Envisioning a Bright Future for Our Survivors

From time to time, a comment in response to one of my columns reveals that the commenter has lost someone to ALS. The first time it happened, I paid it little mind. Subsequent occurrences aroused my curiosity as to why a survivor would continue to thoughtfully remain current with ALS related news. Ultimately I concluded it must be a healthy component of grieving. That led me to attempt to understand the mourning process beyond my personal experience.

On the Holmes-Rahe stress scale, the loss of a spouse is rated as the most stressful life event. The authors suggest the experience puts the one left behind two-thirds of the way to a potential major health breakdown. Per the National Institute on Aging, when you grieve, in addition to the emotional trauma, you can feel actual physical pain. Not only are you coping with emptiness and loss, you also may be reconstructing your own life. That can be arduous and anxiety-ridden.

When a spouse dies from a terminal illness, the plot thickens.

An ALS diagnosis, for the spouse or partner, has a pervasive impact on their sense of identity and how they live their lives. Family relations, personal finances, and careers concede to new caregiving demands. Serious illness imposes a new set of rules. Future plans and dreams take a back seat, and that entails pain — even before the pain of the actual loss.

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After your loved one’s death, you are in mourning, feeling numb, shocked, and fearful. You may feel angry at your spouse for leaving. You may even feel guilty for the occasional sense of relief that the ordeal is over.

The irony is that this is the opposite of what those of us with ALS want. In a study of terminally ill patients, the majority indicated that death was not seen as tragic for the dead, but rather for the survivors. 

In his memoir, “The Wrong Side of an Illness,” Owen Surman relates how the loss of his wife to cancer cast a spotlight on the beauty of life and the power of love. In his recovery, he was able to emotionally transcend the suffering of her shortened life. 

That is what we want for our survivors. We want to live on in you, always having your back, forever enriching your life, informing your choices, and brightening your days. We want you to live like a surfer, cognizant that you cannot command the tides. Use every available strategy that is positive. Climb back up when you fall off. Adapt. Learn. Live in the moment. Stay social. Remain engaged. Be resilient.

Frank Infurna and Suniya Luthar analyzed the multidimensional nature of resilience to spousal loss. Their findings demonstrated that, “The strongest predictors of resilient trajectories were continued engagement in everyday life activities and in social relationships, followed by anticipation that people would comfort them in times of distress.”

Perhaps the Irish had it right. In 1985, I was traveling with a business colleague from Dublin to Castlebar. In those days, the cross-country trek was accomplished by navigating from one town to another, as there was no highway linking the coasts.

Upon entering one scenic hamlet, we were stymied by what appeared to be a celebratory parade. We decided the best course of action was to retreat to a local tavern, where we inquired as to the occasion. We were told it was a funeral procession for a village resident. It was the culmination of an Irish wake. 

In mostly bygone days, Irish wakes were characterized by laughter, singing, and dancing, as well as, of course, crying. Mourners shared both inspirational and humorous stories involving the deceased. In addition to this merriment, games were played.

After several days of paying tribute, the funeral would take place, embodying elements of the wake. Afterward, the participants would gather at a local pub or at the family home, where the party atmosphere would continue. In short, it was a grand celebration.

In 2014, 80 percent of Americans said they believe in an afterlife. Count me among them. If we are correct, the truly good news is that loved ones may reunite after death. As a Christian, I believe that gracious entry to heaven is possible through faith. To all my family and friends who survive my eventual passing, I invite you to join me at that banquet. It will be the best party ever!

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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 Services, and are intended to spark discussion about issues pertaining to ALS.