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Metamorphosis: How a 'Career-Ending' Diagnosis Did Not End My Career

May 3, 2013 at 3:20 PM

“I must be willing to give up what I am in order to become what I will be.” -Albert Einstein (1879-1955)

For the invisible number of musicians diagnosed with inexplicable or “incurable” disorders; for those with fractured dreams, dashed hopes -- but every reason never to give up -- I would like to dedicate this blog. There is much more that can be done in the realm of music, and you can do it!

Amy Barlowe

* * *

IMPRESSIONS FROM LIFE BEFORE THE DIAGNOSIS

She was nine years old. She took an ear training test and won the opportunity to play whichever instrument she chose, and she chose the viola! She never practiced. She was tired of playing note, rest, note, three rests, note, note, rest, rest, rest. Never a melody! She wanted to play the violin, but her elementary school orchestra conductor said, “If you switch to the violin, you will be in the last chair of every orchestra you ever play in!” Her non-musical parents found her a local private violin teacher.

She loved the violin. She was told that she played very well. “Zigueunerweisen." Not too hard. It’s gypsy music. No need to count. Bow control? What’s that? Mendelssohn concerto… Wait. Shouldn’t this be more difficult? Something is wrong…

She was in high school. Allowed to choose her own seat on the first day of orchestra, she decided to sit in the last chair of the second violin section. “If I’m any good at all, I’ll work my way up to the concertmaster position," she thought. She did.

She was concertmaster of the high school orchestra. She sat outside his office door shaking before her semi-private lesson with the orchestra director. Would he make humiliating comparisons to the other girl with whom she shared her lessons? Would he be in a good mood, or a scary one?

“She Ain’t Got Rhythm." He sauntered onto the stage singing that tune, directing his attention at her while her peers sat bemusedly around her, readying themselves for that day’s orchestra rehearsal. “They took you for the All-State orchestra with your bow that tight?” the orchestra director said, his voice coated with the sarcasm she always dreaded. She trembled and welled up. Some days he could be in such wonderful moods. It made her feel that music was her life, and her life was beautiful. Other days, he’d say, “Do you remember that compliment I gave you? Maybe I should take it back.”

She was 16 ½. She needed a new violin. She visited a violin shop in NYC with her mother. She played a few notes. The salesman said, “If you don’t get with a good teacher now, it will be too late.” Her mother called Ivan Galamian. She played for him. He would teach her after a year of reconstruction done by one of his assistants, Margaret Pardee.

“You’re studying with whom, and you want to go to Juilliard, and you’re making that shift with that fingering?” She was supposed to play her new Mozart concerto with her high school orchestra in a few weeks. “Here. Listen to this recording. This is the only way to do it.” She respected her new private teacher and was expected to do the fingerings she was given. How could she change them for this scenario? Everything was so new.

First rehearsal. She was shaking. At home, she could dependably play the fingerings her new teacher had assigned. But now she was shaking. Her hands felt like they’d just been removed from the freezer. “Here comes that shift,” she thought. “What will he do if I play it the way my new teacher has taught me?” She missed the shift. He stopped the orchestra. “You represent the rebelliousness of today’s youth. Everyone, hand in the violin concerto. We’ll do a Mozart flute concerto instead."

She took a year off after high school. She could teach very young students,in the new way in which she was learning, in order to help support herself at home. She practiced six hours a day in an effort to make up for all the lost time. She went to Juillard’s pre-college on Saturdays. She went to Meadowmount for eight weeks during the summer. She practiced six to ten hours a day, always trying to catch up. The next year she began her studies with Ivan Galamian and continued with his assistant. She went back to Meadowmount for seven summers. She often sat in the back of the concert hall so that no one would see the tears. She wanted to play as well as those students she admired, more than anything in the world. She practiced six to ten hours a day and often took daily lessons with the assistant teacher.

She was accepted at Juilliard’s upper school. She worked every moment of every day. Elevator encounters and cafeteria conversations were often her only social events. At juries, no one but her two teachers understood the struggle she was enduring to fill in the essential gaps in her musical foundation. With perseverance, she received her BM and MM degrees in 1975 and 1976.

Years passed. Teaching positions, recordings, orchestra and chamber music jobs, marriage, children… Her father passed away in 2000, and her world turned upside down. Her life would never be the same. She began to write a piece of music in his memory.

Two years later, a “household injury” occurred. On multiple occasions, she had hit her right elbow on the railing while carrying laundry in a basket down the stairs to the basement. After one of these incidents, she discovered that she could not raise her arm to put away dishes on a shelf above her head. The pain was intense, but completely subsided within a couple of days.

Two months later, she found herself practicing by a mirror and realized that there was a point after the middle of an up bow in which she felt she could go no further. The bow would not move freely to the frog. There was an indescribable feeling, a very slight weakness in her elbow…or was it her wrist, or hand? What was happening? Could it be her imagination?

* * *

THE DIAGNOSIS

For ten years, I have awakened in the morning thinking, “This will be the day that my tremor will be gone," or, "Today I will find the solution.” I’ve always been able to solve any violin-related problem. In fact, until my father passed away, I thought I could fix anything and everything. Slowly, I am realizing that I have met with yet another potentially devastating experience. Once again, what I have loved so dearly simply cannot be brought back.

Could it be my back? My shoulder? I’ve never injured either one. During those countless hours of practice, I’ve never had the tendonitis so many of my student friends suffered. I’ve never even had those notorious nerve endings they talked about incessantly! So why now? Could it be arthritis or nerve damage? Thankfully, at least I have no pain whatsoever, and it hasn’t gotten worse. In fact, it may even have improved just a little. Or could it be that my coping skills have simply helped me to adapt better?

I’ve had everything x-rayed, and passed nerve conduction tests with flying colors! So what is it that causes my bow to shake when I have to replace it on the string after a lift, even when I’m in the privacy of my own studio? What causes the trembling in my hand that is noticeable, particularly to me, but only when I suspend the bow over the string before starting a piece, or in the slow, quiet moments of its most poignant sections? What is it that has damaged my offing bowings to the extent that they are not dependable unless I am thoroughly warmed up and have been practicing more hours than anyone in my orchestra? Could the nightmarish musical experiences of my youth, finally be taking their toll? Is this all “in my head”?

I took my questions to a well-known doctor purported to specialize in just this kind of “condition." I played a few bars of the Sibelius concerto, and, being especially cold, manifested the tremor possibly even more than I had intended. What was his diagnosis, afterwards? With an iciness that I shall never forget, he uttered the dreaded, career-ending words: “It’s either Essential Tremor, or Focal Dystonia. There is no cure.” And that was it. Game over.

* * *

THE STRUGGLE

Or was it? I’ve never had the typical symptoms of either of the two labels that this highly reputed doctor had affixed to my “disorder." What if he’d been tired and had simply chosen those labels, for lack of any other explanation? How many times had he crushed the muses of patients coming to him for words of hope, if not encouragement? One does not spend a lifetime of passionate labor to suddenly run into the proverbial brick wall, sending dreams into oblivion. Whether or not mine was a classic case of ET or FD, should it be treated with such a lack of compassion? Unimaginable.

With my usual inability to comprehend the possibility that anything could be irreparable, I set out to find a cure for what felt like a butterfly migration from my stomach to my bow arm. But with months of visits to doctors, chiropractors, an acupuncturist, and even a hypnotist, and after innumerable recommendations for magnets, supplements, and various medications yielded no positive results, my formerly optimistic outlook gradually darkened.

* * *

ACCEPTANCE, AND MY PERSONAL RENAISSANCE

I'm not one to accept change enthusiastically and with open arms. Only recently have I decided that for the first time, I am going to view my situation from an entirely different standpoint and welcome it with a warm embrace. Having established this idea in my mind, I have asked myself several pivotal questions.

1) Do I still love to play the violin?
2) Are there some things that I can contribute to the world that can have a long lasting effect on my surroundings, as well as those of others?
3) Are there ways that I can still touch people with music in the most profound way?
4) In what ways can I use the creative energy with which I have been endowed, to help others?
5) Above all, are there not many things, both musical and otherwise, for which I can be extremely grateful?

If you see yourself in what I have described, if you have answered "yes" to any of the above questions, as I have, you may find that it’s time to explore new, and even uncharted territory. What a feeling of liberation this has given me: To be free of the chains that have inhibited my musical soul for so long, just by taking a new path in the same enchanted field. It is heavenly.

Finally, there is no shame in having an incurable affliction. No right and wrong. Your journey begins with the questions above. As they say, “You have nothing to lose and all to gain.” If you are a creative being, there’s no limit to what you can do with your musical gifts. Today, right now, this very minute, if you have read this article, you have already taken the first step into the next phase of your musical life, to your personal renaissance.

You, as an individual, have your own unique array of gifts to share and to be used for self-improvement. Your path will, of course, differ from mine, but the groundwork may be somewhat the same and can be used as a point of departure. So far, this is where my path has led me, and new worlds are opening up for me every day as they will for you!

To get your creative ideas flowing, I’ll relay some of the discoveries I have made that enable me to continue doing what makes me happiest in music: 1) Playing the violin, 2) teaching the violin, 3) composing, and 4) My chamber orchestra.

1. PLAYING THE VIOLIN

I have learned to always try replacing frustration with curiosity and fascination. If I am actively seeking solutions to the physical problems I encounter in each practice session, I find myself happier to put in the extra time required to learn or relearn music. In fact, I often lose track of time doing this. I sincerely believe that, if our goals are approached with high spirits, our bodies will respond accordingly.

Here are some of the daily discoveries I have made, practicing for myself, my teaching, or my chamber orchestra, that help me cope with my condition:

1) I try to keep my bow moving as much as possible.
2) I pay particular attention to the organization of my bow: to know exactly where I want it to be for every stroke with regard to sounding point and balance, so that I can depend on its location to minimalize the necessity for any large motions when retaking. This is also necessary when anticipating offing bowings. Additionally, I have found that it is essential for me to know exactly where I will end in the bow when finishing phrases and whether or not I can stay right where I am, to wait for the beginning of the next phrase.
3) An awareness of breathing, before and during my playing, often helps to temporarily alleviate the tremor that occurs while waiting to begin a piece or phrase.
4) I find that the horizontal component of spiccato has been problematic, so this is something I stress in open strings, scales, and passagework.
5) I target the war zone rather than avoid it. My war zone is the lower half of the bow. I will practice every stroke in the regions of the bow I feel are weakest due to my condition. Although I have done repeated weight lifting exercises, nothing seems to work as well as Mr. Galamian’s rhythms in spiccato, in all parts of the lower half of the bow, for strengthening what feels like the weaker areas of my bow arm.
6) I choreograph body motions to help connect long bows, especially at the frog.
7) I try to keep relaxation in mind at all times, trying to anticipate a tremor by focusing on relaxing immediately before it occurs, so that I can stop it in its tracks.

2. TEACHING THE VIOLIN

In the 40-plus years I’ve been teaching, I can easily say that one of the most challenging issues I have ever faced derives from the unpredictable nature of my tremor and how this affects demonstrating for students. For a number of reasons, my own highly reputed teachers rarely demonstrated anything for me, so when I first began to teach, I often followed in their footsteps. Shortly before my bow arm became an issue, however, I’d realized that demonstrating was not only an easier way to get some points across, but in many situations, it could also provide that much-needed element of inspiration. Determined to continue my own growth as a teacher, I added demonstration to my teaching tools and was very pleased with the results.

When my tremor became disturbing to me, though, I felt that I could not depend on demonstrating at the level I’d been accustomed to, and I was overcome by a sense of shame and guilt. What would my students think, if my hand shook as I demonstrated spiccato? What would they say about me if my demonstrations were not always as exemplary as I felt they should be? After all, my teaching philosophy emphasized a relaxed, natural approach to create a beautiful sound. In this condition, how could I have the assurance that I was going to give my students everything they needed, when I couldn’t count on my own “performance”?

Only recently, after much reading, and after numerous conversations with family, friends and professionals, have I begun to believe that the qualities of understanding and compassion that are such an integral part of my teaching need to affect the way in which I treat myself, as well. The fact is, much like those who experience the loss of a particular sense, resulting in a compensatory heightening of awareness in their others, it seems that many aspects of my teaching have actually been strengthened.

If I keep the following thoughts in mind, I can continue to develop more coping strategies that will have a positive effect on my personal renaissance:

1) My demonstrations are not performances, and they definitely can still get my points across effectively.
2) I would never admonish another person or teacher for having the problem I have, so why should I be so hard on myself?
3) Compassion and understanding, in regard to myself, are essential tools for my personal challenges.
4) There is no shame in having a debilitating ailment.

3. COMPOSING

I never fully realized how fortunate I was to have been born into a family of artists until I discovered a bridge between my musical and creative endeavors. As instrumentalists, we most often find ourselves re-creating the timeless masterpieces of music written by all of the composers we admire so greatly. Our form of creativity goes into ultimately keeping the work of these superheroes alive through sincerely effective and honest performances. But isn’t there even more that we can do to contribute to the longevity of the art? At the same time that I realized that my tremor was going to have a serious bearing on my ability and desire to perform in public, I also discovered that this impending void could be filled if I were to become more creative than re-creative. My family had revealed the secret long before, but I’d never recognized it. If I were to write music that I envisioned, it would be another form of “world-building” that I could explore for the rest of my life.

You can find a listing of music that I have written at my website, AmyBarlowe.com. It’s not complete, though, because I’m always writing more, and the list is always needing to be updated. Much of my music has been performed around the world by students, concert artists, chamber ensembles, orchestras and choirs. In many instances, my works have been published, recorded, endorsed and reviewed. A recording of the premiere performance of my requiem mass can be found at AkronBaroque.org. With no formal training, I have been fortunate to have embarked on a new journey with an optimistic future. You, too, can re-invent your life!

4. MY CHAMBER ORCHESTRA

Seven years ago, as I grew increasingly aware of the possibility that there might not be a cure for whatever it was that had cruelly cut short my solo playing career, I decided that the best thing I could possibly do would be to give something long-lasting and meaningful to the supportive community in which I’d spent so many healthy years playing as a soloist, chamber musician and orchestra player. With a fine regional orchestra and an exciting musical organization that was attracting the luminaries of the music world, it seemed to me that the one thing that was missing was a small chamber orchestra that our city could call its own. So, with the support of my husband, who is a fine violinist and professor at the university here, along with an excellent conductor and the music director at one of the most beautiful churches in town, I realized my dream. I invited 13 of my friends to join us, and not one of these tremendously gifted, but incredibly busy musicians turned me down. We planned an opening concert, and Akron Baroque was born.

To this day, I play with Akron Baroque as its assistant concertmaster. (I can still play quite well if I practice at least ten times harder than I’ve ever had to in the past and plan ahead for every potential pitfall.) But it’s always well worth the effort.

Last May, my little chamber orchestra premiered a mass that I wrote, entitled “Aeternum”. It received the warmest response imaginable as well as a wonderful review. To share a stand with my husband, to still be able to play the exquisite music of the 17th and 18th centuries, to have the opportunity and good fortune to be able to premiere and play my own works with such a wonderful ensemble, and best of all, to see the faces of our ever increasing audience light up after each performance, makes me often wonder if my affliction isn’t simply a blessing in disguise.

These days, I wake up every morning, and think of ten things for which I am grateful. That’s easy, now that I have things more in perspective. Even if our journey’s direction has been somewhat altered, mine is surely not over, nor should yours be. Career-ending disorder? I think not. This is just the beginning of a detour. But I might decide that the scenic route is the best one for me, after all -- that it's the one that actually makes the most difference in the long run.

If knowing that there are others who have endeavored to reinvent their musical lives after suffering the heartbreaking decline of their ability to perform as a violinist can help, you have come to the right place. I hope that this blog gives you the support you need to explore the new creative challenges that lie ahead of you, inspiring new dreams with all of the reasons and possibilities that have made you the courageous, indomitable musician that you are and will be, regardless of your affliction…forever.

* * *

Below: My performance of "Songs My Mother Taught Me," by Dvorak, with Anne Epperson, piano:


From Anne Brüggemann-Klein
Posted on May 6, 2013 at 3:50 PM
Dear Amy, what a touching and courageous story! Thank you so much for sharing and all the best wishes to you with your music! Anne
From Randy Walton
Posted on May 6, 2013 at 8:14 PM
Beautiful, beautiful playing....and listening to it after reading your story was bringing tears to my eyes.

I so admire your persevering and undaunted spirit.

PS.....I tried responding right after your posting but for some reason I couldn't.

From Roy Sonne
Posted on May 6, 2013 at 8:39 PM
Thank you, Amy, for your inspiring and empowering story. And thank you for posting the Dvorak. Bravo! Beautiful, high level playing. No allowances need to be made for any physical handicaps. You can stand proudly on your own two feet as a violinist.

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