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.”
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.
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