A Business Point of View
The following column was written by a long-time friend of mine Bill Moffatt who was diagnosed with ALS two years ago to this month. Bill has been an inspiration in the manner in which he has and is facing this devastating disease. I encouraged him to share what he has learned in his journey with ALS in the hopes that it might help others in similar situations. There are important lessons here for everyone. Here is his story.
My Journey with ALS – Lessons Learned
By Bill Moffatt
From late May until the end of November 2022, I underwent a large number of diagnostic tests to try and understand what was wrong with me. I had been feeling unusually weak and tired.
On December 3, 2022, my neurologist advised my wife and I that he was confident I had some form of Motor Neuron Disease. He asked the question “what do you know about ALS?” My answer was “I only know a little bit, but enough to know it's not good”. Over the next two months many more tests were done to narrow the possibilities. On February 3, 2023, the diagnosis was confirmed.
I had ALS. It was the hardest day of my life. The second hardest day of my life began the next morning when my wife and I told our three children.
I have always been a fact seeking individual. Unfortunately, I now had to use that curiosity to understand what I would face as an individual, and what we would face as a family. It was not pretty. Loss of mobility, independence, and eventual total dependence with a cognitive mind trapped inside my own body.
Not too long after my diagnosis our daughter sent me a quote. “Life may hand you a cactus, but you don't have to sit on it”. This particular quote, and many others like it have helped me build a framework of positivity. Using this quote as an anchor, I began to realize the rest of my life would be governed by a fundamental choice. Would I feel blessed by the life I had enjoyed, and the time I had left, or would I be poisoned and bitter for what was going to be taken away from me?
For me, the choice was amazingly obvious. I was going to revel in the things that I had done and not dwell on the things that I would never be able to do. I was going to use the time that was left to me to try to strengthen and deepen the relationships that I had with my family. I was going to use the time to say the things that we humans often leave unsaid. I was going to use the time to connect and reconnect with the friends in my life, and work to take those relationships to another level.
Because I was able to ground myself in the science associated with my disease, I felt empowered to understand and describe what was going to happen to me. Each time I relayed the news to my friends and described the path I would follow; it became easier and easier to do. I believe by repeating the likely path of my journey I was chipping away at my own denial and increasing my own level of acceptance of my fate.
I have come to understand the most important thing that we have as human beings is the ability to communicate with each other. I believe it may be the most important attribute that we have as a species. Having said that, I have also come to understand that far too often, we don't recognize the importance of nurturing our human connections. We get stuck in the busyness of our lives, and we have little time or energy left to feed our own souls and the souls of the people around us. Unfortunately, some of the best possible connection opportunities are in periods of stress. Equally unfortunate, this may also be the time when we retreat into ourselves. The fear of being vulnerable and exposing our emotions can deny us one of the most fulfilling experiences of our lives. It is the experience of telling others that they are loved and being told you are loved in return.
One of the most significant lessons that I have learned in this journey is the willingness to share my feelings. I am sick, I am going to die-but I am OK. None of us are immortal. I am going to pass, earlier than I would've chosen. But I cannot be both accepting of my fate and filled with gratitude for the many blessings in my life, while at the same time being angry with the randomness of disease. Stuff does happen! Only the luckiest of individuals avoid the difficult and unpleasant elements that are part of our human existence. We will all hit our own personal walls at various points in our lives. The question is, what do we do? Do we gather our resilience, pick ourselves up and stumble forward or do we lie there and allow ourselves to be defeated by the uncertain circumstances of life.
Defeat of our natural bodies is the reality of all of us. Some will pass away young. Some will pass away old. But for certain we will all pass away.
For those individuals who face an imminent death, there will be some period of time when each waking moment will cause a choice to be made. Will I use this day to the best of my ability to focus my spirit on positivity, or will I fail to rally the energy to be positive and, in all likelihood, decrease the quality of my life, remaining sad and angry at my lot in life.
Since my diagnosis, I have learned some important life lessons, and I wholeheartedly believe that maintaining an engaged, interactive schedule of time with friends and loved ones will produce an amazing amount of resilience.
Work actively to reach out and connect with people. People are everything! Initially, some
people may struggle with the discomfort that is associated with conversing with a fatality ill
person. In my opinion, this challenge will quickly disappear. Whether in person, by telephone or by virtual meeting, you and your connection will be immersed in your common history
You will be reminded of the happiness and genuine bond that has been part of your relationship.
Your spirit will be lifted, not just in the moment, but for hours and days thereafter.
I am reminded of another quotation that at first glance seems quite simple. “Life is an endless series of choices. First, we make our choices, then our choices make us.”
As you let these thoughts tumble through your mind; you will be struck by their deep and profound meaning.
I remain grateful for the many blessings in my life, especially my family and friends.