Wartime Living Tests Marriages

Kristin Neva avatar

by Kristin Neva |

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Sometimes I’ll pick up a magazine in a grocery store checkout line and see a marriage article about sex or the division of household chores. I’ll sigh wistfully. Healthy people problems.

In “Flying Without Wings,” Arnold Beisser describes his journey to become a psychiatrist, which was nearly impossible after polio left him paralyzed. It was difficult for his wife, too, who cared for his physical needs as he pursued his dream. Eventually, he found a job that provided free housing and an assistant to help with his caregiving needs.

The change gave the couple a sense of normalcy and a hopeful future. It also meant they had to deal with more typical marital issues, such as communication.

Beisser wrote: “In times of war you deal only with survival issues. When the war ends, you find there are still problems you have not been paying attention to. They may have been insignificant before; now they become more urgent. My physical problems were wartime survival issues. However, now we had the luxury to worry about those second-tier problems.”

Now that my husband, Todd, has ALS, we deal mostly with survival issues. Second-tier problems don’t come on the radar often.

A month after Todd’s diagnosis, I wrote in my journal: “ALS has changed the dynamics in our marriage. In the past, I have addressed conflict head-on: when we had a difference of opinion in parenting, when I thought one of his jokes was crude, when I perceived him as being bossy. On occasion, I get annoyed and go in the bathroom and close the door. I vent and let it go. Does it really matter? It’s not that important. I’m just glad he is still here.”

I’ve been living with that mindset for nearly a decade. It’s centering for our relationship to be aware that time is limited and precious. We’ve come this far, and I am hopeful we can stay the course. But I also know that wartime living can break people.

ALS only gets harder as the disease progresses, and both the person with the disease and the caregiving spouse become battle-weary. Some marriages fail.

Five years ago, our daily life got significantly harder when Todd became completely paralyzed. The magnitude of his needs was overwhelming.

I sought insight from Victor Frankl’s book, “Man’s Search for Meaning.” The Holocaust survivor, who lived through a literal war, poses a question to those who are suffering: What would you say to yourself when you are 80, lying on your death bed and looking back on life?

I conjured up my 80-year-old self. She told my 37-year-old self: “You squeezed what happiness you could out of your time with Todd and the kids. Todd loved you. The kids love you. It was wonderful to be so loved. You invested in the kids. You stuck with Todd. You did the best you could. It was a long, tough season, but you hung in there. It seemed like your grief would never end, but in the grand scheme of things, it was just a part of your story, and there was good in those difficult years. You grew in empathy and in love. You expected too much of yourself, but you did fine. You were mad at God, but all those kids you worked with before ALS and many of the people you met after Todd’s diagnosis got the short end of the stick, too. Everyone has to learn to deal with suffering.”

What would my 80-year-old self tell me today?

“You’re still going, kid. Remember what I told you five years ago. Keep it up.”


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fran lancaster avatar

fran lancaster

Inspiring! I lost my husband one year ago to this disease, after a 6 year battle. Being a perfectionist is not a great character trait when caretaking a loved one who is paralyzed, and cannot talk. I had to give myself talks to remind myself that all the battles will not have perfect outcomes, and to let the little things go, they will never get done, get fixed. And it was more important to fight the bigger battles, the ones that make the biggest differences and to be in the moment, and not worry about down the road - it will be here soon enough and we can deal with it when it arrives.

Kristin Neva avatar

Kristin Neva

Thanks for sharing---helpful self-talk. I'm sorry for your loss.

Dave Reckonin avatar

Dave Reckonin

Kristin rightly contemplates the role of one's suffering in life. Also the suffering of others; family and friends.
For example...we see our children get illnesses, but they get eventually better. We lose our moms and dads but we look back and we see they had ups and down but things eventually got better and they had a decent life. We lose our job and things look black but eventually we get another job and things get straightened out. We sometimes struggle with the mortgage but we pull through and it all gets manageable eventually. We get real sick but medicine makes us better because clever people get us to undergo treatments.
Then there is, quite separately, the suffering of pALS and the theft of everything from them relating to their own expectations of an ordinary and enjoyable life.

So do we get mad at God? Sure, for he created ALS. Why would we laud and honor such a murderer ? Is this the way God shows his love for us? He didn't help his own son when he cried out in despair on the cross, so why would he answer our prayers?

Of course there remains the possibility that the God entity does not exist and that Natural Sciences rule the planet and the universe.

Why did the so-called God create ALS? To punish ? To educate? Couldn't he do that in a less brutal or less murderous way? Sure, he can do anything he wants. So why destroy lives in such a horrible and torturous fashion?

Rick is devout but he he silent on all matters relating to this particular question. All my devout religious friends are silent on this question despite their being so adamantly, hubristicly sure about so many other religious subjects. They cannot explain it. They don't even try, such is their religious conformity and docility.
ALS is brutal, vicious and violent. And this God entity thing scatters it indiscriminately around bringing despair and mental agony to pALS and their families.
Yeah, he loves us. Sure he does...sure. He loves us. So much.

Kristin Neva avatar

Kristin Neva

"He didn’t help his own son when he cried out in despair on the cross, so why would he answer our prayers?"

"My God, my God, why have you forsaken me?" said Jesus on the cross--God forsaken by God. The suffering Savior, God becoming painfully human, tenuously keeps me in the faith when the problem of suffering almost takes me out. But as the disciples told Jesus when he asked if they would desert him, "Lord, to whom would we go?" I, too, don't see a better way to live than "Take up your cross and follow me" and "Greater love has no one than this than to lay down your life for your friends."

Dave Reckonin avatar

Dave Reckonin

"Victor Frankl’s book, “Man’s Search for Meaning.” The Holocaust survivor, who lived through a literal war, poses a question to those who are suffering: What would you say to yourself when you are 80, lying on your death bed and looking back on life?"

Well, I'd probably say to myself..... "I got to 80. Not bad. A good score...Lots of ups, lots of downs and lots of laughs. How come I made 80 but others did not? I can't blame the Holocaust on God because the Holocaust was man-made. But ALS isn't man-made so how come people get to be brutalized with it ?'

I don't understand Frankl's question because if you get to 80 having gone through suffering in your life then you have come through it. Those with ALS don't get to 80.

What point is Viktor Frankl trying to make ? It seems like he doing what a lot of religious people do when they can't explain what their God's plan is. They sort of suggest something distracting that makes you start trying to rationalise what they say and then you realize their question has no substance or logic or reason.
It's a great ruse and many people will fall for it, and nod sagely, but if they think deeply about the actual question they will see that the offered answer doesn't fit.

Kristin Neva avatar

Kristin Neva

The question that can't be answered--and yet, this is the world we live in, so we try to navigate suffering, find meaning in it, make meaning from it, find perspective, numb the pain or give up. Perhaps, Frankl's question helps people keep going...If I survive this, then what would I say to myself? I am sad that my husband, you, and many with ALS will likely not live to 80. From the perspective of a loving spouse, I don't think it ever feels like enough time. I see those who lose spouses at 80 or 60 still have broken hearts. It seems more tragic the younger someone dies--those in middle-age, young adulthood, or childhood, but there is always grief. A high price to pay for love. I can't speak to the perspective of someone with ALS, only a grieving spouse. My husband who has ALS, doesn't struggle with theodicy like I do. He finds strength in his faith while I wrestle with God, faith, and the world as it is.

Dave Reckonin avatar

Dave Reckonin

"But as the disciples told Jesus when he asked if they would desert him, “Lord, to whom would we go?” I, too, don’t see a better way to live than “Take up your cross and follow me” '

('To Whom would we go?'A question that describes accurately and precisely how ordinary people seek the protection of a Celestial Big-Brother to take care of them.)

Not to whom, but to what?

Here's suffering: An acceptance that the 5 Natural Sciences dominate,control and govern our existence. You suffer because Nature is both wonderfully beautiful and at the same time ruthless and destructive. Once you accept that Nature is more powerful than anything else life becomes a huge fun place but also a potentially uncomfortable and sometimes a horrifying lottery.
Some lose, some win, some are brutally dealt with. You accept the odds because you have no choice. Nature can strike you down at any moment. Who needs a Vengeful God when Hit-Man Nature is constantly hunting for you ?

Dave Reckonin avatar

Dave Reckonin

Theodicy: I'd never heard of it before Kristin's post. Silly ignorant me. It gives God a free-pass on allowing bad things to happen to us which are not of our own making....because ...(as the philosopher Richard Swinburne says) "most theists need a theodicy, [they need] an account of reasons why God might allow evil to occur. Without a theodicy evil counts against the existence of God."

Here we have an example of where Belief in God is logically exposed as based on a fragile argument. So fragile that theists have to make up a rationale and an explanation for their God when bad stuff happens. eg ALS.

If God is unable to destroy evil (and ALS) he is not All-Powerful. If he is able, but unwilling, to destroy evil (and ALS) then he is not All-Loving.

Theists, I'm afraid that you cannot have your cake and eat it, too; no matter how wildly and crazily you twist and turn these factors that make up our life.

Pamela Lanno avatar

Pamela Lanno

You are basing your reasoning on your perceptions of what is the highest good, and that is the problem. When we look to God for answers, we come to know him through his Word, the Bible. We will never totally understand an infinite God through our limited capacities, yet He gives us quite a bit to go on in His Word. We live in a fallen world that is tainted by sin and its affects are evident on all levels. We also look at everything through our own fallen natures. Without reflecting on God's higher perspective, some of which we may never understand until we are forever united with Him after physical death, we cannot come to grips with injustice and suffering in this world. Therefore, we must take him at his word and come to a place of trust that He is working ALL things together for good as we trust Him in the seemingly, unending, deep valleys we travel through. God is working within those that have surrendered their lives to Him -- to transform us into His likeness that we would become more like Him. He is the potter, and we are the clay. We don't get to choose all the details of how this plays out in our lives, but we can choose our responses to it all. His grace is there for us. He is a loving God, despite what we might feel because of very hard circumstances. Read the account of Job in the Bible. He suffered tremendously as well as Joseph and many others, and some who suffered horribly during their earthly lives, and were never totally delivered from their plight, didn't experience the promises that God had given them until they passed on. This present, earthly, life is not all there is. We are being prepared for something far better. In 2 cor. 4:17 it says it best: For our present troubles are small and won't last very long. Yet they produce for us a glory that vastly outweighs them and will last forever. This is not minimizing the difficulties we face, yet comparing them to what lies beyond and how when we look back we will see that they are light in comparison to the glory to come that we are promised. That is our hope. That together with God's grace sustains us in all things.

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