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?
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’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 nondisabled people say it’s 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 referred to as neuropathic pain. It’s like an invisible torture. I feel like I’m being burned alive but no one can see it. We are also susceptible to skin breakdowns, heart disease, pneumonia, osteoporosis and serious infections. The list goes on.
And the cost of living with a disability is staggering. For example, the initial cost for a newly injured quadriplegic is between $400,000 and $700,000, depending on the level of injury. Subsequent annual costs can reach upwards of $100,000. 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.
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.
— Rachelle Friedman,