So there I was...
...listening to brilliant neurosurgeons speak to a room full of people diagnosed with Essential Tremor. We were having brunch.
I was the youngest person in the room since the disease typically gets diagnosed when you're 40+ years old. I had been diagnosed with a degenerative Essential Tremor in my right hand 2 years previously. I was 27 years old at the time.
It's a neurological condition which causes a trembling of hands, head, neck, voice, legs, or trunk. It worsens with time, adrenaline stress, and sometimes diet, but not at a regulated dependable pace. Most folks notice it in their upper extremities and watch the trembling spread over the course of their life to other parts of their body.
Essential Tremor is hereditary. I remember my maternal grandmother shaking her head at all times, almost as if she was always saying "no." I remember her father's hand/arm shaking while pointing at the fig trees when I was small.
My family shook. That's who they were. I never thought twice about it.
But now that's who I am too.
I think about it everyday.
So I shake, and not like Taylor Swift.
Unlike most folks with ET, my tremor had immediate life-altering implications. I was a full-time self-employed musician, cellist, cello teacher - my livelihood and my career depended upon the steadiness, precision, and endurance of my hands and arms.
For a couple months, I had noticed my hand shaking and thought it was from something like too much coffee. But the day I could hear it through my cello (and not control it) was the day I called my general practitioner. She practically held my hand while walking me upstairs to the neurologist's office.
The severity of my diagnosis didn't hit until the third neurological appointment.
I remember hearing myself say out loud, "Sooo... this isn't gonna go away, is it?"
Needless to say, it's been a rough couple years with a lot of transition.
Dr. Ko heard about me and invited me to play my music and share some of my story at the end of his presentation.
His research and work is truly astounding, I was honored to even be in the room. The procedure he's researching is akin to him docking the Space Station in a human brain - an extreme amount of precision and technology is required.
The positive effects of his research is life-altering. These quality-of-life improvements is the reason why Dr. Ko chose to specialize in Essential Tremor.
But after questions from the audience, it was evident the science community still knows so little about this neurological condition and none of the handful of treatment options are 100% great options: 3 types of medications wrought with side-effects or 3 types of brain surgeries.
A shaking hand raises.
This sweet elderly lady asks, "Would this surgery help me with both tremors in my arms? or just one?"
It occurred to me, "Wait WHAT?! I might have to choose an arm someday?!"
The questions continued onto medications, but I noticed something happen...
"Huh. What's that waiter doing with a tray-full of cups filled with straws?"
I watched him place a cup in the center of each table and realized, "Oh damn. Some of these people can't drink out of a glass without shaking and spilling their drink all over themselves."
Someone must have requested straws.
I realized I was sitting in a room filled with my future.
My eyes welled-up with tears.
"Come on, Emily! Pull yourself together. You've got to get on stage and perform," I say to myself.
"Crying about this now will only make the tremor worse mid-performance later. Just think about baseball. Baseball. Baseball. Baseball..."
I took a deep breath.
A few minutes later I set my looping pedal to play layers of my cello as background soundtrack to sharing about my cello, my tremor, and my new career in songwriting and a life with less cello.
I could feel the tears choking my words.
I had to stop talking altogether.
The silence was visceral.
But I managed to stumble my way through the first 2 songs written about and inspired by losing things held dear. I was using simple piano chords easy to play despite my hand.
As always in my shows, I opened the audience up for questions. Normally, the room is kind of hesitant to this. But this time at least 10 hands went up immediately.
I answered various questions about how the tremor affects my body mechanics, how I perform and play, daily life, how I noticed the tremor at first, which family members have it also, which medication am I taking, etc.
Then I heard a voice ask,
"So Emily Ann, why do you still continue to write music? Why didn't you just move on to something other than music?"
My brain started spinning...
I heard myself say,
"Well, we might as well go down in flames. Right?"
The applause which erupted from the room was not directed towards me or my bravery. (I've been to too many concerts to know the difference.)
No, it was the room agreeing, as if to say, "Yes. And we might as well go down in flames with you!"
After that brunch, I received hugs like I've never experienced.
All I can say is this...