“Just move on. Get over it.”
A bit of a warning: Some of my posts going forward will contain difficult feelings and moments. This blog entry might be the most “difficult” one, and I won’t “pretty it up”. Readers of this blog that have focal dystonia want to read the reality of my situation. Many people have been in touch with me privately, and I feel I owe them, and myself, the truth. Remembering the past, and writing about it, brings up some tough topics, but I still see this process as positive.
Here’s a realization that I’ve had over time: My journey started in 2003, and there have been so many times I wish I could go back and walk away from the flute and my music career. In fact, if I could go magically back, I would do that and give my energy to something else. I know that’s not what a lot of people facing this condition want to hear, but what I’ve experienced in my career over these fifteen years is not what I wanted for myself. Don’t get me wrong- I do really love so much of what I do now, and I’m lucky in SO many ways. Still, I would not choose the journey or the hurdles in retrospect. The balance is just off. I should have talked to more friends and professionals, besides just my husband, about what I was realistically looking at moving forward. I might have been able to figure out a more satisfying future if I had found some people who could have helped me move forward. But, that is not the road I took, and I am here today going into a clinical trial for deep brain surgery for focal hand dystonia patients.
April 2003 was the beginning of this unwanted journey. James and I had literally just moved into our first house, and my left hand stopped moving when I attempted to play the flute. I couldn’t even play “Mary Had a Little Lamb”. I can still feel the panic from those first couple days. Something was wrong, but it was fixable, right? After my left hand stopped working, my two year journey to a diagnosis AND treatment began. I would barely touch the flute from here on out for almost two years.
Making things even more difficult emotionally, a few days after our move, James left with the Dallas Symphony on a three week tour. I was alone with boxes of our unpacked stuff, and the inability to play the flute. I was alone, and I couldn’t sleep. I was already a very good insomniac, but this crazy situation threw that into overdrive. I kept the blinds shut all the time (the sun is very bright in Dallas), and didn’t do much besides exercising and calling my doctor and neurologists, scheduling appointments.
I received a few names of musicians with focal dystonia from a couple people I must have confided in. What I’ll never forget is calling one of those people with focal dystonia. He generously talked with me over the phone. The air was sucked out of my universe as I spoke to that flutist, who was very open about his struggles, and even his thoughts of suicide.
Here we were in our first house, and I finally had a room that was supposed to be my own flute studio. Before we moved in I was beyond excited to have this practice and teaching space. James and I would no longer be sharing a practice room, and moving things around when we both needed to work. Instead, while James was gone on tour, I would go into the room just stare at the walls. I felt like I couldn’t set up the room. Not with what I was learning about focal dystonia.
During those days, I listened to a lot of Josh Groban, and I cried. I am not a big crier, but I got a lot of that accomplished during these first few weeks. Josh Groban is forever tied to this period in my life, so if you want to make me cry, just turn on one of his tunes. My daughter discovered him this year, and asked me if I had heard of him. Well, darling, yes. Yep.
I’m not sure exactly when I saw my first neurologist, but I know James couldn’t go to the appointment. I believe he was still on tour. This first doctor thought I might be sleeping on my arm incorrectly. I really didn’t see how that could affect my flute playing so profoundly, but I diligently slept with the arm stretched out. Nothing got better, but I was literally praying that this doctor was right. I now think he was pretty lazy. Granted focal dystonia is a rare condition, but seriously.
Somewhere in this timeframe, I made an appointment with a second neurologist. This second doctor did painful electro-feedback tests. He did diagnose me with focal dystonia that day, but I don’t know why he did those tests. No other doctor that diagnosed me in the months to come needed those tests. So when he told me his diagnosis, I got emotionally distressed. This doctor actually said I was seeing this situation as a glass “half-empty” experience. Well, he was wrong. I saw the experience as the glass was totally empty! That was the only advice he offered. He didn’t give me any treatment ideas. He didn’t even explain a single thing about the condition. I have a very clear memory of him getting all “lecture-y” about the glass being “half-full”. He was telling me how to feel. Glass “half-full”. Absolutely not.
My brother and sister-in-law picked a very upset me from this appointment. They must have offered to take me to this appointment, but again I don’t remember. I remember how awkward it was to be upset in front of them. They were a very young married couple who probably didn’t know what to think. James was either gone or not free. As a member of the Dallas Symphony Orchestra, he didn't have freedom to set his own schedule. We both can’t remember when these two neurologist appointments took place. It’s very possible that I made them happen really quickly.
Also while James was on tour, my mom reached out to my uncle and his family who lived fairly close to me Dallas. Since my mom asked them to help me in some way, we went out to eat lunch or dinner. At this meal, I wasn’t feeling like myself, but I remember, clear as day, my uncle asking me why I didn’t just switch jobs. I didn’t know how to respond to this question and the way it was asked. I do know it was just very bad timing. I was still searching to understand what was happening to me. Would one ask this of a professional ball player or ballerina at a similar point? Is there more sympathy when an athlete hits a terrible juncture?
When a person is going through a loss, even if your solution seems logical, don’t say something along those lines. You can go probably ask the hard questions if you really, really understand the situation, but I had not talked much with my relatives, nor had they asked much about the condition. No one really asked how I felt. Basically, I was not ready to think of a complete life change just a couple weeks into this unwanted journey. Being a musician is very much who one is, and not just what one does.
I began to realize the reaction I could expect from people that did find out, was a lack of understanding. Most of them asked very little about what I was going through, and some had some opinions “Just move on. Get over it.” I understood that line of thinking to an extent actually. After all, I was a healthy person. I wasn’t dying…but part of me was actually. I think needed more confidants, and I didn’t seek them out. Focal dystonia is very isolating for most sufferers.
There’d be many more appointments and calls to doctors in the time after this initial period. I had discovered that a lot of people moved quickly to judgment. Musicians judged other musicians for having the condition, assuming, I believe, that one did something to cause it, or is a lesser musician overall. Family did not understand the trauma maybe because I looked normal. Years later in this journey, I did tell friends who were not in music about my focal dystonia. By then, I knew these friends were a safe group, and even if they might not fully appreciate what this condition meant to me as a musician, they were best group for a little focal dystonia conversation. I could say to someone finally that I’d been to get five Botox shots in my arm, that I had a bad performance, or that my insurance was dropping my coverage again.
Going back through some of the past is hard, but I’m finally feeling more compassion for myself. Believe me, I did not give myself a break at all either. I did feel, and sometimes still do feel, like I was less of musician because I got focal dystonia. I have spent so much time trying to overcome focal dystonia and have my flute career while keeping my eye out for a cure. Maybe my story is supposed to lead up to this surgery.