We’ve developed a dark sense of humor living with ALS

What's abnormal for some families has become healthy for ours

Kristin Neva avatar

by Kristin Neva |

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When I took my son to the doctor for his sports physical, the nurse went through a checklist of health history questions. The exchange took an unexpected turn when she asked about my husband’s health.

“Is Dad healthy?”

“No. He has ALS.”

The nurse glanced at her computer screen. “I saw that in the file. Other than that?”

Caught off guard by her question, I held back a laugh. “Well, it’s such a debilitating disease. He’s very unhealthy.”

The nurse continued, “Has Dad had any health changes since last year?”

“Yes. ALS is progressive.”

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My ‘Go-along’ Adventures Add Humor to Life With ALS

As I later recounted the conversation to my husband, Todd, we laughed at the absurdity of her questions.

“Why do I find it funny?” I asked.

He pointed out that the phrase “other than that” has a minimizing effect. “If I said, ‘I totaled my car,’ no one would ask, ‘other than that, how is it?’”

ALS is so bad that nearly every other ailment pales in comparison, even to the extent that Todd’s primary care physicians haven’t screened for them.

In retrospect, the nurse was likely trying to assess unrelated genetic predispositions to things such as type 2 diabetes or heart disease, and so her questions make sense, but they still made me laugh.

There are as many theories about what makes something funny as there are comedians who tell jokes and audience members who hear them. But most people might agree that there’s humor in the unexpected or incongruous, and otherwise normal or perhaps slightly odd behavior becomes funny when it occurs in a serious setting.

My family has been working our way through “Jury Duty,” a series that’s billed as a cross between “The Truman Show” and “The Office.” The show’s premise is that a man is asked to be part of a documentary about serving on a jury, but unbeknownst to him, everybody else is an actor and the case is fake. Crazy things happen, and what makes the show funny is that we witness it through the eyes of someone who’s expecting solemn official proceedings and doesn’t know everything is staged.

Living under the cloud of terminal illness provides ample opportunity for the unexpected. Serious subjects become fodder for banter in our household.

The kids and I surveyed the cemetery after a recent Memorial Day service, and we discussed if their dad and I should be buried in one of two sections: an old one near my aunt and great-grandparents, with mature trees and shade, or in a newer section on the other side, near my grandparents and dad.

As we debated the merits of cremation, green burial, and traditional burial, we laughed at the absurdity of the conversation. It feels so strange and different from the average family at our life stage.

When friends came over for dinner recently, Todd mentioned his idea to build a glass vestibule inside one of the entrances at the church where our friend works. “When I’m gone, you can call it the Todd Neva Memorial Vestibule,” he said. And then we discussed who’d preach at his funeral. We laughed, because these are not normal conversations.

Another friend and I went for a walk, and she reflected on our laugh-filled conversations with Todd and her husband. “You talk about death so casually,” she said.

“Well, we’ve been living with this for 13 years.”

If we didn’t laugh, we’d just cry. It feels surreal to live our lives on the edge of death, and laughing at the absurdity of it has become a way to cope.

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.


Barbara S avatar

Barbara S

#Kristin Neva, I read your article about your husband Todd and I am curious about what adaptive technology he is using on his computer. I have a 37 year old son with ALS and he too has lost the usage of his limbs. We do have a Tobiidynavox but wondering is there is something else out there that we can add. He was once an avid gamer and I know he misses that especially the friends he has made over the years. Thanks for sharing your journey with us.

Kristin Neva avatar

Kristin Neva

Todd uses a headmouse. He currently uses a sip-and-puff clicker to control it. It would likely work if he still has the ability to suck water through a straw. I'm not sure how it work for gaming--my husband sometimes plays on-line pool with it but he's not a big gamer. We made a video on our YouTube Channel ALS 411: https://www.youtube.com/watch?v=v2wuJPV3--E

Donna Ellis avatar

Donna Ellis

Bravo! Your family is positive, committed to each other,and loving and laughing. We do the same I have bulbar palsy, only with speech apps!

Kristin Neva avatar

Kristin Neva

Thanks for commenting! Glad we still have a sense of humor!

Doris Sutherland avatar

Doris Sutherland

You make living with ALS a bit more tolerable. My husband is the ALS candidate. We joke a lot too. We keep humor in the house at all time. Run into the wall - oh well, I will paint it next week. ALS has made our household funny and serious at the same time. Hopefully, readers get what I’m attempting to convey.

Kristin Neva avatar

Kristin Neva

Thanks for sharing!

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