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.
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.
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.
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.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?