Today my son gave me the crushing news that one of his best friends just learned that his father has been diagnosed with ALS (Lou Gherig’s Disease). This news hit me like a ton of bricks. I know his father. I admire his father. I really like his father. He has two kids in college and two younger kids that really rely on their father. This news was different than the news of cancer or other diseases because of the prognosis. Cancer and heart disease carry with them a certain measure of hope. ALS is always fatal, ultimately.
In other words, he has a “terminal illness.” I started thinking about that phrase: TERMINAL ILLNESS. We treat that phrase with so much trepidation because we dread the idea of having an illness that is terminal. Surely we realize, though, that we all have a terminal condition. It is called humanness. None of us are getting out of this thing alive. We are mortal.
In this blog we are focused on the future and on developing a powerful forward story. How do you develop a forward story when ALS is the diagnosis? Let me rephrase the question: How do you develop a forward story when you have a terminal condition?
Don’t forget, we all do.
Some illnesses carry with them a generally accepted range of life expectancy. A person with ALS has a better idea of how much time they may have left. Those of us with the terminal illness of humanness just live like we are not terminal and like we are not dying. I am really not trying to be morbid, but I am trying to be realistic.
The task before all of us is to develop a forward story while knowing we have a terminal condition. We don’t like to look our mortality in the face. We find ways to avoid the topic. One of the responsibilities we all have is to grow up and to embrace adulthood. Living with the understanding that we are mortal and terminal is a requirement of adulthood. Becoming an adult requires honesty. Honesty demands that we face the fact that we will die.
Each six months or so I update my personal Forward Story. Some call this a Life Plan. It is a look at what I plan for my future to include and be. In order to remind myself of my own mortality, I begin each new version of my Forward Story with the following disclaimer:
The purpose of this Forward Story is not to predict the future. I have lived long enough now to understand that the future cannot be predicted. Part of the excitement and challenge of life is responding to unforeseen events. The various time horizons detailed here are not intended to imply that I believe that my life will continue for any specific length. I am aware of the fact that life is “even a mist” and that my life could end at any time. This is a fact of life. I also trust in God’s providence and plan for me. Hopefully my plans are consistent with His will for my life. This story is a snapshot of my vision for the future at this particular point in time. By definition it will change with the seasons of life and the circumstances I encounter. My reason for maintaining a Forward Story is to ensure that I do not simply wander through life aimlessly and look back one day as an old man disappointed in my lack of purpose and contribution to my family and to my world.
As we go along I will further develop some of the ideas expressed in this disclaimer. For now, the main point is that I do not know how long I will live. The fact that I write a Forward Story doesn’t mean that I have any idea how long I will live. It simply means that I plan to live in a purposeful way.
My friend with ALS has a Forward Story. He planned well for his family with life insurance, and he has provided for them in other important ways. He will continue to enjoy his life and his family as he faces his disease and his future. He is also a person of faith who has a Forward Story he is relying on that extends beyond this human reality.
As I write and maintain my personal Forward Story, I will always remember that I am terminal. How about you?