Just operating a power wheelchair for the first time, after two months in bed, was surprisingly liberating. Today, I have a lot of love for the chair that at first glance looked huge, awkward and embarrassing. It is a tool that affords me many opportunities and considerable autonomy. Just a tap of my head and I was mobile again, navigating through a maze of orange cones my therapy team set up at Banner.
Another catalyst in restoring some independence to my life has been adaptive technology. I’m using it right now, writing my fourth book. I was perhaps five months into SCI life when my family rigged a phone up in front of my face and put a stylus pen between my teeth. Navigating online again, reading, writing again, was so important for my mental health.
Not all rehab facilities are the same. Lack of education about disability leads to perspectives that portray us as unable to participate in life due to the severity of our injuries. This could not be further from the truth. Jordanne (C4) wasn’t given good therapy following her injury.
“After being sent to a rehab hospital they taught me how to live in a wheelchair but nothing more. I was never taught how to do occupational or physical therapy. I was pretty much treated like I would never be able to do anything.”
No thanks to the rehab she attended, today Jordanne is a schoolteacher and an entrepreneur who types with a mouth stick and has a respected social media presence that inspires and motivates people of all walks of life.
Finding a rehab that really helps people with spinal cord injury is so important. Shanice (C5) had a much different experience than Jordanne.
“Craig [Rehab] was so bright and beautiful. The food was good. It was so holistic in terms of the injury as a whole. The techs were AMAZING. It’s hard to find an area that they weren’t amazing with. I loved it but after I got home I really felt like I could have done more. They offer tons, I was just being backwards. Now I feel like I only used that opportunity to learn how to live in my chair rather than that and working on walking again. I honestly have no complaints though. They took such good care of my family and myself.”
Take advantage of the time you get with your therapists. My therapists became dear friends during my time in rehab. They pushed me to take my life back. I was so concerned about being able to use my phone and they helped me get the stuff I needed to mount it on my chair and type,
A good inpatient rehabilitation program will present options to make navigating a PC or phone accessible. Therapists will teach you how to use voice controlled assistants to call for help, control temperature and light.
A couple decades ago, the wheelchair market was limited to just a few brands and models. Now the options are impressive and power chairs can be customized for every level of disability. Your occupational therapist will assist you in getting a chair fitted and configured to your needs.
Rehabilitation cannot make our complete injury an incomplete one. We would do better to focus time and energy on learning about our bodies and how to navigate them. It all starts with getting out of bed.
Getting out in the world in our clumsy wheelchairs and sedentary bodies can be daunting. We may feel self conscious or even ashamed. Remind yourself that comparison is a thief of joy. Compete only with yourself, to improve each day. Remind yourself that people are typically so wrapped up in themselves, most strangers are not going to be thinking about you and your disability. Remind yourself that if others do demonstrate pity towards you, that this doesn't make you pitiful. It just means they don't understand disability. Some of the strongest people they will ever meet live with disability.
