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What is the Worst thing About a Spinal Cord Injury?

Simply put, it depends on when you ask.

If you would have asked me on July 4, 2008 (two weeks after my injury) I would have said everything. I remember wanting to just be able to skip that holiday because it brought back memories of swimming, playing with the kids in the park, playing baseball – essentially everything associated with movement.

If you would have asked me on Thanksgiving weekend of 2008, I would have said it was how lousy I felt. I was enduring violent swings of severe fevers (104°-105°) and freezing chills. Twice that weekend, I went into the hospital over a 36 hour period. The first time, they could not discern anything specific, and sent me home. The second time, they admitted me to the hospital in critical condition with sepsis. For the next several weeks, my life was in the balance, waiting to see if the Vancomyosin, the antibiotic of last resort I was told, would finally kill the infection that was raging in my body.

If you would have asked me in February, 2009, I would have said boredom. By then, my body had finally overcome all of the health aftershocks thrown its way from the spinal cord injury. My life however consisted of lying in bed all day, watching TV or listening to audiobooks. The initial wave of goodwill from friends and neighbors that follows a serious setback in life had subsided, and I was feeling lost and without purpose. I didn’t know what I was going to do or how I was going to do it. There was literally not a single thing I could do without the help of another human being. Christmas was over, winter was in full swing, and there was not much to look forward to. It was perhaps the low tide of my life as a quadriplegic.

If you would have asked me in February, 2010, I would have said excitement, which was tempered by a strong sense of reality, and some doubt. I had found my purpose , which was a marriage of my passion for the HVAC industry in my longtime desire to become involved in a philanthropic pursuit. All this was enabled after receiving software technology that allowed me to operate a computer, along with environmental technology which allowed me to control my surroundings without involving another human being. We had formed a foundation, had it certified as a 501©(3), developed our statement of mission, and developed a website. The next step was the one tinged with doubt. How were we going to raise money, and how were we going to raise awareness of our foundation?

If you had asked me in the last quarter of 2010, I would’ve said apprehension about the volume and pace of life changes confronting us. After my injury, our son withdrew from the college he was attending to move back home and help with my care. He was now graduating from a local university, and he planned to get an apartment near the location of his new job. Our daughter had graduated high school, and was leaving to attend college in Colorado. We were going to be empty-nesters in a house we could not maintain. It was simply too large, and the lawn and pool maintenance was not sustainable for my wife. Replacing the care and assistance provided by my son and daughter was perhaps the scariest thing of all, particularly after our first experience with a home healthcare firm. Some of those first caregivers made you concerned for your security and safety!

If you had asked me in the first quarter of 2015, I would have said health issues. During the previous four years, many of the concerns described above had been overcome. We had built a new house which met our needs for accessibility and maintenance. We had found a home healthcare company and a home healthcare aid that we could count on. She worked with us while going to school to earn her associates, then bachelors degree in nursing. Somewhere along the way, she became like a member of our family. In February, 2015 I faced my first major health crisis since my initial injury. Ironically however, they were not connected. I was diagnosed with a condition called hypertensive lower esophageal sphincter, with achalasia. In short, I had severe difficulty swallowing. The procedure to correct it was called a Heller myotomy. In a nutshell, without the surgery I would have to go on a feeding tube for the rest of my life. Fortunately, the procedure worked.

If you would ask me today, I would say the thing that bothers me the most is the simple inability to get into and out of bed by myself, or with minimal help. The nature of my condition requires two people and a Hoyer lift to accomplish this task. This completely eliminates spontaneity of getting out and about. Getting out of bed is such a simple task, one most people never give any thought to unless they are not feeling well. When you are a high-level quadriplegic however, it requires budgeting both time, and money to accomplish.

In writing this, I never expressed a desire to become whole again except right after my injury. Because of my injury, I think I have developed a deeper insight into the human condition, and perhaps my own humanity as well. Don’t get me wrong, if I could swallow a magic pill and physically go back to “normal”, I would do it as fast as my wife could give me the pill! In retrospect however, that is not the most important thing. I have found meaning and purpose in this new life, which many able-bodied individuals are seeking in so many different ways. On balance, my life is good, and I have no complaints.

If I come up with some however, I will simply have to start another column!

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