Do You Feel That You’ve Settled For Less Because of Your Disease?
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A loved one once remarked that since I developed MS I have settled for less in specific situations as an explanation for the unhappiness that followed—and MS was the reason I settled. It was a bitter pill to swallow but swallow it I did—and I’ve been choking on it ever since.

Have I settled?

Have I settled? Or am I slowly lowering the bar to heights I can reach without getting dizzy and falling over? Heck, we all dream our lofty dreams in youth. I was idealistic, focused, sober and determined, with a surprising core of self-esteem that made up for a lack of skills and life experience. I was so much clearer then about what held the most meaning. Goals were sharp and I knew what paths would get me there. And obstacles—what obstacles? Having a plan B was for wusses.

Dreams and fantasies

Life starts knocking us down the minute we walk outside the house. My dream life, top heavy and gelatinous, wobbled along with me. I was like Atlas, only instead of holding up the sky with my shoulders, I held a moist sac of fantasies. They meant so much more to me than the phony, mundane real world. On a high school aptitude test I scored in the 95th percentile for clerical speed and accuracy. “You should be a secretary,” several classmates remarked. “I’d rather eat broken glass,” I defiantly shot back. Secretary? I was studying to be a symphony flutist and a jazz player like my dad. I would be willing to do anything not to be sitting in a drab office doing work a monkey could do just as well. I wouldn’t be able to put my individuality into my work, not even my signature. Worst still, I’d have un-creative people around me. And the absolute worst? No jazz lovers like me. Growing up with a cool dad who was a hairdresser by day and a gigging musician on weekends, I was surrounded by talent, passion, humor, Miles Davis and Bill Evans records, mastery of one’s instrument—everything I would not find in the mainstream that I would inevitably become a part of when my dreams crashed.

A creative soul

“You’re not like me,” my dad observed one day. “You’ll have to work for other people at a job you hate.” Prophetic words. That’s exactly how it’s played out. Everyone in my family has the business/entrepreneurial gene except me. I am the most creative one of the lot—and the most inept at fitting in. To make it as a creative soul I would have to excel at it.

My body was fighting the instrument

Despite studying privately, participating in orchestras, bands, choirs, despite practicing my flute for four hours a day, I struggled to overcome my physical limitations. I had a rather unpredictable tongue that would fail at inconvenient moments, so I spent hours on articulation exercises, tonguing 16th notes faster and faster as I reset the metronome at higher speeds. What’s more, my fingering was a bit stiff between particular notes. I tape-recorded my practice sessions, obsessively playing them back and rehearsing the trouble spots again and again. There was a modicum of improvement but not nearly as much as there should have been. Frustrating is not even the word for what I was feeling. I had a very good ear, a deep musical understanding both emotionally and intellectually, I had the phrasing down, I was, indeed, a musician. But my body was fighting the instrument. We cannot master an instrument if it does not become one with the body. The revelation that I would never become a world class musician—and therefore not a competitive candidate for even a chair in a regional orchestra–finally sunk in and I was lost.

Early signs of MS

Decades later I would have another revelation about those days I struggled through practice session after practice session. My sluggish tongue and rebellious fingers were early signs of multiple sclerosis nerve damage. Along with those deficits I also suffered left foot weakness and general clumsiness, blowing it all off as a collection of my idiosyncrasies. They foiled my plans, shot holes in my fantasies. They still do.

Expectations of others

And so what? Don’t we all aim high, change direction, pursue something else entirely—and still enjoy some level of satisfaction? Of course we do. We also have to manage the expectations and judgments of others, and that can be even more painful.

When I was thirty-something my father delivered one of many mixed and troubling messages he’d sent me throughout my life. “I just don’t understand you,” he said, looking at me as if I were a stranger that had wandered into his apartment and failed to introduce herself. “You could have had this, but you settled for this.” He held his hands parallel in the air as though telling a fish story where the size of the fish increased as the story went on. Except in my case, he decreased the distance between them to illustrate the difference between my potential and my actual accomplishments. Clearly I had failed him.

I still have potential and goals

He’s dead almost nine years now and his words still resonate. But at age 60 I still have potential to spare and goals set to work towards. Expectations are dreams and wishes we harbor for ourselves and others. They start out harmless enough. But they can become smoke bombs we lob at each other, obscuring our own insecurities and fear of failure. We are not less for being flexible and adapting to our circumstances. We are simply surviving.

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