Tagesbuch: A Parkinson's Diary

by Stephen Schiff

2/15/05

 

Here I sit my heart swelling with nostalgia. It pumps through me like hot blood. If only I could make a wish and return to what seems to me a happier time. A simpler time. CHILDHOOD.

Before I started psycho-analysis people warned me that I would uncover the latent misery in my psyche. Childhood would be revealed as the wellspring of all my adult hang-ups and sorrows. It was happy? No, you just papered over it to seem so. Well, hereís a NEWSFLASH. I was a happy boy. I had friends. Played pranks. Did well in school. If the teachers sometimes thought I was a wise-ass this protected me from being seen as the teacherís pet.

I lived in the security of a middle-class home in Morristown, New Jersey. And I tell you now that my dearest wish is to return to my boyhood home and live out the rest of my life as a 11 year-old with my friends the three Bobs, Michael Barry and Russ, a displaced 36 year old ,Texan who took me for motorcycle rides and runs in the country with his dogs Maverick and Fritz. I was in the 6th grade. Mrs. Mac., who pronounced Ďcarí, Ďkaahí making her sound like President Kennedy, was my teacher. She called everyone by nicknames. In recognition of my small but nimble physique she called me "Shifty".

I guess I peaked early although my life was good up until I got Parkinsonís at the age of 36. In fact there may have even been happier years than the year I was 11. Yes, I remember moments when I would burst out in existential ecstasy. "Iíve died and gone to Heaven!" But nostalgia, the dust of a thousand memories, settles on the earlier time in my life. The time, balanced between two worlds, when I had found my foothold in the world of adults while at the same time ruling over my small piece of the kingdom of childhood.

2/25

Americans like to look for heroes. Need to, in fact. They even want heroes among their disabled citizens. Christopher Reeve was a hero. A real life Superman. Lance Armstrong, likewise. Helplessness, despair, hopelessness are not what we want to see. Because we are believers in the will. The indomitable spirit that can conquer everything and overcome anything. If a frog can regenerate a missing leg so can you . If your will is strong enough. At the root of this, of course, lies a complete denial of reality. There are circumstances when "all the kingís horses and all the kingís men" canít put back what illness has destroyed.

3/ 1/ 05

Illness, by this I mean chronic , serious illness and physically disabling conditions, callously mocks this mythology of the will. The ill person sustains hope by looking for things to do to counteract the damage done by the illness . The person thereby has a focus , a goal, a purpose for fighting on. This is a psychological benefit which I donít deny but it may not touch the independent, insidious, disease process. The first thing a chronic illness teaches us is humility. The person becomes an eye-witness as gradually the body succumbs. Relentlessly it is worn down. In spite of his noblest efforts.

Will the compassionate conservatives be there for those who cannot be heroes?

3/3/05

Today is worse than yesterday. I can hardly decide between orange juice or grape juice without the choice becoming exhausting and overwhelming. It is very much like a paralysis of the will. The slightest thing seems like too much. And yet I manage to walk the dog, phone for Dr.ís appointments and complete a number of my domestic chores. Physical tasks offer me a respite. Thank G-d for the recent spate of snowstorms which allowed me to shovel out my walk. (my son did the more difficult driveway each time.)

I mentioned all the time I spent on the telephone, let me tell you, accessing services is perhaps the most difficult job of all. Let me give you an example. Because my voice is quite weak I researched , on the web , a program designed to help Parkies improve their speech. Itís called the Lee Silverman Vocal Technique (LSVT). I was able to go the web-site where practitioners trained in this technique were listed. "What a snap," I thought. "Iíll be hooked up with a certified LSVT therapist in no time." Three days and many phone-hours later I still hadnít found anyone in my area who met all of the following criteria: 1) knew the LSVT and was certified in its application; 2) provided the proper intensity and structure recommended for this technique ĖItís 4 hours per day , four days a week for four weeks; 3) accepted my insurance, and 4) returned my phone calls. In fact, I got so much practice speaking on the phone to machines and to various automatons that I thought I noticed an improvement in my voice The perverse but possibly true thought occurred to me that maybe this Ė a Kafka-eske exercise in anomie- WAS the Lee Silverman Technique. The fact that the speech clinic at one of New York Cityís major teaching hospitals has, as of today , yet to return even one of several messages that I left on their collective answering machines lends credence to this hypothesis. Assuming, that is, they believe they are indeed helping people.

3/07/05

I am a proud member of the group of animals classified as primates. There are many benefits to belonging to this species among them that primates are for the most part very social. They play together, groom one another and establish affectional bonds. However the very same mechanisms which promote social, co-operative bonds work to create divisions between individuals within groups. What Iím getting at here is the notion of hierarchies within primate groups. Now let me press on to the point. Within the social order of the monkey there is none lower than that of a particular monkey who does not fit in with the group. This monkey is in some way marked as different than the others .This difference may lie in size, color, skill or intelligence (too little or too much may be equally deleterious.) When the other monkeys pick their players for the winning team the monkey left at the very end of the pick is the low status monkey.

While the low status monkey suffers social ostracism at times and has less access to the "goodies" of primate life there is still hope that he or she may rise in the social hierarchy. Perhaps a previously undiscovered talent for finding the best bananas suddenly manifests itself. Now the former low status monkey emerges as a star.

Worse off than the "low status" monkey is the "no status" monkey. The no status monkey is not picked last. He is not picked at all. He stands isolated, outside of the group. And this is the unfortunate position in which many chronically ill people find themselves.

INT. RESTAURANT DAY

An upscale suburban diner. SAM and CAROL are seated at a booth. They peruse their menus for a moment and look up at the approaching WAITRESS. The WAITRESS sidles up , poised to take their order.

WAITRESS

Whatíer ya haviní?

CAROL

Ensalato Italiano...no mushroooms...no toast...

Iced tea to drink.

WAITRESS

(continues to look at CAROL)

Whatís he haviní?

SAM

(raspy, barely audible voice)

I ím right here!

WAITRESS

What did he say?

SAM

(waves hand)

Hello. Hello.

The WAITRESS continues to stand, pencil on check-pad, eyes on CAROL.

CAROL

Er....heíll have a Greek omelette, fries and decaf cofee.

And invariably when the meal is done the WAITRESS gives the check to....

CAROL.

This is not an atypical interaction. The no status monkeys among you will recognize it immediately.

3/10/05

I suppose some readers are upset that I seem to be feeling sorry for myself. Thereís no question about it. I AM feeling sorry for myself. Professionally I went from being an energetic, highly respected young Psychologist / Psychoanalyst beginning to reap the rewards of the many years of study and training I had put in and turned into a slow, shaking, stiff, perpetually sleep-deprived, underweight wreck of a man with a face as expressive as a mummyís. I n short a no status monkey.

 

 

 

3/11/05

Let me pursue the theme of pity for a while longer. As far as I can tell feeling sorry for yourself is taboo for anyone who suffers. Attempting to elicit pity from others is equally taboo. Whatís so bad about pity or self-pity? I think this goes back to our heritage of self-reliance. Americans cloak their fears of dependency in lots of smoke over the value of self-reliance. I once worked with a blind man who came to New York City from Spain. He told me that the difference between the United States and Europe was that when he went walking in any city in Europe and he came to a curb, someone would invariably, in less than minutes, take his arm, and, without being asked, help him across the street. In the United States he would stand indefinitely at the crosswalk until he was finally able to find someone to respond to his pleas for assistance.

What is the reason that Americans react this way towards those whom we perceive as in need? I think the answer lies in feelings of inferiority and worthlessness which are deeply etched into the shadows of the American psyche. Recall for a moment the historical context of the settlement of the "new world."

With the exception of Native Americans we all came to this country as refugees of some sort, fleeing political, religious, and/or economic oppression. While America was viewed as a land of opportunity and second chances these people were attempting to make a fresh start because they were not making it in their countries of origin .Although it would be unkind to brand them as "losers" they probably felt as though they were. As a result the psychological baggage refugees carried contained heavy doses of a sense of having failed, of having been shut out from the mainstream and of feeling less worthy in comparison to those Americans who by some miracle Ė and much help from the Native Americans they came to scorn -survived transplantation from, say, England, to colonies like Plymouth and Jamestown.

These "losers" were determined to prove they were winners. For the succeeding generations this involved not just economic success but acceptance into the wider culture. To be a "winner", to blend into one great homogeneous society yet to rank above others in the social pecking order is the true American dream. And to be a "loser" is the true American nightmare.

The American ethic of self-reliance tells us that if you are a "loser" it is your fault. You are responsible for your own fate. Therefore to feel sorry for yourself is just a waste of time. But the taboo over self-pity reaches into an even darker side. The person who is the object of pity Ė his own or others- holds himself up like a mirror. Looking in the mirror he sees the face of failure. Others see not just a loser but their own private face of failure threatening to be made public. The only hope of wiping away the sin of failure, of obliterating from consciousness this nightmare of being exposed as a "loser" is by acting as if one is in control of oneís fate. As a threat to this desperately needed degree of control, self-pity, if indulged, would become subversive.

Apropos of this the 70-something mother of one of my dearest friends, a woman who had been kind and supportive to me and my family for many years, came over to me at a dinner party just to say, "Well. You certainly turned out to be a failure." I stood there open-mouthed unable to respond. Finally, asking for no pity, I returned to my seat. Several months later, I am told, she began to show signs of senile dementia. Life goes on.

 

03/18/05 Ė 3/22/05

Maplewood is a picturesque town. In Spring the fragrant air blankets beds of fertile soil nurturing shoots of dew-topped grass while the birds with their chirp-chirping settle into freshly made nests. In Summer the steady spray of neighborhood sprinklers arcs above the children playing barefoot on tonsured lawns, keeping the occasional dog walker from violating this small patch of order in the universe. In the Fall clusters of rust-colored foliage framed in pale yellows and burnt oranges burst before your eyes. The circle of life continues as the trees shed their many-colored coverings and stand naked , starkly, their black limbs reaching towards you with knobby witch-like fingers. Now Winter comes cloaking the trees in a pristine mantle of snow. The birds are gone. The hungry deer strip away bark from the trees. Some will not survive.

03/23/05

When I first came to Maplewood there was a woman I knew only as "the jogger". She was at least 60 years old with skin hardened by the elements. I would see her at sunrise as I drove to the station and when I returned in the twilight she would be out running again. On weekends my wife and I sometimes passed her on our walks. Winter, Spring, Summer or Fall she loped along the perimeter of the town. She never stopped. to chat although now and then she acknowledged me with a thin smile and a nod. She dressed functionally- a beige, woolen cap, sweatshirt, and mittens, losing the mittens and cap when it got too warm. For several years she remained a fixture like Big Ben or Old Faithful. Then one day I stopped seeing her. She had disappeared. Gone without a trace.

I often wonder about "the jogger." Could it be that she was just plucked from the earth like a cotton boll, to be deposited in some cosmic gunny sack which existed only in some unnamed Ė and unfathomable Ė alternate dimension? A snapshot of her- arms swinging, knees pumping - is fixed in my memory. But didnít she exchange the sweatshirt for a light jacket in the summer? And wasnít there an older man who ran with her sometimes? And wasnít there a conversation (with whom?) speculating about her having an enlarged heart. No matter. She was not a person to me but rather a point of reference. But I do wonder....

 

 

3/28/05

People disappear all the time. They get old; they get sick; they get disillusioned; they get ground down by the indifference of life to their particular dreams and talents.

They withdraw feeling worthless and unimportant. In every town, in every city, in every state of the USA, people disappear daily. Our very own desaparecidos.

Where do they go? Many years ago I met a rather distinguished looking, white-haired, gentleman, a tall widower with a pencil- thin mustache. At the time he was dating one of my aunts. This man took unusual pride in how straight he still stood. My aunt quickly became his most vociferous fan. "Lawrence, show everybody how straight you can stand up."; or "My, look how straight he is when he walks." The visit was peppered with comments like these which were innocuous enough by themselves; but, they showed a certain degree of insensitivity (I hesitate to say sadism) when the context of the visit was taken into account. The context being my worsening Parkinsonís symptoms and my inability to even rise from a chair without assistance.

A year or so later while visiting my aunt I inquired about her tall, straight suitor. I offered my most sincere condolences upon learning that he was no longer among us and inquired as to the circumstances of his death. My aunt, who didnít seem the least bit perturbed by the topic, proceeded to tell me this story. She explained that Larry died when he suffered a heart attack driving on the Interstate en route to meet her at a restaurant. Police believe that he had first fallen asleep at the wheel , then, somehow continued to drive without incident before his heart gave out. Now hereís the interesting part. The car was found 60 miles away from the restaurant in the direction opposite to where it should have been going.

It would be easy to conclude that he had just gotten lost or confused, but my aunt added one critical piece of information which throws a different light on the events of that night: the route he was taking lead directly to his former home. The home where he had raised a family. The home he had left after his wifeís death. Picture this fastidious, precise septuagenarian driving into the night, his mind high-jacked by some unconscious desire to return to the place where heíd spent more than half of his life. Imagine his bliss. Guided through the darkness, on automatic pilot, cocooned in the warmth of memory, secure in the supreme trust that tonight he would reach his destination and, when he did he would be home Ė forever. Oh, lucky man!

 

3/30/05

Thereís a saying that says, "A city is judged by the way it treats its strangers." The truth of this is attested to by ancient literature. In the Bible thereís Sodom and Gomorrah; two cities whose wickedness was reflected in their execrable treatment of strangers. In Greek literature thereís Oedipus, who, blind to the identity of his father, kills a stranger on the road only to discover that the stranger was his own father.

I, myself, have great anxiety in the face of strangers. This is part of my legacy as the son of a Holocaust survivor. Strangers, I learned early on, were, at best, to be regarded with great suspicion and, at worst, with terror.

Of course I, like many others, had learned to put on a social mask, a cheery facade of friendliness to cope with the outside world. This wisdom was backed by the authority and gravitas of such greats as Rogers and Hammerstein. Who among us has not heard Julie Andrews sing:

Whenever I feel afraid,

I hold my head erect.

And whistle a happy tune,

So no one will suspect,

Iím afraid.

(copyright Rogers & Hammerstein)

And it works! Or at least it used to work for me.

But having Parkinsonís has put me in touch with vulnerabilities for which I long ago had developed air tight security measures. Itís as if I were a turtle that lost its shell. I startle more easily. I am more fearful. Whenever I go out Iím on alert. I must be vigilant, ready for whatever surprises may pop out at me. Like the proverbial boy scout I must "be prepared." However, since novelty and spontaneity make life interesting I am often torn between choosing whatís comfortable and boring; versus, whatís anxiety provoking and exciting.

Because people with Parkinsonís have a deficiency of the chemical dopamine they are unable to calm themselves as well as normals. As a substitute for the smooth, automatic bio-chemical processes which kick in when most of us are startled, surprised or frightened the person with Parkinsonís turns to routine and regularity to provide security. If taken too far (and this can be a fine line) the person with Parkinsonís will find himself among the company of the desaparecidos.

What does this have to do with our discussion of strangers? The stranger incorporates the new, exciting, novel, forbidden and (potentially) dangerous. The stranger is relegated to the category of the "other". If youíll permit me an analogy with Judaism-the stranger is viewed as "trefe"; we are "kosher." Every culture has this basic split between "us" and "them." Between the "good guys" and the "bad guys." Until he proves himself to be otherwise the stranger is the "bad guy." And this is why a city may be judged according to the way it treats its strangers. To be kind to strangers is not only to brave the unknown but also to experience and affirm the common bonds which exist between human beings across cultures. It is in caring for a stranger that the divide between "us" and "them" is dissolved and the fractures of prejudice are healed.

4-05-05

The person who has a chronic, physical or mental illness often finds himself pushed onto the margins of society. Other people may regard him as odd, difficult, dim witted, or dangerous. Mothers whisper to their children to keep away from him and cross the street when they see him approach. He is the stranger, par excellence; a stranger in his own land.

The person who feels like a stranger faces a difficult social dilemma: On the one hand he faces increasing social isolation; on the other, imminent rejection. How can he overcome his anxieties and reach out to those who are strangers to him? The advice given by well-meaning advocates of the "I create my own destiny" approach to life is too glib and simplistic for my taste. It goes something like this: reach out to others and they will respond to your gesture of friendship. Donít be afraid to take the initiative. Even if, at the time, youíre not feeling particularly good about yourself. Donít give in to narcissistic self-absorption. Look outside of yourself. Look for what you CAN do; not what you CANíT. Above all think POSITIVELY.

This sounds like pretty good advice. Before I got Parkinsonís I might have said the same thing. So what bothers me about this? I can only say that it leaves me feeling that something is not right. Something is off kilter. The equation isnít balanced. It is not the whole story.

4/12/05

When my son, Jeremy, was 7 he joined the cub scouts. I wanted to be involved and was excited to sign him up. I knew that Parkinsonís might affect my ability to be involved in certain activities so after the meeting I went up to the leader and told him about my condition. "No problem," he said after listening politely. The next meeting we divided up various tasks in preparation for our annual trip. I volunteered to collect the trip money from each member, keep track of the monies and turn it all in by an agreed upon deadline. This gave me a chance to interact with the other fathers (and the occasional mother.) People were friendly to me over the phone.(At the time my voice was stronger than it is now although it was showing signs of deterioration.) The week before the trip I handed in the money along with the list of people going on the trip. The money did not go to our local pack but to a central regional office. At the local meeting before the trip I sat half day dreaming in the school auditorium while plans for the trip were finalized. The cubs ran up and down the aisles with their pals careful that their horseplay didnít get so rough as to draw the attention of the adults. Suddenly I heard someone say my name. The leader was explaining to one of the parents that there might still be time for her to give in her childís trip money. Sheíd have to talk to "Steve Schiff". "Iím right here." I said in as loud a voice as I could muster while waving broadly to get their attention. "Whereís Steve Schiff? I know I saw him earlier," exclaimed the leader. Once again I called out, "Here!" I began to stand but my legs were too stiff so I remained seated. Then the leader looked right at me. "Finally," I thought, "weíll clear this up." But it was not meant to be. "I guess heís not here," the leader opined as I sat there in disbelief. You see, to all these people I was invisible. Not just to the leader. Not just to the inquiring parent. But to all of the fathers and mothers in the scout troop. In their eyes the man who was unable to stand, who made jerky movements, whose face appeared expressionless- the man sitting right there in the auditorium- could not be the same person as the one who collected the money for the trip. Despite my actions I had become a desaparecido.

There is a certain degree of grandiosity and arrogance with which the average person goes about their day. Tragedies confront us daily right in our living rooms: thousands dying in earthquakes, sunamis, floods and other natural disasters.; millions displaced and uprooted, their homes destroyed by war, famine or disease. How do we live with this knowledge? We delude ourselves. We convince ourselves that this could not happen to us. Somehow, because we have been untouched by disaster, it must mean that we are special. We believe we are favored by G-d or the powers that be and that we will continue to enjoy this privileged position. You may recognize this as another version of the "us" / "them" mentality. It is only when it happens to you or to someone close to you that the armor of denial is breached. It is only then that we stop to see "them" in "us".

As for the "mind over matter" advice givers, they exhibit their arrogance in the belief that the physical body can be controlled, even dominated, by "correct" thinking. My experiences with Parkinsonís have taught me that there are times when no amount of psychological legerdemain will stop a degenerative neurologically-based illness; nor is any current type of intervention a match for the destructive power of such neurobiological dysfunction.

What people need when they are battling a chronic illness is friendship, social support, and empathy. They need to listen and to be listened to. They need to have the best in them acknowledged. Waging a successful fight against disease means transforming your perspective on life. This is the place where humor, courage and mental toughness play a role. But nobody succeeds in isolation. Even Newton credited his success to having "stood on the shoulders of giants".

4/6/05 & 4/12/05

The way you wear your hat.

The way you sing off key.

The memory of all that.

Oh no, they canít take that away from me.

(Copyright Cole Porter)

 

 

Throughout my life I always took comfort the fact that I wasnít terribly dependent for my happiness on external things. Donít get me wrong I enjoyed my toys but I also knew that toys donít create lasting happiness or life satisfaction. I also knew that external things were ephemeral. Instead I based my satisfaction with my self and my life on attributes and qualities which I felt would endure in the face of lifeís vicissitudes.

I can remember how when I was in college I used to walk all over the city. I laid down some serious shoe leather from the Brooklyn bridge to Rockefeller Center and, from there, all the way up to Columbia University. At the time I would sometimes try to imagine myself far into the future, an old man, no longer working at his chosen career but, instead, put out to pasture.

When I thought of myself in this way I was still able to hold on to positive feelings about myself. I imagined myself at 80 still walking around the city like a twenty year old . I had no doubt that I would still have strong legs and a nimble stride. "If I ever need to work when Iím old I could always be a messenger," I told myself.

I was also quite a talker, quick, facile but not glib, and garrulous. Because I had a good ear I also used my voice to do imitations Ė Cagney, Bogart, Chico (of Marx brothers fame), and even a passable John Wayne. "I can always make people laugh with my imitations. They canít take that away from me." Or so I thought.

But the greatest gift that I possessed, a gift which nurtured me as I was growing up and nursed me through many an emotional crisis, was being able to play the violin. This gave me inner peace, solace and centeredness. My ego dissolved like salt in the ocean as the emotional discharge of music making combined with the sheer muscular eroticism of violin playing. In my darkest hours - the break-ups, the disappointments, the set-backs- I turned to the violin in the assumption that she would always be there. Short of death I never envisioned the day when I would not be able to play the violin.

Parkinsonís disease changed all that. Now all my assumptions, all the beliefs about myself that I held so dearly, all that I had found so enduring and lasting, were shattered to bits. Parkinsonís took away my balance, my ability to walk well, and my ability to do related activities such as dancing. It took away my ability to speak clearly and at a normal volume. My ability to do imitations has been derailed by the disease process and my ability to sing has deserted me. In synagogue my mouth opens but nothing comes out. And Ėthe coup de grace- Parkinsonís took away my ability to play the violin.

4/13/05

 

My List of Things That Parkinsonís Canít Take Away from me

    1. My fighting Spirit
    2. My Sense of Humor
    3. My Imagination
    4. My Capacity to Enjoy Life
    5. My Sense of Wonder.

This is my current list of qualities that I believe will endure in spite of how my Parkinsonís progresses. Am I still just being arrogant? Am I in denial? Will Parkinsonís eventually claim the remainder of my life-space until nothing is left?

This reminds me of a scene from the movie, "Monty Python and the Holy Grail." Two knights square off for combat. The first knight hacks off his opponentís arm. Then his other arm. Then his legs. A bloody torso is all that remains. But the second knight never gives up. The bloody torso continues to hurl verbal abuse, pouring contempt and scorn on the first knight who leaves the scene the obvious, but decidedly flustered victor. Will I be the second knight? Perhaps but no one knows.

When men are grouped together they talk about what they do, their job if they feel it gives them status, and their accomplishments, present or past. You might guess that this type of situation is about as attractive to me as being drawn and quartered.

 

 

INT.-CATERING HALL ĖDAY

 

 

Any gathering that includes food, drink and liquor.(cigars optional)

SAM approaches two men talking.

LEW: I drove over tonight in my new Porsche Carrera....

JACK: Very nice. Youíre leasing?

LEW:No...year end bonus.

JACK: I decided to take mine in stock options...boring but Iíll retire by the time Iím 55.

As SAM walks over the men notice him and extend their hands to greet him.

LEW: Lew Pine...

JACK: Jack Whit...good to meet you, uh....

SAM: Sam...Sam Sweet....

SAM shifts awkwardly from his right to left foot. He is sweating and has an occasional tremor in his left hand. This causes the wine in his glass to swish.

JACK: So, Sam, what do you do?....

Lew here is in textiles. Iím With the Wall Street regulatory board.

SAM:Iím a writer.

JACK: What do you write?

SAM: Screenplays.

JACK: (loudly so others can hear) Say, Sam here is a screenwriter.

JACK puts his arm around SAMís shoulder.Several people look up at the men as JACK continues.

JACK: Anything weíd know?

SAM: Well...not exactly. Iím trying....

JACK reclaims his arm.

LEW: Well Iíve got to go freshen my drink.

LEW exits. SAMís tremor has gotten worse. He accidentally spills some of his wine on the carpet.

JACK: There was something I had to tell Lew....Good luck with your writing.

JACK exits.