My life. It’s complex. It can be challenging and downright overwhelming at times. I find humor in places that most likely would not – even when I’m tied down to a hospital bed in China after major spinal surgery in the ICU.
The other day I was rolling around my bed with my caregiver and started to think about how I am naked 60% of my day. Seriously! I have people’s hands inside and outside of my body, and the only privacy I maintain are my personal thoughts. Of course, this can be challenging at times, but over time I’ve learned to adapt to the unknown. I redirect, reimagine, and repurpose my life each day. Such as the life of a quadriplegic dealing with bowel, bladder, dressing, showering, etc.
It’s a really good thing that I’m European. I grew up running around naked on an out island in the Bahamas and topless half of my life with a German mother who believes that less cloth’s is more. Translation — I’m really not shy about being naked. Thank goodness otherwise I believe I would not have the sense of humor I have today.
I was thinking about all of the positions my caregiver twists me every day and I just started to laugh out loud. We decided to showcase a video with my “standard daily poses” to illustrate some of the many things I deal with throughout my day.
I take great pride in my flexibility as I exercise each day and even though I cannot live the able-bodied life I had envisioned, well, dammit, I’m going to rock out the C6 body the best I can well physically laughing out loud along the way.
What else am I to do? I was the victim in my own life for so long and the biggest barrier with respect to my mental outlook for so many years. I masked my pain with fake comedy and used to consistently repeat the expression to myself “Fake it until you make it.” Life has evolved so tremendously for me over the last five years.
I realized a lot of hard work, therapy, and self-growth over the years that I now live by the expression:
“Face it Until you Ace it!”
IN ALL SERIOUSNESS …
While we are moving the needle forward with the concept of belonging for people with disabilities in our society, places of employment, and in our community — we still have to do better. So many people with disabilities still shy away from disclosing their disabilities, as 80% of disabilities are unseen, for fear of being seen as different or fear of retribution within their professional lives.
Of course, we are protected under the ADA, but that does not address “soft” discrimination from many of our employers and our community alike.
I, on the other hand, quite obviously have a disability that I cannot hide. I used to try though. I consistently spent years feeling that people did not think I was capable of my job due to my physical mobility limitations despite tremendous advancements in assistive tech.
I am just as efficient as most able-bodied people are in their jobs, have the business background to back it up, and the lived experience of my disability to offer perspectives yet unseen to many.
As it relates to my personal life, I also hid so much of what I go through as a quadriplegic with respect to bowel, bladder, dressing, and so much more. I have to adjust my life with the help of incredible human beings around me in order to bring my full self to work and life each day.
It takes me the better part of 4 hours a day just to perform daily functions with my caregivers that most can perform in 30 minutes. I then proceed to work nearly 10 to 12 hours a day. This is my choice of course as a full-time professional. However, I started this series to shed awareness to those in the able-bodied community who just don’t know.
You don’t know you don’t know. That’s okay. Most don’t want to share this side of their personal life, but I believe in authenticity and am 100% comfortable answering questions, shedding awareness, and educating those who are curious.
Of course, what I share with you is personal, but if it makes you think or change your perspective in any way next time you work with a person with a disability to gain a little bit of insight into what they may be going through — then I have done my job for the day!
SIDE BAR – even if I made you laugh today, still a win! Don’t take yourself too seriously! Life is short. Finding those moments to make you giggle in between are epically important for the sanity of the human soul
