary durable medical equipment …
… Don’t get me wrong, it’s an honor to have won this competition and I will compete in July 2022 for Nationals, but it really was and is the collaboration between individuals with disabilities that sparks my pure joy! …
…. Here is one quote I live by “Luck is the Residue of Design” – if you design your life in such a way to constantly have opportunities presented to you even if other opportunities fail, you have a higher probability of “Lucky” things happening for you.
With that, wish me luck at Nationals, but the work will not stop over the next eight months. I have so many big plans, many of which I’m sure will lead me down unfamiliar roads, but I’m making sure I have plans A-Z in place at every turn to course correct in my own life. This is the key to lasting change and success …