One Father's Extraordinary Journal of Living Longer with ALS
Did I Go Too Far?

Recently a friend flattered me with a request to incorporate my August 13 post, The Power of Will in Handling Adversity, into her monthly newsletter article. She raised a concern, however, that some of her readers might find a particular point offensive, and asked me if I’d be OK if she modified it. Her query got me to wondering if I had perhaps gone a bit too far in stressing the importance of power and will.

The section that gave her pause was the following:
“the bottom line is that both (power and will) are required for success. This is not just an issue for people with serious illnesses. People who live in a mentality of wishing, hoping, and wanting to lose ten pounds never achieve their goal until they commit to a change in behavior. The same holds true for the unemployed in a bad economy. Those who succeed in finding jobs are most often the ones who believe in their ability to do so, and are committed to doing what is necessary to achieve their goals.”

Her uneasiness stemmed from the possibility that someone who was out of work might feel as if they were being blamed for circumstances beyond their control. After kicking it back and forth a few times, we came up with the following alternative:

“the bottom line is that both are required for success. The good news in this observation is that there are people out there demonstrating what it takes to succeed in difficult times. A choice can be made to learn from their techniques, adapt new approaches, and achieve more success. Whether it has to do with fighting an illness, losing weight, winning a job, or confronting some other challenge, choice and will are always at play. They can define the limits of our success, or the potential of our opportunities.”

As we wrestled with the issue my response to her included the following:
“My life’s work is largely about waking people up to their potential, and the possibilities beyond their self-limiting beliefs. ALS has taught me something about my own self-limiting beliefs, and it has pushed me to rise above them. Sometimes people need to be challenged. Sometimes they need to face the truth. “Choice” and “will” are more than just words. They are about responsibility and commitment to change. They are what make the difference. As long as people allow themselves the “out” that circumstances are “beyond their control” they set themselves up to abandon their responsibility and their power. The issue of a circumstance being beyond someone’s control is irrelevant. The only thing that makes a difference is how one chooses to step up to the challenge.”

While writing these words, I felt a surge of emotion that amplified for me just how strongly I felt about making commitments and exercising choice and will. In living with ALS, I have had to commit to practices that many would shy away from in order to preserve my life and maintain the possibility of recovery. During my career as a management consultant, I met a wide range of people, some of whom were as strong-willed as I, and many who were not. As part of the work, it was often necessary to provide emotional support to people trying to implement or respond to difficult changes. Whether my clients were strong-willed or not, it was always a balancing act to be sensitive and understanding while challenging them to reach higher and accomplish more than they thought possible. It was in this spirit that I wrote the original words in the August 13 post. Do you think I went too far? I’d love to hear your thoughts.

Comments (1)

One of the components of my treatment plan is acupuncture. I normally go to a doctor of Chinese Medicine twice a week for these treatments. After each session, I almost always feel a noticeable boost in energy which usually results in more hand strength for controlling my wheelchair. For the first couple of years my body had difficulty holding on to the energy gains from session to session, making it difficult to sustain any real progress. In consultation with Dr. Xie, I determined that a major deterrent to progress was the levels of toxicity in my body. Over time, as I detoxified, we began to observe very small incremental improvements in energy flow.

This summer, due to some logistical complications I took an extended break from these treatments. During that time, my healer, José, reported that we had made significant progress in cleansing the toxins from my body and are now focusing mostly on building strength. All summer long, José has been lamenting the hiatus from acupuncture, feeling that we were missing an opportunity for accelerated healing. So, when I told him that I was starting up again, José was very excited. At the end of my second treatment this morning, Dr Xie was pleased to inform me that my energy held up over the summer, giving us a solid basis for continued improvement.

While this is all very good news, the changes from José’s and Dr. Xie’s work are so incremental that it is difficult to observe in the short term. It is only when I look back over several years that I can be confident of the positive results achieved from the various treatments I have employed. There have also been many disappointments along the way. So, although I have great confidence in both José and Dr. Xie, I struggle with anticipation of the results to come.

On the one hand, I don’t want to get my hopes up too high and suffer a crushing disappointment. At the same time, I know that the strength of my belief is a powerful factor in my recovery. It is a true rock and the hard place dilemma. I can look back and find encouragement in achieving increases in energy, weight and hand strength. Yet during that same period, a very slow deterioration in my speech clarity reminds me of the traditional medical community’s assertion that recovering from ALS is impossible. My salvation in the midst of this struggle is my favorite affirmation, “I believe in living in the moment, total present time, and loving the challenges”. The moment I start to anticipate what might be, I am cast into turmoil. As long as I stay focused in the present, I can observe what I have, feel grateful for it, and remain positive about the possibilities for improvement.

How have you dealt with the conflict between wanting to avoid disappointment, and wanting to think positively about your chances for success?

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