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Life After Paralysis is a blog that represents a variety of paralysis community members. It is a place for open conversation about the issues and the interests of people living with paralysis, their family, friends, caregivers, and the professionals that serve them. Comments are welcome!
 
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Defying The Statute Of Limitations

28th anniversary


28 years! If this last day of January marked my 28th wedding anniversary I would be out shopping for orchids as the appropriate anniversary gift for my spouse (if I had a spouse).

Rather, it is the 28th anniversary of the date in 1988 "when the fun stopped" and I joined the fraternity of quadriplegia as I laid there, paralyzed, on a snowy Idaho ski slope.

Given a choice, which I didn't have at the time, I would have much preferred that that was the date of a wedding instead of the start of the long chapter of my life marked by more challenges and complications than I could ever have imagined.

Like the vast majority of individuals who become paralyzed, I was completely unprepared for what awaited me after January 31. I was fit, healthy and figured that I knew a lot about the human body. Being active in sports of all types had instilled in me a respect for my body, so I tried to treat it well. Regular exercise, coupled with a lack of bad habits, probably kept my paralyzing injury from doing even more damage than it did. My immediate goal was to recover completely from this injury and return to the life I had enjoyed as recently as that morning. Unfortunately, that was not to be.
 
That first year following my injury was a year of firsts. It marked my initial ride in a helicopter, my first IV, first catheter, first bed bath and first extended hospitalization. During that 6 1/2 months in Sacred Heart Medical Center's rehabilitation ward, I had my first formal interactions with a bewildering array of medical professionals, including a neurosurgeon, neurologist, urologist, proctologist, physiatrist, psychiatrist, radiologists, phlebotomists, dietitians, CNAs, nurses, social workers and at least four different types of therapists.
 
Each of the above played a different role, but they had one common goal. No, it wasn't to return me back to what was "before." Instead, it was to prepare me for the life that I was going to lead from that day forward; it was to be a very different life, indeed.
 
Precautions, vigilance and lurking dangers were to become a big part of my new life. Before my accident I had no idea that bowels had to be managed, or programmed, under any circumstances. Today that bowel program has become a process that occupies far too much time in my morning routine. The same goes for my urinary tract, which I learned is the cause of many deaths when infections strike those of us with paralysis. In the hospital my urinary output was measured by my nurses throughout the day and night, but now I just need to do a better job of reminding myself to drink more to keep the plumbing operating properly. Despite my vigilance, UTIs continue to be a reality for me and many of my friends in similar circumstances.
 
I was also introduced to many new terms that had not been a part of my early life, but needed to be taken seriously post-injury. These included Autonomic Dysreflexia, for which I was given a small red card to carry in case an EMT found me lying unconscious somewhere; I guess that makes me a "card-carrying" quadriplegic.
 
Other types of dangers were introduced to me in a more painful manner. Deep Vein Thrombosis, followed by a Pulmonary Embolism, proved to be a very scary experience. The appearance of a dreaded Decubitis Ulcer, or pressure sore, was a real cause for alarm. Fortunately it disappeared after a few weeks of care and monitoring. I realize how lucky I am in that regard, as many of my friends have spent the better part of a year in the hospital following surgery to try to patch up similar wounds. Sepsis was another one of those impacts that seemed to occur overnight, and overcoming it turned into a full blown crisis for a few days.
 
The activities of daily living were not something that had ever been pointed out to me in the past--they were just what I did on a daily basis. Suddenly, post-injury, I learned that I was incapable of performing most of them, and that I would require Personal Assistance Services to assist with them for the remainder of my life once I was discharged and away from the 24-hour care available in the hospital. Recruiting, training, paying and managing my caregivers has often been as complicated as managing several dozen employees in an office environment. Paying for those services without outside financial assistance has assured that my dream of accumulating funds for a leisurely retirement later in life has remained just that: a dream.
 
One burning question that was never answered sufficiently was "What is my life expectancy after spinal cord injury?" Some well-meaning individual shared that at least life expectancy was much better than before the introduction of antibiotics when post-paralysis lifespan was often measured in weeks or months. Someone else said that it could be close to normal, by taking good care of myself and with "lots of luck." Yet another friend said that I shouldn't worry about it but should just go out and live what time I had left to the fullest extent possible.
 
It has taken me almost as long to realize that there is no finite answer when it comes to determining the course of our lives. Every well-meaning professional who I met or worked with along the way has warned me about, or tried to prepare me for, the many challenges that awaited me. They didn't waste too much time trying to get me upright and competing in sports again, but focused on knowledge and skills that would prepare me for the future even though it was unknown what that future would bring.
 
There were many important lessons that should be shared with everyone who is newly injured. The things that I have learned by this 28th anniversary that I only learned over time include that I can: pilot an airplane; drive a race car; hang glide; sky dive; row a boat; water or snow ski; hunt; play golf; fish; sail (or even race) a sailboat; run a corporation; or become a doctor, lawyer, or judge. Obviously I must be an underachiever, since I have done only a very few of those things. Despite that, I have met several people with spinal cord injuries who do them so I know it is possible.
 
Even if someone had given me a chart that said my life would be only so long, I guarantee that I would do everything in my power to prove them wrong. The expectations of others should not become our limitations. That is why my friend was right and we should all strive to enjoy life to the fullest extent possible, whenever possible.

© 2016 Michael Collins | Like Mike on Facebook

 
Posted by Michael Collins on Feb 1, 2016 12:16 PM America/New_York

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