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.

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During my life before ALS, the thoughts that often filled my mornings had to do with things like how quickly I had to be out the door, which clients I’d be seeing that day, which projects had to be addressed, which planes or trains had to be caught, what office work needed to be done, and when I could fit in a workout. These days, my focus is quite different. As Diane scurries around our bedroom preparing to begin her day, I am slowly stirred to consciousness. The first thing that usually captures my attention is the resistance of my left eye to open. Between the overnight secretions of my eyelids and the minor weakening that ALS has achieved over the muscles that control them, most mornings I awaken to the sensation that someone has mischievously crazy glued my left eye shut. In the struggle to free it, the thought often enters my mind that ALS may be winning the battle of the eyelid. Thus, my first choice of the day presents itself. Do I give in to the panic of projection that one day my eyelids may not part, and succumb to the disappointment, frustration, and fear that accompany that thought? Or, do I choose to remain present to the moment, stay calm, and save my energy for opening the eye? So far the latter choice has consistently served me well.

Having won this battle, and achieved a little more consciousness, I proceed to the recitation of my gratitude list, taking the opportunity to revel in the gift of another day.. Recounting the many blessings and joys in my life focuses my mind for the day on being present to the positives. And so I begin: “I am grateful for the trees, the shrubs, the grass …,my wife…, children…, family, friends, congregation, caregivers, colleagues, my home,….” After the gratitude list comes a series of affirmations, a series of statements designed also to focus my thoughts in a positive direction. A good resource for learning this process, and designing a list of affirmations that will work for you is Louise Hay’s book, You Can Heal Your Life. My list includes statements like: “I am accepting the abundance of healing energy in the universe, and I am grateful to participate. I believe in living in the moment, total present time, going with the flow, and loving the challenges. I am grateful for the gifts in my life constantly. I live in gratitude and abundance always.”

My list has grown to more than 40 affirmative statements that I have now been reciting every morning, without fail, for the past four years. Sometimes, I have completed the list by the time my health aide, Jimmy, enters the room with a cheery “Good morning, Joe. How are you today?”, as he begins to prepare me for the day. When I have not finished by the time Jimmy arrives, I simply continue silently, as he takes me through the morning paces. If he or Diane has a question or comment, I will address it and then calmly return to my affirmations, always remembering that the purpose is to keep my mind operating in a positive energy field.

Inevitably, thoughts will emerge about activities I used to enjoy in which my body will not currently allow me to participate. Thoughts like these have the potential to drag me into a dark place filled with sadness and other negative emotions, which do not promote healing. Each time my thoughts lead me toward that dark path, I use affirmations to shift my attention back to the gifts and sources of joy in my life. Suddenly, I am noticing the antics of the squirrels, birds, and deer outside my bedroom window that quickly bring a smile to my face. Each time my thoughts drift to the darkness, I am challenged to make a choice about where to put my attention. Living with ALS provides a constant stream of opportunities to make such choices. In order to hold open the possibility of recovering from ALS, or other serious illnesses, experience has shown me the importance of keeping the mind positively focused to promote healing throughout the body. Attending to the mind/body connection has contributed to improvements in my sleep pattern, elimination of chronic pain, and improvements in body functions. So, I work very consciously to enjoy the gift of each new day, and to make choices that promote my healing.

What experiences have you had that demonstrate the health connection between mind and body? Let me hear from you.

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