Join us every other month for Comfort Conversations, a discussion series led by our Ambassadors who share their thoughts on issues affecting wheelchair users worldwide. Today’s topic is on finding encouragement through peer support groups, written by Comfort Ambassador and the face of the Woody Foundation, James “Woody” Beckham.
The phrase “peer support group” evokes many different meanings for any individual. What does it mean to be supported by your peers in a group setting? Do I need to share personal struggles and challenges with a group of strangers? How could these strangers understand me even if these strangers do have a spinal cord injury just like I do?
Countless thoughts and emotions similar to these occur after someone has a spinal cord injury and is invited to a peer support group. A spinal cord injury happens in an instant. No one expects to be paralyzed or is prepared for losing control of their body. Losing control of your body’s previously normal abilities like the ability to walk, is what the outside world perceives to be the worst. But, many paralyzed individuals will state that secondary conditions like controlling your bladder is more difficult to manage and deal with than learning how to use a wheelchair. So… what does that have to do with peer support groups?
A spinal cord injury peer support group is designed to enable individuals with spinal cord injuries to learn from each other about managing their life after a life-altering injury. Doctors, nurses, therapists, family members, friends, and many others want to help you overcome and move forward after your newly acquired disability; yet, firsthand knowledge from a person living with paralysis for a long time can be better information than you receive from your doctor.
Unfortunately, many individuals will not ask for help even if they desperately need it.
The vast amount of information related to paralysis is overwhelming. How can I have a life after paralysis if I can’t even stop peeing on myself while I’m in my wheelchair? My doctors have never had an accident in their pants, but I have. I can empathize with paralyzed individuals that are going through difficult personal struggles, without having much knowledge related to their condition, because I was there six years ago.
There can be many overwhelming hurdles to jump whether that challenge is managing your health, transportation, accessible housing, or financial challenges. Meanwhile, I or someone in a similar situation may have a solution or recommendation to help with these problems. I truly believe that having a support system to help you is crucial to you maximizing your independence.
Fortunately, I was thrown into a situation with a lot of support, especially from my family.
Support does not mean that they did everything for me like a personal butler (even though that sounds nice in theory). Sometimes support consisted of my family members pushing me out of my comfort zone. I will never forget the day that I was lovingly forced to sign up for college classes by my father a few short months after I arrived home from the hospital. How was I going to complete a college course when I had limited hand and arm function from my quadriplegia? Well, I figured it out and school became the least of my concerns.
I believe that I have acclimated to my injury quicker than most individuals because I have had a support system and a sense of independence. In addition, I learned various tips and valuable information from several quadriplegics that had been around the block. I used their information to implement solutions into my life, and that enabled me to accomplish seemingly impossible tasks.
For example, I was informed by one quad about a particular catheter, the EZ-Gripper, that enabled me to create a system with hooks to remove my pants so I could independently cath myself anywhere. Being able to do that without assistance was my biggest accomplishment during my first year of being paralyzed. This independence allowed me the freedom and peace of mind to not have to rely on others to follow me around just to help me with my catheter. Personally, I loathed but appreciated having family members hovering around me trying to help. Accepting this help from others was difficult for me at first because I was consistently admitting that I could not do the task at hand.
I realized that I needed help. I just wanted to try to do as much as I could on my own.
I wanted to maximize my independence. I continuously attempted to figure out how to use some inanimate object like using a fork to eat with, without spilling food all over myself. Basically, I struggled a lot, usually alone in my room. From one quad, I learned about an adaptive fork for eating. This adaptive fork had a C-shaped design to slide my hand into. It enabled me to eat without spilling food all over myself. Plus, the fork had other uses. I experimented by using this fork for a variety of tasks including eating, cooking, opening zippers and even opening letters and packages.
Then, I began driving after a few years, which allowed me to do even more. Some people are amazed that I could drive at all. I have experienced a lot of situations similar to these personal anecdotes. I know many other paralyzed individuals that have similar stories to share, which could help others with spinal cord injuries adapt to their new life. These anecdotes explain what peer support groups are about. My advice is, don’t be afraid to join a peer support group! It might just maximize your potential and your life!
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Note: The Comfort Conversations articles are for informational use only and are not intended to be construed as medical advice. Ask your doctor about issues related to your health and medical needs.
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