Ever since my injury three years ago I have been determined to show the world that people with disabilities can be just as happy, independent and productive as those without disabilities. But is it possible that showing such positivity could mask our daily hardships to the point that the urgency for a cure is diminished?
Don’t get me wrong, it’s important that society knows that we are more able than most would imagine. But sometimes it feels like that is the only message we’re getting out. What about the desire for a cure?
A lot people with spinal cord injuries (SCI) have decided to move on with their lives and there are so many stories of wheelchair users overcoming the odds. Most of us live meaningful lives, but it is a life that none of us would have chosen for ourselves.
The media has done a good job of showing the struggles of those facing other issues such as cancer. Even if no one close to you has battled it, you know, the behind the scenes struggles of the disease. When it comes to the hardships those with a disability face, the general public is just clueless.
I often see news stories or shows such as “Push Girls” where some with this injury claim that they wouldn’t go back and change it if they could, that everything happens for a reason, or that they are perfectly content with their condition. That’s great in a lot of ways, but I personally want society to know that 99 percent of us don’t feel that way. That we want a cure and we want it now.
Many able-bodied people say its the worse thing that they could ever imagine happening to them but I think they look at us and see someone who is “strong and triumphant” simply because we have chosen to live life as we did before.
They look at it as though we have outsmarted our injury. The battle has been won because we are generally positive. Behind closed doors, however, is a battle you do not see. Choosing to survive does not mean we are ok with what’s happened nor does it mean we’re not suffering.
While not being able to walk is obviously a huge concern, there are so many other daily struggles that consume our lives. Often, these issues are more disabling than not being able to move our legs.
It is estimated that at least 50 percent of people with spinal cord injuries experience pain below their level of Injury. I am one of these people who experiences a terrible sensation which is referred to as neuropathic pain. It’s like an invisible torture. I feel like I’m being burnt alive but no one can see it.
Our bodies turn against us in other ways. Those with spinal cord injuries can suffer from debilitating muscle spasms. They are the result of our brains not being able to send the proper messages to our paralyzed muscles. A stretch, or even going over a bump in the road in our chairs can set them off. I’ve literally been thrown from my wheelchair before due to my spasms.
We are also susceptible to skin break downs, heart disease, pneumonia, osteoporosis and serious infections. The list goes on.
Cost of Living is Outrageous
The cost of living with with a disability is staggering. For example, The initial cost for a newly injured quadriplegic is between $400-700 thousand depending on the level of injury. Subsequent annual costs can reach upwards of $100 thousand. Many can not afford the care that they need. I speak from experience when I say insurance does not cover all of these costs. Unless you are extremely wealthy, there’s just no way you can instantly come up with 20 percent of the bill.
According to the United Spinal Association, a spinal cord injury happens in the United States every 41 minutes and there about 11,000 new injuries per year. 1.2 million people in the world currently suffer from SCI. This injury is not as rare as some may think.
The reality though, is that right now there is no cure.
Yes, we need everyone to realize that we are productive members of society, but while we are in our current situation there are other issues we face. The need for better medical care, better health coverage, funding for medical equipment and better accessibility.
People need to realize that just because we don’t harp on these difficulties surrounding our injuries, it doesn’t mean these issues don’t have a severely negative impact on our quality of life.
In the meantime we sit, go about our lives and make the best of it. We are not content and this injury is not ok. For a cure to become a real priority in our society, we need to educate the masses on the harsh realities.
We all need to get in on the fight. If not for yourself, then for the 8-year-old little league cheerleader now reliant on a ventilator to survive and wheelchair to get around. For a father who can’t reach his arms out to hug his wife and newborn child. What if it were your daughter, your husband or anyone you’ve ever loved?
Please check out the Unite 2 Fight paralysis website at www.u2fp.org to find out where we are in our search for a cure and how you can help.
About Rachelle Friedman
Rachelle Friedman is a c6 quadriplegic who was paralyzed at her bachelorette party in 2010 during innocent horseplay by the pool. Her story went international and has been featured on the Today Show, CNN, HLN, MSNBC, Vh1 and other various media outlets. Since then she has become a motivational speaker, blogger, and ambassador for the spinal cord injury community. Rachelle is currently writing a book due out in Spring of 2014. Visit www.rachellefriedman.com to read more about Rachelle’s story and to connect with her on twitter on Facebook.