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?

I wasn’t quite sure what I was going to write about today. Then, a daily challenge of dealing with ALS came through and guided me. One of the facts of life in living with ALS is that at some point, for most people with this disease, your epiglottis begins to weaken, making it difficult to swallow your food without some of it finding its way down your trachea. Along with this, your diaphragm tends to weaken, making independent breathing, and coughing to clear your throat increasingly difficult. For more information about these and other symptoms visit the ALS Association website.

Typically, something will get stuck in my throat during one or two meals every day. Sometimes, it is possible to cough it up in a few minutes. Other times, it can take changes of position, the use of a machine called a “cough assist”, and several hours, before the tiny morsels of food that interfere with my breathing and speaking finally release their grip on the walls of my windpipe. Today was one of those days.

A few tiny pieces of cantaloupe from my morning smoothie refused to give themselves up all the way through my lunch hour. Once the coughing subsided enough for me to be able to eat my lunch, several bits of steamed vegetables decided to join the party. About three hours later, after several prolonged uses of the cough assist, enough of the food particles took their leave for me to be able to carry on a conversation. At this point, I looked up at my afternoon aide, Lloyd, who had been helping me extract the errant remnants of my meals, and said “Are we having fun yet?”.

The harsh reality is that this process is incredibly exhausting and depressing. It is easy to find yourself drifting into thoughts of “enough already”, and to imagine closing your eyes and never opening them again. My best weapon against such thoughts has consistently been my sense of humor. Lines such as “Are we there yet?”, “That was fun!” or “Let’s do that again!”, always shift me, get at least a smile from those around me, and relieve the tension in the room.

Although I believe that I am recovering from ALS, the fact remains that my level of paralysis is characteristic of the advanced stages of this illness. While achieving health gains over the past three years that include skin quality, weight gain, increased energy, and more hand strength, there are still symptoms like a weak epiglottis and diaphragm that test me every day. I believe that recovering from a serious illness or any significant challenge requires healing and/or growth on mental, emotional, physical and spiritual levels. Humor, for me, is one way of addressing both the mental and emotional components of any program for total health. What do you think?