Parkinson’s disease is the unwanted third party in my marriage: he’s the
elephant in the room, the man who came to dinner, and the worst house guest
ever, all rolled into one.
How
has this insidious intruder affected my wedded bliss? Initially his shenanigans
did indeed cause havoc in our household. This spook, who I cynically call the
Parkinson’s gremlin, was determined to put a “Foreclosure” sign on our lives.
To be sure, he has huffed and he has puffed, and yet our house still stands.
He is
a formidable opponent, but we are stronger than he is. My husband, David and I
figure that there are two of us but only one of him, so we will prevail!
A
comforting and powerful way to view this relentless battle is to realize that
those of us with Parkinson’s are part of a global community and that we are not
alone. When we recently attended the 2013 World Parkinson’s Congress (WPC) in
Montreal, there was an inherent sense of community and hope. During the welcoming address, Bob Kuhn, a WPC
Ambassador and a person with Parkinson’s, encapsulated this feeling of optimism
with the simple, yet profound observation:
“The
biggest difference between illness and wellness is that illness starts with the
word “i” and Wellness starts with the word “We.”
David
and I are the “We”, with a capital W, in this battle and Parkinson’s disease is
the insignificant, lower case “i”.
The
only thing that my husband and Parkinson’s disease have in common is that they
both entered my life quickly and unexpectedly and caught me by surprise. But I
am getting ahead of myself, so let me start at the very beginning -- a very
good place to start.
David
and I met on a blind date, six months after I had pulled the plug on the
“wedding of the year” to my high school sweetheart. The Midwest circa 1968 was
an uncompromising place where your word was your bond, so when I phoned the
printer to order “The wedding has been canceled” cards, he informed me in no
uncertain terms that “In Indiana, if we say we are going to get married, we get
married, no matter what!”
I
fled back to my home and job in cosmopolitan Atlanta, where I worked as a movie
publicist. My friends there, much more understanding and supportive, took me
under their wings, offering to play matchmaker.
“I’m
through with Love! “ I declared defiantly. “From now on, there will only be
superficial dating, uninvolved fun and gourmet food.”
So,
when Carol, a childhood friend, told me she wanted to fix me up with a recently
divorced physicist who would be passing through town, I agreed, reluctantly,
thinking there would at least be a free meal. The stats of this mystery man,
however, sounded dreary. Physicists are known to be nerds with calculators on
their belts; they wear mix-matched socks and their conversations are filled
with equations and formulas. What was I thinking?
Sighing,
I made a dinner reservation at the brand new Hyatt Regency, the current talk of
the town. Even if the date turned out to be as dismal as I expected, at least
I’d enjoy a delicious repast at this elegant hot spot.
Imagine
my surprise when I met David at the airport. He looked nothing like a member of
the cast of The Big Bang Theory. Rather, he was a good-looking chap with
beautiful curly hair and an engaging smile. His clothes, admittedly, could have
come from the physicist ready- to- wear rack, but they were obviously covering
a magnificent body.
During
the drive to the restaurant, I discovered that David was extremely intelligent
and that he had a dry wit and a flair for word play. I was delighted to find
him a fellow wordsmith, employing language with precision and insight.
We
stayed up the whole night talking. Giddy with champagne and urbane
conversation, our repartee was as sparkling as a Noel Coward play. We were
finishing each other’s sentences with language inspired by P.G Wodehouse and
The Bard. By the time “light in yonder window broke” I had decided that this
was the man I was going to marry!
My
erstwhile supportive friends in Atlanta had, in the meantime, prepared a list
of would-be blind dates for me. “Married?” they scoffed. Had I taken leave of
my senses? Before my very eyes, they instantly became a Greek chorus of
naysayers:
“He’s
not Jewish.”
“He’s a physicist.”
“He’s divorced
with kids.”
I paid them no
heed and instead followed my heart.
Reader, I married him !
And now here we are, 45 years later.
We
began our married life in quirky, delightful Austin, Texas where David was an
assistant professor of Electrical Engineering at The University of Texas and I
owned a small, creative advertising agency. I relished being a stepmother and
raising David’s two children, ages 5 and 9. I apprenticed myself to the
cookbooks of Julia Child, mastering the most delicious of the domestic arts,
even as I was a passionate advocate for the Women’s Movement.
Five
years later, we moved to Santa Fe, New Mexico, where David had taken a position
as a research scientist at the nearby Los Alamos National Laboratory. My
transition, however, wasn't so easy. My “Are-we
-there-yet?” personality did not match the laid-back manana style of
mellow Santa Fe.
Although
a cultural mecca, laden with a rich history of science (birth of the nuclear
age) and art (from rock art to pop art, from Aztec to high tech), Santa Fe was
the slowest place I’d ever been. I was told by the locals that I suffered from
what the Navajos call the “hurry sickness.”
I had
always planned to write books “someday.” With no job market in Santa Fe, I
realized that “someday” had arrived and made the enormous professional leap
from the adrenaline rush of advertising to the slower, more reflective world of
author and teacher. The adjustment was difficult, but, eight books and hundreds
of articles later, I am very grateful that I was forced to switch gears.
Drawing
on my experience, I wrote several books on women in business, then branched
into humor pieces, penning articles for local and national publications. When I
took on travel writing, David joined me in this pleasant research, and we took
long lovely journeys to explore places I had never heard of before. Throughout
it all, we were madly in love. Like our
first conversation many years earlier, our relationship tripped along with
harmony and humor.
In
2000, though, I started to notice a strange assortment of nagging annoyances.
My voice, never loud to begin with, now took forced effort to project, a
growing problem when I was delivering speeches and conducting workshops. My
left arm lagged when I walked, out of synch with the rest of my gait. But when
I started losing weight for no perceivable reason, my confounded doctor
referred me to a neurologist.
My
central nervous system was on Red Alert when we showed up for the appointment.
Independent research on my symptoms had posed a wealth of unsavory
possibilities, and I was torn between suspense and a desperate desire to hide
under the bed with my cat, Bosque. David sat beside me, calmly holding my hand until we were ushered into the doctor’s
office. With a bedside manner as cold and sterile as her instruments, the
neurologist ran me through a battery of coordination tests before pronouncing
in a monotone voice, “You have Parkinson’s disease.”
I was
shocked into silence. David, ever so staunch and cheery, was stunned. Moments after delivering this life-changing diagnosis, the
honorable doctor informed us that she had a hospital board meeting to attend,
and we would have to leave. I literally felt like The Little Match Girl who
was hurled out into the snow.
The
voyage on the S. S. Parkinson’s is clearly not the journey we signed up for,
but David has been by my side every step of the way. PD is not a welcome guest in our
relationship, but David and I constantly remind each other that our mantra will
always be “there are two of us but only one of him, so we will prevail.”
During
the 13 years since my diagnosis, life has definitely been difficult, and at
times, felt impossible. This unwanted third party of a disease has made itself
at home in our lives, and with each progressing symptom it has educated us, not
only about the maddening, unpredictable nature of Parkinson's disease, but also
about each other. I have gradually learned to surrender my fierce independence,
allowing myself to be vulnerable in ways I would never have dreamed of before.
And
David, considerate husband that he is, has risen to the challenge. His help and
perspective have daily provided shelter and guidance. Administering medications
to try to balance the wildly fluctuating levels of dopamine in a PD patient is
a guessing game and a gamble, but at least I have a backer. David's
methodical, scientifically trained mind is much better at tracking the
never-ending schedule of prescriptions I must take. And, when I am mystified by
my own symptoms, he can tell, by a single glance at my face, whether or not I'm
over-medicated.
Our
relationship has adjusted to incorporate the work of managing my symptoms, but
we haven’t been overcome by this task. We still enjoy romantic dates and visits
with family and a circle of diverse and loyal friends. Our love of travel
inspired us to take a transatlantic voyage aboard the Queen Mary 2 last year.
I am
engrossed in the various projects that make up my thriving writing career, and
have recently celebrated the release of a book on yoga for people with
Parkinson’s. David has shrugged off his
paltry attempt at retirement and parlayed his 40-year love of folk dancing into
developing a scientific study on the myriad benefits of folk dancing for those
with PD.
Obviously,
Parkinson's disease has changed and revised our perspectives, both in the
intimacy of our relationship and in our public lives. PD has provided writing
and scientific material we would have never otherwise tackled. But it has never
disempowered us, and in its way, has even united us in a common focus.
That
sharing of focus has proven essential in keeping our relationship vital. I look
at David and see not only my love, but a comrade in arms. As Antoine de Saint
Exupery wrote,
“Love
does not exist in gazing at each other, but looking outward in the same
direction.”
Award-winning
author Peggy van Hulsteyn divides her time between Santa Fe, New Mexico and
Tucson, Arizona. Her new book, “Yoga and Parkinson's Disease: A Journey To
Health and Healing" (Demos Health Publication) , is in the top 20 of
Amazon’s “Best Sellers in Parkinson’s Disease" list and is
available at Amazon.com.
