Holding on to happiness when sorrow arrives

How my late husband helped me find joy after his diagnosis of ALS

Juliet Taylor avatar

by Juliet Taylor |

Share this article:

Share article via email
Banner for Juliet Taylor's column

My late husband, Jeff, made a dream come true for me.

When I was a kid, my dad would take our family on our small powerboat to explore the waters near my hometown of Annapolis, Maryland. If we had enough time and the weather cooperated, we’d take a slightly longer trip a few rivers south of our home. I enjoyed this trip best of all, simply because of one particular house we’d see each time.

Nestled on the shores of the river was a small, older farmhouse with a sloping backyard that abutted a pond. Beside it was a large red barn. I imagined how wonderful it must be to live there.

As I grew into adulthood, I’d continue to see this house on boating excursions with family and friends. I always maintained my affection for it; this home, which I knew nothing about other than its charm and peacefulness, came to represent both future dreams and a connection with my past.

Recommended Reading
Banner for Juliet Taylor's column

Deciding when and what to share after a diagnosis of ALS

When Jeff, then my boyfriend, and I were relocating to Maryland after several years away, he suggested that we settle near Annapolis. He loved boating and the water just as I did, and I was elated that he was willing to give my favorite town a try. Reasonably, he wanted to rent while we got reacquainted with the area, so I began a home search. The only catch: We had a difficult time finding a place willing to accept our 80-pound husky mix, Rudder.

As our move drew worryingly near, I found a potential rental. Online, the owner shared no pictures of the house, only the pretty waterfront view, and she was happy to accept Rudder. We set an appointment to visit, at which point I realized that, unbelievably, the house was the childhood home of my dreams. Jeff, Rudder, and I were delighted to move there just a few weeks later.

A couple poses for a photo on the porch of a farmhouse at sunset. The man is sitting in a chair, and the woman stands behind him, resting her arms on his shoulders.

Jeff and Juliet pose for a photograph on the porch of their rented farmhouse, early in Jeff’s ALS diagnosis. (Courtesy of Juliet Taylor)

That summer, I couldn’t imagine being happier. Jeff cared for the sprawling yard, Rudder napped on the small pier, and I decorated our place with family pictures. The three of us spent most evenings watching the sunset, hosting friends, and simply being present in each moment. We joined a boat club and set off on the Chesapeake Bay on the weekends. Things felt surreally content.

A husky mix stands on a wooden pier that extends out over a river. His mouth is open, as if he's in mid-bark. The pier is surrounded by lush greenery, as is the opposite bank.

Rudder enjoys his pier at home in Annapolis, Maryland. (Photo by Juliet Taylor)

Life takes an unexpected turn

As summer turned to fall, our days were increasingly defined by Jeff’s concerning, seemingly unrelated symptoms, which seemed to grow worse with each passing week. He’d developed a foot drop that spring, and by early fall, he was noticeably slurring his speech and choking, which frightened us. An astute young pain doctor raised the specter of ALS, which alarmed us both.

The ensuing weeks and months were an unrelenting series of highs and lows as we got alternatingly hopeful and pessimistic medical news through frequent appointments and sometimes painful tests — a process that may sound familiar to other families living with ALS. Often, the disease can take a year or more to diagnose, but by October, Jeff’s ALS diagnosis was confirmed.

In the first days after his diagnosis, I realize now, we were both in shock. I wanted to be supportive, but I could tell that Jeff didn’t want me to see him cry and needed time to process. I’d walk in a nearby park with Rudder and sob. Jeff and I agreed in retrospect that the days and weeks following his diagnosis were among the worst days of the ALS journey, a sentiment that I’ve heard others in the community share as well.

I lamented, too, the loss of our simple, now fleeting joy — our sweet, quiet contentment, our peaceful days and evenings on the patio. I felt selfish for having focused so much on our physical space and surroundings when life seemed to have just fallen apart.

Jeff, however, had different thoughts.

He reembraced the new life we’d just built. He doubled down on our peaceful surroundings, recognizing them for the gift that they were. Yes, we were heartbroken, but we were together in a place that made us happy. He continued to mow, feed the ducks, play fetch with Rudder, and host friends.

It was the first of many lessons Jeff taught me during his time with ALS — recognizing that happiness and sorrow can occupy the same space. After his diagnosis, our relationship grew even stronger and healthier. We gained perspective. ALS was terrifying and hard, but we approached it together.

Shortly after his diagnosis, Jeff and I got married in that sweet farmhouse on the river with eight people and four dogs in attendance. Though we later moved to a more mobility-friendly place, I still see it from the river sometimes, recognize it for the dream that it was, and thank the universe for bringing joy amid sorrow.

A newly married couple poses for a photo on their wedding day. The man is wearing a gray suit over a pink shirt, and the woman is wearing a sleeveless wedding dress and holding a bouquet of flowers. His head is turned to kiss his wife's forehead, and in his right hand, he holds the leash to the couple's husky mix, who sits at their feet.

Jeff and Juliet with their dog, Rudder, on their wedding day, shortly after Jeff’s ALS diagnosis. (Courtesy of Juliet Taylor)

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.


Roxanne Kusske avatar

Roxanne Kusske

Your stories are such love stories between you and Jeff. Usually bringing tears to my eyes as I remember my husband Grant who passed from ALS in November of 2021. We too lived many love stories and were together 33 years. I miss him so much! Thanks for your stories that make me remember.

Diane Reardon-Jorge avatar

Diane Reardon-Jorge

Love your story and very sorry for your loss. My older sister was diagnosed 7 months ago, and she is really suffering, just had a feeding tube put in and can no longer talk.. .It's a rough road. Wishing you the best. Diane

Cynthia Haynes Ramirez avatar

Cynthia Haynes Ramirez

My husband Francisco was diagnosed with ALS on October 27, 2022. (1 day before my Birthday) From that day on it seems that ALS was on a fast moving race to ravish all his abilities. . Francisco can no longer walk or talk and can only use a little of his left had. So sad for a man who was an outstanding athlete and loved yard work, and especially supporting our daughter and three grandchildren on their athletic and academic journeys. He continues to get weaker and weaker and has lost about 50 pounds. I am his caregiver 24/7 and that is a full full time job. He is on hospice but the CNAs are only here 1.5 hours 5 days a week. The nurse comes 3 times a week and takes vitals. I have hired two young women who come in the late afternoon for 1.5 to 2 hours.
They are wonderful and give Francisco massages which help to relax him. Both we pay out of pocket. It is an evil disease and it has made me very sad. We have been married for 52 years and together 54. We are both retired, he a social worker and I a high school teacher. We had planned several things and now our plans have been cut. We continue with our faith in God and have so many friends who pray for us and stop by to visit. We are blessed by so much! God, Family and Friends!!!

Mary Herbowy avatar

Mary Herbowy

I am so sorry! I understand! We just retired. My husband was a grocery clerk and I was a nurse. Then the diagnosis!! No retirement ! Dreams and plans crushed!

Tammy baker avatar

Tammy baker

Who wonderful that had your love to help him out..I'm doing this all on my own. And this is moving very fast. My worst nightmare would to be put in a nursing home. I have many things that really need to be sold. But they are what my life was all about. The tools ,many craft things. And now I don't speak good and am in a wheelchair. I guess my life will end up in a dumpster. I envy you, even tho the end result is your going to be without your love

SabClay avatar


Dear Tammy, I don't know you, but I am praying for you. I pray that God send you who you need to help you in this time. This disease is an awful one, but I pray you want to have to be alone anymore. This is my prayer for you, and I am trusting God for it.

SabClay avatar


What an amazing story. My husband was diagnosis in October 2022. It has been a journey for the both of us. I find myself often doing so much, that I forget to just breathe. When that happens, it's difficult, and I tend to get so frustrated that I began to fall into self-pity. My husband had discussed retirement, and when he received the diagnosis, we could not believe what we were hearing. My new normal was no longer normal but different. However, God has kept us constant. Sometimes, I just wish things were as they once was with no tired days but God. I am grateful because my husband is doing his best to maintain, while worrying about me. In reality, I cannot believe what we are dealing with at times, but I have to believe God knows all the whys I have asked and the purpose behind it. Thanks for sharing your story!

Mary Herbowy avatar

Mary Herbowy

Your story is so beautiful and yet painful! My husband was diagnosed on June 12, 2023. My heart is broken!! Shattered! We have been together since I was 15. So at 67, I can’t see a world without him! Yet, I know the diagnosis of ALS …I can’t even imagine! He started with foot drop February 2022. I don’t know what tomorrow holds! Everyday I think” Today is the best it will be, tomorrow will be slightly different.” But… I cry everyday when he is not looking. He is here today! He can hold my hand today!
This disease has rocked our world, stole our retirement! He never smoked, drank and was very active! Now each day, he is weaker, I can see it. He tries to hide it.
I am sorry for your loss. I am sicken with what the future holds for the love of my life!


Leave a comment

Fill in the required fields to post. Your email address will not be published.