My wife hates hearing what I am about to say. I’m not writing this to inspire anyone with a story of triumph and perseverance. My goal is not to pump anyone up with words of wisdom or compassion gained from my life living with injury. I am writing this to share the important but dark side of my life, the side that is generally too uncomfortable to talk about in social settings, but is much too serious to ignore.
There are two kinds of Spinal Cord Injuries (SCI). The kind that kills you instantly and the kind that kills you slowly, stalking you every minute until after years of hunting it finally wears down the body until there is no resistance left.
About a month into my rehabilitation after having had my spinal cord injury, I developed a whole new understanding of perspective and what it means to be lucky. Of course, I felt very unlucky that I broke my spine in the first place and became paralyzed. But then I looked at my roommate and realized how lucky I was that at least I was not as bad off as him. At least I had the functional use of my hands. Or let’s say I didn’t, then all I would have to do is look two rooms down the hall and I could say at least I’m not on a ventilator. That’s when I got real perspective, that’s when I realized there are so many different levels of hell in the world of SCI.
Today my health is stable and I am in good health relatively speaking for someone living with SCI. I eat smart, manage my weight, exercise regularly, and maintain a job which is also good for my mental health. However, as I write this blog today, I actually happen to be on a course of antibiotics to fight what is my 1st UTI of the year. I’ll get better from this one but what really scares me is what will happen when inevitably my body becomes resistant to the antibiotics and I can no longer fight off these types of infections. I could also name a dozen other acute health risks that are specific to people living with SCI. This is what I mean when I say SCI is a slow killer. I survived flying head first into a fence post at 30 miles per hour but it’s the small secondary complications that will get me.
This is why my wife and I feel that living with SCI is not a viable option. It’s not just about living a life robbed of able-bodied experiences. This is a matter of life and death. This is why it is so critical that research be funded to develop curative treatments that will restore not only the ability to walk but almost more importantly bowel, bladder, sexual function and a whole host of other central nervous system functions like sensation and temperature regulation.
In this day and age we have no excuses for the lack of progress in the medical treatment of SCI. Lack of progress is our own fault. If we can put a man on the moon and can cure AIDS, it tells me that we just need to pull together and work harder. Time is NOT on my side, we need to develop a cure for SCI and we need to do it NOW!
Perspective is a funny business. I am grateful for what I have but that does not mean I have to be satisfied. I want more and I need more. I want a cure for my wife, my family, the whole community of SCI survivors and myself. You may not see us but we are out there fighting for survival every day. Finding a cure will take a village and we need you to take action.
Please take action by contacting Senator Lisa Baker and Senator Judith Schwank to ask them to support and move forward PA Senate Bill 31, Pennsylvania Spinal Cord Disability Research Act. It takes less than 60 seconds and can make a world of difference.
State Sen. Baker Phone: 717-787-7428 and website
State Sen. Schwank Phone:(717) 787-8925 and Email: SenatorSchwank@pasenate.com
Thank you for your support.