I realize it’s been quite a few days since I last posted. I’ve been keeping busy working on a variety of projects which I had planned to write about in this Journal entry. However, I have decided to forgo that idea and rather post a few thoughts about something much more important – learning to come to grips with a spinal cord injury.
Over the past several days I have been contacted by three different individuals who have all recently had their worlds affected by an SCI. Each person came across my story while researching spinal cord injuries on the Internet. All of the individuals are from different parts of the country but are united by their unfortunate situations.
I have been exchanging e-mails with all of them over the past several days. Many of the questions for which they seek answers are similar, yet the stories they shared with me are all unique in their own way. I feel extremely fortunate to be able to help people understand this injury in whatever way I can. However, I wish I didn’t have to. I would be much more satisfied if there were no broken necks, no paralysis, no shattered dreams and no new harsh realities to talk about. But that’s just not the case. Bad things happen. Sometimes they happen to good, innocent people for no reason, at least not a reason we are able to discern, digest and accept.
Not everyone who has suffered an SCI is comfortable talking openly about it. However, those individuals who have found themselves able to confront the topic serve as an extremely valuable resource to others who now find themselves in a similar situation. That is why I am always humbled and grateful when others reach out to me in the hopes of hearing something, no matter how seemingly insignificant it may seem, that might help them make sense of the brave, new world they now find themselves living in.
The questions I’m usually asked bounce back and forth from the medical/scientific to the behavioral/individualistic. I am not a doctor so when I often speak about the physiological changes I’ve experienced as a result of my injury, I do so from my own unique experiences. Just because someone else may have been diagnosed with the same injury as me does not mean our bodies will heal themselves and respond in similar fashion. In fact, I very rarely have come across two people who were diagnosed with the same injury and both recovered the same.
People often ask about Complete vs. Incomplete injuries. The medical community is quick to assign classification to a spinal cord injury so that it makes sense to them and fits neatly into a specific compartment that they can treat according to what the “book” says. If only it were that easy. Unfortunately, in many cases classifying the injury may limit the type of care, physical therapy and other medical treatments the individual will receive. Much worse, classifications may limit the hope and the willingness of the injured individual to push forward. I have had doctors tell me I suffered a Complete injury since I cannot feel any sensation at the base of my spine. I have also had doctors tell me my injury is Incomplete because I have sensation in my biceps which is below my level of injury. At the end of the day, I choose to focus on what I can do and continue to get stronger through hard work. I listen to myself and my body and have stopped listening to doctors tell me what all my limitations are.
Every day I am reminded by something I can no longer do/feel/experience, etc. I don’t need a doctor to explain that to me. I am the one living with this injury, I am the one learning to accept all that has been taken from me. But I am also the one discovering all that is still in me. The human spirit and will are not things that can be seen with X-Rays and MRIs. They can only be seen in the actions of the individual who chooses to not give up and keep pushing forward, regardless of the obstacles he or she has been told lay ahead.
The point at where the physiological and psychological intersect is perhaps the most crucial moment in any survivor’s journey. It is at this moment someone is forced to make a choice to confront their plight, accept the present and decide if they want to give up or get back up. And thus begins the behavioral/individualistic questioning. These are the questions that need to be answered by the individuals themselves. If I had a dollar every time someone asked me what is the secret to being able to adapt to my new situation, I just might have enough money to seek out some experimental treatment which would allow me to move again. There is no right answer. Reality bites.
As I recently told some one, I think it’s okay to always ask “why” as long as you do not let it stop you from accepting the situation and moving forward. However, there is no recipe on how to do this. It all depends on the makeup of the individual. Some of the ways in which I was able to overcome these hurdles was to celebrate each event that allowed me to gain a little bit more independence. No matter how small, every victory is still a victory. The more independence I gain back, the stronger I feel. Whether it be through the use of adaptive equipment, such as a computer and phone, or a productive therapy session in which I can lift up my foot or balance my trunk/torso without assistance for a few minutes, I feel that I am at my best with every new victory. For me, it’s also about finding the little things that bring you comfort and help you not focus on what you can’t do. I’ve learned to enjoy the small things much more.
Unfortunately, some people may never experience the victories that can be found through physical therapy, adaptive equipment and an awesome support network of friends and family. This is exactly why I decided to start a foundation that will assist individuals in acquiring some of these tools. It is my hope that my foundation will help make life a bit easier for someone living with an SCI.
There is no timetable for “accepting” an injury like this. It is different for everyone. Some people may adapt after a few months, other a few years, others may never adapt. Just as every spinal cord injury is unique, so too are we as individuals. But as individuals, we hold the power to choose how we will respond to our situation. We should also never lose hope or stop believing in miracles and the power of faith. Will we give up or get up?
Thank you to everyone for your continued outpouring of support and prayers! I do believe that is a large part of my recovery and where I find myself today. Stand Strong!
Scott