Monday, November 30, 2009

Getting to Yes

"Let other pens dwell on guilt and misery." 
                                                      Jane Austen

As a humor writer, I like to make people laugh.  As an optimistic person who happens to be a  reporter, I like to report good news.  If I had my way, all my writing would sound like a compilation of Mark Twain, P.G. Wodehouse and Erma Bombeck.  I am an admirer of Gilbert and Sullivan operas, Noel Coward plays, and snappy Cole Porter tunes.  Nedra, my British chum, describes my writing as "champagne bubbles, light, frothy and charming."

But as much as I always  wanted to play the part of  the delightful, bratty (it's-all -about-me)  Eloise  whose mantra is  "I -can-do-whatever-I please cause  I'm Eloise,"  I'm from a different tribe altogether, one far far away from blond blue eyed six-year-old girls who live at the Plaza Hotel.

My DNA  is not  programmed for being Eloise (who I suspect is Episcopalian) or one of the upper crust in the delightful P.G. Wodehouse tomes.  These characters are charming  twits of the finest order. Their biggest concerns are centered on  the minutiae of the  day--- episode after episode about stolen cow creamers and  house  parties filled with bickering amusing aunts and divine French food.

Nice work if you can get it but these choices weren't available to me,a Jewish girl in rural Indiana.  Tuna noodle casserole was the Hoosier state's most exotic fare and Jewish humor was more like angst, about as far from crisp British subtlety as possible.



The Midwest in general is not imbued with strong emotions.  About as giddy as we get  is watching with some discernment as Mary Tyler Moore throws her  hat up in the air!

Folks from the middle of our country are helpful and responsible, but not necessarily fun.

We start early --in kindergarten, there are lessons on how to be useful.  We learn how to do bake sales, car washes, the Indiana way to raise "cash money."  In my case, this lesson extended to my summer vacations spent lakeside in northern Michigan.  I wrote a play and we spent the entire summer perfecting it.  We finally had a grand opening; then in the best Indiana fashion gave the money that we raised  to charities of the day --Korean orphans and polio research.

Then at the tender age of eight, I joined a  4-H club  at the sacred Indiana State Fair where we took the Midwestern Honor Oath, promising to be good citizens, always serving others.  Just to make certain that this Hoosier oath is adhered  to,  I have always  believed that there is some secret ingredient that the clandestine fraternity, The Big Brothers of the Midwest, put into the corn, our best and most prolific crop,  some type of  no-nonsense fairy dust, that drives us to help others.

For role models, all we have to do is look at our two Midwestern patron saints, Mary Tyler Moore, who always does the right thing, and Nancy Drew, girl detective whose mantra is "I just want to do good"

If this Dudley Do-Right Combination wasn't enough to turn me into Lady Bountiful,  being a child of the 60s sealed my fate.   When President John F. Kennedy spoke those famous words: "Ask not what your country can do for you.  Ask what you can do for your country," I presumed he was speaking directly to me.  Even though I am now a great grandmother,  I still adhere to that dewey-eyed idealism of the 60's. 

Unfortunately, as a person with Parkinson's disease who writes about this subject, there hasn't been much to cheer about lately.  As my Tucson neurologist, Dr. Scott Sherman, told me, "At the end of the day we often don't have much good news to share with our patients.  It can be discouraging."

As Karl Robb, 42, a  close friend and a clever inventor from the Washington, D. C. area,  (who has been battling PD since his late teens) puts it, " Parkinson's is the loneliest disease on the planet!"

So, listen up!  Today I write my first blog (be gentle with me, those of you who have been around the blogging block many times) because I bear GOOD NEWS, a commodity which seems to be in short  supply in today's world in general and specifically in the Parkinson's community.

On September 3, at the University of California at San Francisco, I had the most extraordinary, life-changing experience --a "novel" surgery using "Interventional MRI." This is a type of DBS surgery but, in my opinion, has many notable advantages over the typical DEEP BRAIN STIMULATION.
----It's faster
----It's potentially more precise
---- There is no stereo tactic headgear making you feel like a victim in The Silence of The Lambs.

But the compelling reason I chose this surgery over the conventional DBS surgery was simple: The idea of having to be awake during surgery  terrified me; it conjured up images from a cheesy 1950's Vincent  Price movie.  I was in the pit and  life with all its cruelty was coming after me with the pendulum.

On the other hand, with the interventional MRI operation, I could be blissfully asleep.  Let's hear it for living in the  21st century where we no longer have to bite on bullets, but instead have lovely anesthesia and skilled anesthetists.

In my next Blog, I will give you details about this extraordinary surgery and my surgeon, the inventive, Dr. Philip Starr and his Medical Dream Team.

But right now I want to share this pre-surgery poem with you which my surgeon, Dr. Starr, was kind enough  to put in my hospital chart.  That gesture was sweet, touching and reassuring.  I was no longer the Body in Bed 15 or the Parkinson's brain on the operating table.  I was a real person, Peggy who had written a poem!!

While in the pre-surgery unit of UCSF hospital, I  was visited by reassuring medical students, interns, residents and fellows who comforted me with:

'Nice poem."
"Thanks for the kind words about docs."
"Way to go."

It was a special moment.  In a cold, sterile pre-surgery haze, we connected, not as doctors  and patient, but as human beings. This kindness extended  well into the middle of the night in my frenetic, crowded hospital room when my private nurse  placing my bendy-straw ginger-ale at the side of my bed, flashed one of her comforting smiles and said; "I liked your poem; it was sweet."

So with gratitude to this amazingly  talented and kindly crew, I  present this poem, a type of   valentine to my surgical medical team and to the outstanding health care professionals from Far and Wide who have graced my life and helped me be  the best I could be.   
THANK YOU!!!  NAMASTE!


GETTING TO YES
by
Peggy van Hulsteyn


MOVING BEYOND THE TERROR AND FEAR,

THE CONFUSION AND MAYHEM

IS A GLIMMER OF LIGHT

I AM GOING TO GET MY LIFE BACK,

I CAN SEE IT ALL NOW.

THE PEGGY I USED TO BE

BEFORE THE PARKINSON'S BODY SNATCHERS TOOK

OVER  MY BODY,

BEFORE MY MEDICATIONS RULED MY LIFE 

WHEN I WAS INDEPENDENT AND I DECIDED

WHAT I WANTED TO DO, NOT THE  MISERABLE

PARKINSON'S GREMLIN WHO WAS THE MAN WHO

CAME TO DINNER AND REFUSED TO LEAVE.


I AM  GETTING MY LIFE BACK

WHERE I CAN ALWAYS REACH DOWN

AND PICK UP MY DARLING BOSQUE CAT

WHERE I CAN GO OUT TO A COFFEE SHOP

BY MYSELF!!!

WHERE I DON'T HAVE TO DEPEND ON THE KINDNESS

OF STRANGERS

I PICTURE MYSELF WHOLE AGAIN

I CAN GO TO YOGA

I CAN GO TO TAI CHI

I CAN GO TO FRANCE.


I CAN HAVE A DINNER PARTY WITHOUT WORRYING

IF I'LL BE ABLE TO WALK WHEN THE GUESTS ARRIVE.

I CAN  HAND DAVID HIS FREEDOM BACK AS WELL

AND SEE HIM AS A SOUL-MATE, NOT A NURSE MAID.

WHO KNOWS WHAT THIS NEW CHAPTER IN MY

LIFE WILL BRING?


PERHAPS I'LL BECOME A MUSICAL COMEDY STAR

AND TAP DANCE MY WAY TO FAME. 

VERY " CHORUS LINE"  AND "I CAN DO THAT"

PERHAPS I'LL GO HIKING AND CROSS COUNTRY

SKIING AGAIN.

OR ENJOY THE EXHILARATION OF HAVING

MY BODY BACK

AND LUXURIATE IN THE PLEASURE OF  GETTING UP IN THE

MORNING WITHOUT FEELING LIKE A PRETZEL

OR APPRECIATE LITERALLY THAT I CAN GET UP IN THE
MORNING PERIOD.

(GETTING OUT OF BED OFTEN FEELS LIKE CLIMBING MT. EVEREST.)

HOORAY FOR LIVING IN THE 21ST CENTURY WHERE

WE HAVE BRILLIANT SURGEONS AND "NOVEL

SURGERIES" AND  ADVANCED TECHNOLOGY

AND STATE-OF-THE-ART TECHNIQUES THAT WILL

GIVE ME MY LIFE BACK.

AND HOORAY FOR ME FOR BEING BRAVE ENOUGH

TO TAKE THE JOURNEY!!



Dedicated to my own personal All Star Medical Dream Team --

THE inventive SURGEON   -- Dr. Philip Starr

Extraordinary NEUROLOGISTs :Dr. William Marks; Dr. Rima Ash; Dr. Scott Sherman and Dr. Paul Gordon

Nurses of note: Monica Volz, RN, Layla Diaz

To Medtronic, the company who made me a live wire

To Dr. Alastair Martin and the operators of the MRI suite


LET'S HEAR IT FOR THE DEDICATED DOCTORS AND
HEALTH CARE PROFESSIONALS , WHO, IN SPITE OF A BROKEN
MEDICAL SYSTEM, HAVE REMAINED WHOLE.

THEY ARE SENSITIVE AND CARING WITH PATIENCE AND
HUMOR IN ABUNDANCE.

IN SPITE OF A HEALTH CARE SYSTEM GONE AWRY, THESE
PHYSICIANS AND NURSES HAVE  REMAINED HEALERS    
AND PUT THE PATIENTS, NOT THE PAYCHECK FIRST.

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