Celebrating a Marriage That Has Adapted to the Various Phases of ALS
My husband, Todd, and I marked 18 years of marriage on Tuesday. The memory of our seventh anniversary is seared into my mind. He bought me flowers from a Mayo Clinic gift shop.
We were in Rochester, Minnesota, getting a second opinion on his ALS diagnosis. After a battery of tests and examinations by a few different Mayo Clinic doctors, they confirmed that the weakness in Todd’s right arm was indeed due to ALS.
At the time, we had no idea how the disease would progress, and we thought that anniversary might be our last one together. Todd is still with us, but his health continued to decline, and our marriage has gone through different phases along with the disease.
After the diagnosis, we were in get-our-affairs-in-order mode as we prepared for Todd’s inevitable disabilities. It breathed life into our marriage when we found a new dream together — building an accessible home near my family. We put our house on the market, and we poured over architectural design books and worked on house plans. When our house finally sold two years later, we were able to see our accessible home take shape, and we began a new life in the home we had designed.
Over the next few years, I began writing novels as a creative outlet, something I could do at home while taking care of Todd as he gradually became paralyzed. He was my brainstorming partner and in-house editor. He typeset my books and designed the covers using his HeadMouse. We also published a memoir about our first year with ALS, and we recorded an audiobook of it so I’ll always have Todd’s voice. And we started a YouTube channel about things we have learned during a decade living with the disease. We expanded our world from home. We were partners in creativity.
When months with ALS turned into years, and years crested into the next decade, daily life became difficult. We still make an occasional video, but some of our drive to create new things has waned. In this season, one area where I feel very connected to Todd is in parenting our children.
My almost 12-year-old son not infrequently tells me, “You are overprotective of me.”
I tell him, “Then go ask Dad.”
If his dad tells him, “No, that’s crazy,” then I know I’m not being unreasonable. I’m thankful to have Todd to give input when I might be overly cautious, and Isaac’s glad he can get a body board.
Last weekend, our 15-year-old daughter needed to learn how to parallel park for her driving school. I set up trash cans in our driveway, and Todd watched from the garage and coached her over his phone.
While living with ALS for over a decade, I’ve realized that I need to find energizing activities to counteract the chronic stress. I take a walk almost daily, drinking in the beauty of nature. When Todd has an aide or therapist with him, my son and I head out for a quick mountain bike ride.
I need these mini-breaks, but I’ve also found that if all of my recharging is without Todd, I don’t feel as close to him. Last year, we’d go to the beach and watch our kids on the shoreline. Even that has been too difficult for Todd this summer with weakened lungs and the high temperatures and humidity. So much of our relationship is me taking care of him. If I want to feel like more than his nurse, we need to connect, even if it’s just watching a movie together.
This week, I celebrate our life together and the resilience of our marriage. A love that has endured what we have been through is a pretty amazing thing.
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Comments
Ellyn Maloney
I hope I can convey what I felt as I read your article. There is no question that ALS is a beast but in "listening" to your thoughts regarding your marriage, I was struck by the fact that you two have something very special inspite of and maybe a little because of ALS. It sounds like you both chose well and although the days are sometimes long and very hard, you are blessed with a good marriage that may not be the way you imagined but something many couples never achieve. (I am the surviving spouse of a 41 year marriage and although I am still sad, I am forever grateful for the blessing of my soulmate)
Kristin Neva
Thanks for your comment and your perspective Ellyn!
Pubodha
Hello, I am Pubodha and I live in Sri Lanka. My husband was diagnosed with Bulbar ALS December 2015. Few months after we celebrated our 10th wedding anniversary. I can still remember how he refused go see any doctors about his speech issues and other unusual symptom's he was experiencing until our wedding anniversary was over. We went away for weekend with our girls then 4 and 6 years old. we would talk about it and remember in the years that came. I signed up with pALS, ALS association, patients like me etc. my only regret it would only read the medical side of things, research what supplements are working etc. etc. and last few years there has been no time for that either I only started reading your blog from January this year. its an understate to to say 'I know' those feeling you express so eloquently and and yet so simply, the unseen unheard depth of each emotion for you for me and all spouses or primary caregivers will know. Yes connecting is so hard at times but like you have said watching a movie, reading the news together and just sometimes when we go to bed just holding hand for a few minutes before I have to turn him and go all nurse on him just reminded of all love we shared and later had to share with unspoken words. I am grateful and thankful to you for writing as you to give love and strength to so many. You truly are such wonderful person to take the time to move mountains to do this, to write, I know what a sacrifice its for you . I apologies for writing such a long comment I should know better. I wish I read these stories to Thanuja (my husband) rather than all the medical research etc etc. that I used to once in a way.
Kristin Neva
Thanks for sharing some of your story and for your kind words!
Maggie Broeren
Every time I read your posts, I’m inspired. Your simple expressions of daily life remind me to live each day w gusto and purpose in spite of my ALS. Thank you.
Kristin Neva
Thanks Maggie!
Sandy
Happy Anniversary, Kristin and Todd! Your love is contagious!
Kristin Neva
Thanks Sandy!
jay kenney
Just THANK YOU SO MUCH Kristin for sharing your and Todd's story. Your love is inspiring and helpful! jay
Kristin Neva
Thanks Jay!
Gail Elias
My husband was diagnosed with ALS in November 2020…after 11 months of doctors & receiving a few different diagnosis for his double vision & sudden problem walking as if he were drunk(he is a non alcohol drinking man) he received an accurate diagnosis from UCSF. He can no longer walk or even transfer as his legs freeze and get tangled up so he can’t stand on them. We are fumbling our way through what to do and how to live our best life. We’ve been married 45 years and still love and care for each other as best friends.. that will not change but our lives are hard.. I am full time care giver taking care of this brave kind always hard working fun loving man who can now do very little for himself. We are pretty much alone in what to do and how to do it. We know no one that has been part of ALS Lifestyle. We have great friends & family but they don’t know how hard this life is or have no advice to offer to make it better.
This site has been so valuable to me just to see there are others just like us. Thank you for sharing.