How the Power of Music Gave Meaning to Life with ALS

I remember borrowing a Royal Caribbean cruise ship logo coffee mug from my late husband, Jeff, when we were together. I wanted to take the coffee home from a visit with him, and he reluctantly gave it to me, explaining that he and his brother Steve had won it as a prize for a music quiz on a cruise ship. It had sentimental significance.

With that added context, I understood. Jeff and Steve knew more about music than anyone I had ever met. They knew the classic albums, the set lists, and the one-hit wonders. They knew the history of the bands and their members, who wrote which songs, which bands were still together and which had gone their own way. They knew both mainstream and obscure artists and the history of their songs.

As someone who liked music but knew little about it, it was fascinating and rewarding to witness their passion. I was a grateful recipient of both their knowledge and enthusiasm for live music. We visited venues large and small, from thunderous outdoor stadiums with the Rolling Stones to intimate small-town venues with Roger Hodgson.

Music was a calming soundtrack to our entire relationship. Jeff always had music playing in his house and would explain to me the meaning of a lyric or the story of when I saw the band live. At some point, he began peppering me with questions about my music knowledge, a sign that my knowledge was growing.

The Gift of Music During and After ALS

Music took on a deeper meaning for both of us when Jeff was diagnosed with ALS in the fall of 2018. The news was overwhelming and shocking, and his diagnosis plunged us both into a deep and isolating sadness. For the first time, our home was quiet and without music. There was no artist or melody to help process the news.

As we began to find our bearings in the first weeks after diagnosis and began a tradition of sitting together in two wrought iron chairs side by side overlooking our pond, we began to bring a small speaker with us. Jeff, by design, always chose what we listened to. I began to understand even more how important music is to match a mood or accompany a feeling.

I learned that music has incredible power. The right song at the right time can help me explore complex emotions in a way that I often can’t on my own, even though I love words. I started following certain artists more closely, learning about their stories and what was going on in their lives when they wrote the song. And then there was the joy—the absolute fun and energy of watching a live rock band, an entire stadium thumping along to “Born to Run,” making ALS a second thought for a moment. It was, in the truest sense of the word, a gift.

Ultimately, I think we saw more live music during Jeff’s 19 months with ALS than in all of the previous years combined. We and our family and friends soaked up the shows, taking full advantage of the available seating so Jeff had a great spot and view. We saw Queen and Jeff Lynne in Detroit, Bob Seger in Virginia, and the Rolling Stones in Maryland, among many others. We created a family playlist that Jeff curated, with everyone contributing their favorite songs, and Jeff had final ownership.

In the days leading up to Jeff’s death in home hospice, we put on an epic final concert. Every morning, I would crawl into his hospital bed from sleeping next to him on the couch and play his favorite music on my phone. He was conscious but couldn’t communicate very well, so for the first time I had to make musical choices for him. I played Eagles, Springsteen, Supertramp, and Scorpions. It calmed us both, and many of the songs reminded me, and I hope him, of incredible memories from his entire life—songs from his youth and supposedly wild college years, his days as a freshman and young adult, and ultimately his all-too-briefly mature adulthood.

After Jeff died, I avoided live music for years. It felt like a betrayal to go to a concert without him; he had finally given me a true introduction and the deepest appreciation for what I loved. My first concert since his death was an Elton John concert, and I went with great trepidation. I was delighted to find that when the band started playing, I was filled with the same joy that I had felt with Jeff. In those three hours, I realized, and still do, that music has the power to help us feel emotions from joy to fear to love. It even has the power, in the midst of and after ALS, to connect heaven to earth.

Note: ALS News Today is a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to replace professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have about 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 generate discussion about issues related to ALS.