The boon and bane of multiple sclerosis (MS) is that it changes. In my case MS took a downward turn, changing from exacerbating/remitting to chronic progressive. The word "plummeting" comes to mind. I lay on a bed day after day. Regardless of what went on in the world I lay on the bed too weak to function. I was catheterized. I used oxygen when my muscles couldn’t draw enough air into my lungs. My hands were clenched into white-knuckle fists. I took medication for nerve pain, muscle spasms and infection control. My neurologist’s prognosis included increasing weakness and susceptibility to infections, followed by death when my body weakened to the point it could no longer battle infection. All agreed my time was limited.
I'm neither young nor old. I remember Woodstock, Kent State and Vietnam. It appeared I would not see the outcome of Y2K. I was not resigned to the doctor's prognosis; I merely observed it as I would a scene outside the window, lacking strength to offer thought or druther. I did not curl up and wait to die, and yet weakness immobilized me. I had a feeding tube because I often couldn't swallow. Exhaustion came with the slightest activity, making simple things like combing my hair impossible to accomplish without help. Some days resembled a painting done entirely in gray. I struggled to live day to day, sometimes one hour to the next. Anticipating neither death nor health, I simply existed.
I was in that plane of rudimentary existence when the unexpected came . . . an improvement so slight that it was almost imperceptible. Over time and by tiny increments my body regained strength and balance enabling me to function at higher levels of ability and endurance. Gains were insignificant by average standards but since I hadn’t been able to hold a comb or chew a cookie, such things were monumental. I could see to read! Breaths came easier! I spent more time in the wheelchair instead of on the bed. I went outdoors! In May I went on a road trip. In June I discontinued the catheter and in September the feeding tube. Using my power wheelchair I motored to the nursing home down the street and visited residents. Sometimes I simply held the hands of the hopeless; I knew something of how they felt.
Occupational and physical therapists replaced passive maintenance plans with active programs. I began standing and transferring myself with the help of Isaac (my service dog at the time), and on November 20, 1998 I walked! For the first time in twelve years, I walked! From that time on my strength and balance have steadily increased. I’ve ridden horses, bicycled, skateboarded, climbed trees, camped in a tent, hiked, painted a garage, flipped a queen-sized mattress by myself . . . and I haven’t stopped walking!
| In November of 2005 I embarked on a self-designed adventure to walk through America, speaking to audiences and calling attention to the resilience of the human body and spirit. I walked to increase awareness of the potential that exists in people with disabilities. With widespread accessibility efforts, many communities are completely navigable by people with mobility, vision and hearing deficits. Not only can disabled people get to work but many have proven through day to day existence their determination, tenacity, problem-solving, and creativity, along with a refreshing ability to squeeze the most out of every possibility. |
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I live life to overflowing. Why? A better question is Why Not? My own history is evidence that we don’t know what lies ahead in the next day or around the next corner. I’m just curious to find out. Perhaps that’s phyllosophy enough for today. So, I squeeze the goo out of life and encourage others to do the same. I approach life with the unique vision of one blessed with a second chance at life. My story is not about ability to walk or about inability to walk; it’s about living fully in this moment of NOW, no matter what. In telling my story I’m able to share some of the insights to which I’ve been privy as a result of traveling a rather unique path. |
