Envisioning a Bright Future for Our Survivors

Rick Jobus avatar

by Rick Jobus |

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awareness, monster, painting, speech, covid-19

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!


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.


Dave Reckonin avatar

Dave Reckonin

"...will you dance to your partner, around the floor your trotters shake.
Wasn't it the truth I told you?
Lots of fun at Finnegan's Wake.|"

Dave Reckonin avatar

Dave Reckonin

"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."


A spousal survivor may be acutely interested in, say, observing and learning from the 'blindfold darts' match of lab experiments, illogically anticipating scientific breakthroughs which might remove the fear of their children and grandchildren being at-risk from the brutal murderer we call ALS.
A practical, human approach. This is quite separate and more consuming than grief.

As regards grief, there are numerous 'professionals' all desperately telling survivors how they should feel and how to 'get over it.' Sometimes this has a dollar motivation. Fact is, ALS is a 'minority sport' so the charlatans dispensing 'advice' usually have no idea how an pALS survivor feels.

Something else which might affect survivors is the sense of Theft. An otherwise decent human being, perhaps who has mainly served and assisted fellow humans and in a professional and, at home, a familial capacity, has had everything taken from them and that includes 'hopes and dreams' for the bizarrely-named 'Golden Years.'
This aspect of course possibly takes us down the road of 'religion.'
Equally bizarre is the proposition that the God who loves us unconditionally, is the same God who created the universe and everything in it - which of course includes ALS. This juxtaposition is patently fatuous to those of a rational, reasonable and logical way of thinking.
The Catholic Church explains it all with a staggering glibness and hubris. We are fallen people and we live in a fallen world, therefore we should expect retribution as Vengeance is His.
Spare this thought for the tiny patients in the Pediatric Cancer Ward, who have a very short time to live and who have not lived long enough to sin against others or to deserve retribution.
'God lets Nature take its course' is yet another glib and bibulous platitude of the self-designated righteous. They are unable to understand that this is just another way of saying 'God has given Nature a License To Kill Kill Kill' and by the look of it Nature works hard at fulfilling the re-licensing requirement.

"Owen Surman relates how the loss of his wife to cancer cast a spotlight on the beauty of life and the power of love."

I say to Mr. Surman that he should be ashamed not to have seen the beauty of life and the power of love when his wife was living.
If it took bereavement to enable him to see these things then he was woefully lacking in vision, for Nature can be beautiful as well as murderous.
"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."

Another 'professional' view but I wonder if Holmes-Rahe can support that 2/3rds of the way ...thing with statistics ?

I'm a pALS survivor and I don't give a rat's who knows it because I don't care. And the reason I don't care is that very few people know how I feel or more importantly how I think.

One of the few things that gets my goat is the utter bulls**t in the ALS world of research, which is constantly claiming that progress towards effective treatment is happening and success is just around the corner. This is a lie. Those claiming should be ashamed of themselves. A few hours of one's own research will show any interested enquirer that all progression is related to uncovering even more baffling ALS symptoms.

I may return to this subject. Don't say I didn't warn you.

fran lancaster avatar

fran lancaster

Well, I for one, love to read both perspectives - Rick's and Dave's. My husband passed away a little over a year ago after living with ALS for 6 years. The reason I stay in touch and engaged is 1) to feel connected to those with ALS, their caregivers, the professionals, and all who are touched by this awful condition. And 2) to help gain some insight to how others cope and how it differs (or not) from my own experiences. We felt very cut off with this disease and I was so full of everyday tasks as a caregiver that I could not even go to support groups or be in chat rooms. Now I have more time to seek this out. Of course I am always hopeful that I will read of progress of a cure and I pray earnestly for one. But I also feel an overwhelming need to just stay close to this disease and to hear from those who are living their lives as my husband lived his. My husband lost everything, and I now feel as though I have lost almost everything now that he is gone. It IS a physical pain and one year has done little to remove that pain. I love your words Rick, when you state that your wish is to live on in your survivors. I believe this was what my husband wanted as well - to have my back and to continue to enrich my life even in his absence. I have lost both parents in a car accident, a younger brother to cancer and now my husband to ALS - all in the space of 5 years. But losing my husband was the biggest loss. I used to think it was harder to be the one left behind but after seeing what my husband went through (and what you both are going through) with this disease I no longer think that. I have to remind myself that WE ARE ALL GOING TO DIE but ALS is an unbelievably cruel way to go. I pray for you both. Thank GOD that my husband believed in the Lord's promises. It helped him immensely. Even though I am sure you Dave, are not interested, I pray for you and that you allow God to give you peace. I am going to participate in the ALS Walk in a couple of weeks and I will walk for my husband Jimmy as well as for you Dave, and you Rick. I wish I could take away this burden that has been placed on you. You are both in my thoughts constantly.

Dave Reckonin avatar

Dave Reckonin

I wish you all possible peace of mind,Fran. After what you have been through you deserve mental solace.

Dave Reckonin avatar

Dave Reckonin

"I believe that gracious entry to heaven is possible through faith."
So, those who do not believe in the 'All-Loving, ALS-Imposing God' don't get a look in. I see. OK.

I have beliefs too, of course.
I believe that, if God exists, he has created ALS and ensures that several thousand random people are diagnosed with it it each year and thus they suffer a terrible affliction. I believe that as a result of his horrifying violence I cannot genuflect and praise the instigator of such a brutal horror because he is not worthy of any praise. He cannot be regarded as 'All-Loving' as this represents a fatuous contradiction.
Life after death seems entirely possible and there seems to be oodles of evidence that it occurs. My suggestion is that something trans-dimensional takes place.

If God punishes me for not praising and adoring him even if I have, hopefully led a decent life, then that would confirm to me and I suspect many others, what a nasty piece of work he can be.

Rick Jobus avatar

Rick Jobus

Dave, I know of only one guaranteed way to get to heaven. I hope there are more.

Dave Reckonin avatar

Dave Reckonin

When you get there Rick, and I hope you live as long as you wish, you might ask Him some searching questions. ( I won't be able to as I will be in a much warmer location with some unsavoury company.)
Such questions might include:-
1) What purpose was served by afflicting so many people with so destructive and violent a disease, destroying their well-being, their families, their hopes and dreams, and the not unreasonable desire of most of them to live a decent respectful and honest life ?
2) Would He not agree that, from the perspective of those who did the praying, those prayers were simply an unanswered way of stroking His ego?

Miguel avatar


I very often walk the line of faith, living with a pALS sibling. But as his condition is worsening, my faith in loving God has diminished. Like David, I also am skeptical that this horror was by design, and that something as almighty and powerful would stand idly by while their child screams and suffocates to death. Like David, I choose a life unencumbered with the platitudes and adages religious texts provide. We need to accept a terrible disease, and part of that is to realize that a Higher Power will not save us, although it may perhaps inspire us to endure with an “end goal” of peace.

WIsdomAndReasonMike avatar


Thank you Dave.
I agree with your comment 100%

Dave Reckonin avatar

Dave Reckonin

The subject of prayer is quite a fascinating one.
We can easily envisage the history of ...I don't know...ten billion prayers that have been offered up by families and friends of pALS since the illness was named?
If we ask ourselves what those prayers have achieved on their own we must obviously draw the conclusion that they have been in vain and thus worthless. Perhaps they are nothing more than a gramme of soma to those who do the praying.
Why is that ?
I think it is because of one of two possible reasons. One: the supposed deity to whom those prayers are addressed does not in fact exist and thus the supplications are valueless and a waste of time. Two: the deity to whom the prayers are offered up does in fact exist, and that deity hears them, but chooses to ignore them or declines to respond with help. Again then those prayers are proved valueless to the pALS and a waste of time for those who pray.
What then will rid the world of the brutal murderer we call ALS?
A very reasonable, logical and rational answer to that question is, as we all know, the discovery of an effective treatment or, more wonderfully, a cure.
Where will this medical salve come from?
Well, history shows us that treatments for other awful diseases have come from discoveries in research laboratories.
Logic dictates that the more research there is, the more likely a treatment will be found.
How then do we as human beings increase the amount of research ?
It's not rocket science to suggest the very practical approach of ...wait for it...raising money.
Now... let's compare the relative advantages of both methods of approach...
Pray or Raise Money?

Not difficult to draw a sensible conclusion is it?

Rick Jobus avatar

Rick Jobus

I do both Dave.

Dave Reckonin avatar

Dave Reckonin

If you do both then you see that one (research) has more chance of success. The prayer one is a waste of your time as it has produced nothing. Nothing; for you, nor anyone else doing it.

In your prayers, what exactly are you asking Him for ?

Dave Reckonin avatar

Dave Reckonin

If Rick's view of there being only one guaranteed way to gain entry into 'heaven' is by having faith in the deity that is demanded in the bible, then a lot of decent, kind, honest, loving, helpful and altruistic people will be with me in Hell.
Perhaps it won't be such an awful place after all ?
Mmmm, how about that .....things are looking up for me ....

Diana Belland avatar

Diana Belland

I enjoy reading Rick's columns but I also find Dave's perspectives interesting. I'm 74 and for most of my life, I've been an atheist. I now describe myself as an "agnostic atheist" https://en.wikipedia.org/wiki/Agnostic_atheism. The universe (or multiverse) is such a vast and mysterious place that I feel I cannot rule out the possibility that a deity might exist. If there is such a one, however, I believe it would be non-gendered and all loving/accepting towards atheists and believers alike.
In November, 2018, my husband and I lost our 28 year old daughter to suicide induced by mental illness. Four months later, I was diagnosed with ALS. A close and deeply religious friend of mine tried to console me with the words, "divine plan." Like Dave, I've led a decent life so the idea of a "divine plan" that includes the death of a beloved child and affliction with ALS leaves me baffled. But, of course, my story is not unique: good people all around the world are suffering and dying 24/7.
In the months that have passed since my daughter died, I have become interested again in the phenomenon of near death experiences. Dave, I was intrigued by your comment:
"Life after death seems entirely possible and there seems to be oodles of evidence that it occurs. My suggestion is that something trans-dimensional takes place. "
Perhaps you could tell us more about why you believe that life after death is possible. Thank you, Rick, for your column and, Dave, for your comments, both of which I enjoy reading regularly.

Erika Finamore avatar

Erika Finamore

I always read abt ALS and any research being done
I lost my husband 06/2017 Nd I find it disrespectful ( to my husband) not to keep up on this monster disease

Dave Reckonin avatar

Dave Reckonin

I am real busy today but I'll gladly post my views over the weekend.

Dave Reckonin avatar

Dave Reckonin

In the meantime: Look out for this fascinating book :
"Surviving Death: A Journalist Investigates Evidence for an Afterlife

Leslie Kean

Dave Reckonin avatar

Dave Reckonin

All the world's main religions believe firmly in Life After Death. Nothing radical there. I think that Death is trans-dimensional. String theorists claim there are probably 11 dimensions and I think one of them is an energy-based form that we might call Life After Death. I felt this was true long before I read Leslie Kean's book, but I like that book because it explores the subject in a professional journalistic way.What gets my goat is that we are indoctrinated by zealots from an early age about the All-Loving God before we are able to think for ourselves and ask pertinent questions. Such is the coercive nature of organised religion. Let's examine the evidence for an All-Loving God... our planet is full of natural occurrences that like to kill us. Tsunamis, hurricanes, mud slides volcanoes, earthquakes. Snakes and Big Cats like killing us if we are careless.There are 7000 rare diseases most of which enjoy killing us. Go up more than about 10000 ft and there is nothing to breathe. Go to another planet and there is no atmosphere and barren desolation. All this indicates an All- Loving God ? More like evidence of evolution of Bio-Chemistry and Astro-Physics.
More to follow:

Dave Reckonin avatar

Dave Reckonin

Who says "God Loves You" ? Some very devout people in the Bible. Wonderful gurus and fine people. But essentially statements without evidence and therefore unconvincing. We don't have to be bible-bashers to lead a decent life. Decency and respect for others can come from altruism, not just The Bible, the Torah or the Koran.
So, little evidence of an All-Loving God.

Evidence of Life After Death? There's quite a lot of this if one is prepared to research for a few hours. It can range from the stultifyingly boring such as " I think I saw a Ghost !" to the very serious. Take for example the situation of the Spiritualist Church. A devout Christian church but where communication with the dead occurs every week, year in year out. Verifiable and witnessable. Physical Mediums? Take a look at the life of Stewart Alexander. Look at the essays within serious Psychical Research bodies. There's lots and lots of evidence of Life After Death.

Is there a God? A creator ? Maybe somewhere far away but if so he has abandoned us to his local Hit Man- ie nature. He's certainly not All-Loving as we can see by just looking around us. Families stricken by ALS. Little children in the cancer ward who won't see their 5th Birthday.

Dave Reckonin avatar

Dave Reckonin

Diana, when someone describes the horrors you have been through as '(God's) Divine Plan' ask them to set out in detail what this Divine Plan is all about.
You'll soon see them stammering, stuttering and completely at a loss to articulate it.
It's just another meaningless glib platitude, designed perhaps in a well-meaning way to make you feel a bit better, but essentially it is intellectually bankrupt.


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