My only concern when my dad was first injured was whether or not he would live. I was told pretty early that he had broken his neck, but I had no idea what that really meant. In my 12 year old mind, my interpretation was that one day I would help my dad walk again, but once I learned what paralysis really meant that image was shattered.
Having lost my only brother in the accident, I was left to figure a lot of it out on my own. I remember cleaning the screws from the halo bolted into my dad’s skull. I learned how to use a hoyer lift to help him get into bed. I even took shifts waking up at 2am to help turn him at night to avoid pressure sores. Transfers, cervical vertebrae, catheters and spasms became a part of my normal vocabulary.
My dad and step-mom were transitioning too—learning the ins and outs of life with paralysis. My step-mom connected with other spouses of quadriplegics, and my dad toiled daily in all kinds of therapy. One day he was struggling with a Velcro sleeve to hold an eating utensil, when another quadriplegic rolled up and said simply, “try this.” My dad watched him weave the fork through his immobile fingers, and it is how my dad has eaten ever since. I watched these things happen and saw how the power of connection and mentoring made such a difference in our lives and how much it expedited the adaptation process. However, I began to wonder, what would have happened if we lived far away from a big city? What if there were no mentoring programs or no one with similar mobility for my dad? I quickly came to realize how many people weren’t as lucky as we were, and I couldn’t accept that. Something needed to bring the entire community together—that something is now SPINALpedia!
SPINALpedia is a growing online community of people affected by paralysis—those paralyzed as well as the able-bodied supporters— who share their experiences to help others learn to adapt their lives more quickly and realize their potential. Searches are efficient—members specify details of their mobility and situation to filter relevant videos and members. Whether you’re a paraplegic aiming to transfer in and out of your car or a ventilator dependent quadriplegic hoping to use a computer again, you can filter content and find exactly what you are looking for. No more sorting through millions of YouTube videos and no more reading pages of text-based information which may or may not be useful. You can even search by your relation to paralysis, helping spouses find other spouses, parents find other parents, and friends find other friends. We have created a living, breathing, dynamic manual of life affected by paralysis, completely customizable to your needs.
Our mission is to give people the tools they need to redefine their lives and to free up precious time. As we help more people cut the number of years it takes to learn certain tasks and reduce the number of people unaware of their potential, we will slowly change the negative, condescending perceptions of paralysis, as more and more people are out, active and happy in society. We don’t have a say in the challenges we face in our lives, but we do have a say in how we move forward. Join SPINALpedia, learn from others, share your own triumphs and together we will redefine life in a wheelchair.
How will (or do) you contribute to SPINALpedia? What impact has mentoring had on your adaptation after a spinal cord injury?