One Father's Extraordinary Journal of Living Longer with ALS
Every Day a Gift, Every Day a Choice

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.

Comments (2)

About a week ago, I was visited by a new friend with ALS. He came with his wife and brother-in-law (his primary caregivers) to seek advice on dealing with the illness. It was interesting to compare the differences in our conditions. While he has been living a confirmed diagnosis for three years less than I have, his progression is in some ways worse than mine while in other ways not as severe. On the plus side, he still has modest movement in his legs (although not enough to support his weight), and he does not require 24/7 breathing support. On the downside, his speech is very difficult to comprehend, there is no movement in his arms and hands, his weight is very low, and he constantly battles sadness.

In the short time since our meeting, I have exchanged several emails with his wife clarifying suggestions I had offered. These exchanges caused me to reflect on the vast array of remedies and procedures with which I have experimented over the past eight years to arrive at the protocol which is currently keeping me stable and generating modest improvements. Many of these experiments have drawn amazed reactions from friends who could never see themselves employing such tactics – things like a raw vegan diet, lemonade cleanses, coffee enemas, and colema boards (a variation of colonics) to name a few. I have had conversations with several PALS (people with ALS) who came to pick my brain on what has worked for me. Few, however, have committed to the changes or procedures I have recommended, which brings us to the issues of choice and will.

These topics came into very sharp focus for me about four years ago, when an alternative health practitioner named Tom Woloshyn came into my life. One of the first things he asked me was, “Do you want to live or do you want to die?” I was startled. It seemed obvious. I had taken it for granted. Confronted with Tom’s question, I had to ask myself to what lengths I was willing to go. Suddenly it became clear that the potential for success was highly dependent on what I really believed and was actually committed to doing. Tom helped me realize that if I was to have any hope of recovering from ALS, I had to decide whether I truly wanted to live, and how much. In discovering the depth of my will to live, I found the power to choose to employ healing practices to which most people would react with “Are you kidding me!?”

I sometimes ponder which comes first, the strength of will or the power to choose. It seems to me a bit of a chicken and egg question. The choice to do what is necessary to work through a difficult challenge can certainly stimulate the will to succeed. At the same time, the will to succeed, no doubt, drives the choices we make. Which one comes first is an interesting debate for philosophers. In pragmatic terms, the bottom line is that both 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.

What struggles and successes have you experienced that demonstrate the power of will and choice?

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