When you lose 90% of your ability to move, it can have a dramatic impact on your self-perceptions and your expectations about what you can do to have an impact on your world, and enjoy your time in it. As a management consultant (http://www.guttmandev.com/), I was accustomed to using gestures and my voice to teach people how to communicate and influence each other more effectively. Those capabilities are now gone. My arms can barely move and my voice is too weak to produce words with the volume, inflection and tone of which I was once capable. As a parent, I can no longer comfort my children with an embrace or speak to them clearly and quickly enough to offer efficient guidance. Favored recreational activities like tennis, hiking, and skiing are, at this point, only pleasant memories. It would have been easy, given these developments, to view myself as less of a human being, a mere remnant of the person I once was, now dependent on others’ arms and legs for the satisfaction of virtually every physical need. I am certain that accepting this view would surely have put me in the grave by now, and robbed me of further contributions to the world.

There are many factors that helped me to avoid this nightmare, many of which are discussed in my book. Ultimately, I had to shift my perspective, not so much about who I was, but how I might deliver my unique contributions to the world around me. There were several other perceptions that had to shift in order for me to reach that point. First, I had to reframe my understanding of my expectations for ALS. When the doctors told me that there was no cure, and the disease must always end in death, what I chose to hear was “I have no idea how to treat this illness.” This reframing led me to search for alternative methods of healing.

Another shift I had to make was away from the notion that I could not influence people without my arms, legs and voice intact. I began to notice that people were reacting to the way I was handling adversity. Through technology, I could still reach people with my words. By taking on the challenge of recovering from ALS, I could share what I was learning about coping with adversity through the computer.

Through the combination of: strong will; clear intention; the love and support of friends, family, and caregivers; the use of technology; the benefits of alternative healing; and reframing how I see myself and my abilities, I regained my capacity to do what I have always done – teach people how to be more effective in what they do and how they contribute to the world.

ALS has given me the opportunity to understand more deeply who I am and what I have to offer. It has also enhanced my creativity in how I go about it. By taking away my physical movement, it has forced me to find other ways to enjoy the world around me. Though I can no longer hike or ski, I have learned to employ bird watching as a way to preserve my connection with nature. By reframing how I connect with, contribute to, and enjoy the world around me, I have turned my nightmares into miracles.

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Life and the media are filled with examples of people who have beaten the odds and overcome seemingly insurmountable obstacles through the sheer force of will. One of the more dramatic images that come to my mind is actually a fictional and quite humorous one with which I often identify. I am referring to a scene from the 1975 comedy “Monty Python and the Holy Grail”, which many of you are probably too young to remember. In this scene, the Black Knight is defeated by King Arthur while trying to prevent Arthur from crossing the bridge that the knight has sworn to guard. Each time Arthur relieves the knight of one of his appendages, the knight dismisses Arthur’s success with some belittling comment. At one point during the fight, with blood gushing in comic exaggeration from his armless shoulder, like water from a fire hydrant, the knight shouts, “Ah, it’s only a flesh wound!” Finally, reduced to an armless and legless torso, the defiant knight screams after the departing Arthur, “Come back here, you lily-livered coward! I’ll bite your knee caps off!” Despite the goriness of the scene, it is hard not to chuckle at the absurdity. Yet I always find myself admiring the knight’s tenacity in handling adversity. Each time I have lost a little bit more of my mobility, I have found myself reflecting on the knight and finding inspiration in his refusal to quit.

Last September, a more aggressive acupuncture treatment resulted in the loss of most of my remaining arm and hand strength. Operating my wheelchair and my computer mouse, the two remaining activities in my life that provide any physical independence, had become nearly impossible. For a short while, I felt crushed and defeated. I had arrived at another major choice point. Giving in to the depressing emotions would surely have led to more physical and emotional degeneration. That choice was unacceptable. Instead I chose to remain focused in the moment and not project my set back into a continuing pattern. I kept telling myself the weakness is now but, not necessarily tomorrow.

But I needed inspiration to regain my internal strength. Among the sources from which it emerged, there are two that stand out in my memory. One was the Black Knight. While it is difficult to bite the kneecaps off of a disease, remembering his tenacity helped to pull me through. The other source was SerenAide. For six years now, the people who participate in this wonderful evening of music have been an amazing source of emotional, physical and financial support to me and my family, and in the fight to defeat Lou Gehrig’s disease. I couldn’t bear the thought of letting them down. So I chose to fight my way back.

As a result, I have regained about 90% of the strength that I had lost. Last month I observed my 10th anniversary of living with ALS, an achievement marked by fewer than 5% of those diagnosed with this disease. It is difficult to find the words to adequately express my degree of gratitude to the people of SerenAide and to the Black Knight for the choices they help me to make.