by Dr Craig, 18 year ALS survivor
The concept of the will to live is vastly oversimplified as it is commonly used. Most often, it is simply said either that someone has a strong will to live, or that they do not have a strong will to live. This assessment is made by criteria that appear to be unclear or vague, although usually it seems to involve looking at a person’s behavior and self-reports in terms of motivation to live, to fight for life and a willingness to not avoid living fully.
How would you rate your will to live on a scale of 1-10? How do you define will to live? How much has your will to live been tested? Do you believe that the concept of will to live should take into account one’s level of commitment to health behaviors that have been shown to lead to a longer and healthier life? Do you believe that the concept of the will to live should take into account both conscious and unconscious levels of the personality? I would love to hear about your thoughts.
If someone smokes three packs of cigarettes a day and they know the statistics, do they have a will to live issue? I am not sure that there is a right answer but right now my mind is fascinated with the concept of the will to live. I have thought about it a great deal during the last few years.
In the hypothetical situation that a strict sugar free and no starches nutrient dense diet was shown scientifically to prolong life in ALS by two years, would somebody who ate a high sugar diet be said to have a strong will to live even though they are behaving in a way that is likely to shorten their life? They might be living their definition of the best life possible with a high sugar diet, yet they would be seriously risking the shortening their lives. They would literally not be willing to live the greater length of time, by not eating in a healthy way. I would evaluate this as a will to live issue, just as I would in the case of someone with diabetes eating a high sugar diet.
Someone could argue that my evaluation is misguided and that the people behaving in a disease-exasperating manner are living fully a lifestyle that they enjoy. I would counter that to choose a physically destructive lifestyle when healthy ones are available is suicide by lifestyle. I am supposing that awareness of what one is doing needs to be taken into account.
I think I’m a little biased by how I define my own situation. I evaluate my will to live on the basis of to what extent am I on every level contributing to as healthy and long of a life as possible. My definition takes into account having a meaningful life and enjoying life, because I have a holistic view. So, according to the standard by which I hold myself, I would be weak in some aspects of my will to live if I had knowledge of research about sugar being destructive to my health in some way but ate sugar.
This is a hypothetical example, yet I believe that research will show that such a sugar free high nutrient diet does lead to greater longevity in ALS. In my research, which I will soon be submitting for publication, Dr Pagnini and I discovered a significant percentage of people who said that they would rather give up years of longevity just so they could eat whatever they wanted. We have very interesting findings. One of my most important goals in life is to help people have optimum will to live, to embrace life as fully as possible in a way that will produce a life that will live with the greatest wellness for the longest time.
What about the idea that someone could be said to have a strong will even though they don’t want to live in a manner that they consider to not be living, because they have defined that condition as merely existing? I am thinking that there might be a problem with leaving it up to personal definition regarding the will to exist vs the will to live that might lead to absurdity. If someone said that the moment that they cannot walk that they would only be existing, I believe that it would be reasonable to say that they had a will to live problem. They don’t have the will to live without their body being the way they want. That is what I would say.
Many people with ALS require 24/7 care and struggle to communicate and yet have the will to live under those conditions. Their example shows that it is possible to live with meaning and not simply be existing even with total, or near total, paralysis. So, I believe people have the choice to not take care of themselves if living isn’t to the level that they want, yet it does seem to be a will to live issue. Some people may not have the will to live if they are totally paralyzed. For them to define that as merely existing doesn’t seem honest. It is possible to live in such a state with immense meaning but one has to have the will to live and create such meaning.
Maybe there is a line that we can draw, but I think the concept of the will to live becomes meaningless if we accept any definition of living vs existing. If somebody said that to be paralyzed and only able to communicate through the eyes was only existing, I would say that the person doesn’t have the will to live under those circumstances. Do you see my point? I respect your choice to want to end your life when you desire. That is between you and your maker and so it is for all of us.
My commitment to God is to do everything possible for my wellness on every level. I draw the line with artificial life support. I do not have the will to live in that way. Yet, I am as close to 100% as I imagine humanly possible in terms of my will to live by surrendering to the most rigorous holistic regimen and to serve humanity as long as my God given body will cooperate when receiving the best possible care for myself.
Some people with my body would say that they were just existing. I would say that may be true for them, although I would also say that it would be logical to state that they do not have the will to live–in the sense that they are not willing to do the work that it takes to become skillful at creating meaning. I sometimes feel quite sad about my physical losses, yet with all of my commitments to God about always seeking to meaningfully serve the world from my heart, I have the most deeply meaningful and amazing life ever.
I don’t even know where my money for survival will come from not too many months from now. Sometimes such an existence has been horrifying and has even put me in the hospital four years ago. My will to live has had me pray ever more about how to live in my heart with love no matter what. I see a psychologist twice weekly and work with a Sufi spiritual healer. All of this represents my fierce will to live and my commitment to keeping my will in optimum shape through the work I do on my heart and mind. I’ve never met another person with ALS who seems to operate like I do. I want to start sharing this experience with others. I would like to hear your viewpoint.
With love and gratitude,
Craig Oster, PhD