The other day I was reading an article on how traveling on airlines are far from “accessibly” friendly to those in wheelchairs. In this article the story started out by featuring a wheelchair user in his mid-twenties named, and you may know him, Shane Burcaw.
If you have not heard of Shane before he suffers from muscular dystrophy and has been in a wheelchair since he was a child. Due to multiple contortions of his body he has to fly in a very intentional manner. His only weighs about 65 lbs., so he has to take a child’s car seat on the plane with him. He then experimented with multiple iterations of high-quality foam, which he spent nearly $8,000 on, to fit on the left and right of him in order to avoid pressure points. He actually did a video with his now fiancé on how he does this.
He’s marvelously funny and very articulate. He started a blog nearly a decade ago and is now a public speaker as well as having a very successful YouTube channel with his fiancé where they talk about relationships, and daily dating life. I highly recommend you check it out, but that’s not the point of this story.
The article sparked me to think about ‘inspirational” disabled people and those wonderful stories you read about those overcoming the greatest of odds in the face of the most adverse situations. Where do we hear most of the stories? Why on social media of course – Twitter, Instagram, Facebook, YouTube, you name it, and the stories are out there.
The stories which seem to receive the majority of likes and praise appear to be ones where incomplete quadriplegics or paraplegics have gained enough muscle function to take their first step, wiggle their toe, etc. I think that’s great and creates a lot of hope for people, but there are people who are also incredible inspirations who you never even hear about – it’s likely you never will either.
There are so many folks I know with disabilities who face adversity head-on just like Sisyphus rolling the boulder up the hill only to have it fall down again, and then roll it right back up. It’s like Groundhog Day with a giant rock up a mountain. It’s frustrating but it’s often times the “norm” in life when living with a disability. You battle one medical challenge and recover from it only to have another one bite you in the ass. However, these folks just keep going and going and going and going … picture the Energizer Bunny on steroids. Yup, these are the folks I want to highlight today and a few of their stories because while I oftentimes receive praise for my positive attitude, dark humor, and quirky disposition – I accredit it to so many others.
You see, despite my medical challenges, care giving roadblocks, and endless pain – I am fortunate enough to have an incredible family surround me, am financially stable, and am blessed with a father who taught me how to express myself through writing.
Countless folks I know don’t have the time, money, resources, energy or the ability to express themselves in a public way because they’re having to deal with so many challenges being thrown their way simultaneously.
I spend quite a fair amount of time on my Facebook spinal cord groups because these folks understand me and what I’ve been through, dealt with many similar challenges, and been to hell and back – all while gritting their teeth and coming back stronger on the other side.
I don’t care who you are or what your obstacles are – whether you be a single mom trying to feed multiple children on minimum wage, a cancer survivor, suffering from a mental illness, disabled or anything else. My point is that whatever you face in a day may seem small or giant to someone else, but you faced it, dealt with it, and came out the other side. You may be a little worse for wear and the problems may come back, but you made it through a day. Sometimes that’s all we can do, make it through the day no matter what the issue is.
I want to commend those, especially those in wheelchairs, since that is my world, who you don’t read about in the newspapers getting a new exoskeleton to walk, but those who have been through hell and back several times, and still manage to shoot you a smile or words of encouragement after they’ve had a rough day.
In statistics there are always outliers – “a person or thing differing from all other members of a particular group or set.”
Many of the stories I read on social media of these incredibly inspirational folks who are disabled and who have managed to climb Mount Kilimanjaro on the back of someone, start a national dance group, take a 2000 mile bike ride across the United States, and so many more wild stories are, indeed, outliers. I call them the inspirational “Wow” people.
These “Wow” people are not the norm and I am always amazed at what they accomplish. I know they have dedicated their lives to working extremely hard and it took an incredible amount of blood, sweat, and tears to get where they are today. Many of us should continue to strive to be our own version of “wow” people, but the definition of being “wow” in your own life can be as simple as finally putting on your pants for the first time in bed or getting in your wheelchair alone, making dinner, cleaning the house, holding the door for a stranger, etc.
The point is the “wow” moments in your life can be so small and while we all crave attention as human beings for our accomplishments; I feel we get discouraged sometimes when we don’t live up to our fellow man to accomplish something 10 times as “Wow” according to public opinion.
I gather much of my inspiration from many of the folks I mentor, many from my spinal cord Facebook groups, and the people I meet on a weekly basis.
When I was dealing with my pressure sore several years ago, which left me in bed for a year, and two major surgeries later to fix it, I was feeling sorry for myself. I did my best to meditate, read, work, but the fact of the matter is I was staring at four walls for a very long time. This should have be enough to drive even the most determined person bat shit bananas. Admittedly, there were moments where I found myself talking to myself when one of my caregivers walked in and asked me what the heck I was doing?
Anyway, this is when I started to join the spinal cord Facebook groups. I met a lady who had been through what I had x20 and not in a fun happy kind of way. She, too, suffered from a pressure sore on her behind, but she had been through multiple surgeries, wound vacuums, oxygen Chambers, and had been cooped up in her room for 2 1/2 … Yikes !!!
After the end of her 2 1/2 year nightmare something as simple as getting up in her chair everyday was her own inspiration. She didn’t write about it or share it with the world because she was in a constant self-contained warzone. By the end of her war she just wanted a little bit of peace and the happiness of simply getting up each day, which was consolation enough for her.
We need those folks on social media creating the public inspiration stories, but I would be remiss not to recognize those like her who most will ever hear about, the battle she overcame, and, who knows, perhaps she drew inspiration to keep going from a story she read online?
The point is inspiration lurks in the most unlikely of places if you look for it. When I was going through my own personal hell and I spoke with this woman she was my inspiration. She got me through the worst of the nights and she probably doesn’t even know it! I tried to reach back out to her, but never received a response. However, she changed my life behind the scenes.
There was another lady who made an interesting comment on one of my Facebook groups and she was from Africa. She couldn’t understand why many of the people on the group were talking about handicap parking issues, medical challenges, relationship problems, etc. She is from Africa and grew up in a society where the disabled are not even viewed as basic citizens or even humans for that matter.
She didn’t have a wheelchair, peopled carry her on their backs, and she was only allowed to go outside if someone was kind enough to take her. She was a prisoner in her home, her world, and her life. I couldn’t blame her why she didn’t understand why we were talking about silly things (to her) like relationships when she could barely get outside her house.
I am very much against comparing oneself to another. I know we all do it and it’s human nature, but as I’ve said time and time again, one person’s tragedy may be a walk in the park to another person based on their circumstances. We all have our own challenges no matter if others think they are small or large. Of course I think about the fact that I am not starving in Africa and how lucky I am, but I also realize that my problems are real, and so are yours!
While this woman may have been complaining about us Americans and what a great life we live … from her perspective she’s not wrong, but many of our perspectives, here in the United States, the issue of handicap parking, for example, is a big deal.
What this woman didn’t realize is that she provided inspiration to me that day. I was inspired with how she got to a computer and joined in the group. Despite her comments she clearly longed-for community, and while she may not know it, I was sitting back thinking about all the incredible people in this country who have fought for disabled rights.
Suffering has always been part of the human condition, but so has hope. Life can seem like an endless series of disappointments if we are not open-minded to look for the glimmer of sunshine, rainbows, and leprechauns at the end of it.
There may be days, try as you might where you just can’t find hope hiding around the corner … those little leprechauns are sure tricky to find sometimes!
I find it useful on those days to take a breath and find something that inspires me in an unlikely place. It may be small such as appreciating that while I don’t have the use of my fingers I can bend my wrist upwards to hold my cell phone. When I do have those days where I keep chasing a leprechaun and he keeps getting away for me, sometimes I do retreat, but if you look for it, that little inspirational leprechaun, whatever form he may take, is always there waiting for you.