• Monique Mead

Despite ALS

Performance #11

April 29, 2019

When I entered Mara’s home in the South Hills of Pittsburgh, lugging an electric piano, my violin, and a flag of Beethoven, I was greeted by an electronic voice emanating from a high-tech wheelchair. Mara sat there with a serene look, her head leaning against a support and behind a device that could translate her eye movements into words. It was the first time I had ever met someone with ALS, a cruel disease that causes progressive paralysis but leaves the mind intact.

At this point, Mara was entirely paralyzed except for her ability to blink and move her eyes. This, she used to write a regular blog, which she painstakingly blinked out one letter at a time with the intent of giving hope to others. Her signature reads, Mara Sweterlitsch, Pursuer of Life, Liberty, and Happiness!

How was this attitude possible? Here she was, unable to do the simplest things we take for granted: swallow food, scratch an itch, form words, laugh…let alone play the violin. It made me want to scream the way a child does when adults get to do things that seem so unfair!

But there I stood in Mara’s small living room with my Beethoven flag propped in the corner and Tino at his electric piano smiling up at me for support as he began the orchestral introduction. Instinctively, I took a deep breath, grounding myself in the moment and tuning into Mara’s presence, her two friends on the sofa, and the energy in the room. This awareness enables me to establish a loop of giving and receiving during the performance, informing how I play. It feeds both the listeners and the performers.

To my surprise, I did not sense the slightest sense of suffering or frustration in the room, nor did I feel any burden of pain from my audience, as I often do. Instead, I was surprised to feel enveloped in a warm, nurturing presence emanating from Mara’s chair and filling the room like radiant sunlight. I felt a soul that was full of patience, gratitude, and profound wisdom. Her warm presence was putting me at ease, supporting me, and enabling me to play one of the most satisfying interpretations of the concerto that I had ever given.

I left her home feeling humbled and deeply grateful for the privilege of having been in her presence. I can’t say that I know any facts about Mara, but I was touched by her soul in a way that was as intangibly visceral as music itself.

A few days later, I found myself waking up to a flooded basement, panicking teenagers, the arrival of the moving truck with our belongings that had been in storage for a year, and the ensuing chaos of boxes everywhere. Amidst the overwhelm, I sat down to check my email and found a message from Mara that put things in perspective:

“I’ve been basking in memories of the concert. Thank you for giving me an experience I didn’t know should have been on my bucket list. It was wonderful in the moment, and just gets better the more I think about it. I’m glad Andy was there; more than once he said what I was thinking. During the 2nd movement, I thought of people I had invited, and even more people I should have. I wanted to share the experience with everyone, but also was glad it was just us.

As you said Monique, live performance changes with the energy of the audience. I’ll save more reflections for my blog, but wanted you to know before the week is gone how special it was.

Thank you again, Mara."

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