When most people work with me, professionally or in my advocacy life, they usually see a quadriplegic who is well dressed, makeup on, hair straightened, perfectly sitting upright in my wheelchair.
I work very hard and very long hours between my pro bono advocacy life and my professional corporate life. I absolutely love what I do in the world of Diversity, Equity, and Inclusion in the disability space, but it can take a lot out of me. A normal day consists of between 12 to 13 hours of work. You see, I don’t get government benefits due to my income limits and so I have to work full time.
The challenge I run into as a C6 quadriplegic with chronic 24/7 nerve pain burning my entire body, chronic cervical neck pain due to multiple spinal surgeries, and hypersensitivity on my paralyzed hands (“paws” as I call them) is that while my mind is running on 100% most of the time, my body does not always follow suit.
This presents a bit of a challenge. Each day I wake up at 5 AM in the morning, but 9 hours later my body is crying out to me to be kind to it and please help it. Over the years I have finally come up with a routine that works for me. It’s rather unconventional, but it’s my version of disability inclusion in my own life.
Monday through Thursday mid-afternoon or so I down tools at my larger computer and go work with my caregiver for an hour or so for all of those necessary life tasks I have to take care of such as shower, exercise, etc. As late afternoon arrives, I have to continue working, take zoom calls, and finish projects from the day. I simply cannot accomplish this upright in my wheelchair as the pain starts to overtake my critical thinking skills.
What do I do?
In a word. Re-Adjust.
I re-adjust my life in a way that works for me. I bundle up with numerous heating blankets due to lack of thermal regulation from being a quadriplegic, lay down in my total hospital electrical bed that moves up and down, put my working lap desk on myself, and snuggle up in multiple layers of blankets.
I then, simply, start working again. I know what you must be thinking… “She looks completely ridiculous, but utterly adorable😉”
The picture I know must seem odd to many, but you may also be wondering why do I have compression sleeves on my arms and gloves. Well, due to hypersensitivity called allodynia, which is a result of peripheral nerve damage, it’s excruciating for me to type on a keyboard or even have the slightest of touch on my arms (such as air conditioning or heat). Touch is great, but not gentle light touch for me. So, I’ve adapted my life to find the most comfortable possible position for me to continue thinking critically to finish my work for the day.
Interestingly, I posted this on my social media and received so many messages from fellow quadriplegics showing me their similar setups. I always get accomplished what I need to, but probably not in a way that most people had envisioned.
I share this because I am constantly trying to “normalize” my life with the disability. I do not want to pretend, nor what I wish anyone else to, what some of the real struggles look like for many of us in our lives with respect to the way we may move, think, and sense differently.
Most folks with significant disabilities I know are just as effective and efficient as any person who is able-bodied, but we just need to reimagine our lives a little bit differently to make it work for us. I even share this on my professional LinkedIn page because I found myself many years ago trying to stay up later in my chair than I was comfortable with trying to portray a certain image of what a hard-working person with a disability looks like.
That’s ridiculous! There is no right way or wrong way. I am not weaker or less efficient at my job because I have to work from my bed. I am no less capable than someone else. I just need to arrange my day in a different way to accomplish my tasks, just as a mother needs to pick up her child from school.
I hid this side of myself for so long from so many people because I wanted to seem like a rockstar disability consultant, but the fact of the matter is, so many of us are rockstar’s! What does it matter how look if we get the job done well.So, now you have an inside look at the other half of my true authentic self. Also, the picture would not be complete without my stuffed animal named froggy. He’s been with me for nearly 15 years and in every ICU visit I’ve ever had the pleasure visiting. Even when you are 40 years old, I firmly believe you’re never too old for a stuffed animal in your life!
