Why sharing is important amid the sadness of May

I remember the emptiness I felt the first September after graduating from college. I’d been a student for 16 of my 21 years at that time, and the void of not going back to school at the end of summer was disconcerting. For some years after that, I quietly regarded September as a symbol of unwelcome change and even loss. It was my first time experiencing sadness related to a certain time of year.

So I wasn’t altogether surprised when, in recent years, I started to notice similar feelings of sadness around May, albeit for a much more serious reason. Many of us in the ALS community remember certain dates on our journeys — a diagnosis anniversary, for example. For me, May has become synonymous with loss.

My late husband, Jeff, was born on May 15, a date that he shared and celebrated with his brother Steve, who was born on the same day two years later. Jeff died of ALS on May 20, 2020, just five days after his 60th birthday. It was earlier than any of us had expected and just a few days after I’d taken leave from work to spend the summer caring for him and enjoying our time together.

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This month marks five years since Jeff’s peaceful death at home, just two months into a pandemic that ended our highly anticipated visits from family, friends, and other loved ones, along with our ALS clinic and other in-person medical appointments. We’d begun hospice in April, so we did have nursing visits, which helped us stay current with Jeff’s care and abate our feelings of isolation.

We’d started May optimistically and had hoped for one more summer together, although we really wanted decades more of them. We’d organized our home and schedules to take advantage of the time we had. We’d had accessible doors to the outside added in our living room and planned to spend our days enjoying the patio, watching the birds and playing fetch with our dogs. (Our new puppy would bring Jeff a ball over and over, dropping it on his power chair even though Jeff couldn’t throw it. Her silliness made us both laugh.)

We’d gotten an early head start on these outdoor activities during what felt like an unseasonably warm March and April, and the summer held promise of more languid and beautifully mundane days like these to come. We knew our time was limited, but we thought we’d have more of it than we did.

Jeff Sarnacki enjoys a warm day outdoors with his dogs, Sailor and Rudder, in the spring of 2020. (Photo by Juliet Taylor)

Jeff’s birthday that year was the last day he was able to get out of bed. I bought him a flowering tree as a gift, and from the patio he instructed me where to plant it. I’d asked him to choose the spot, both of us silently knowing that the tree would be a reminder of him.

The next day, a Saturday, friends had organized a COVID-19-observant drive-by birthday parade, complete with costumes, posters, honking horns, and balloons. While we knew they were coming and were moved by the gesture, Jeff couldn’t join me in the driveway to enjoy it. So I made videos for him that we watched together afterward. I opened and read aloud his birthday cards and brought in the posters that friends had made. Just four days later, he was gone.

Ever since then, I’ve dreaded May. I often write in this column about the beautiful things Jeff and I learned while living with ALS, including gratitude, perspective, acceptance, and grace. I write less often, because it’s uncomfortable, about feelings of unfairness, anger, and loss. But those difficult emotions are present alongside the happier ones, and May amplifies them for me. I’ve learned that to grow and heal, I need to sit with all of my feelings, and I work on this daily.

It’s somehow fitting to me that May is ALS Awareness Month. People living with ALS, and those who love and care for them, will tell you that ALS awareness is every day; there’s not a moment when it escapes our minds. But all the same, observing ALS Awareness Month is an important part of ultimately ending the disease. It raises awareness, educates, and ideally raises money — all of which we need to find new treatments and a cure. It’s a chance for the ALS community to speak loudly, honestly, and collectively about how ALS has affected our lives and takes those we love.

As I sit here today in the home we shared together, I feel Jeff’s presence; it is stronger on some days than others, but always here. Memories of him are all around, in both tangible and subtle ways. I’m sad for all that he’s missed, and angry with ALS for taking him dozens of years too soon.  I feel peace, too, in finally fully grasping that I and others who love him will always remember him.

It’s hard to write about, but sharing our story, during ALS Awareness Month and every day, helps keep Jeff alive for me. That alone is a gift amid the 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.