Nursing with a Movement Disorder...DYSTONIA
by Beka Serdans, RN, MS, NP
Intensive Care Nursing with dystonia is not for the faint of heart, but it's really doable.
Okay, so how did a wannabe artist/photographer end up working nights surrounded by medical equipment and really
sick people?
I blame it on my father. Of course, he's not here to defend himself anymore, but take my word for it, there
was no way that he was going to let any of his three daughters become starving artists.
So now I'm a semi-starving nurse. When I started (not all that long ago…in dog years), my salary was $8.65 an
hour. I do earn a bit more these days, but Bernie Madoff never solicited me for investment opportunities.
What's rather interesting is that we seem to pay more for interior decorators than we do for the people we depend
on to save our lives.
Anyway, I put aside artistic dreams for the reality of mastering the science and art of critical care nursing.
There was this side of me that was fascinated by some of the "big" questions in medical care, like "What do you do
when all the body's organs start failing? How do you help those people who are truly suffering without
resorting to Jack Kevorkian measures?" Solving analytical problems humanely seemed (and seems) far more
rewarding than photographing magnificent images (although I still find tremendous pleasure stealing away and
capturing the world through a polka-dot digital view finder).
Oddly enough, my professional journey through medicine intersected with a personal medical condition… one that
would remain undiagnosed and untreated for five years. Some doctors said that my facial tics (hemifacial
spasms) and strange pains with twisting of limbs were due to stress or some hysterical "woman's disease." Yes,
we're talking this century.
Finally I picked the right door (it happened to be at Mount Sinai in New York City) and walked out with a few names
and treatments for a disease that affected my head, but was not "in my head."
I started my nursing career with dysphonia, cervical dystonia and general dystonia (too bad they didn't give medals
for ranks; I'd have been able to pin a few ribbons on my scrubs). Early treatments might have been much more fun if
they were given for cosmetic reasons, but the Botox, Myobloc and eventually Deep Brain Stimulation (DBS) were
prescribed to ease some less than glamorous symptoms.
Now, how much trust would you put in a nurse who twitched and twisted (and not to dance music)? Not much. So,
at first, I worked with a soft cervical collar that allowed me to perform sensory tricks that convinced me that my
body was aligned and not twitching and twisting involuntarily.
Well, that didn't last too long. I thought I was doing a terrific acting job (perhaps even considered for a
Tony or an Oscar) but as patients began asking me "What's wrong with you? Are you in pain? Should I
call a doctor, a nurse?" I knew the gig was up…at least when it came to sensory illusions.
What next? Retirement at 30 was not exactly an option so I figured out a way to
continue doing what I loved despite the pain and the drugs and the eventual drastic brain surgery. Has it
been worth it? Yes, Am I an effective nurse? Ask my patients. Do I wish I could wake up and
discover this has only been a long, bad dream? You bet.
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