Caregiver Confidential: “Who Lives, Who Dies, Who Tells Your Story?”

But when you’re gone, who remembers your name?

Who keeps your flame?

Hamilton, “Who Lives, Who Dies, Who Tells Your Story?”

I was fortunate to see Hamilton in Chicago in December. (I highly recommend going when it comes to St. Louis this spring.) One of the most moving musical numbers and a personal favorite of mine was the finale, “Who Lives, Who Dies, Who Tells Your Story?” In fact, I become teary-eyed every time I listen to the lyrics, because they are so on-point. I thought I finished telling my family’s journey with ALS, but after watching Hamilton, I realized that I had one final point to make.

In earlier posts, I related how my husband Brian learned that he had ALS and our family’s 5-year journey with the disease. What I failed to adequately convey, however, was that your loved one’s legacy should not be defined by ALS. It is easy for this to happen, because of the dramatic and heart-wrenching nature of the illness, and because for many of us, ALS leaves a searing and indelible memory. One must always remember that ALS is what your loved one unfortunately had and does not reflect or represent who he or she was. With that backdrop, I hope you will indulge me in telling you just a little more about Brian, unrelated to ALS:

I first met Brian in October 1967 on the last day of a high school youth group convention. I was from Joliet, and Brian was from Elgin, Illinois. A childhood friend originally from Joliet but living in Elgin said she knew this really cute, shy guy and wanted to introduce us. Brian and his best friend walked into the gym on the last day of the convention, and my friend Barb introduced us. Our conversation lasted only an hour or two before I boarded the bus to return to Joliet, but we clicked immediately. When I got home, I called my best friend and told her that I met the guy I was going to marry. It took almost 7 years for that to happen, but Brian and I were married on June 2, 1974. We were married for 36 years.

Brian and Idelle
Brian and Idelle, December 1970

Who was Brian? Brian loved sports and was a defensive lineman on his high school football team. His favorite baseball team was always the NY Yankees (Brian was born on Staten Island, NY), and he followed Ohio State football from his days growing up in Painesville, Ohio. His favorite college basketball team was the Kentucky Wildcats, which is the one sports team he followed religiously throughout his life. Brian shared his passion for the Wildcats first with his dad, who was a Kentucky alum, and later with our daughter Leah. His adopted St. Louis teams were the Cardinals and Rams, of which he enjoyed attending the occasional game.

Brian loved food, reading, music, travel (we took many wonderful vacations), and gardening, which he found relaxing and meditative. Every morning before work during the growing season, Brian would go outside to contemplate the plants in our front garden bed. Brian always loved nature and the outdoors. Growing up, Brian’s parents thought he would become a forest ranger, but instead he received bachelor’s degrees in environmental science and zoology.

Brian was a very thoughtful, introspective, and intellectual person. He was an extremely hard-working and meticulous medical malpractice defense attorney, who was dedicated to his clients. Brian was a good listener and nonjudgmental person, who cared deeply about people. Above all, Brian was a devoted father and husband to me and our daughter Leah.

This is my last post on our family’s experience (I promise!), and I will be blogging about other caregiving topics going forward. As a survivor, I feel it is incumbent on each of us to give voice to the voiceless, to tell our loved one’s story, and to keep the flame alive. I invite you to share your stories or experiences, anything you feel comfortable relating, in the comments section. Let’s continue the conversation.
Idelle thumbnail

Idelle Winer was primary caregiver to her husband Brian, who passed away in 2010 after a 5-year battle with ALS. A retired medical publishing professional, Idelle offers her unique perspective on a variety of caregiving topics in our feature Caregiver Confidential.

2 thoughts on “Caregiver Confidential: “Who Lives, Who Dies, Who Tells Your Story?””

  1. Your story really strikes a chord with me, but from a little different perspective. My husband and I are enjoying our second marriages together. Little did we know after only being married for 8 years I would become his caregiver as he takes the ALS journey.

    He did not grow up in our town, I did not go to school with his family and friends, so I really only know his past through any stories he cared to share. What I’ve found remarkable is all that I’ve learned about him through the dear friends that come to visit, send him cards, letters and e-mails, and seek to relive the great memories they’ve gained during the many years they spent together. Sometimes I’m a little jealous and get a little angry that I will not get to build as many memories as he has with his long-time pals. But I’m learning that it was not my imagination that I married a kind, funny, compassionate man, as all the stories I am hearing from his past have confirmed that!

    It’s only been one year since his diagnoses, and of course we don’t know how much time is left. But when this journey comes to an end I know his story will continue!

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    1. Thank you so much for sharing your thoughts. I believe it is the quality of time spent together that truly matters. I too learned many things about Brian, of which I was unaware, from his two childhood friends who visited. Friends and/or colleagues give such a different perspective on your loved one. I wish you and your wonderful husband all the best. Warmly, Idelle

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