What the month of May now means to me
ALS Awareness Month is a reminder of my late husband and our community
May has always been my favorite month of the year. Here in Maryland, the trees have filled in with lush green leaves, commercial crabbing boats have begun to quietly travel my small creek in the early dawn hours, and mallard ducks have returned to my yard. The evenings stay lighter longer, allowing for peaceful time to sit in my backyard and appreciate the calm that nature brings. May is the time of year when I feel most optimistic.
When I met my late husband, Jeff, I wasn’t at all surprised to learn that his birthday was in the middle of May. We always celebrated it with an event to welcome the warmer weather, most often a concert, bike ride, or boat trip.
Jeff and Juliet enjoy a boat trip in Michigan before Jeff’s ALS diagnosis. (Courtesy of Juliet Taylor)
May is also ALS Awareness Month, a time when many whose lives have been touched by ALS share stories and messages to raise the public profile of the disease. We do this to bring greater visibility to a condition that desperately requires additional research, funding, and advocacy so that we may continue our quest for effective treatments and cures.
It’s also a time when many in the tightknit and welcoming ALS community choose to come together, both virtually and in person as our circumstances allow, to shine a light on the disease and ideally inspire others to join in our fight.
Every day, I wish that ALS hadn’t entered our family’s life. Every life has rhythms and seasons of joy and sadness, and Jeff’s ALS diagnosis came at a time when our life was idyllic. We loved our home and our family and our life together, and Jeff was optimistically launching a new security consulting venture. We had so much to look forward to. His ALS diagnosis devastated us, our family, and our friends.
At the same time, I recognize that our time living with Jeff’s disease — not the disease itself — brought us some unexpected gifts. Our shared attitude of embracing every day, of finding joy in moments small and large, instilled in me a sense of permanent gratitude and wonder. Witnessing Jeff’s bravery in the face of fear taught me life lessons about strength, hope, and resiliency. And having Jeff trust me with his caregiving was an honor that left me with a new appreciation for that role. Caregiving is a feat of herculean proportions that’s impossible to understand until you’re living it.
An equally important gift has been the ALS community and the people in it. Many choose to leave ALS behind them after their loved one has passed, and I respect this understandable choice. ALS is painful and devastating. In my case, staying connected with the ALS community has been healing and rewarding. Through these people, I’ve found, and given, empathy, support, compassion, and kindness.
On Wednesday, many of us in the ALS community gathered at the National Mall in Washington, D.C., to plant more than 6,000 blue flags bearing the names of loved ones living with, or who have died from, this disease. Yesterday, we gathered amid those flags to speak publicly about our loved ones. The flags will remain at the Mall through Saturday to raise awareness of ALS among those visiting the city’s monuments. My next column will share details and photographs from the event.
Next week will mark three years since Jeff died here at home after a beautiful, warm, and sunny May weekend. We had celebrated his birthday the week before, and days earlier I’d begun a planned family medical leave from work so that Jeff and I could enjoy a long, peaceful summer together. When he took a turn for the worse the day after his birthday, our friends and family gathered that weekend to sit at his bedside, play classic rock music, and share stories.
After his death, we learned that he’d found time that weekend, even without a voice, to summon and talk with each of us privately and share his love, hopes, and wishes for us. I still marvel that he made this happen. Jeff died as he lived — resolute, strong, loving, reassuring, and always thinking of others first. He was in many ways a contradiction — stern yet soft, serious yet hilarious, quiet yet deeply powerful.
May is still my favorite month of the year, but for different reasons now. I still love the natural beauty of the month, and the optimism and joy that come with it. But May now also reminds me of Jeff, the month of both his birth and his far-too-soon death. May reminds me of the grace and love and connection within the ALS community and our collective desire to shine a light on it, to let those living with the disease, their families, and those grieving know they’re not alone.
Members of the ALS community gather in Washington, D.C., in May 2022. (Photo by 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.
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Klara Weis
Juliet, I loved reading your posts. They all come from the heart. I caregive my son when my daughter in law allows so reading our posts helps me to understand my daughter in laws perspective so I know how to help. Thank you, Klara
Teresa Simmons
Juliet - I’m reaching for the Kleenex reading your article! I pray I will be as strong a caregiver to my husband as you were to your Jeff… It seems we have both been blessed with a rare breed of man and husband - one who remains calm, brave and thoughtful while facing this horrific disease. “Quite yet deeply powerful”… those words also describe my husband even before he lost his ability to speak. Just a couple weeks ago, on April 15th, we had the “Walk to Defeat ALS” in Sarasota, FL - where we live. My husband’s team “Simmons Sole Mates” grew to 100 walkers strong (of 300 total attending) and raised over $50,000 for the ALS Association. He is loved and admired by family, friends and community!! Bob was just diagnosed 12/6/2022 with Bulbar Onset. We have experienced a rapid progression- but as you know too well - the dx takes so much precious time. It’s therapeutic for us, especially as we have our ALS Clinic and ALS Association so close and form relationships with our care providers - to become involved in raising the awareness and feel like we are helping move the needle forward towards hope - and eventually a cure. Thank you, Juliet, for sharing your intimate experience of love and loss. There is comfort in knowing love is eternal.