I have a confession to make. The first 23 years and 322 days of my life I was the poster boy for what’s wrong with my generation… politically. I happily (and consciously, mind you) bunched myself in with the pathetically apathetic group of nonvoting twentysomethings. I viewed politics as nothing more than semantics. "Why should I vote? It’s not like any of this stuff really affects me directly." I want to take this opportunity to apologize to my country, because I took nearly six years of my voting privilege for granted.
It’s disturbing that it took my becoming a quadriplegic for me to recognize the err of my ways, yet somehow fitting. I can’t help but recognize the irony. The system I once said I was beyond is now the system I rely upon. And sadly for me, my lack of prior participation leaves me struggling with a system which doesn’t seem to be on my side. As if I don’t have enough on my plate, I find myself fighting tooth and nail for things I should not have to. The most obvious struggle to date has been that over equipment.
As I have before, I will use the wheelchair industry as an example. Take one look at me, and it is obvious that I would need a power wheelchair in order to lead anything that resembles an independent life. Apparently, to the state, being a quadriplegic is not reason enough. In order for the state to provide me with a power wheelchair, they need letters of justification from both a physical therapist and a physician detailing the reason I need each and every piece of equipment on the chair. Does the fact that I need footrests really need to be argued? Apparently so.
After every justification letter has been assembled, it can finally be submitted to the state. Right off, the state takes one month to consider things. You are warned ahead of hand that most all submissions are turned down the first time. And as expected, my chair was turned down after the first 30 days. Reasoning? They needed further justification that I needed head controls instead of the standard (a.k.a. cheaper) hand controls. Seriously? The fact that I can do nothing more than shrug isn’t a good reason? Guess not. It took almost a year of monthly rejections for the state to finally approve my wheelchair. Fortunately for me, some wheelchair companies will give you a loaner for the time being. In the big picture, wheelchairs only give independence. Some equipment is necessary for overall health.
One of the biggest causes of compromised health in quadriplegics and paraplegics are skin issues. Pressure ulcers can lead to problems ranging from further loss of independence, to infection, and ultimately amputation in severe cases. Because of decreased mobility, those of us who are paralyzed have to be extra careful with positioning. Having an air mattress for your hospital bed greatly reduces the risk of skin breakdown. This one piece of equipment costs around a few thousand dollars. This is an item the state refuses to pay for. They will rent one for you, in the event that you get a pressure sore (inevitable on a normal hospital bed), and then take it away once you are healed.
Financially alone, this makes absolutely no sense. Instead of shelling out a few thousand dollars for a bed that virtually prevents skin breakdown, they will rent it for me indefinitely only to take it away until I get a pressure sore again in a few months. They would rather pay tens of thousands of dollars on countless reconstructive surgeries and amputations than buy a relatively cheap piece of equipment. They will pay thousands of dollars a day for you to stay in the hospital after these procedures, but refuse to take actions that would prevent that pain and suffering altogether. I fail to find the logic.
Health care in general has become so compartmentalized it should no longer claim the name. Maybe we should rename it "health obligation." Because the industry is overridden with redundant stipulations and regulations, it has become so sterile and callous that the compassionate element is no longer apparent. Doctors don’t care who you are, they just want to remedy the problem and walk away. This in turn leaves the nursing staff (unsung heroes in my eyes) with more on their plate than necessary. Lately, rehab facilities have forgotten that rehab is short for rehabilitation. They focus on getting a patient’s body ready to leave the hospital, but not their mind. Personally, I left the hospital completely unprepared for life as a quadriplegic. But I could breathe on my own, so their mission was completed. Therapists are just not given enough time with you to accomplish much.
Because of the system, each institution only does their part, and washes their hands of you when the job is done. The lines of jurisdiction between each sect have become comparable to the Berlin Wall. I came face-to-face with that fact upon my discharge from the hospital. The therapists from the hospital that were in charge of obtaining my equipment for home (wheelchair, hospital bed, etc.) were forced to hand me over to home health officials with a big fat "Here you go… have fun," taking things back to square one. Because hospital therapists are not allowed to deal with home health too much, you fall into the hands of people left completely in the dark. Were they able to work together, even somewhat, the transition from hospital to home would not be such a formidable and frightening task.
Now I understand that it’s difficult for legislators and lawmakers to understand my plight, considering most of them have never been in direct need of the benefits over which they preside. At the risk of sounding somewhat sadistic, I almost hope some of these men and women see someone close to them end up in a position of need like mine. If that’s the only way that the repercussions of the stances they take can be felt, then maybe it’s necessary. Because as it stands now, the lives of state dependent quadriplegics are unnecessarily difficult due to a system without perspective that works against them.
So I guess that leaves it to us to make change. Get informed, make your voice heard. And to those of you who are like I was two years ago, I beg you to reconsider your views. While you may not think things pertain to you at the moment, you never know what you or your loved ones could need tomorrow.