In this edition of the Patient Voice, Eleanor writes about the soundtrack of her life: How her journey with Fibromylagia and ME/CFS silenced the music for a while, but with some help from Dr. Bateman and BHC, she is finding ways to put the music back into her life again.
I read the Patient Voice topic for March – Music That Moves You – and enthusiastically thought “I can think of a song for any situation!” But I soon became perplexed; I expected multiple tunes to roll through my memory, but all I got were tumbleweeds. It was then that I realized silence has been the soundtrack of my illness. Even more so now that we’ve moved from a busy intersection to a rural town where the tock of a mantel clock can be the loudest movement all day.
I’m no musician, but music has always filled my life. My dad enjoyed many kinds of music and as a teenager he was my source for the latest albums. I dabbled in guitar and choir and was particularly drawn to hymns and Christmas carols. My first day as a stage hand I worked with a smart, funny audio engineer. We spent most of our dating and then newlywed years setting up concerts and dances. Together we programmed the entertainment for a local arts festival. Raising our girls in a smaller college town, they had surprisingly good programs to participate in and concerts to enjoy. My life was filled with song.
Then Chronic Fatigue slipped in and turned off the music.
At first I didn’t notice. Noticing wastes energy. When good days would pop up, if I bothered to look back, I would think it strange that I had all that quiet time but never used it to enjoy our CD collection. My husband hosted a “new age” show for the local radio station, so we had a wall full of beautiful music which many people would consider to be “healing”, but in my world the CDs in the basement were down the rabbit hole. I relished the “bad” day when Jim surprised me by coming home for lunch and hooking up our satellite radio in the other room; many of my favorite songs drifted in to the bedroom that afternoon.
I also remember the afternoon a doctor first played the “anxiety” card. Up until then, I’d been relieved that no one had suggested maybe I just wasn’t exercising enough or needed Prozac, but when answers weren’t found, she broke the spell. I don’t know how many times I played The Cranberries’ “Zombie” as loudly as our bookshelf speakers could handle while baking cookies and singing along “in your head… in your head!”
I rationalize my music choices with the one thing I remember from a college music therapy class; you have to start where the patient is. You can’t just make someone listen to what you consider to be relaxing or inspiring and expect them to be ready for or relate to it. Sometimes I have to play my “Angst” or “Rock” playlists before I’m ready for “Uplift” or “Church” (Yes, many of my playlists are named for emotions.) “Zombie” is still on the Angst playlist, as is “Her Diamonds” (the only pop song I know of which was actually written about struggling with an autoimmune disease), “Long December” (and it’s poignant lyric, ”the smell of hospitals in winter, and the feeling that it’s all a lot of oysters but no pearls”) and many others.
One of the best parts of getting my diagnoses and help from BHC is that I not only have fewer “bad” days, but music is a part of my life again. Many of my good days are at least good enough to choose and enjoy some music; more often from the “uplift” list.
Or I can blissfully take in the silence of my small town.
Eleanor started feeling “not herself” around 2001 and found out about the Bateman Horne Center (then the Fatigue Consultation Clinic) around 2013, when a close family member was referred. She was diagnosed in the fall of 2014 with Fibromyalgia, and then with ME/CFS a week later. In addition to the ME/CFS and FM diagnoses, these last few years have brought her and her husband a new home in a new town and their three daughters leaving the nest. Eleanor enjoys working on her home and yard, volunteering around her community in any small way she can, and hosting Sunday dinners with family and friends.