This New Year, Let’s Nurture Our Will to Want to Live
Columnist James Clingman meditates on living — not just surviving — with ALS
Note: This column includes a mention of suicide.
The most powerful force within people is the impulse to stay alive. Our survival instinct is so strong that we’re willing and inexplicably able to perform inhuman feats and take unimaginable risks. According to psychologist Abraham Maslow, survival is the foundation of our hierarchy of needs; nothing else matters until we have figured out how to survive.
Such is the case for many victims of terrible diseases and catastrophic accidents. I see so many valiant people online, especially younger folks, who are fighting with everything they have to stay alive, despite the odds given by doctors regarding their diagnoses. I commend them and encourage them to continue. In the words of the late basketball player, coach, and broadcaster Jim Valvano, “Don’t give up. Don’t ever give up.”
There are so many ALS advocates, support groups, researchers, and friends working every day to find ways to improve our lives. They are an army of selfless empathizers who have made it their life’s work to find the cause and cure for ALS. And then there are our loved ones. Their commitment to us and their prayers for us are immeasurably vital to our survival.
However, that survival instinct must begin and remain with us. Not only must we want to live, but we must also have the will to want to live.
How do we do that? With whatever physical ability we have, do something that feels rewarding. In my case, I was able to continue writing after my diagnosis, and what began as a bunch of journal notes ended up in a book about my battle with ALS, titled “First, You Cry.” Five books later, the last of which I dictated, I’m still writing, but now with my eyes.
Please don’t think I’m holding myself up as a paragon of strength and tenacity. It took a whole lot of encouragement and support from family and friends for me to complete those projects. The main thing for me is the feeling of being able to help someone else through my writing.
We’re all different from one another and have various motivations, and I don’t judge people who choose to end their suffering by ending their lives. I’ve been in that mental state several times. I must admit, though, that on each occasion, something entered my mind to make me change my thoughts.
Find your passion and your purpose in life and pursue them with vigor, especially you younger ALS patients. You still have your mind and you still have knowledge, compassion, and love. Use what you have now. As Chinese philosopher Sun Tzu wrote in “The Art of War,” “The most difficult things in the world must be done while they are still easy.”
Years ago, I spoke to a group of teenagers, some of whom expressed the going thought at that time: “Why should we worry about the future? We probably will be killed before we turn 21 anyway.”
My answer was simple. “Suppose you live?”
I now ask that same thing of our younger people. You could live to see a cure for ALS, and so could I, of course.
All we have is now, today, to do whatever we can. But we can do it in anticipation and hope that tomorrow will come and bring with it new opportunities and new progress in science and medicine. So although it may be challenging for many of us, let’s nurture our will to want to live and meet the new year with a new resolve, continuously meditating on the proposition that we just might live.
Stay strong.
If you are struggling with thoughts of suicide, please contact the Suicide Prevention Lifeline in the U.S. (988, or 988lifeline.org, available 24/7), Samaritans in the U.K. (samaritans.org), or Samaritans of Singapore in Singapore (sos.org.sg).
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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Karl Schachtner
James, I always find your writing very inspiring as I too struggle with ALS. This article is particularly useful and uplifting, especially at this time of year. Thank you! Merry Christmas and all the best to you in the New Year!
Susana Rave
Dear James,
your column was exactly the pep read (talk) I needed. I was diagnosed with ALS in 2019 and in the recent 6 months I have felt a noticeable decline in my ability to walk, and feeling weaker and requiring more assistance from my husband who is my caregiver. I frequently have thoughts of ending this but haven't yet had the courage. Your column gave me a new perspective and perhaps should appreciate the fact that I am still ambulatory and able to eat, speak and do minor self care activities. God bless you for sharing your journey.
Gail Albert
First, I hope you have a blessed and fulfilling new year. Your column is filled with hope and optimism for which I am grateful. I will read it to my husband as a blueprint for the coming year, something to help him feel strong and motivated. He is a positive person, someone who has always seen the glass as half full. But I know he has a hard time watching me be his full time caretaker and tackling all the responsibilities we once shared and that causes him sadness and guilt. It doesn’t matter how I try to assuage it. But he his my rock and I need him, even if he can’t move or speak. I love him no matter what and I have his back. So thank you so much for your uplifting words.
kathleen braden
God bless you, dear brother. This was so timely. Please keep writing. We need you so much.