Welcome to our new Roundtable Discussion Column. In this column, we interview people living with spinal cord injuries and ask about their tips, tricks, and learning experiences. We want to elevate the conversation around spinal cord injury from being resilient to being relevant.
We have asked Don Johnston, Dr. Kim Anderson, Blake Perkins, and Mark Keider to share their spinal cord injury story, something they have overcome along the way, and one piece of advice they would like to give someone who is newly injured (within the first year or two after their SCI). Here’s what they had to say.
Don Johnston – I’m a data collector for the Spinal Cord Injury Research Team at MetroHealth Medical System. I am also a member of the disabled community of NE Ohio. I was injured in the mid-1960s, when rehab wasn’t as scientifically precise as today, after a car accident. After going through the rehab program that was offered to me back then, I mainly learned from my family and they became critical to the success I would later see.
Dr. Kim Anderson – I have a C5 spinal cord injury from a car crash when I was 17. I did my rehabilitation on the general rehab floor in my local city hospital in Austin, Texas. I made up my mind pretty quickly that I wasn’t going to let my SCI stop me from doing what I wanted in life. I had always been interested in science so I ended up going to Texas A&M University at Galveston and earned my Bachelor of Science in Marine Biology (the state paid for my college via the vocational rehabilitation program). While I was there, I started getting interested in neuroscience because of my SCI. A couple of my professors encouraged me to apply to graduate school, they said “Kim, all you need to succeed is your brain”. So, I applied, I got in, and 4 years later I earned my PhD in Biomedical Sciences from the University of New Mexico. From there, I got a job as a post-doctoral fellow at the University of California Irvine and launched my career in spinal cord injury research. That was in 2000. Fast forward to 2022 and now I’m a Professor in the department of Physical Medicine and Rehabilitation and Director of the Northeast Ohio Regional SCI Model System at MetroHealth and Case Western Reserve University. Last year I was awarded the Craig H. Neilsen Visionary Prize for improving the world for persons with SCI.
Blake Perkins – I’m a 31-year-old dad, husband, assistive technology-obsessed-physical therapist, and has-been musician. My SCI story starts on July 16th, 2011, when I finished rebuilding a 1981 Honda CM-400 motorcycle I bought for next-to-nothing in an effort to save money on gas when running around the college town I lived in. At the time, I was a sophomore in college and worked 3 part-time jobs. I took the bike out for the first time after a rebuild on a backroad in rural Kentucky that connected my hometown to college.
Details of the accident are fuzzy, but what is certain is that I encountered a curve on the bike, lost control, hit a guardrail, then a tree. Witness stories vary as to what exactly was the cause of my accident, from an oncoming car running me off the road to me hitting a large pipe in the middle of the road. I spent 3 weeks in intensive care after the accident and 3 more months at the Shepherd Center in Atlanta, Georgia, for rehab. The lasting impact of my accident was paraplegia from a spinal cord injury, which I still live with today.
Mark Keider – My son’s motorcycle accident happened back in 2019. His injury was C6-7, and spent 25 days in ICU and 100 days in acute rehab, all at MetroHealth. During those 125 days, we were scared, vulnerable, and holding on to hope that our son would somehow recover. In acute rehab, you really do not know how much time you will have there. It depends upon the patient’s progress in rehab, the doctor, and the insurance provider. For us, we needed a bed with an air mattress, a Hoyer lift, and a ramp. Insurance covered the wheelchair and a Hoyer lift, but not the ramp. Then we realized we will need to remodel the bathroom and purchase a shower chair.
The pressure starts to weigh you down without knowing a firm discharge date. Everything becomes a priority task, with the care of our son as the highest priority. With the help of friends, we could get the ramp and our bathroom remodeled. The shower chair came much later, but we learned how to give bedside baths from our beloved care providers, so that was not such a big deal. Although it made a huge difference once our son was finally able to take a real shower. The lesson here is to reach out to friends, family, or community groups for help.
Don Johnston – The biggest life skill I learned from that time was always to maintain a positive attitude and be open to learning from my failures. The quote: “Work hard, and they would become successes,” would propel me later on in life. As it turns out, having a positive attitude about your abilities, as I did, allowed me to work my entire life, support a family and enjoy more of a lifestyle but just from a sitting perspective.
Kim Anderson – My success does not mean there haven’t been struggles. Throughout my 33 years of living with a cervical SCI, every single day, I have had to rely on other people to help me get up in the morning, get in bed at night, go to the bathroom, and a myriad of other things along the way. There were so many times I wanted to give up, crawl into a hole, and be done with this life. But something inside me always pushes me forward – I can’t really describe what it is other than an internal drive. I decided a long time ago that this life and these struggles would be worth something. I focused all my work and my free time on doing things that will hopefully make life easier for others living with SCI.
Blake Perkins – In the 11 years following my accident, I’ve been fortunate to complete undergraduate and graduate work at Western Kentucky University, obtain my physical therapist licensure, marry my wife Tamara, and (at the top of the list) become the adoptive-dad to a beautiful baby girl, Adela James Perkins. Along the way, I’ve developed–likely by necessity–a skillset of ingenuity and creative problem solving in pursuing a career in physical therapy with a disability. I’ve also learned what “fights” are worth picking as it pertains to societal barriers and discrimination I’ve encountered. Importantly, I’ve learned over the years how to engage in these fights pragmatically and gracefully rather than emotionally, as I once did.
Mark Keider – Getting a wheelchair-accessible vehicle is another undertaking. There are usually not many for sale on the open market and only one dealer in town that sold new and used vehicles. So, our selection was slim, and again time did not work in our favor as we want our son to start outpatient rehab quickly. We bought a vehicle that opened the door for getting to his rehab appointments and allowed us to sign him up for additional rehab studies conducted at Metro.
Advice for New SCI
Kim Anderson – My recommendation to others living with SCI is to take advantage of everything – information, people, groups, programs – and to advocate for yourself because no one else cares more about your success than you. And always remember, you are not alone!
Blake Perkins – If I could give some advice to the 2011 version of me, I’d advise taking on some responsibility (no matter how small) outside of yourself as a patient/victim, as soon as you’re physically and emotionally stable enough to do so, it will be the turning point you’re looking for. I remember the “tide beginning to turn” while creating and sharing youtube videos in 2012. I made several videos sharing tricks I had learned in my short time as a chair user.
These videos garnered some feedback from others who benefitted from them, so I made more. I then began working for a wheelchair sales company, then re-enrolled in school, and so on. I credit those silly videos for shifting my perspective toward one that allowed me to cultivate a career as a licensed healthcare provider.