A long time ago in a galaxy far far away…accessibility experts toil away ensuring the Death Star meets all of the Imperial requirements for disability access. We all know the story as told by Lucasfilm’s and now Disney from the perspective of the all capable Jedi Knights however from my viewpoint I look at Star Wars a little differently and I found myself wondering how I would make my way around the galaxy in my wheelchair. So I set out to have a few questions answered: “are the stalls on the death Star accessible?” “How do the handicap Ewoks make it through their forest village high up in the trees?” “Are there tiedown straps in the Millennium falcon?”
Using my intergalactic search tool i.e. my laptop and Google to see if I could find any evidence that the Empire or the resistance kept any standards for handicap accessibility was pleased to find they did. However in some instances fell very very short.
Apparently the “evil” Empire does issue wheelchairs to their veterans. As evidenced in this picture.
Once a Jedi has trained an apprentice they move on to some deserted planet old folks home.
and even the fastest bucket in the galaxy got an accessible ramp thrown in.
But leave it to the little furry guys on Endor to get it all wrong.
No elevators here!
Being a quadriplegic living with paralysis kind of sucks
I know what you’re thinking, “well of course it sucks.” And I would tend to agree with that statement because as a whole it does kind of suck. But oh there is a silver lining in that black cloud of quadriplegia. “What?” you say? “There is no way. It looks like a horrible time.” Yes, for the most part the inability to move my appendages leaves me insurmountably frustrated. I have learned in my short time as a handicap to bury that constantly nagging feeling of helplessness. Mainly, underneath a fistful of antidepressants. But I digress. Being a quadriplegic living with paralysis kind of sucks.
There have been many good moments over the last 15 (now over two years) months: I’ve learned a lot about myself, and the people in my life. I have met a lot of great people, joined a couple of great organizations, continued to run my business, started a blog, and continued to meet life’s challenges head-on!
Being a quadriplegic living with paralysis kind of sucks
This post should provide some insight on what I do every day and in hopes to shed some light on the day-to-day awesome sauce that is my current “new normal.” That’s what the therapist call it when you have a catastrophic injury and have to figure out ways to make your life be somewhat normal.
I define normal as having a sense of purpose. The good thing about purpose it doesn’t take physical attributes to have. You just have to be willing to take action. Breaking my neck and said little change on my purpose. There have been some minor modifications to make sure I can still take action. My day is typically normal and just like everyone else’s.
So I get up and go to work.
This is typically a Monday through Friday thing and I get up. I mean Tina and an aide from the local home healthcare agency get me out of bed, put me in the shower, shave, brush my teeth, and then head back to the bed to dry off and put my clothes on for the day. I am then craned into my power wheelchair with an apparatus similar to what a mechanic uses to lift an engine out of the car. Then I’m off!
Into my home office to begin my day around 10 AM. During the day I am either on the phone, sending or receiving emails, fixing bugs in our marketing, interacting with clients, and all the other day-to-day activities of a business owner. This goes on usually till about 6 PM depending on how much work I have left to do. So for Monday through Friday this is where you’ll find me unless…
Go outside your house.
Lately I have been up to something very exciting. Working with UCF on new wheelchair technology and becoming Central Florida famous. Limbitless Solutions is a nonprofit that helps amputees and now high-level quadriplegic injuries and affects a better life for them and I’m proud to be a part of that. You may have noticed me on the news almost 1 million hits.
Sometimes we have to drive three hours to the Tampa VA to see my doctor. I have work to do for the Paralyzed Veterans of America Central Florida Chapter as the Treasurer that keeps my off time occupied. I am currently planning a poker night fundraiser, a group skydiving event, trying to find ways for the chapter to effectively assist our members, and the list goes on. It may seem like a lot, and it may be, but the one thing all of these have in common is I would not have done any of them without being injured. Some activities have changed but my mission has stayed the same.
I am damn sure not letting the inability to use my arms and legs stop me
My mission now as it is always been at least for the past decade is to do my best to take care of my family, earn some sort of living, and try to explore all life has to offer. My injury has not changed this it has just changed how I get there. I’ve also been given opportunities I wouldn’t have thought I would enjoy or be as passionate about as I am now.
Being a quadriplegic living with paralysis kind of sucks
I am damn sure not letting the inability to use my arms and legs stop me. So yeah being a quadriplegic kind of sucks but as with anything else you can either overcome adversity or go hide in the closet underneath your blanket and never come out and experience everything this world has to offer. Good luck with that I’ll be skydiving.
Many thanks to love my life Tina goes without her none of this would be possible. You are my lighthouse in the storm.
Daughter of Quadriplegic’s Letter to Ellen DeGeneres
My oldest daughter took it upon herself to write Ellen DeGeneres and I have taken the liberty to place it here. Something about the way she writes always moves me. To help out go here. Daughter of Quadriplegic’s Letter to Ellen DeGeneres:
Hello there Ellen!
I am a typical teenage girl; I get in trouble with my parents for going to small parties, I stay up late on Twitter and I love my family. However, one thing that isn’t so typical about my life is that my step-father, Charlie, became a quadriplegic last year. Quadriplegic means that your arms and legs are paralyzed. My step-dad has been a role model for me and my family since he came into our lives in 2005. He served in the United States Marine Corps, he was a powerlifting champion in 2014 and he is the best Father he can be 110% of the time.
Nobody knew that simply diving off of our boat in the Gulf of Mexico would cause such a huge impact on our lives. The water was too shallow. After dying 6 times, being on a ventilator to breathe, me and my little sister missing weeks of school, my mom coming to her wit’s end and 8 grueling months in the hospital he made it home.
Bedside with Charlie
Making Our Lives More Accessible
Our house was outfitted with ramps, fancy voice-controlled lights, medicines nobody could pronounce, different kinds of wheelchairs and most importantly, a fully intact family. The doctors told us that he would most likely never be able to move any of his extremities ever again, that fact has still held true to this day. Charlie is 36 years of age. He is so determined (he always has been) to get better and be himself again. Nearing the year anniversary of the accident, he is getting quite bored of being a quad. Even with all of his voice controlled computers, tablets and televisions that the Veterans Affairs has so so so generously provided us with, it can never compare to being able to do everything on your own.
Not great
Learning to be a Caregiver and Daughter
Me, my little sister Katelynn, and my mother Tina feed him, put him to bed every night, get him up every morning, get him sips of water, push his stomach when he needs to cough, scratch his head because it feels so good to him and we love him with all of our hearts. Luckily my mom is a nurse so it has made this whole ordeal much easier; she does so much for him and is often stressed (but who isn’ t stressed these days?). This story isn’ t just about my step-dads bravery and fight to live, or my moms dedication and perseverance, my little sister (15 yrs) wanting to sell her kidney to be able to pay for him to get stem cell research or me just trying to make this easier for everyone; its about being here for each other. Not just family but everyone who cares about something.
After the accident…
we made a GoFundMe account, 98 people donated about $7900 dollars. Everyone came together to help just one man that needed it. It was beautiful and inspirational. But being a quad is not cheap and as I said before, Charlie is tired of it. He has been looking into Stem cell research in India and various other countries. The price of this can range from 50,000 to 80,000 not including housing and food in a foreign country.
It’s been a long year Ellen. One step forward and 5 steps back!
Most of the Family
A quadriplegic woman that had seemingly worse injuries than Charlie was fortunate enough to try out methods done by Doctor Schroff in India and within 3 months she was working on walking again! Aside from those issues, we have been renting a beautiful house in Deland Florida for 2 years now and we found out that the owner of the home hasn’ t been paying the mortgage since 2010. So the bank took it, a company bought it and we got an eviction notice today. We either have to buy it or move. It’s been a long year Ellen. One step forward and 5 steps back!
Charlie is so Funny and Positive
He could make you laugh within the first 30 seconds you talk to him. Don’ t know exactly what you can do to help but everyone seems to have faith in you at times like this. Even simply sharing his GoFundMe on your show or website could make a huge difference, although I feel like Charlie could give a lot of hope and happiness to your viewers.
We are supposed to make a funny MTV Cribz video showing off all of his rides (wheelchairs) and post it on Facebook to make people laugh. You would really like him, Ellen. I used to have dreams to be a veterinarian or be famous or to be beautiful. I have one dream now, it is to have my dad be able to walk me down the aisle. I hope we are worth your time Ellen and thank you for giving us hope.
