In 19 years it has never ceased to amaze me how much behavioral psychology is at play around Spinal Cord Injury. There are always the personal, day-to-day battles with victories and losses a person in a chair faces just living life, but one of the greatest obstacles toward complete recovery from a spinal cord injury is often the sluggish and competitive community surrounding it.
This community of patients, doctors, therapists, trainers, caregivers and family make up a fraction of the global health care landscape, but the trickle-down effect of the recent trend in medicine to be the first across the finish line has had enormous implications. Everyone is vying for being the best treatment, most effective technology, the accurate results and the one to hold the trademark that the motivation for saving lives and truly finding a cure has taken a backseat to this materialistic ideal of “Look at me and what I did.”
The ones needing the cure aren’t helping either. Quads are jealous of Paras cause they’re more independent… the Paras are pissed caused Quads get more attention… the men resent the women cause they can get a date easier and the women are sad because men can catheterize themselves safer. You think I’m kidding, I wish I was. I’ve received messages from spinal cord injured people telling me I was wrong to get stem cell treatment because I might be disappointed!
My all-time favorite line is when anyone, be they an industry professional or fellow spinal cord injury, says to me “I just don’t think it’s a good idea cause I don’t want you to get hurt.” Would someone please tell me how as a society did we become so passive-aggressive then have the unmitigated gall to pat ourselves on the back and call it compassion? At the risk of this post turning into a rant let me explain why I bring this up.
In order for healing of any kind to take place whether it is mental, emotional or physical it requires an environment. Think about disease, it festers in a climate suitable for its gestation. Health is no different. Why do we wash our clothes, vacuum our floors, bathe daily and brush our teeth? We want to create a healthy place for life to flourish.
The ultimate environment for anyone to make any headway in the face of spinal cord injury whether they have received stem cells, any other radically progressive treatment or not any at all there must be an equilibrium. Yes, a healthy skepticism can be a valuable thing as long as it fosters research and an honest exchange of information, but once we lose sight of the ultimate goal and the needs of those who have been injured to make a full recovery we negate any chances of true progress. I bring this to light today because we need to get on with the business of healing. I need to get on with it and so do you. We have to create a climate for a cure.
To those of us in chairs I am putting out a call… to cut the crap. Yes, being paralyzed really, REALLY sucks. It hurts and affects every single area of our lives, but we’re not alone. There’s not one spinal cord injury on this planet, there are thousands. All suffering the same fears and dreaming the same dreams. Someone may have more or less than you, but we all want to walk again. We may not all achieve it the same way, but who are we to dare criticize a fellow survivor for how they choose to reach that goal?
To the doctors, trainers, and therapists… I sure love you guys, and G-d knows we’re grateful, but do us and everybody else a favor… get over yourselves. Just because you are doing research, helped someone in a chair learn to transfer themselves or got them to a certain level of independence does not mean you’ve solved the problem. Just because a task is easier doesn’t make it better. Catheterizing is still catheterizing whether you do it on your own or someone does it for you. Learn to listen, really listen. You are an outsider and respect it. You will never be able to fully understand, so don’t lull yourself into thinking you do.
Finally, to all of us… whatever role you play in this quest… get on the same team. Support each other. If you want stem cells, get’em! If you just want to do therapy, do it! If you want to go holistic, vegan, Chinese herbal, shamanic, yoga, and get naked around a bonfire I say go for it and more power to you! We have to build the environment for a cure.
The cure. The cure is our mantra. The cure is the goal.