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,
Dr Craig
Craig Oster, PhD
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Dr Craig, Thank you for this interesting article about a very important aspect of health. In my experience, I find that will power is often a function of health. When a person is not well physically and/or emotionally, this is often accompanied by diminished will power and lack of vital energy. In other words, no matter how clear a person is about the fact that eating sweets, for example, is bad for health, he or she nevertheless may still lack the discipline or will power to stop eating them. In homeopathic thinking, a craving for sweets is a symptom just like headaches, fatigue, or any other symptom. Proper homeopathic treatment, therefore, would aim to restore balance and, in the process, the sweets craving should fade away naturally such that the person would no longer have the same interest in consuming sweets. Alternatively, if I as a physician were to coax, pressure, or warn my patients about the hazards of processed sugar, they might try and then fall short of changing their diet or they might resist my advice outright. In this sense, I often view individual food cravings as part of the illness itself.
Dr. Malerba,
Thank you for your comment. I agree with your view. I do use homeopathy and I believe that one of the most remarkable aspects of my story that I have yet to delve into, is the physical exhaustion and suffocation that went on with me for many months. I had to discipline myself and surrender beyond anything I ever imagined to holistic treatment, including twice a week psychoanalytic treatment. I understand about illness challenging the will to do what it takes to heal and fight for one’s life. God willing, I will gain further insight into what helped me reach so deep within to find the will to strengthen my will. Bless you.
Dr. Craig,
I am very, very glad you have been an 18 year ALS survivor – and hope you keep on like the energizer bunny, going and going.
I also respect one’s choice to want to end life when desired, but that’s a personal choice one has to make between one’s self and one’s maker, and so it is for all of us. God gave us life to live to the fullest, but he gave and can take away at his own will.
My mother, a bulbar ALS patient, also required 24/7 care and struggle to communicate and yet she had the will to live and survive with dignity under such conditions. My mother was a strong, healthy and still full of life 70 year old woman. She was admirably brave, unlike many of us. We did everything possible for her wellness on every level, but she also drew the line with artificial life support, until her very last breath.
Only God knows why fine human beings are put thru such tests and struggles, but no matter what and/oor how hard deteriorated life may be,
I truly believe that giving up or surrendering to suicide is certainly not the answer is not an acceptable alternative, unless a wimp.
Amyotrophic Lateral Sclerosis (ALS) aka: Lou Gehrig’s Disease, named after the famous New York Yankee’s American baseball player in the 1920s-1930s, who died from this disease, also called Maladie de Charcot. It is a motor neuron disease (MND) usually fatal. ALS is a progressive, neurodegenerative disease caused by the degeneration of motor neurons, the nerve cells in the central nervous system that control voluntary muscle movement. It is one of the most common neuromuscular diseases worldwide that affects people of all races, ethnic backgrounds and financial means without discrimination.
Between 1 to 2 people per 100,000 develop Lou Gehrig’s Disease each year.
ALS most commonly strikes people between 40 and 60 years of age, but younger and older people can also develop the disease.
The onset of ALS may be so subtle that the symptoms are frequently overlooked. The earliest symptoms of Lou Gehrig’s Disease may include twitching, cramping, or stiffness of muscles; muscle weakness affecting an arm or a leg, and/or slurred and nasal speech. Eventually, ALS weakens muscles, including muscles used for breathing, until they become paralyzed.
Men are affected slightly more often than women.
Scientists have not found a definitive cause for Lou Gehrig’s Disease, but the onset of the disease can be linked to a variety of risk factors.
It is believed that one or more of the following factors are responsible for the majority of Lou Gehrig’s Disease cases. Researchers suspect a virus, exposure to neurotoxins or heavy metals, DNA defects, immune system abnormalities, and enzyme abnormalities as the leading causes of the disease.
Reality Check. Do the math to determine how efficient a killer ALS truly is. Unlike other diseases such as cancer, where there is still no cure, it has treatments such as chemotherapy, radiation, drugs, etc. ALS has no treatment and much less cure yet, to even slow and/or halt the “irreversible” cell damage progression from trapping one’s own paralysed body. Sure, there’s no cure at this time. But research continues and treatments are being explored.
Dr. Craig, I wish you to last and be another long-term survivor of ALS, such as internationally known famous Physicist famous Professor Stephen Hawking, who is the only well-known example of a person with MND, and has lived for more than 40 years with the disease.
He also questioned how something like this could happen to him, wondering why he should be cut off in life in such a manner. While he was in the hospital he saw a boy he vaguely knew die of leukemia in a bed opposite of him, something he says was, “not a pretty sight.”
He understood then that there were people who were clearly worse off than himself; at least his condition did not make him feel sick. Whenever he felt inclined to feel sorry for himself, he remembered that boy.
As long as you can breathe, continue to fight this battle and do service to help bring awareness to the world of ALS to those who don’t care and/or are less conscious of such disease, like we were, because we had not even heard about it, until it happens to strike home.
ALS CAN HAPPEN TO ANYONE.
Please continue to pass the word and Let’s “Help Strike-Out ALS”, right out of the ballpark, for good and once and for all.
Thank you for your kind and thoughtful letter. Thank you for your work on raising awareness about ALS. Bless you and your family. Love, Dr. Craig
Thank you for this article. I wonder if you are still alive, and finding meaning. I am tired of the grind of life, it just kind of meanders. A person can do different things, but life in general has a pattern to it that never really changes. I miss the people who have died, that I loved. It seems that life is just finding things to fill time, till our time comes to leave, we follow the pattern, even Free Spiritslike me get pulled back into the collective unconscious pattern of life. Maybe the more meaningful activities you have to look forward to the more meaningful life is. Yet these meaningfull things to me are just another way to fill time. I’m just over being tired of doing time on planet Earth. Even on The Mystic Path, and consciousnessly being a loving servant to the Universe everyday, I’m still done engaging in living life with meaning. I hurt that we are not given more information about where we come from, where we go at death of the body, and what we are supposed to do between birth, and death. I believe in reincarnation, and I will not come back here again without more information on living a purposeful life. I’ve lost my will to live.
Meaning is critical. I have found psychoanalytic psychotherapy extremely helpful in helping me strengthen my will to live. Keep connecting with people.