Celebrating our 20th wedding anniversary is bittersweet with ALS

I'm grateful for the time we've had, but my grief is ever-present

Kristin Neva avatar

by Kristin Neva |

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While many couples celebrating an anniversary post joyous messages and proclaim their excitement about the future on social media, I couldn’t bring myself to do the same when my husband, Todd, and I reached our 20th wedding anniversary a couple weeks ago.

It’s not because we don’t have a good marriage. We do. I just have complex feelings about reaching this milestone. We’ve lived the past 13 of those 20 years with Todd having ALS, and life has become increasingly difficult in that time — for him because of severe disability, for me as his primary caregiver.

In the weeks leading up to our anniversary, I thought, “I hope he makes it.” And as the day approached, I told myself, “I hope he doesn’t die on the day.” I have these thoughts as we approach every family birthday and holiday. I don’t want those future celebrations to coincide with a death anniversary.

We couldn’t take an anniversary trip or go out for dinner, but we had a nice family dinner at home. I gave Todd chocolates and an ice-cream maker, and we made raspberry ice cream. Todd had ordered a silver plate engraved with our names and wedding date, and he had our daughter purchase 20 red roses along with other flowers and arrange them for me.

I thought about posting a picture of us on Facebook, but I didn’t feel emotionally prepared for congratulatory replies. I felt sad that I couldn’t write, “Looking forward to the next 20 years together.” Another 20 years of marriage is not going to happen, and the remaining years will be more difficult — if there are years. It’s touch-and-go as to whether we’ll even make it to 21. When the roses began to wilt, I hung them to dry, wondering if they’d be my last bouquet.

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A paradoxical existence

Todd’s ALS has progressed to the point where his lungs are severely affected. On many days, especially as long as he’s hooked up to his noninvasive ventilator, he seems OK. But a little too long off his assistive breathing device, or after a day of exertion with a lot of talking, he struggles to breathe — leaving me to wonder if he’ll wake up in the morning.

Providing such intensive care has made us pretty much homebound. Todd is almost entirely so, except for a couple doctor appointments each year, and I only leave if I’m making a short run to town or have arranged for a caregiver. Life with ALS is far from what we envisioned when we said “I do” two decades ago.

Yet I recognize that we’re fortunate in that we’ve already defied the odds. Having been a part of the ALS community for over a decade, I’ve witnessed many people lose their spouses when their children were younger. They never got to celebrate 20 years of marriage, never got a chance to make the memories we have.

We thought that would be us after Todd’s ALS diagnosis and prognosis of two to five years, but here we are now, somehow, with a 14-year-old and a 17-year-old. Because I’ve lived the last decade with such stark reminders of life’s fragility, I have banked memories with fierce intention.

And now I’ve found myself in this paradoxical existence of being both unlucky and lucky. It’s a feeling that’s difficult to express. I’m filled with gratitude for the life we’ve shared, while I can’t shake the undercurrent of grief that accompanies a disease as devastating as ALS. Reaching this milestone is a reminder of why I chose to name this column “Joyful Sorrow.”

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.


James E Clingman avatar

James E Clingman

Kristin thank you for sharing your heart with the world. My wife could write this same article. Our life is eerily similar to yours even to the thirteen years of dealing with ALS. I'd love to send you a copy of my book. The title is I Have ALS. send me an email with address if you would like to have it. Thanks again. Love from us to you and Todd.

Rebekah avatar


Dear Kristin,

As I prepare a short article for our quarterly publication for people living with ALS here in Oregon and SW Washington, reading your article has provided inspiration and insight for which I am profoundly grateful. Your support for other ALS families in preparing for and experiencing special occasions- such as wedding anniversaries, is truly invaluable.

With gratitude- Rebekah Albert, Bereavement Support Coodinator, ALS Association Oregon & SW Washington


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