Friday, August 13, 2010

The Power of Will in Handling Adversity

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?

1 comment:

  1. Joe...

    It seems not that long ago, the person seeking advice from an ALS patient was you :-) I clearly remember the day you and your wife came to our home to ask questions and listen to advice. You followed a different path, as did my husband. There is no rule book when it comes down to living and surviving. A person will do whatever they feel HAS to be done to get the job done... be it coffee enemas or an experimental drug infusion.

    In my case, the wife of an ALS patient with 3 children still in school and soon going to college... I chose to concentrate on keeping our household as normal as it could possibly be considering the circumstances. It was my dream the children would grow up knowing they had a secure family, they were loved and supported at all times. That ALS was an unfortunate blip on the radar scale of life, and that I would not let it identify who they became.

    Many times in a household with an ill person, they become the focus of all else. They are the center of attention, the one everyone comes to visit, plan their life around, etc. I made it my mission to remind friends and relatives that the children still had soccer games, formal dances and so much more that they should be involved in... to not forget them in the process of tending to my husband.

    When my husband was moved out of the house to a ventilator dependent facility I broke down and cried. THAT was the day our family as a unit changed... forever. Gone were the daily chores of taking care of a helpless loved one, but also gone were the daily interactions. The twinkle in the eye of a young girl saying goodnight to her dad on her way out on a date. The smile of pride on a son's face as he made the catch that won the game would never be seen by his dad.

    Again... I renewed my choice of trying to keep the kids involved in regular activities... but I knew it would come at a dear price to me. Friends and family thought I was crazy as I worked a full time job, drove to visit my husband in the hospital an hour and a half away at least 3 nights a week, opened a retail bookstore, and ran a book warehouse in Kentucky... all while not missing the children's events.

    My car became my office, kitchen, dining room, and bedroom as I zoomed from place to place. The gas station attendant became my best friend and truck drivers were my playmates. I was trying to be everything to everyone... except myself. I knew in my heart that there would be plenty of time for 'me' later.

    Thankfully I had a lot of help. Friends provided home cooked meals many nights, a dear friend took care of the Kentucky warehouse when I wasn't there, family members and friends visited my husband at the facility, and so much more.

    As it ends up... my husband passed away after a courageous 10 years of ALS... the kids are all on the path of the life they have chosen... and finally it's time for 'me'. The BIG question that I think you need to also ask in your blog is... If you had the chance to do it all over again, would you make the same choices? My answer is a resounding YES.