‘Why Didn’t You Tell Me I Was Happy?’

‘Why Didn’t You Tell Me I Was Happy?’
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After my husband, Todd, was diagnosed with ALS, we thought he would have at most five years to live. We started with only two major goals: take a family vacation together with our toddler and preschooler, and build an accessible home. We did both of those things within the first few years, but five years have now stretched to nearly 11.

We’ve celebrated the big milestones as we live under a cloud of grief with the uncertainty of how long my husband will be here.

When our son, Isaac, graduated from kindergarten, I took pictures of him and his dad, aware that they may be the only graduation pictures I’d have of father and son.

Todd and Isaac at kindergarten graduation. (Photo by Kristin Neva)

Now we are approaching the end of our son’s elementary school years. He’ll start middle school in the fall, which feels like another significant milestone.

Last year, our daughter graduated from eighth grade. She’s now in high school and will be taking driver’s education soon. When Todd was diagnosed, she was 4. I never imagined she might drive him around one day, but now that might be possible.

We’ve accomplished other things since the diagnosis, such as writing our memoir about our first year with ALS and going on a couple more exhausting but memorable trips with the kids.

And there have been small things, like entertainment. We’ve watched every episode of various TV shows together.

Todd and I finally finished watching “Monk,” our latest show — all eight seasons and 125 episodes, which clock in at over 83 hours. It took a while, as we made our way through each 40-minute episode by watching 10 minutes at a time while I held up the nebulizer for him.

“Monk,” which ran from 2002 to 2009, is about a fictional police detective named Adrian Monk, who became a crime consultant after his wife was killed by a car bomb. His fragile psychological state keeps him off the force, while his personal assistant keeps him functional enough to continue his work investigating murders as a consultant with the San Francisco Police Department.

Around the time we were starting the eighth and final season, Todd figured out his lungs felt clearer without the nebulizer treatment, so he quit using it, and we had to be intentional about finding time to watch the show together.

In one of the last episodes, Monk finally fulfills one of his goals of being reinstated on the police force. He’s thrilled to get his job back, but it’s not as rewarding as he thought it would be. He’s stuck in the daily grind of mundane police work rather than using his super sleuth powers on murder cases. He misses his assistant and former co-workers.

“Why didn’t you tell me I was happy?” he complained to his psychiatrist.

I laughed at that line. Happiness is relative.

For most of the episodes, Monk was so grieved by the loss of his beloved wife that he was unaware that he had developed close relationships and was doing meaningful work.

I’m not completely happy, because I grieve the ongoing loss of Todd’s health, but we still have meaningful lives. As tough as ALS and paralysis are, I suspect that one day I’ll look back on these difficult years with longing for what once was.

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

Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.
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Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.

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6 comments

  1. Bernie Gryfe says:

    My wife was diagnosed with Bulbar ALS last year and her condition has deteriorated to the point where she now has a G tube for feeding has lost her speech used a BiPap machine for breathing and has a Cough Assist machine to clear her lungs as they are failing. She refuses a caregiver and said, “I have been taking care of you for the last 57 years of our marriage you can take of me from now on.” No response to that. I know I will miss feeding her, dressing her and driving her around but that will have to be my future.

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