Dreaming of a Life Where My Husband Doesn’t Have ALS

Columnist Kristin Neva is briefly reminded of life pre-diagnosis

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by Kristin Neva |

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I sometimes dream my husband, Todd, is calling for me at night.

I wake and check the time. If it’s after 5 a.m., I know his nighttime caregiver has left, so I check on him to see if he needs to be turned, have a limb adjusted, or an itch scratched. Sometimes he’s sleeping soundly, so I figure it was just a dream and go back to sleep.

Todd has been disabled in my dreams for years. ALS has invaded my entire life since he was diagnosed with the disease more than a decade ago.

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A Taste of the Past

A few years ago, I dreamed he was struggling to walk with a cane to our daughter’s school auditorium to hear her play in the band. At the time, he was in his wheelchair, but in my dream he was less disabled.

Now it’s hard for Todd to even get out of the house in his wheelchair because his neck is very weak and he doesn’t like going out in public with his noninvasive ventilator. And in recent weeks, my dreams about ALS have become more frequent, especially the dreams of Todd calling for me.

I recently dreamed that he was lying down, and I stopped to make sure he was still breathing. The dream replayed something I often do in reality after I wake. I go into Todd’s room to see if his chest is rising and falling with the whirring noise of the ventilator.

Another night, I dreamed we went to hear President Joe Biden speak at our local theater. When his speech was over, I found out that comedian Tig Notaro was doing a show in a half-hour. I wanted to stay and realized all I needed to do was get Todd’s urinal out of the van and find an accessible bathroom. I was problem-solving ALS care for Todd even in my dreams.

But last week I had a different sort of dream.

I was in our old house where Todd and I lived when our children were born, before the diagnosis. Todd walked past me, busy doing something. I saw him for only a brief moment, but he didn’t have ALS. Of course, since it was a dream, it had a weird element — American Girl dolls were walking around, too. I heard Todd call, and I checked the time. It was after 5, and so I went to check on him. I felt happy and so endeared to my husband. I had gotten our life back for a moment. It was the only reprieve I’ve had from ALS in the last 12 years, and it felt like a gift.

I’ve missed the healthy Todd, and I’ve missed our life. The sweet joy of being out from under the cloud of disease, though only for a moment, stayed with me for the rest of the day.

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.


Dawn P. avatar

Dawn P.

Thank you Kristin for sharing your story.
Living with and caring for a family member with ALS is a unique challenge, something I know about as my husband of 30 years was diagnosed with ALS in Sept. of 2018.
We don't have much more time left together and I try my best to make every moment count. Sometimes it helps having a sense of humor.
I know my husband appreciates everything little thing we do for him to help make his life better, Life is not easy, but we learn our most important lessons in these times.
Blessings to you and your family. Stay strong!

Kristin Neva avatar

Kristin Neva

Thank you for sharing your story and for your encouragement!

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