December 19, 2010

“ I wrote this as a part of a continuing effort to keep you aware and advised of my progress with the Parkinson’s surgery. the account wanders a bit thru its timeline. I will correct this eventually. It begins with a few non sequiturs but improves as I am improving. Slowly.”

Return to Forever

Far from waves.
There is a coast to the West.
Over those mountains to the West.
There will be waves breaking there
at this time of year.
I have turned away from the ocean.
I wait.
For now;
My gaze redirected from that sea.
The cause of my leaving?
I can no longer swim.The surgery left me this way.
I sink. Quickly. Suddenly.
I cannot even float for a second.
Slowly, I am learning to fear my old domain . . .

I am on the Mainland.
Enduring the mercies of the weather.
It is briefly intriguing to watch a cold front descend
To feel the fog silently approach and encloses;
the piercing wind that soon drives you to shelter.

Shelter is the difference.
“No need” in the Islands.
There, the Islands trade winds are like silken clothing
allowing the sun to warm and the rain to cool
barefeet shoes and a rainbow hat.
All you want is what you wear.

It is raining cold now. Gray. The city.
But at its bleakest, San Francisco is a positive, progressive, town.
Farther along the evolutionary path than most cities.
The path to true equanimity for all who populate its hilly streets.
The gentle, creative gay population has contributed much
in this regard, but I can remember a day before the Castro , before Noe, or the Haight. Before the Hippies and the summer of ’66. When San Francisco was just that place where a Armani suited executive from Montgomery street stopping on a corner to wait for for a light to change
can turn to a tattooed , levied street “denizen” and pick up a conversation. As though their roles might have been reversed at one time; and now each comfortable at his own station in life.

I have never strayed too far from this city.
I am always finding a way, a reason, the need to come here. I guess you could say; as much as you can say this about any city, I love San Francisco.

And right now I need her help.
I am about to enter the Neurological Surgery offices of Dr.Philip A Starr at the UCSF Medical Center at Mount Zion on Divisadero Street.

Here I will willingly submit to the cumulative “embrace” ( Wishful thinking? ) of five wonderful women in my life. Dr. Ellen Aire, Dr. Camilla Kilblane, Monica Volz M.S.N. Neuro programer, and Dr. Jill Ostrem neurologist who specializes in the medical and surgical treatments of movement disorders and who is determined to solve the puzzle of my particular programing.
I did say five women.
The fifth is an angel.
Not always the same angel but always one of two Angels.
my wife , Vance Killen or my dear friend , Betsy McKinney. Sweet angels who understand when to be tough Angels.
They are always in touch with me as well as each other.
They are perhaps saving Angels in my case.
I love them both.

But I am here among all this strength and skill, fem and focus and they are puzzled. I am frazzled.

But wait, I had better go back in time a few weeks and fill in some information for you . . .

First, The recovery from deep brain surgery has not gone that well for me, Not exactly text book,, There is no textbook. The procedure is still considered experimental. In fact there were challenges all the way back into the surgery itself.

For starters the amount of Anesthesia required to subdue me was six ( 6 ) times what they had previously needed for any other patient! That according to Dr. Starr is what is required for an elephant and still during surgery ( A eight hour affair requiring the patient to be brought to consciousness periodically for consultation.) there were moments when I was very anxious. Despite all the potential for complication, the procedure was successful.
Dr. Starr claimed that all four implants were located , in his own words , “Perfectly”.

So its into recovery and couple nights in the room service world of rest and relax hospital style and then we are ready to head home for the extended recovery.

Looking back, that would have been so easy.

As it was, the nightmare had just begun . . .

There were passages in the next several days through which I almost lost my way. An indescribable, restless world of worse than pain torment carried me to the edge of oblivion. It is a condition, in a place not to be related to the healthy; and you never want to be so ill as to go there. Why this hell on earth? No one knows. Not clinically. Was it mental, Perhaps. But it was physically “Mental”. I am strong of will and yet I found myself to be helpless in its grasp. My only saving grace was the fuzzy realization that each night when I was alone in my misery; each night when it was at its worst, each night was not quite so bad as the night before! Their was a good chance I would be spared. Eventually. If I could just hold on . . .

I have held on.
I have my own programmer, from Medtronic the manufacturer of the deck-of-card sized receiver installed in my chest , under the skin , just below my right clavicle.
I have the limited ability to make my own adjustments with a programmer of my own. On September 13th , a month and a week after my surgery i received a “final” programming and permission to return to Hawaii.
We flew home the next day.
The programming held. I felt strange in my own skin but , no tremor.
For two days.
On October 15 th , our 39 th anniversary , my world began to disintegrate once more. For Vancie it was doubly difficult as I was in no mood to celebrate. ( I’m sorry Babe ).
Over the next several days; many conference calls to UCSF and many failed attempts to correct my programer and I found myself in very grave condition.
Vancie saw clearly that I must return on the next plane to San Francisco. She was right. She was also knee deep in the work of building her new jewelry business. A promising enterprise being built around her spectacular shell and pearl designs. A business in need of her attention while she had been attending to me. So I determined to fly solo to the Mainland, well aware of what I was facing; I did not let others know . Vancie knew it would be difficult but she also knew I could, and would, manage the flight. To add a few fragments to the hand grenade that was about to explode in my life; I went off my medicine.The positive effects were all but gone. The maladjusted programmer was now raising hell with my brain. There was nothing to do but tough it out and go.

The car pulled to a stop at United Airlines curbside baggage check in. The agent was tending to a cranky
group of tourists. So I kissed my beautiful wife goodbye as she watched me weave and lurch and stumble into the airport crowd.

Alone I would go; but could only travel with the assistance of many wonderful people. The man who volunteered assigned to man who pushed my chair through the checkinThe girls at check-in took one look at me and ordered a wheel chair. When they heard my story they made sure I had a window seat with no one sitting next to me. They notified the flight crew. Because I was arriving as other passengers were boarding , I could not be pre boarded with the lift thru a side door. Boarding was well under way when I reached the aircraft. I would have to reach my seat under my own power. The extra wide aisle at first class was hardly negotiable by my spastic legs the aisle then narrowed again into business class, and narrowed even further in coach. The wait, while the dazed and confused tried to stuff over sized carry ons into straining overhead bins, was intolerable. The flight lasted just over 5 hours or just shy of eternity; depending on whose time frame you measured by.
Arrival into SFO was the same story in reverse. I had to find a taxi that was willing to take me across the Golden Gate Bridge to other side of the bay. The first one explained to me in perfectly spoken Arabic why he could
not assist me; the second cabby was more than happy to be of service which he made clear in Portuguese.

I soon found myself standing in front of the Ridgewood Rd. home of the Mc Kinney family; the sheltering home in the forests of Kentfield where first I sought shelter after my surgery. The retreat where friends and family guided, nurtured, reassured and protected me from the dragons of my mind. I am dead tired and have not taken my medicine in 52 hours. I am physically demolished.

In the morning I will find my way to UCSF.

So Morning has come, and I find myself again at the Divisadero St. Neurology Department at UCSF Mt. Zion Hospital. For three days now I have been with out full benefit of my medications Relying only on the presence of the neural implants now completely out of adjustment.

The five women I referred to earlier have gathered around me and fixed their eyes on the current readout from the Medtronoic Master programmer.

In the course of the next several hours they put me through my paces. Trying various settings and combinations of settings they begin to see and pursue a program that would lead to no tremors and eventually to the return of much of my pre-Parkinson’s capabilities. It is a rigorous and challenging process.
At one point they determined it would be necessary to completely switch “OFF” my newly installed array of implants. A first. They advised me of their intent and wanted to be sure I was compliant. Trusting the assembled competency around me I nodded a go.
They looked down at the programmer, entered the adjustments and looked back at me. I sat as still as I could. My body drooped into a lull for a second and then,
like a madly careening marionette, each limb responding to a different operator, my body left my control. They needed me to attempt a variety of maneuvers relative to the programming. Like a spastic seal I dutifully performed the tricks expected of me and when they finally reengaged me ; I was calm. Close enough anyway. It was the most stable I had been in years. There were strange peripheral sensations, hints of lingering malfunction, and my own innate skepticism, but I was calm.

That was six weeks ago. athere have been some return bouts. I h

NOTE :

San Francisco’s homeless population plummeted by more than a quarter in the past two years, a dramatic change Mayor Gavin Newsom says is a credit to his policies of cutting cash assistance to street people and aggressively moving them into housing with counseling services.

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