The Music of My Life: Finding My Way After My Mother's MS Diagnosis

By Steve McClain

The Music of My Life: Finding My Way After My Mother's MS
Diagnosis follows the life of Steve McClain after his mother is diagnosed with multiple sclerosis early in his childhood. He recounts the story of his mother's life growing up in Northeast Ohio and her struggles with single parenthood and a devastating, chronic illness, at a time when there was very little to no treatment. This work began as a way to tell the story of Steve's mother, but it is as much her story as it is his own journey as caregiver, son, musician, and MS patient.

• Language: English
• Publisher: University of Akron Press
• Release date: Sep 5, 2023
• ISBN: 9781629222592

Book preview

Preface

What have I done? What the hell have I gotten myself into? Let’s pretend for a minute that you and I are in a bar, and we are casually talking. You’re buying, by the way.

This book started as a way for me to remember my mom, Betty McClain. I wanted people to know that my mom had an incredibly difficult and extraordinary life. I had no idea what I had started or where it would go. I had no writing schedule. I wrote when I felt inspired. Sometimes, that was every day. Other times, I didn’t touch it for weeks or months. I am certain that my lack of discipline and work ethic is why it took eight years to get to this point.

I leaned into the write drunk, edit sober quote that is misattributed to Hemingway—well, not entirely. There was no small amount of gin and tonic consumed during some of the writing process (or wine, or Scotch…I don’t want to leave anyone out). I stuck with coffee while I wrote sitting at a table on the second floor of the Williamson County Public Library with my ear buds listening to chilltronica and ambient music (that’s how I roll).

This whole process was cathartic, cleansing, and therapeutic for me. As painful as it was sometimes, I miss the writing process and the time travel I got to experience as I relived so many events and revisited so many people and places. I intentionally left some things out, and I’m sure that I got a lot of it wrong. For any reader who may have been there, you might remember it happening differently, but in my memory, this is how it all went. Who knows? Maybe we’re both wrong.

Anyone who knows me knows that I am a musician and that music is incredibly important to me. So much of my life has had a soundtrack. I got my first Beatles record at age five and had a guitar in my hand at age seven. I played my first gig (fifth- and sixth-grade talent show) when I was ten, was in a working rock band at fourteen, and by nineteen, I was employed as a guitar teacher in a local music store. Fast forward to 2019, and I found myself playing guitar on stage at the Ryman Auditorium in Nashville, Tennessee.

The working title of this book was My Son’s Name is Stephen. This was originally my attempt to give my mother a voice that she didn’t necessarily have. But I ended up writing a little more about myself then I ever intended. Stuff that I never considered important was weaving its way into the narrative—gigs that I played, friends that I had, and so many songs. I told a writing friend that I feared I was writing too much about my own experience, and she said, Maybe this is your story, too. That never occurred to me—maybe it was my story. I continued with that in mind and learned a lot about myself as the project evolved. I shared an early draft with that same writing friend for a first edit and critique. She commented that she felt bad that I had to grow up the way I did. I responded that it was all just normal to me. That was my life, and I never thought much about it. Until now.

Oh, and there is a lot of swearing in this book. Let’s have another round …

The first three quarters of my residency on this globe were spent in Northeast Ohio. I was born in Ravenna, lived most of my young life in Newton Falls, bounced around Portage County a little, and would eventually live in Stow for a couple of years. It’s a great place to be from, if you know what I mean, but I always wanted to get out. It has nothing to do with the place. It’s me. No matter where I may have been from, I would have wanted to escape it. Regardless, I miss Ray’s Place in Kent. I miss Sam’s Pizza in Newton Falls, and, at times, I miss who I was there. But my life has not been there for a very long time. I have lived in Middle Tennessee for fifteen years. That’s a long time. I will always be from Northeast Ohio, but now, this is my home. I have a better mental map of the Nashville metro area than I ever did of Akron-Cleveland. I’m sure that has to do with age. I didn’t need that map when I was younger. Regardless, I’ve been here long enough to know this place. Good and bad…but that’s everywhere. The winter weather in Ohio sucks, but sometimes the heat here is unbearable. There’s a long history of racism in the south; however, some of the biggest racists I ever met were from Ohio. The music in Middle Tennessee is fucking awesome, but Northeast Ohio gave us Devo, Chrissie Hynde, Michael Stanley, a transplanted Joe Walsh, Tracy Chapman, Trent Reznor, Bobby Womack, the Dazz Band, Dave Grohl, Marilyn Manson, Jani Lane, and Phil Keaggy, among others. My blue-collar work ethic comes from my formative years there. I was working and living on my own when I was nineteen. This was before cell phones and the Internet. For those of us in that demographic, we are different. Gen X, represent. Life without the Internet and without being constantly connected was wonderful. You could disappear, and I often did.

My mom and I dancing, 1986

This is just beginning for you, but for me, it is the ending. I think back on who and where I was when I started writing. I am a different person in a number of ways. You’ll find out later. The sun has set on this project, and I don’t know what is next. I do know that I will miss it. I already do. It’s been an interesting ride, to say the least. A ride that went places I never imagined. Some were happy places, others, not so much. Either way, it feels like last call.

This one’s on me…. Cheers.

-1-

Why Me?

Mountain. That was the word she used. I knew exactly what she was talking about, but I am not sure everyone else really got it. A small step. A throw rug. A street curb. The distance from the bed to the bathroom in the middle of the night. When she was baptized as a middle-aged adult at the First Congregational Church in Newton Falls, Mountain was the title of the piece of original prose that she shared with the church gathering on that day, explaining what the world was like in her wheelchair. She had to deal with overcoming mountains on a daily basis. I got it. But did I really? If only I had a copy of the piece that she wrote so I could take a peek into her world from the safe distance of a couple of decades. I could look further into her writing and appreciate the creativity and want for expression that she had, which was slowly marginalized and eventually silenced by multiple sclerosis. I had spent a good part of my life helping her overcome mountains. I knew how to deftly spot them, but I could never truly understand her geographies. I could leave it, but it never really left me. Whether others ever noticed it or not, her perspective and view of the world could be seen in the photographs that she took, however unintentional. Any picture that she snapped was from the vantage point of the wheelchair; the photos always angled upward.

I often wondered what night was like for her, alone with nothing but her thoughts: What will I do? What can I do? Who will help me? How will I get by? Why me? Why me. When she heard other people ask that, she would sternly reply, Why NOT you? That would shut anyone up. I admired and took for granted her lack of self-pity to the point that when something did get her down, I felt a little bothered and uncomfortable because she just didn’t act that way. It left me feeling helpless.

But in her dreams, she danced. That’s what she used to tell me. To what, I’m not sure. I can imagine it was to songs from her high school days like Unchained Melody, Wooly Bully, Stop! In the Name of Love, or This Diamond Ring," well before MS would steal this ability. Either way, when she was in another state of being, unconscious and free, her legs worked, and she danced.

It is easy to forget when looking at someone who has no outward appearance of having a disability (with exception of a wheelchair, walker, or cane) that they have a chronic and progressive illness. But you look so good is what people with multiple sclerosis often hear from well-intentioned, but uninformed people—as if someone must look as though they have a disease to be limited or fully consumed by it. I don’t believe that anyone can truly understand the effects of this disease without actually having it, but I feel that I came closer than most through my experiences with my mother’s MS as it progressed: the uncertainty, the fatigue, the failing eyesight, the difficulty in speaking, along with the loss of mobility, sensation in the extremities, coordination, muscle tone, short-term memory, and fine motor skills. And the flare ups. She would refer to her flare ups as the bear.

The first major flare up that I can remember was when I was about fifteen or sixteen years old. She was still working at this point—at a bank, I believe. It was a school day, so I got up and got ready as usual. She was still in bed, in her room with the lights off and curtains drawn. When I came home from school later that afternoon, she was still in bed, lights still off, and curtains still drawn. I remember slowly opening her bedroom door and asking cautiously, Are you ok? She mumbled that her MS was acting up, and she just needed to rest. At this age, I was more than just aware of her illness. I knew a lot about it. It had always been a part of my life. But like most teenagers, I didn’t know what to do to help, so I left her alone. She would often bring up the time that I asked, with trepidation, if she was ok during this particular bout with the bear. I think it made her feel good that I was concerned and aware that she wasn’t doing well, as she smiled and acknowledged that’s just the way it is.

Like most chronic illnesses, this is a disease that does not just affect the patient. It noticeably affects the lives of everyone around the patient, if not directly, then indirectly. As early as I can remember, my mom walked with difficulty and almost always needed assistance. As an adolescent, I would be that assistance whenever I was near. She held my arm as we walked. I retrieved her walker from the backseat of the car. I sometimes carried her upstairs to her bedroom when she was having a bad day. I pushed her wheelchair when she couldn’t wheel herself. She needed to park as close to the store as possible and eventually applied for a handicapped parking placard. During family reunions and picnics at my great-aunt Ruth and uncle Deb’s farm in rural Northeast Ohio, she was the only one who was allowed to drive her car along the dike back to the lake. Everyone else had to walk, carrying coolers, food, and fishing gear to the kidney-shaped oasis. She eventually got a full-size van with hand controls and a wheelchair lift, which absolutely fascinated Uncle Deb (short for Delbert), who silently marveled at the mechanism as it raised and lowered his niece to and from her transportation.

Not only does this disease affect the people immediately related to those afflicted with it, but multiple sclerosis also impacts our society economically. When she could no longer work due to the fatigue and loss of mobility, my mother began receiving food stamps and other government assistance. To the casual observer, a person who looks so good should be able to work in some capacity. She did for as long as she could. Years later, I at times found myself guilty of suggesting, perhaps, that she volunteer to read to children at the library, or something like that, to create some sense of purpose. I could see that an increasingly small zone of interaction and the lack of self-worth was affecting her mental health. These suggestions were met with a laundry list of reasons why not. So I stopped. I didn’t know what else to do.

This disease strikes people in the prime of their lives, during the times when they are the most creative