When I was little, music was always part of my life. My parents were young and started college part-time when I was around 4-5 years old. They both pursued undergraduate degrees in music education and I was present for many rehearsals and concerts during those years.
My mother graduated at the very top of her class in 1979 from Central State University (now University of Central Oklahoma), the very same summer I entered puberty. I remember being so upset that my secret had been told when my grandmother and aunt came over to our house to congratulate me on entering womanhood. This all happened when my mother was only 29 years old...10 years younger than I am now.
Don't go telling my secrets.
For as long as I can remember, I always played the piano. Obviously there was a time that I didn't, but I don't recall that time. My mother says that I often tinkered on the upright Baldwin piano they purchased after starting college. The academic advice at the time was not to have a child learn to read music at the same time he/she was learning to read words. So I did not begin taking piano lessons until I was 7 years old and reading quite well. But once I did, I would practice for 2 hours every day while my parents had to pull me from the piano in order to complete their homework. In 6 months, I was playing the familiar "Minuet in G" by J.S.Bach. Alas, my students take much longer to proceed to that point.
So would you imagine that someone with such love and dedication in playing piano might ever experience anxiety before performing? Well, I did although I didn't understand it at the time.
I used to have this dream where first I would have a broken toe, but it was okay because it was my left foot and I didn't need it to perform. Then the dream expanded and I had a broken leg, but it still was okay because I could still play. Then it was a broken arm, but okay because I could still move my fingers over the keys. Then a body cast, but still okay. But then it was my hands, and finally I conceded that maybe...just maybe...I couldn't play that day and I would finally wake up in a sweat. But when I performed there was no clue that I was nervous...ever; and my mom admired my 'cool as a cucumber' demeanor.
The anxiety inside - nobody knew.
During my first experience with optic neuritis in 2000, I was performing backstage for the opera "Tannhauser" with the Baltimore Opera. With my vision completely gone in my right eye and suffering from the prednisone prescribed, I was unable to drive so I carpooled with a violist, husband of a horn player in the National Symphony Orchestra. In "Tannhauser," the backstage horns only play in the first Act and then over 2 hours later near the final scenes. I had lots of time to rest and talk with other backstage folks, one of which was another hornplayer whose mother has MS. So we talked alot. I was not afraid of MS at the time because my MRIs had come back clear for any 'evidence of demyelinating disease.'
I was safe.
But 5 years later when my left hand was behaving irradically, was numb, felt like pins and needles, and fatigued quickly, I was concerned for my music. I had just performed Debussy's "Arabesque No.1" at the end of my students' annual recital and was mortified because I felt my performance was terribly off, although I still received many compliments. I have since listened to the recording and I was correct - it was pretty bad.
Two months later, I was visiting with a neurologist after MRIs and a radiologist's report listed MS as a differential diagnosis for the lesions and inflammation in my cervical spine. There were bloodtests, a spinal tap positive for o-bands, and a round of IV steriods. I remember crying to my dad that, "my hands aren't mine!!"
One of my greatest fears - not having my hands any longer.
When my left hand lost it's grip strength and my fourth finger went limp as a noodle, I was.....upset. I had to convince my new neurologist that this was not acceptable and that I had to do something about it. So I found an occupational therapist who specializes in hands and together we worked hard to build new neuro-pathways to my hand and fingers. After 2 months of very hard work, I began to have my hands back and feeling hope for living a life with MS.
Only a year later, I again lost my hands but this time they were on fire and crippled into stiff fists. I thought MS? but my neurologist said Carpal Tunnel Syndrome. After EMG (electromyelography) and 3 months of failed conservative treatments, I was sent to the hand surgeon for evaluation. He injected both wrists with steriods and thankfully I began to have my hands again. The surgeon is the one who recommended getting the opinion of a rheumatologist who at our first visit said I definitely have rheumatoid arthritis. She conducted an in-office ultrasound of several joints which showed great inflammation and the beginnings of joint erosion on my left hand.
Once again - I just wanted my hands back!!
When you have multiple sclerosis, sometimes you just want back what you used to have - what you once took for granted. Maybe it's your balance, your eyesight, or the absence of shooting pain. Perhaps the fear of permanently losing what you love and treasure causes much fear and anxiety. Maybe it's your career, your independence, or your financial security.
With such variety of unpredictable symptoms, who wouldn't be fearful?
Changes in Cognitive Function
Dizziness and Vertigo
Depression and other Emotional Changes
Difficulty in Walking and/or Balance or Coordination Problems
Abnormal sensations such as Numbness or “pins and needles”
Speech and Swallowing Disorders
and on...and on...
Each growing fear and each moment of anxiety related to losing my hands and my music has led me to contemplate what exactly I would do if I could no longer play or teach. Although it would be devastating to permanently lose use of my hands to MS or RA, I hope that I have become much more than my music over the years.
I dream of always being able to find ways to adapt to my current abilities and to cultivate those abilities unknown as of yet. This blog has provided me with an opportunity to contemplate the possibilities which may come my way in the future.
I dream of being the same me in years to come - no matter if I couldn't walk, or see clearly, or think straight, or play piano, or control my bodily function.
I dream of - ME.