A musical spoonie’s journey

Posted August 21, 2020

Sara J playing the flute

Little did I know that my flute career path would essentially be stopped in its tracks before I had an opportunity to really get going. By all accounts everything was in place. I was all set. I had the best teachers. I was at my dream school of music. I made it! I am a product of the “no pain, no gain” era. I can still hear Jane Fonda’s voice congratulating me on hours and hours and hours of practice. You bet it hurt! I was working hard! I was succeeding! As I got older I heard new voices join Jane’s encouraging chants.

In 7th grade I was introduced to Lydia Grant, a dance instructor at the New York School for the Performing Arts in the TV show Fame, “You’ve got big dreams. You want fame. Well, fame costs. And right here is where you start paying: in sweat.” 

If you were to ask my middle school/high school flute teacher if I was a deeply committed and dedicated student – well? I’m not sure what she would say. I definitely was successful, but perhaps I could have achieved more had I been even more committed. More focused. You see, I went through these stages. I’d work really hard, be super prepared, do really remarkable playing. Then, meh…. I just wasted time in lessons. I was ill-prepared, appearing disinterested when that was not the case at all. To be honest, I felt tired. I’d go through these stages, of fits and starts. I was an all or nothing sort of kid. Looking back I know exactly what was happening. I was wrecking my body. My hypermobility was ruining my hands, arms, shoulders. Bit by bit. Destroying my body. Of course I needed the breaks! I didn’t know that my pain was wrong. I would hurt so much that I just couldn’t really play until I took the time to recover. I saw this aspect of my pain as a weakness, so it goes without saying that I never discussed this negative side of my pain with anyone, least of all my idol, my flute teacher.

I continued my studies at college. I was accepted into my dream music school. Lydia Grant was right! All my hard work and sweat was paying off. I pretty much figured I had it made once I got to that level. From here on out it would be polishing and tidying up the rough edges. I was well aware of the fact that I wasn’t the best flutist in my class, but I was there! That’s all that mattered! And I made the most of it. I was easily playing an average of eight hours every day between ensembles and my own practice time. I was in heaven. I realized that I might not be good enough to sit principal in the Chicago Symphony or Berlin or Vienna. But, I was on my way to a life of music. That was all I wanted. It was all I knew. It was my life.

I came home that summer eager to share all my exciting news with my teacher. (This was in the olden days before social media, emails, etc.) “So, how’s it going?” “Great! I’m having an amazing time! But, I am a little concerned about my hand. It hurts to open a door and I can barely hold a fork or pencil.” Truth was that I almost didn’t make it through the end of the year. Writing had become excruciatingly painful. I barely got through my finals.

Remember my opening line? About my career being stopped before it even got started? This is the time in my story where that all makes sense. When I was in elementary school, years before I started the flute, I was enrolled in special education classes. I was a perfectionist. I was a hardworking, conscientious student. But I had lousy handwriting. I attended those classes to fix my sloppy writing. The problem was that my writing wasn’t the issue. I had a horribly cramped hand position that hurt. All my fingers and both thumbs bend to at least 90-degree angles. How was I to know that’s not normal. It was normal for me. I didn’t think to tell anyone it hurt because I assumed it was supposed to. Just like I assumed playing the flute was supposed to hurt.

I don’t know what inspired me to tell my teacher about my hand. I do remember I was getting scared. Terrified, in fact. I could hear that I couldn’t keep up with my peers. It was getting harder and harder to just get through the day let alone play my final jury. What was happening? My dreams were getting fuzzy, fading away like the image of your best friend in your rearview mirror as you head off on a great new adventure. Only my new path, this new journey, was not one filled with excitement, hope, the giddy anticipation of so many great things to come. My journey forward was fraught with dread, anxiety, anger, hopelessness, unbelievable sorrow, and an overwhelming sense of loss. A foreboding that my life was over.

My journey took me back to school. I tried to continue on with my studies. I had no business being there. I had no primary care physician there to oversee my care. I was in physical therapy for a brief time. I was instructed to stop playing the flute for six months. An agonizing request for a music school student. I had no counselors, academic or otherwise, to help me, nurture me through this scary new territory. No one to guide me emotionally, musically, scholastically, physically. I was adrift. Alone. 2,700 miles away from my home. Still really just a kid. I finally resumed playing. The PT? The six-month break? In the end, it didn’t seem to matter. All the old symptoms came back as strong as ever.

Fast forward to 2008. I was still fighting debilitating pain. My hands continued to get worse and worse. I struggled with basic daily tasks. Meanwhile, I was pleading with my flute, “Please let me play. Don’t hurt me.” The voices of my old inspirational friends were now replaced with Antonio Salieri’s voice in Amadeus, “All I wanted was to sing to God. He gave me that longing… and then made me mute. Why? Tell me that. If He didn’t want me to praise him with music, why implant the desire? Like a lust in my body! And then deny me the talent?” 

I was hurting: heart, soul, and body. I went to a new hand doctor. Hoping, just praying, I would hear something new. Find answers. I simply refused to accept another psychological diagnosis of malingering, factitious disorder, somatic symptom disorder. This is real! And, no. It’s not focal dystonia! I was finally diagnosed by that wonderfully kind and understanding doctor, some 20 years after my college hand problems, and more than 30 years after my elementary school special ed classes. It turns out I had several hand conditions including bilateral carpal tunnel syndrome, bilateral De Quervain’s tenosynovitis, bilateral cubital tunnel syndrome. Those problems were there that entire time.

In 2018 I continued to have new problems while my old problems progressed. I could see the writing on the wall. I was losing my flute. Never mind that I was also having horrendous hip pain, back pain, neck pain, ear issues, vocal cord problems, etc. I went to have my new hand problems diagnosed in an effort to slow my obvious deterioration. He acknowledged something that had always been dismissed: I’m “double-jointed”. He sent me to a rheumatologist. In August 2018, three months shy of turning 50, I was finally diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS).

I still struggle with convincing some medical professionals that the diagnosis is true. It’s not unusual for the door to my exam room open only to hear the first words from my new doctor or therapist be, “ you don’t have Ehlers-Danlos syndrome. For one, it’s extremely rare.” After reviewing the Beighton score, again, and going over the 2017 hEDS criteria, again, they always concede that, yes, I do in fact have hEDS.

Now, I’m in the part of my journey where I’m trying to find my way. Resources are limited and there are few doctors who know what to do with me. But, at least I know I’m not crazy. I’m not faking. This is real. I need a new voice to keep me company on this new journey. Jane Fonda, Lydia Grant, Benjamin Franklin, George and Marty McFly, Antonio Salieri. I need to let you all go. Who will help me through this next phase? Mandy Harvey? Sia? Lara Bloom? A musical spoonie I have yet to meet?

I’m not ready to let my flute go. Not just yet.

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