Tag Archives: Amigo Mobility

Isadora Duncan’s Autobiography: Chapter One

[youtube]https://www.youtube.com/watch?v=BIdqNKIEBqQ[/youtube]

Joel’s lengthy note followed by Isadora Duncan’s autobiography:

Isadora Duncan entered my life in the late 1990s. This was a period of significant change. I lost the ability to run; then walk, as a result of spinal damage caused by radiation treatment that cured me of cancer. While my physicians were deciding on a form of treatment (that did not work), I tripped over my feet and fell against the sofa dislocating my right shoulder. At the same time, the Research Triangle Park area of North Carolina, where I lived, suddenly moved from prosperity to dearth, and I could not find work as a technical writer.

Planning on a temporary California stay to earn enough to pay the mortgage on my family’s North Carolina home, I took up my friend David Phillips’s offer to stay with him in San Francisco. I quickly found work in the Silicon Valley writing a manual on a new KLA-Tancor’s product. The product analyzed silicon wafers as they were being manufactured and identified and destroying damaged wafers. The work was intellectually challenging and my co-workers cheerfully helped me understand the emerging technology. The pay was good. I was able even to purchase my first mobility device—a small yellow Amigo scooter which changed my life by its ability to cross boundaries hitherto limited by my disability.

Previously, I could not go from my desk to the cafeteria. Frequently, I fell because the cane I used could not support me. When I first arrived at work with my scooter, my co-workers (appreciative of technology to solve problems) applauded. [The video below of an Amigo travel school gives an indication of the freedom, maneuverability, and lightness of weight of the scooter my co-workers applauded.]

[youtube]https://www.youtube.com/watch?v=fiZYwicqG_4[/youtube]

At the same time, I became a special student at the San Francisco Isadora Duncan School of Dance where Rosario my teacher had a gifted eye for movement. My experiences with the military-style approach of standard rehabilitation were drudgery compared to the joy I felt as a dance student. My teacher encouraged my fledgling efforts to make use of the motion available to me in the aftermath of sudden and frightening paraplegia.

On Saturday mornings I would arrive at the reconverted former Sears Roebuck building on Army Street, near the Mission District. As I moved on the mat, I was surrounded by beautiful women who moved gracefully. Without any sense of self-consciousness, my fellow students showed nude bodies as they changed to dancing attire in the dressing room.

Since then, I have been fortunate with friends, rehabilitation therapists, and others who have encouraged in me a joy of motion I have come to increasingly appreciate. A year ago this month, I had major abdominal surgery. The surgery removed kidney cancer as a threat to my life. It also required a six month recovery period. I am now emerging from this period which reduced my ability to move and reinforced a tendency toward laziness. O.K. I admit it. I am lazy.

As I write this, I have conscientiously resumed moving again concentrating on four critical areas: 1. Standing. I can stand but not without holding on to something. Now, as I hold on to grab bars, the foot board of my bed, the kitchen table, I am increasing my endurance. 2. Lifting my arms above my head. I have a series of exercises for doing so including an iPromise app. This is therapeutic for my right arm, damaged by the long-ago dislocation and now making it easier to dress myself. 3. Breathing. Breathing is good for all mammals. 4. Crawling in private. Crawling is good for me, but it freaks people out on the rare occasions I do so in public.

crawling

I am currently writing my next column for e-architect-uk addressed to architects on the housing requirements of the elderly and disabled, focusing primarily on the retiring Baby Boomers. The Baby Boom generation is the largest in U.S. history and based on money spent, the best educated. Yet, over 90 percent of the housing stock is NOT wheel chair accessible. Massive construction is required during a period when major demographic shifts are taking place. Especially worth noting is most of the U.S. population lives in suburbs. Automobile-dependent suburban life is inappropriate for an aging population for whom driving becomes contraindicated.

The solution to the aging U.S. population increasingly at risk of developing disabilities is for society to recognize the value of our talent. All too often, elderly and disabled individuals are regarded as a drain on resources as commentators focus on the cost of Medicare and Social Security. When our talents are recognized encouraged, and employed, we will become contributors rather than a drag on economic development.

The ongoing research on the brain indicates a major contributor to productivity as we age is to use our bodies. Smart architects will design housing where motion is safe for the disabled and elderly and encouraged. I have been writing about how to improve our communities and indeed to plan for the development of new cities. My last two columns have focused on developing a new city in Wyoming.

http://www.e-architect.co.uk/columns/joel-solkoffs-column-vol-ii-number-5

http://www.e-architect.co.uk/columns/joel-solkoffs-column-vol-ii-number-6

In area, Wyoming is the tenth largest state in the U.S. In population, it is the smallest of the 50 states. There is plenty of room in Wyoming for a new city of three million people. Three million is the size of the best known of new cities created in my lifetime: Brasilia.

Readers have asked, “What do you plan to call the new city? Naturally, it should be called Isadora. A new city should reflect the needs of its citizens. Our citizens need a city which encourages us to move our bodies as we improve our minds. Isadora Duncan was instrumental in making motion joyous. Let there be dancing. Let there be dancing in the streets ofIsadora.

[youtube]https://www.youtube.com/watch?v=mKtQWU2ifOs&ytsession=4O1vS2pioWwOVLLhLecqwEHZmGYpHpbkpxXFx7lNxIBkVTEygWOHv3sgSQ3SNSLhhpIvH8UXVkB2DV3uERTgVSs-zaXcvCpqnK4v_EB7NvvVVXRXx-ASd1m00vnBXT4Ez0Zb29saWffEUtuwkMWVplbK6RLrmzY5shzTtwxWLRqGlhoPJfOGm1ZOUp9B4b2UXUzBHX_TI_riWGMTRojEPnAzc62LJGDkU9oVIgyCT2xmrIsjYOgi1heyvqAj5K1HvU8drWryDbs6734wH2O1TV5FO2zWvhDBZABTBVhQN3xmN41zAnABDX0FOklN7sNw[/youtube]

MY LIFE by ISADORA DUNCAN

If my virtue be a dancer’s virtue, and if I have often sprung with both feet into golden-emerald rapture, and if it be my Alpha and Omega that everything heavy shall become light, everybody a dancer and every spirit a bird: verily, that is my Alpha and Omega.

—Nietzsche

Published by: HORACE LIVERIGHT, NEW YORK, 1927; Horace Liveright’s Foreword:

The manuscript of this extraordinary book was completed by Isadora Duncan some months before her tragic death, which occurred through an automobile accident in Nice on September 14th, 1927. The details of this accident were printed in American newspapers on the following day.

For many years Miss Isadora Duncan had planned to write this autobiography, and she completed the work in the early summer of 1927. Anyone who has ever been in correspondence with her will recognize her characteristic style. When she died the manuscript was not in type so she had no opportunity to read proof or make corrections, but the work as it is now presented to the public is essentially as she wrote it.

This work ends with Isadora Duncan’s departure for Russia in 1921. She had planned a second book “My Two Years in Bolshevik Russia,” from which America would have learned that great as was her admiration and sympathy for this struggling country, she had no political interests or affiliations; in fact, with the exception of Lunacharsky, Minister of Education, she never met any of the great leaders, and her activities there were confined to educational work.

INTRODUCTORY

I confess that when it was first proposed to me I had a terror of writing this book. Not that my life has not been more interesting than any novel and more adventurous than any cinema and, if really well written, would not be an epoch-making recital, but there’s the rub—the writing of it!

It has taken me years of struggle, hard work and research to learn to make one simple gesture, and I know enough about the Art of writing to realize that it would take me again just so many years of concentrated effort to write one simple, beautiful sentence. How often have I contended that although one man might toil to the Equator and have tremendous exploits with lions and tigers, and try to write about it, yet fail, whereas another, who never left his verandah, might write of the killing of tigers in their jungles in a way to make his readers feel that he was actually there, until they can suffer his agony and apprehension, smell lions and hear the fearful approach of the rattle-snake. Nothing seems to exist save in the imagination, and all the marvelous things that have happened to me may lose their savor because I do not possess the pen of a Cervantes or even of a Casanova.

Then another thing. How can we write the truth about ourselves? Do we even know it? There is the vision our friends have of us; the vision we have of ourselves, and the vision our lover has of us. Also the vision our enemies have of us—and all these visions are different. I have good reason to know this, because I have had served to me with my morning coffee newspaper criticisms that declared I was beautiful as a goddess, and that I was a genius, and hardly had I finished smiling contentedly over this, than I picked up the next paper and read that I was without any talent, badly shaped and a perfect harpy.

I soon gave up reading criticisms of my work. I could not stipulate that I should only be given the good ones, and the bad were too depressing and provocatively homicidal. There was a critic in Berlin who pursued me with insults. Among other things he said that I was profoundly unmusical. One day I wrote imploring him to come and see me and I would convince him of his errors. He came and as he sat there, across the tea-table, I harangued him for an hour and a half about my theories of visional movement created from music. I noticed that he seemed most prosaic and stolid, but what was my uproarious dismay when he produced from his pocket a deafaphone and informed me he was quite deaf and even with his instrument could hardly hear the orchestra; although he sat in the first row of the stalls! This was the man whose views on myself had kept me awake at night!

So, if at each point of view others see in us a different person how are we to find in ourselves yet another personality of whom to write in this book? Is it to be the Chaste Madonna, or the Messalina, or the Magdalen, or the Blue Stocking? Where can I find the woman of all these adventures? It seems to me there was not one, but hundreds—and my soul soaring aloft, not really affected by any of them.

It has been well said that the first essential in writing about anything is that the writer should have no experience of the matter. To write of what one has actually experienced in words, is to find that they become most evasive. Memories are less tangible than dreams. Indeed, many dreams I have had seem more vivid than my actual memories. Life is a dream, and it is well that it is so, or who could survive some of its experiences? Such, for instance, as the sinking of the Lusitania. An experience like that should leave forever an expression of horror upon the faces of the men and women who went through it, whereas we meet them everywhere smiling and happy. It is only in romances that people undergo a sudden metamorphosis. In real life, even after the most terrible experiences, the main character remains exactly the same. Witness the number of Russian princes who, after losing everything they possessed, can be seen any evening at Montmartre supping as gaily as ever with chorus girls, just as they did before the war.

Any woman or man who would write the truth of their lives would write a great work. But no one has dared to write the truth of their lives. Jean-Jacques Rousseau made this supreme sacrifice for Humanity—to unveil the truth of his soul, his most intimate actions and thoughts. The result is a great book. Walt Whitman gave his truth to America. At one time his book was forbidden to the mails as an “immoral book.” This term seems absurd to us now. No woman has ever told the whole truth of her life. The autobiographies of most famous women are a series of accounts of the outward existence, of petty details and anecdotes which give no realization of their real life. For the great moments of joy or agony they remain strangely silent.

My Art is just an effort to express the truth of my Being in gesture and movement. It has taken me long years to find even one absolutely true movement. Words have a different meaning. Before the public which has thronged my representations I have had no hesitation. I have given them the most secret impulses of my soul. From the first I have only danced my life. As a child I danced the spontaneous joy of growing things. As an adolescent, I danced with joy turning to apprehension of the first realization of tragic undercurrents; apprehension of the pitiless brutality and crushing progress of life.

When I was sixteen I danced before an audience without music. At the end someone suddenly cried from the audience, “It is Death and the Maiden,” and the dance was always afterwards called “Death and the Maiden.” But that was not my intention; I was only endeavoring to express my first knowledge of the underlying tragedy in all seemingly joyous manifestation. The dance, according to my comprehension, should have been called “Life and the Maiden.”

Later on I danced my struggle with this same life, which the audience had called death, and my wresting from it its ephemeral joys.

Nothing is further from the actual truth of a personality than the hero or heroine of the average cinema play or novel. Endowed generally with all the virtues, it would be impossible for them to commit a wrong action. Nobility, courage, fortitude, etc. … etc. …; for him. Purity, sweet temper, etc. … for her. All the meaner qualities and sins for the villain of the plot and for the “Bad Woman,” whereas in reality we know that no one is either good or bad. We may not all break the Ten Commandments, but we are certainly all capable of it. Within us lurks the breaker of all laws, ready to spring out at the first real opportunity. Virtuous people are simply those who have either not been tempted sufficiently, because they live in a vegetative state, or because their purposes are so concentrated in one direction that they have not had the leisure to glance around them.

I once saw a wonderful film called “The Rail.” The theme was that the lives of human beings are all as the engine running on a set track. And if the engine jumps the track or finds an insurmountable object in its way, there comes disaster. Happy those drivers who, seeing a steep descent before them, are not inspired with a diabolical impulse to take off all brakes and dash to destruction.

I have sometimes been asked whether I consider love higher than art, and I have replied that I cannot separate them, for the artist is the only lover, he alone has the pure vision of beauty, and love is the vision of the soul when it is permitted to gaze upon immortal beauty.

Perhaps one of the most wonderful personalities of our times is Gabriel D’Annunzio, and yet he is small and, except when his face lights up, can hardly be called beautiful. But when he talks to one he loves, he is transformed to the likeness of Phoebus Apollo himself, and he has won the love of some of the greatest and most beautiful women of the day. When D’Annunzio loves a woman, he lifts her spirit from this earth to the divine region where Beatrice moves and shines. In turn he transforms each woman to a part of the divine essence; he carries her aloft until she believes herself really with Beatrice, of whom Dante has sung in immortal strophes. There was an epoch in Paris when the cult of D’Annunzio rose to such a height that he was loved by all the most famous beauties. At that time he flung over each favorite in turn a shining veil. She rose above the heads of ordinary mortals and walked surrounded by a strange radiance. But when the caprice of the poet ended, this veil vanished, the radiance was eclipsed, and the woman turned again to common clay. She herself did not know what had happened to her, but she was conscious of a sudden descent to earth, and looking back to the transformation of herself when adored by D’Annunzio, she realized that in all her life she would never again find this genius of love. Lamenting her fate, she became more and more desolate, until people, looking at her, said, “How could D’Annunzio love this commonplace and red-eyed woman?” So great a lover was Gabriel D’Annunzio that he could transform the most commonplace mortal to the momentary appearance of a celestial being.

Only one woman in the life of the poet withstood this test. She was the re-incarnation of the divine Beatrice herself, and over her D’Annunzio needed to throw no veil. For I have always believed that Eleanora Duse was the actual Beatrice of Dante re-incarnated in our days, and so before her D’Annunzio could only fall upon his knees in adoration, which was the unique and beatific experience of his life. In all other women he found the material which he himself transmitted; only Eleanora soared above him, revealing to him the divine inspiration.

How little do people know of the power of subtle flattery! To hear oneself praised with that magic peculiar to D’Annunzio is, I imagine, something like the experience of Eve when she heard the voice of the serpent in Paradise. D’Annunzio can make any woman feel that she is the center of the universe.

I remember a wonderful walk I had with him in the Forêt. We stopped in our walk and there was silence. Then D’Annunzio exclaimed, “Oh, Isadora, it is only possible to be alone with you in Nature. All other women destroy the landscape, you alone become part of it.” (Could any woman resist such homage?) “You are part of the trees, the sky; you are the dominating goddess of Nature.”

That was the genius of D’Annunzio. He made each woman feel she was a goddess in a different domain.

Lying here on my bed at the Negresco, I try to analyze this thing that they call memory. I feel the heat of the sun of the Midi. I hear the voices of children playing in a neighboring park. I feel the warmth of my own body. I look down on my bare legs—stretching them out. The softness of my breasts, my arms that are never still but continually waving about in soft undulations, and I realize that for twelve years I have been weary, this breast has harbored a never-ending ache, these hands before me have been marked with sorrow, and when I am alone these eyes are seldom dry. The tears have flowed for twelve years, since that day, twelve years ago, when, lying on another couch, I was suddenly awakened by a great cry and, turning, saw L. like a man wounded: “The children have been killed.”

I remember a strange illness came upon me, only in my throat I felt a burning as if I had swallowed some live coals. But I could not understand. I spoke to him very softly; I tried to calm him; I told him it could not be true. Then other people came, but I could not conceive what had happened. Then entered a man with a dark beard. I was told he was a Doctor. “It is not true,” he said, “I will save them.”

I believed him. I wanted to go with him but people held me back. I know since that this was because they did not wish me to know that there was indeed no hope. They feared the shock would make me insane, but I was, at that time, lifted to a state of exaltation. I saw every one about me weeping, but I did not weep. On the contrary I felt an immense desire to console every one. Looking back, it is difficult for me to understand my strange state of mind. Was it that I was really in a state of clairvoyance, and that I knew that death does not exist—that those two little cold images of wax were not my children, but merely their cast-off garments? That the souls of my children lived on in radiance, but always lived? Only twice comes that cry of the mother which one hears as without one’s self—at Birth and at Death—for when I felt in mine those little cold hands that would never again press mine in return I heard my cries—the same cries as I had heard at their births. Why the same—since one is the cry of supreme joy and the other of Sorrow? I do not know why but I know they are the same. Is it that in all the Universe there is but one Great Cry containing Sorrow, Joy, Ecstasy, Agony, the Mother Cry of Creation?

MY LIFE CHAPTER ONE

The character of a child is already plain, even in its mother’s womb. Before I was born my mother was in great agony of spirit and in a tragic situation. She could take no food except iced oysters and iced champagne. If people ask me when I began to dance I reply, “In my mother’s womb, probably as a result of the oysters and champagne—the food of Aphrodite.”

My mother was going through such a tragic experience at this time that she often said, “This child that will be born will surely not be normal,” and she expected a monster. And in fact from the moment I was born it seemed that I began to agitate my arms and legs in such a fury that my mother cried, “You see I was quite right, the child is a maniac!” But later on, placed in a baby jumper in the center of the table I was the amusement of the entire family and friends, dancing to any music that was played.

My first memory is of a fire. I remember being thrown into the arms of a policeman from an upper window. I must have been about two or three years old, but I distinctly remember the comforting feeling, among all the excitement—the screams and the flames—of the security of the policeman and my little arms round his neck. He must have been an Irishman. I hear my mother cry in frenzy, “My boys, my boys,” and see her held back by the crowd from entering the building in which she imagined my two brothers had been left. Afterwards I remember finding the two boys sitting on the floor of a bar-room, putting on their shoes and stockings, and then the inside of a carriage, and then sitting on a counter drinking hot chocolate.

I was born by the sea, and I have noticed that all the great events of my life have taken place by the sea. My first idea of movement, of the dance, certainly came from the rhythm of the waves. I was born under the star of Aphrodite, Aphrodite who was also born on the sea, and when her star is in the ascendant, events are always propitious to me. At these epochs life flows lightly and I am able to create. I have also noticed that the disappearance of this star is usually followed by disaster for me. The science of astrology has not perhaps the importance to-day that it had in the time of the ancient Egyptians or of the Chaldeans, but it is certain that our psychic life is under the influence of the planets, and if parents understood this they would study the stars in the creation of more beautiful children.

I believe, too, that it must make a great difference to a child’s life whether it is born by the sea or in the mountains. The sea has always drawn me to it, whereas in the mountains I have a vague feeling of discomfort and a desire to fly. They always give me an impression of being a prisoner to the earth. Looking up at their tops, I do not feel the admiration of the general tourist, but only a desire to leap over them and escape. My life and my art were born of the sea.

I have to be thankful that when we were young my mother was poor. She could not afford servants or governesses for her children, and it is to this fact that I owe the spontaneous life which I had the opportunity to express as a child and never lost. My mother was a musician and taught music for a living and as she gave her lessons at the houses of her pupils she was away from home all day and for many hours in the evening. When I could escape from the prison of school, I was free. I could wander alone by the sea and follow my own fantasies. How I pity the children I see constantly attended by nurses and governesses, constantly protected and taken care of and smartly dressed. What chance of life have they? My mother was too busy to think of any dangers which might befall her children, and therefore my two brothers and I were free to follow our own vagabond impulses, which sometimes led us into adventures which, had our mother known of them, would have driven her wild with anxiety. Fortunately she was blissfully unconscious. I say fortunately for me, for it is certainly to this wild untrammeled life of my childhood that I owe the inspiration of the dance I created, which was but the expression of freedom. I was never subjected to the continual “don’ts” which it seems to me make children’s lives a misery.

I went to the public school at the early age of five. I think my mother prevaricated about my age. It was necessary to have some place to leave me. I believe that whatever one is to do in one’s after life is clearly expressed as a baby. I was already a dancer and a revolutionist. My mother, who had been baptized and raised in an Irish Catholic family, was a devout Catholic up to the time when she discovered that my father was not that model of perfection she had always thought him to be. She divorced him and left with her four children to face the world. From that time her faith in the Catholic religion revolted violently to definite atheism, and she became a follower of Bob Ingersoll, whose works she used to read to us.

Among other things, she decided that all sentimentality was nonsense, and when I was quite a baby she revealed to us the secret of Santa Claus, with the result that at a school festival for Christmas, when the teacher was distributing candies and cakes and said, “See, children, what Santa Claus has brought you,” I rose and solemnly replied, “I don’t believe you, there is no such thing as Santa Claus.” The teacher was considerably ruffled. “Candies are only for little girls who believe in Santa Claus,” she said. “Then I don’t want your candy,” said I. The teacher unwisely flew into a temper and, to make an example of me, ordered me to come forward and sit on the floor. I came forward, and, turning to the class, I made the first of my famous speeches. “I don’t believe lies,” I shouted. “My mother told me she is too poor to be Santa Claus; it is only the rich mothers who can pretend to be Santa Claus and give presents.”

At this the teacher caught hold of me and endeavored to sit me down upon the floor, but I stiffened my legs and held on to her, and she only succeeded in hitting my heels against the parquet. After failing in this, she stood me in the corner, but although I stood there, I turned my head over my shoulder and shouted, “There is no Santa Claus, there is no Santa Claus,” until finally she was forced to send me home. I went home shouting all the way, “There is no Santa Claus,” but I never got over the feeling of the injustice with which I had been treated, deprived of candy and punished for telling the truth. When I recounted this to my mother, saying, “Wasn’t I right? There is no Santa Claus, is there?” she replied, “There is no Santa Claus and there is no God, only your own spirit to help you.” And that night, as I sat upon the rug at her feet, she read us the lectures of Bob Ingersoll.

It seems to me that the general education a child receives at school is absolutely useless. I remember that in the classroom I was either considered amazingly intelligent and at the head of my class, or quite hopelessly stupid and at the bottom of the class. It all depended on a trick of memory and whether I had taken the trouble to memorize the subject we were given to learn. And I really had not the slightest idea what it was about. Whether I was at the head or the foot of the class, it was all to me a weary time in which I watched the clock until the hand pointed to three, and we were free. My real education came during the evenings when my mother played to us Beethoven, Schumann, Schubert, Mozart, Chopin or read aloud to us from Shakespeare, Shelley, Keats or Burns. These hours were to us enchanted. My mother recited most of the poetry by heart and I, in imitation of her, one day at a school festival, at the age of six, electrified my audience by reciting William Lytle’s “Antony to Cleopatra”:

“I am dying, Egypt, dying!

Ebbs the crimson life-tide fast.”

On another occasion when the teacher required of each pupil to write the history of their lives, my story ran somewhat in this wise:

“When I was five we had a cottage on 23rd Street. Failing to pay the rent, we could not remain there but moved to 17th Street, and in a short time, as funds were low, the landlord objected, so we moved to 22nd Street, where we were not allowed to live peacefully but were moved to 10th Street.”

The history continued in this way, with an infinite number of removals. When I rose to read it to the school, the teacher became very angry. She thought I was playing a bad joke, and I was sent to the principal, who sent for my mother. When my poor mother read the paper she burst into tears and vowed that it was only too true. Such was our nomadic existence.

I hope that schools have changed since I was a little girl. My memory of the teaching of the public schools is that it showed a brutal incomprehension of children. I also remember the misery of trying to sit still on a hard bench with an empty stomach, or cold feet in wet shoes. The teacher appeared to me to be an inhuman monster who was there to torture us. And of these sufferings children will never speak.

I can never remember suffering from our poverty at home, where we took it as a matter of course; it was only at school that I suffered. To a proud and sensitive child the public school system, as I remember it, was as humiliating as a penitentiary. I was always in revolt against it.

When I was about six years old, my mother came home one day and found that I had collected half a dozen babies of the neighborhood—all of them too young to walk—and had them sitting before me on the floor while I was teaching them to wave their arms. When she asked the explanation of this, I informed her that it was my school of the dance. She was amused, and placing herself at the piano, she began to play for me. This school continued and became very popular. Later on, little girls of the neighborhood came and their parents paid me a small sum to teach them. This was the beginning of what afterwards proved a very lucrative occupation.

When I was ten years old the classes were so large that I informed my mother that it was useless for me to go to school any more, as it was only a waste of time when I could be making money, which I considered far more important. I put up my hair on the top of my head and said that I was sixteen. As I was very tall for my age every one believed me. My sister Elizabeth, who was brought up by our grandmother, afterwards came to live with us and joined in the teaching of these classes. We became in great demand and taught in many houses of the wealthiest people in San Francisco.

cover

1927 Cover of Isadora Duncan’s autobiography

Note: I will be publishing Chapter Two of Isadora Duncan’s beautiful autobiography. Until then, please dance.

Thank you Project Gutenberg Canada. http://www.gutenberg.ca/ebooks/duncani-mylife/duncani-mylife-00-h-dir/images/cover.jpg

 

 

December motto plus optional isolation

CanceroustumorsurroundingrightkidneyDr. Jeniffer Simon, a caring and experienced urologist, Geissinger Medical Center, State College PA showed me on her computer this image–a cancerous tumor surrounding my right kidney, referring me to Memorial Sloan Kettering Cancer Center in New York City. “Unless you have surgery quickly, you will be dead in 10 years.” The date: April 5, 2013, 4 P.M. We hugged; I cried.

The order of this posting (typically presented in a hodgepodge of disorder):

  1. Motto
  2. Paraplegia and the recollection of previous cancers
  3. The last part of cancer therapy
  4. Optional isolation
  5. Joanna’s wedding
  6. This I believe

Motto

Make haste slowly is the motto.

Gold coin Emperor Augustus (63 BC to 14 AD) minted to display the symbol for his motto: "Make haste slowly."
Gold coin Emperor Augustus (63 BC to 14 AD) minted to display the symbol for his motto: “Make haste slowly.”

I first came across this seemingly contradictory expression when trying to learn Latin: Festina lente.

Unless one is in a situation such as mine, Make haste slowly appears to make no sense.

Speed and slow are opposites.

The last part of cancer therapy

My situation comes at the end of a difficult time.

The time began in April when I was diagnosed with kidney cancer and reached medical optimism after I left my home in State College, PA where the expertise to save my life did not exist.

This is my first "step" in getting to New York.
My first “step” in getting to New York.

I was referred to Memorial Sloan Kettering Cancer Center in New York City—a five hour car ride away. On August 8th, Dr. Paul Russo removed the cancerous tumor, saved my right kidney, and essentially prevented me from dying of kidney cancer. It was a gift of 10 years.

++++

In The Canary Murder Case by S.S. Van Dine, Philo Vance—almost certainly the most obnoxious snob in the history of detective literature—is helping his friend the district attorney solve a difficult murder. The district attorney says, “’Well, well! So the case is settled! Now if you’ll but indicate which is the guilty one, I’ll arrest him at once, and return to my other duties.’”

“’You’re always in such haste,’ Vance lamented. “Why leap and run? The wisdom of the world’s philosophers is against it. Festina lente, says Caesar; or, as Rufus has it, Festinatio tarde est. And the Koran says quite frankly that haste is of the Devil. Shakespeare was constantly lamenting speed. ‘He tires that spurs too fast betimes.’”

Still from the 1929 film version of The Canary Murder Case
Still from the 1929 film version, The Canary Murder Case

Vance, whose name in 1927 became synonymous with private detective, goes on to quote Moliere, Chaucer and the Bible on the subject.

My energy level is sufficiently low and my acuity high enough I understand Vance’s point without citing the additional paragraph.

Paraplegia 

For the past 20 years, I have been a paraplegic unable even slowly “to leap and run.” Paradoxically, in high school I received a letter sweater for running 2 ½ miles regularly during cross-country competitions. My best record was clocked running two miles in less than 12 minutes, hardly the Olympics, but good enough for Cheltenham High School  in Wyncotte, PA.

Yes, I would like to leap and run. There are a lot of things I would like to do that I cannot.

What I want to do is live life to the full and in the process make a contribution along the path I have committed myself.

I certainly have done a lot of living in the past 20 years as a paraplegic. In one of my three trips across the United States from sea to shining sea, I took my battery-powered scooter and drove it around the rim of the Grand Canyon.

In California, I watched my elder daughter Joanna train a horse to jump a fence. As I watched, the horse did something amazing. After going over the fence for the first time, the horse did a double-take, shaking its head as if to say, “I do not believe I did that.” Joanna’s smile of accomplishment…

In Santa Cruz, one glorious day, Amelia my younger daughter and I boarded a ship and watched whales frolicking.

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Isadora Duncan
Isadora Duncan

For a while, I chose the Isadora Duncan School of Dance rather than rehabilitation–both dance and physical rehabilitation have become an essential part of my doxology.

The brilliant physical therapist Alicia J. Spence at State College's Phoenix Rehab begins; it is time for me to return to her.
The brilliant physical therapist Alicia J. Spence at State College’s Phoenix Rehab begins; it is time for me to return to her.

In the Silicon Valley, I wrote a technical manual for KLA-Tancor on inspecting silicon wafers for defects. Often, I scrubbed down, putting on a white gown and hat; wheeling into the clean room where my readers would be using the documentation.

The recollection of previous cancers

After radiation treatment for cancer, I fathered my two children, published three books, and loved and was loved in return.

The experience of having cancer twice, first at age 28 then at 42—treatment which burned my spine and made me unable to walk certainly slowed me down. It did not stop me. Nor has the experience of having cancer for the third time at age 65 stopped me.

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“The Roman historian Suetonius… tells that Augustus… thought nothing less becoming in a well-trained leader than haste and rashness, and, accordingly, favorite sayings of his were: ‘More haste, less speed’; ‘Better a safe commander than a bold’; and ‘That is done quickly enough which is done well enough.'”

Wikipedia continues, “Gold coins were minted for Augustus which bore the image of a crab and a butterfly, which was considered to be emblematic of the adage. Other pairings used to illustrate the adage include a hare in a snail shell; a chameleon with a fish; a diamond ring entwined with foliage; and, especially, a dolphin entwined around an anchor. Cosimo I de’ Medici, Grand Duke of Tuscany had festina lente as his motto and illustrated it with a tortoise with a sail upon its back.”

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Frequently, I suspect I have not learned from experience.

The same mistakes seem to repeat themselves in predictable order. This is most often the case with loss of energy. So often have I felt my body filled with power and enthusiasm that when the power disappears and getting out of bed becomes a chore, a dark cloud seems to hang over me.

The cloud is not there now.

Recovery from surgery has surprised me by its slow pace.

When I returned from New York in August, the combination of weakness and pain made me grateful to be alone.

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One consequence of my receiving a cancer diagnosis in April of this year is that the telling provoked waves of  affection and attention not merely from those close to home.

A woman whom I had loved intensely in 1972 ( not seen or heard from since) read here on this site an optimistic account of my situation and responded with an e-mail followed by phone calls. We talked about the children we did not have together, the life we did not share, and the strangely odd and encouraging fact that affection untended continues despite the reality that it had its origins so long ago.

Friends appeared with whom I had lost contact for decades. My expectations of how good people could be to me were vastly exceeded by reality. I have emerged from surgery with the feeling of being cherished. Nothing I can say or do can ever repay my gratitude. You know who you are and yet you do not truly appreciate how much you have graced my heart.

Often I feel words used to describe me are wrong, just wrong. I do not think of myself as “brave” or “courageous” or a “fighter.” When I think of myself, which I do often, I try to stop—meditate and in my own fashion pray that the ego will dissolve and I will just continue, pursue the path.

Optional isolation

Late in August, back at my apartment, alone, feeling that strange happiness that comes when intense pain disappears, whoever I am is comfortable to me. By nature I am impatient. By nature, I am persistent. Then, the phrase make haste slowly serves as a comfort. I will do what I need to do when the time comes. I will be grateful for energy and understanding when I cannot do what needs to be done. If the sky falls and I do not have the strength to stop it, the sky falls. Such is life.

Joanna’s wedding

Before I scooted Joanna down the aisle, she drove me to New York for the surgery. My friend  Ben Carlsen drove from State College to New York to bring me back home.
Three months before I scooted Joanna down the aisle, she drove me to New York for the surgery. My friend Ben Carlsen drove from State College to New York to bring me back home.

Going to Joanna’s wedding in October appears now on the second day of December a miraculous event. Weeks before I boarded the plane, I did not believe the energy would return. I persisted. Giving away my elder daughter on a farm in Mebane, North Carolina produced euphoria that brought me through and carried me home on Delta Airlines.

Amelia was my caregiver at  the American Cancer Society's Hope Lodge in NYC where we roomed together before, during, and after my surgery.
Amelia (right) was my caregiver at the American Cancer Society’s Hope Lodge in NYC where we roomed together before, during, and after my surgery.

At the wedding it was a delight seeing Amelia again in North Carolina a seeming aeon away from New York , saying goodbye before she returned to Spain for her third extended trip.

I loved:

  • Watching my sister Sarah Leah Schmerler dance without inhibition after the intensity of being together at the hospital in New York

sarahatwedding

  • Revisiting my 12 year-old only nephew Asher Simonson with his unexpected moments of humor
  • Seeing his father Robert Simonson who had lugged my mobility devices around the Island of Manhattan
  • My son-in-law Jade Phillips and his firefighting colleagues who, when the festivities were over and the bonfire burned out, literally picked up my exhausted body and flung me into the passenger side of a truck

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Then fatigue. Delight in being alone. Concern I would not finish the work I must finish. Optional isolation. Appearing outside my apartment only occasionally. Seeing as few people as possible. Avoiding crowds, large gatherings, and familiar places where I have been surrounded by affection.

Periodically, I receive calls, visits, e-mails and reports of those who ask with affection and concern “Where’s Joel?”

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Life continues.

A dear friend becomes sick. Miles and often even a few blocks I do not have the energy to travel keep me from being where I would otherwise like to be.

I sit in my apartment and wait. A rush of energy and I find myself writing, as I am writing now, without stop, expressing while leaving dishes unwashed, my bed unmade, not yet able to complete rigorous academic writing—not quite able to pull together a large project.

Instead, I follow whim. I have been making You Tube videos—going off to a computer in the patient company of an expert in iMovie editing software, collapsing, returning, making slow steady progress as bills pile up, consistently refusing to think about the money I do not have and the energy I do not have to obtain it.

I have been reading Robert Alter’s The Book of Psalms, his introduction tracing the psalms’ origins back to the Bronze Age over 3,000 years ago, reciting his clear translation, going to the Hebrew, recalling my mother never left the house without a small Hebrew copy of Psalms in her pocketbook, dipping into David Halberstam writing about Elvis Presley, reading a paragraph here and there about architecture, engineering, virtual reality—not doing much for long, but doing and then in fatigue watching by choice vapid Netflix videos for hours.

The last part of cancer therapy

I hope to encourage others like me who are recovering to recognize our temporary limitations and persevere.

Most do not recognize the difficulties involved in recovering from cancer after the disease is gone but the energy has not returned.

[To be inserted here observations about suicide attempts by survivors. This issue I discuss in my book Learning to Live Again, My Triumph over Cancer available on this site http://www.joelsolkoff.com/book-store/books/learning-to-live-again-my-triumph-over-cancer/].

While researching, I came across a footnote in a medical journal article. A young man with the most dangerous stage of Hodgkin’s disease had killed himself after being cured. The autopsy revealed no cancer was present in his body.

Surviving while still recovering can be a hard time unless one is willing to believe in the future. Henry David Thoreau should be an encouragement to those us living in situations such as the one I am now in. Thoreau wrote, “There is one consolation in being sick; and that is the possibility that you may recover to a better state than you were ever in before.”

My life seems to have been lived on the principle that best way to get from here to there is NOT to go in a straight line.

I have been watching You Tubes of Edward R. Murrow, my hero. This one caught my fancy yesterday at 2 in the morning.

This I believe

I believe:

  1. I am alive for a purpose.
  2. The attempt to achieve the purpose, which I choose to call my path in homage to Laozi, serves not only its own end but to unite all that is sacred to me; namely, my children (of course) who are adults and have lives of their own; my sister Sarah and my family, my friends who are family; my love for women (a woman were the right woman in my bed); the need to care for myself, be independent in body and mind, be a good citizen who embraces not only my country but my mother Earth, and the need to be the human being I strive to be who believes in the spirit that gives us life.
Clearly a fictitious image of Laozi. No one knows what he looked like. The story is Laozi appeared at a border crossing. The guard asked him to write a book of wisdom. Laozi wrote The Way, gave it to the guard who allowed him to cross. Laozi disappeared. This story and The Way are the only evidence of his existence.
Clearly a fictitious image of Laozi. No one knows what he looked like. The story is Laozi appeared at a border crossing. The guard asked him to write a book of wisdom. Laozi wrote The Way (The Path), gave it to the guard who allowed him to cross. Laozi disappeared. This story and The Way are the only evidence of his existence.

3. My chosen path is to help the elderly and disabled achieve their potential.

4. Along that path is the virtue of technology which makes it possible for me to go seamlessly from my bed to my kitchen out the door and into the world on scooters like the kind that my dear friend Al Thieme of Amigo Mobility invented which he refers to as Power Operated Vehicle scooters or POV scooters to distinguish them from toys. The technology mobility path includes power chairs and equipment being developed at an astonishingly rapid pace. The consequence of this technology is I do not think of myself as one whose disability prevents me from living life to the full. For individuals with hearing and visual disabilities technology has developed to the point where, for example, an individual blind from birth can drive an automobile specially equipped with laser scanning of the road;  the automobile provides the driver computer-voice simulated operated instructions.

Thank you Wired Magazine: http://www.wired.com/autopia/2009/07/blind-driver-challenge/
Thank you Wired Magazine

Totally blind drivers have passed tests on intentionally difficult driving courses. I believe in my lifetime the Commonwealth of Pennsylvania will issue drivers licenses to individuals who are totally blind but who have proven their ability to drive sophisticated vehicles such as the ones already produced by the Virginia Tech’s Robotics and Mechanisms Laboratory.

Amigo manufactures this narrow travel scooter shown here in a tight space in a tiny motel room as I traveled nearly 1,000 miles to my daughter Amelia's college graduation.
Amigo Mobility manufactures this narrow travel scooter shown here in a tight space in a tiny motel room as I traveled nearly 1,000 miles to my daughter Amelia’s college graduation.

5. My path is focused on what the architectural, engineering, and construction community refer to as the built environment. See, for example, my biographical information and published work for e-architect: http://www.e-architect.co.uk/editors/joel-solkoff

6. To rebuild the environment, the promise of virtual reality is real. Virtual reality is a promise my 30 year-old mentor Sonali Kumar introduced to me as I worked with her as a research assistant at Penn State’s Architectural Engineering Department to complete her doctoral dissertation entitled: Experience-based design review of healthcare facilities using interactive virtual prototypes. 

VirtualRollinshower

Sonali apologized when she used me as the model for this avatar. “I am sorry I put so much gray in your hair. You do have a lot of gray in your hair.”

Fashion aside, one of my contributions to Sonali’s animated three-dimensional model of an independent-living-aging-in-place home was the suggestion she replace the original bathtub with a roll in shower. As a paraplegic for whom being clean is vital, I have all too often been trapped in a bathtub–on one occasion it took me 45 minutes to figure out how to get out of the tub finally using my arms to push me out, pulling my legs after me as I landed onto a dirty bathroom floor.

7. Experienced-based design is essential. Experienced-based design is one of a number of academic terms meaning the best way to design an environment is to ask the person who will use it. The example that comes most readily to mind is an article I read about a new hospital in the Philadelphia area. The article complemented the hospital administration for asking patients at the previous facility what changes they would suggest making to the design of the new building to make the hospital more patient-friendly. The patients suggested making it easier to get from bed to bathroom by making the bathroom closer to the bed. The article praised the administration for the reduction in falls as a consequence. [I know. My instant reaction to that was Daaaaaaaaaaaahh.] Asking does matter. Ask experts like me, for example, or my neighbors at Addison Court (an independent living apartment building for the elderly and disabled) whom I arranged to view Sonali’s model wearing 3-D glasses at Dr. John Messner’s Immersive Construction Lab for Construction industry. The consequence is we have the experience to instruct the design of the environment around us so that it is more efficient. The result is not merely an exercise in odd-sounding academic words such as case studies, scenarios, and activities of daily living (ADL); it is also a good idea.

SloanBath

8. Self reliance should be encouraged. Shown here

[Note: Think of I believe in points 8, 9, and beyond as Coming Attractions.]

9. Knowing when to ask for help.

Color coded socks at Mount Nittany Medical Center, State College, PA. These socks indicate patient is at risk of falling.
Color coded socks at Mount Nittany Medical Center, State College, PA. These socks indicate patient is at risk of falling.

To be continued.

Meanwhile, here is Edward R. Murrow  interviewing then former President of the United States Harry S Truman on what Truman believes. http://thisibelieve.org/essay/17058/

President Truman is followed by a bad video of an Alan Jackson song. I like the theme. I like the song.

–Joel Solkoff

Copyright 2013 by Joel Solkoff. All rights reserved.

 

Getting to my kidney operation on August 8th—Part 1

Getting out of bed (and eventually into an automobile)

To travel the 257 miles from State College, PA to Memorial Sloan Kettering Cancer Center (known to New Yorkers as Memorial) less than two blocks from the East River in New York City, I have to get out of bed.

What follows is a photographic recreation of my getting out of bed on June first, for my most recent expedition to Memorial where I went for tests and more tests and the surprising news that Dr. Paul Russo had decided an operation would be a good idea.

The decision was a surprise because it was in effect a reversal of his position in April. The reversal can be explained, I suppose, because in June Dr. Russo had the opportunity to review extremely detailed sonic imaging of my kidney and heart:

  • The kidneys to see whether he could remove the tumor and save two-thirds of the kidney and not incidentally remove the threat that I will die of kidney cancer
  • The heart to determine whether I would survive the operation and recover
  • Keep in mind: Cure the cancer; kill the patient is not a good idea

Here I am in bed.

Photograph by Benjamin Carlson
Photograph by Benjamin Carlsen

Because I am a paraplegic, getting out of bed requires some effort. Paraplegic, the dictionary explains, is an individual who has “paralysis of the lower half of the body with involvement of both legs.”

I cannot stand without holding on to something. That does not mean I cannot dance, if I am careful and have a partner who understands, I CAN dance.

I cannot walk, but there are a wide variety of devices that can help me get from here to there.

Plus, my feet work well enough that I can drive a car.

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To get out of bed, I need to transfer to a mobility device.

The following photograph shows me transferring from the bed to a scooter. First invented in 1968 by my friend Al Thieme, CEO of Amigo Mobility, the device is formally called a Power Operated Vehicle (POV) scooter.

Photograph by Benjamin Carlsen

 

Photograph by Benjamin Carlsen

In the following photograph, the transfer is complete and I am now ready to:

  • drive to the bathroom
  • the kitchen to make breakfast
  • to various parts of my apartment to get dressed and pack for the trip to New York

It is essential to keep the battery charger in mind at all times and to make sure it is positioned in the right place. Before going to sleep, have a plugged in battery charger with a fan inside sitting on the bed table preparing for the period after sleep. Hearing the hum of the fan reassures that the charger plugged in next to my bed will provide me in the morning 25 miles worth of power–25 miles (to repeat) for one full charge.

Photograph by Benjamin Carlsen
Photograph by Benjamin Carlsen

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Finally, after considerable effort and stops for this and that (including, of course, getting lost), here is a photograph I took of myself driving a mini-van through the streets of New York City in June—the scooter having been taken apart and put in the rear. As one born and college educated in New York, I like the thrill of driving in insane cross-town traffic where there are no rules of the road except aggression. This is what it is like to be en route to appointments to test my kidney and heart and to learn of the operation I had not anticipated.

Joel Solkof was at a complete stop in the MIDDLE of a crosswalk (where sang froid pedestrians pushing baby strollers had to climb over cars) when he took this photograph.
Joel Solkof was at a complete stop in the MIDDLE of a crosswalk (where sang froid pedestrians pushing baby strollers had to climb over cars) when he took this photograph.

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Today is Monday, July 8th. I am in State College planning the logistics of getting to New York for the operation in August at a hospital in New York City where the word MEMORIAL is chiseled ghoulishly in large stone letters above the entrance.

Now I am planning and planning– wondering which of my disability devices to take with me. I am planning on how to position my mobility devices in New York so they are there when I need them:

  • before the surgeon cuts
  • in the hospital immediately after the operation
  • wherever I will be staying in New York for the two-week recovery period

–Joel Solkoff

Fashion note: The beautiful 100% cotton yellow pajamas I am wearing in bed are part of a generous sartorial gift from the family of the late David Forer, a man of impeccable taste.

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Copyright © 2013 by Joel Solkoff. All rights reserved.

This posting is a portion of the fifth part of the ongoing story of my third cancer–kidney cancer, a story that follows this expanding outline:

1. http://www.joelsolkoff.com/who-i-used-to-be/

2. http://www.joelsolkoff.com/my-personal-experience-with-cancer-cancer-iii-ii-i/

3. http://www.joelsolkoff.com/my-fear-of-the-future/

4. http://www.joelsolkoff.com/my-man-mozart/

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Disability Cancer Surgery Donation

In 30 days (the actual date is Thursday, August 8th), I am scheduled for major surgery at Memorial Sloan Kettering Cancer Center (MSKCC). The surgery will be performed by an expert in the field of kidney surgery which my physician here in State College (250 miles from New York City) advises me cannot be reliably perfumed in the greater region where I live. My State College urologist referred me to Sloan Kettering in New York where Dr. Paul Russo will perform the surgery. The surgery, if successful. and it is highly likely to be, will remove the large tumor that surrounds my right kidney. The surgery will also remove one-third of my right kidney–in effect saving the kidney. Since imaging indicates the cancer has not spread, the operation is likely to eliminate the threat of my dying of kidney disease. Period. That is a big load off my mind. I hope you are able to donate money to help defray the travel expenses to surgery and during the two-week estimated recovery period.and of course the journey back home. My estimate is that $3,000 would be amount required and when I achieve that amount I will tell you and take down the donation button. Begging for money is difficult enough. Begging for money after I have raised the requested amount is tasteless.

My personal experience with cancer—Cancer III, II, I

New York, New York, Saturday, April 13, 2013: My third cancer is new. It did not present itself as a suspicious sign the way the lump (tumor) did under my right arm leading to a diagnosis of Hodgkin’s disease followed by major surgery and two rounds of radiation treatment when I was 28 years old. I am now 65.

My first cancer

The radiation did not prevent me from fathering a daughter Joanna (who graduates from nursing school next month and marries in October).

My second cancer

Then, 13 years later, an unpleasant surprise. A lump (tumor) appeared in my groin. My orthodox Jewish oncologist said, “It is a sheylah [a Talmudic term meaning a question which does not have an answer] whether this is a new case of Hodgkin’s disease or the return of the old one.”

Out of hubris, I had published an article in The New York Times under the title Learning to Live Again boasting of my cure, a boast to be repeated on ABC’s Good Morning America after an impressive limousine ride to the studio followed by a book with the same title (available on this site http://www.joelsolkoff.com/book-store/books/learning-to-live-again-my-triumph-over-cancer/) with the subtitle, My Triumph Over Cancer.

Now, with the arrival of my third cancer, Joanna expresses a familiar refrain over the phone from North Carolina, “Everyone knows nothing can kill you, Dad.” Then, she says, “Learning to live again and again and again.”

Amelia (whom I fathered after my cancer at age 42), who is teaching English in rural Spain, continues the theme calling on Skype (revealing her hair is growing long): “And again and again.”

As directed, finding an expert on Cancer III

So, here I am in New York City, a week and a day after I was diagnosed with renal cancer. My urologist had opened her laptop with the CAT-scan showing a very large tumor surrounding my right kidney.

The vividness of the image is startling—large tumor, large large tumor.

Will it kill me?

Can I avoid death?

The answer appears with an insistence:

I am told that I must find a surgeon better than any surgeon in town [i.e. State College]—the kind of skilled surgeon available at Pittsburgh or Philadelphia, only Pennsylvania has a limited number of surgeons of that caliber and finding one able to operate in April is unlikely.

I must go out of state—have an operation in 30 days or else the cancer from the large tumor wilI spread and kill me.

Run don’t walk to the best surgeon who can operate.

That’s the advice I follow.

Diagnosis on Friday at 4 pm.

I am on the phone on Monday to Memorial Sloan Kettering Cancer Center.

Yesterday (yesterday) I consulted at my urologist’s suggestion (yesterday) with Paul Russo a surgeon specializing in kidneys and cancer at Memorial Sloan Kettering Cancer Center (MSKCC). As he puts it, “I am a kidney surgeon warlord.”

A digression on traveling to NY by bus

It is worth pointing out—before getting to what the Kidney Warlord said—that getting from State College, PA to New York City is not easy for me. I cannot walk. The cumulative radiation from Cancers I and II burned a hole in my spine making me a paraplegic.

I can stand but I have to hold onto something. I get around on a scooter—a power operated vehicle (POV) scooter invented by Al Thieme (CEO of Amigo Mobility) to help his wife who had multiple sclerosis.

The scooter I used for the trip is a lightweight travel scooter which means that it folds apart easily, has remarkable power—climbing easily Manhattan’s hills and steep (sometimes very steep with deep cracks in the payment) curb cuts– is relatively light weight and is narrow (the place at which I slept last night had narrow hallways).

My friend PH came by my State College apartment shortly before 9 AM Thursday to take me to the bus. Megabus runs a double-decker (reminiscent of the buses I used to ride as a child down Fifth Avenue).  One problem with being disabled and riding Megabus is that to secure officially sanctioned accommodations one has to call the special disability number which in my experience takes as long as an hour for a simple bus ride plus the information does not reach the bus driver and on and on.

This time I decided to follow the rules that if I am willing to store my wheelchair (or other vehicle) in the luggage compartment of the bus, then I do not have to call the Disability Office.

I brief PH on what to tell the driver (who fortunately does not freak out as others have done). He removes the lift from the closet next to the bathroom, hooks it on the bus floor (so it does not slip when a scooter or wheelchair goes up or down).

I drive up the lift, move from scooter to chair, and PH, who knows how to take the scooter apart does so after leaving me on the bus chair and going down the lift to the luggage area. PH explains how Frank will have to put the scooter together when we arrive in New York.

This detail should make it clear (repetition is bad writing but good pedagogy) that traveling is not easy for me. The desire to save my life (as I saw it) overcame obstacles including the reality that I could not walk to the bus’ bathroom and had to tax my bladder to the limit. Enough said.

Background on Kidney Warlord consultation

So, there we are at Memorial Sloan Kettering Cancer Center (MSKCC) having arrived through a cold rain early for a 10 AM appointment. Since its founding in 1884 as a New York hospital devoted to treating cancer patients, MSKCC has established itself as a world-famous research and treatment center benefiting from the funding cycle created by President Richard Nixon and Congress. Nixon (of whom I cannot resist making disparaging remarks)–in what the White House press office described as “a Christmas gift to the nation”– began the War on Cancer by signing the National Cancer Act in December of 1971.  [Expect a return to this subject.]

I keep mentioning Sloan Kettering (as if it were a mantra) because it is regarded as one of the most distinguished cancer centers in the world (which also means it has its critics [and I have the opportunity to repeat myself again]). The surgeon I was scheduled to see is a hot-shot by any standards and (sadly) I have experience with cancer hot shots (remind me to tell you about the time…).

Paul Russo is on the staff of Cornell’s College of Medicine as well as Sloan Kettering and is widely published—see PubMed [an online index of biomedical articles maintained by the U.S. National Library of Medicine and the National Institutes of Health] for a full listing of his journal articles. One article is entitled, “The Role of Surgery in the Management of Early-Stage Renal Cancer.”

The first sentence reads: “There were an estimated 58,240 new cases and 13,040 deaths from kidney cancer in the United States in 2010.”

Here is how Dr. Russo describes his work: “I am a urologic oncological surgeon known for my academic work in kidney tumor surgery. My expertise includes partial nephrectomy, removing only the tumor using small ‘miniflank’ incisions while preserving maximal kidney function, and cytoreductive radical nephrectomy for patients with advanced kidney cancers. I also lead a kidney tumor surgical research team at Memorial Sloan-Kettering that has created nomograms predicting survival and renal functional outcomes.”

If you want to see a YouTube on cancer surgery for kidneys, go to Dr. Russo’s link: http://www.mskcc.org/cancer-care/doctor/paul-russo

The Consultation

Dr. Russo’s office suggested that I invite someone to the appointment which is an excellent idea because there were moments when I did not really hear what the doctor said. My friend Kathy graciously agreed to attend and Dr. Russo spent a surprising amount of time talking to her, which made sense because I was annoyed by how the appointment began.

“Are you irritated at me?” he eventually asked. “Yes,” I answered.

This is what I want: I want you to operate on me immediately, confirm that losing a kidney does not matter, that recovery from the operation (as I have been led to believe) is minor, and a swift operation will cure me of renal cancer by eliminating the tumor before the cancer has a chance to spread.

Dr. Russo said that I may not be suitable candidate for surgery—especially since the surgery he would perform is MAJOR surgery. I may not be suitable because I had a heart attack and have a pacemaker and am a diabetic.

Dr. Russo said that there is increased evidence that individuals such as myself who have multiple health problems do not follow the preconceived view that one kidney is enough. Losing a kidney might cause me significant problems.

Dr. Russo said that he orders his patients to walk a mile on the first day of surgery and two miles on the second. Since I am a paraplegic, I cannot walk at all. Not being able to walk could lead to significant complications.

Dr. Russo said that there is no rush. The tumor surrounding my right kidney is very large and could have been growing for 20 years. It is a good sign that the tumor was found by chance rather than as a consequence of symptoms. Perhaps, the tumor will continue to grow slowly and without causing cancerous damage. The thing to do is proceed slowly, and cautiously.

On Monday morning [remember, today is Saturday], Dr. Russo scheduled me for cardiac tests. In a month I return to New York to see him.

My reaction

I have been staring off in the distance looking at nothing thinking no thoughts. This was true a week ago when I was diagnosed with renal cancer and urged to rush to cut it out and it is true today after being told to proceed slowly and perhaps not have the operation at all.

The advice to rush and cut out the cancer immediately was comforting in its way. Once again I would be doing something to save my life. Doing something is better, in my book, than doing nothing—than waiting and seeing.

As it turns out, I believe Dr. Russo. He has performed more kidney operations than are performed by most countries. He is rewarded by the hospital when he performs an operation—discouraging operations is not good for business or reputation (at least, in the conventional sense).

Dr. Russo has convinced me to rewrite my figurative book and acknowledge that doing nothing may be better than doing something. As I type this, I have difficulty believing what I am writing in large part because I really do not see myself as a 65 year-old man with health problems. I see myself on many days as 16 and on most good days as capable of doing anything. Anything.

I am not 28 anymore as when I was treated for Cancer I. The decisions I make for the future ought to be made carefully because a well-lived life (the kind of life I want to live) causes joy and adds to the productivity of the gross domestic product. [This ongoing story will continue.]

–30–

Copyright © 2013 by Joel Solkoff. All rights reserved.

This posting is the second part of the ongoing story of my third cancer–kidney cancer, a story that follows this expanding outline:

1. http://www.joelsolkoff.com/who-i-used-to-be/

2. http://www.joelsolkoff.com/my-personal-experience-with-cancer-cancer-iii-ii-i/  [You are here.]

3. http://www.joelsolkoff.com/my-fear-of-the-future/

4. http://www.joelsolkoff.com/my-man-mozart/

 

Celebration of the Use of Virtual Reality to Improve Housing for the Elderly and Disabled

University Park, PA.  On Tuesday, May 3, 2011 at 10a.m. Penn State’s Department of Architectural Engineering and its Smart Spaces Center for Adaptive Aging in Community celebrated progress made in a coordinated effort to reduce the cost of housing for Pennsylvania’s elderly and disabled residents today and in the future.

The celebration took place at the virtual reality Immersive Construction (ICon) Laboratory. The celebration:

  1. Demonstrated the use of full-scale 3-D virtual models on large display screens for evaluating cost-effective designs to allow for aging in place. The animated model, based on the Blueroof  Technologies housing initiative in McKeesport, PA, is the work of graduate student Sonali Kumar. The virtual reality approach allows for an avatar to enter the wheel-chair accessible cottage and evaluate tasks such as making coffee in a kitchen to appropriately design for residents who desire housing where they can grow old without having to move to a costly institution.
  2. Allowed participants to meet the leaders of Blueroof Technologies in McKeesport, PA using a live video connection.  Blueroof is using prefabricated housing with embedded sensors for improving user interaction with their residence.  The environment can inform a resident when to take medication, monitor for falls (then, call 911 if the resident slips in the shower and does not get up), and provide televised links to medical facilities reducing routine medical care cost.
  3. Show the work of the Computer Integrated Construction Research Program, directed by John Messner, associate professor of architectural engineering,  focusing on the application of advanced computer modeling to improve the design, construction, and operation processes for buildings.
  4. Present the work of architectural engineering students  trained in using 3-D experienced-based design.  Virtual modeling is rapidly becoming an important tool for the construction industry, providing the ability to make changes in health care and other facilities before construction actually takes place.
  5. Provide an opportunity for residents of Addison Court, a State College independent living facility for elderly and disabled individuals, to see what the future will bring and serve as critics who can use their life experiences to aid in the design process.
  6. Highlight the work of  Penn State’s Smart Spaces Center, directed by Richard Behr, who leads an interdisciplinary effort to address the needs of the rapidly increasing number of baby boomer Americans who wish to age successfully in their own homes.
  7. Recognize contributions made by the Raymond A. Bowers Program for Excellence in Design and Construction of the Built Environment, the Smart Spaces Center, the Partnership for Achieving Construction Excellence, and other private and public organizations working with Penn State to improve life for Pennsylvania’s elderly and disabled.
  8. Using a scooter from Amigo Mobility, Blueroof will begin to experiment on how to help residents with mobility disabilities make better use of the technology around them. The Amigo scooter will have an iPad 2 and other remote devices so residents can turn the lights on and off and perform other functions without leaving the chair.
After Florida, Pennsylvania has the highest per capita of elderly of any state in the union. Not all news about health care costs is bad news. Come learn about some of the good news.
Computer Integrated Construction Research Program:
Immersive Construction Lab (ICon Lab):
Smart Spaces Center:
Immersive Construction Lab
306 Engineering Unit C
University Park, PA 16802

Virtual reality cuts costs and increases satisfaction

Put on your 3-D glasses
The following appeared in HME News, the publication for the home medical industry, on July 26, 2011. This year and last, I asked the residents of Addison Court, the low-income apartment for disabled and elderly in State College where I live, to attend a demonstration at the Immersive Construction Lab, described here. One of the participants was Lilian Hutchison, who celebrated her 87th birthday in January. No one can say for sure whether Lilian would have fallen several times in her apartment if this kind of technology were in place. However, the hope is that the future will be kinder to those of us who can benefit from design which residents are able to modify in advance. 

The projectors behind the three, 8-foot screens show a virtual reality world that can improve the environment where home medical equipment HME is used. Professor John I. Messner’s Immersive Construction (ICon) Laboratory at Penn States Architectural Engineering Department is a dark, windowless room where the healthcare facilities being viewed seem so real there is a special world for it: immersion.

When Kaiser-Permanente began constructing a medical building in downtown Washington, D.C., pharmacists traveled 140 miles to State College to see how their workplace would appear. Among their suggestions: a partition so when two patients are served simultaneously, their privacy is insured.

There is substantial growth in constructing healthcare facilities from hospitals to housing for the elderly. Previously, a model of how a building would look required physical materials like wood and nails. By comparison, virtual reality offers interactive models early in the design process. The resulting efficiency and cost savings (making changes to a building before it is built) are creating a boom in the use of virtual reality in the architectural, engineering and construction (AEC) industry. Expectations exceed the ability of the AEC industry to have virtual reality applications ready as quickly as desired.

 

Gala with residents of Addison Court at the Immersive Construction Lab


Sonali Kumar, a graduate research assistant at Penn State, is developing a 3-D model for an independent living facility for elderly and disabled individuals based on the concept of experience-based design. Experience-based design often refers to a body of academic literature, primarily health-care related. Designers are urged to consider the perspective of the individuals who build, maintain, work and reside in the facility, including patients and residents. A common example is the decision of a Philadelphia hospital to build its bathrooms closer to patients beds.

My perspective on Sonali’s effort comes from my status as a disabled resident of a primarily elderly independent living facility. For example, I look at an early version of Sonali’s model showing a bathtub in the bathroom and say, No. There should be a roll-in shower here. I show an early prototype to Travis Barr, co-owner of T & B Medical here in State College. While fixing my scooter, Travis says, “There should not be cabinet doors in the kitchen. Doors are a nuisance for people with disabilities.”

Sonali’s model is based on a Blue Roof Technologies cottage in McKeesport, Pa. Pennsylvania has a larger number of elderly people in its population than any other state except Florida. The need for elderly housing is acute. In McKeesport, where the factory for steel pipes closed down leaving a near-ghost town and an elderly population of more than 20%, Robert Walters, a retired Penn State professor, created Blueroof. The cottages are constructed of pre-fabricated housing and have special sensors inserted in the walls to remind residents when to take their medicine (the walls talk) and to call 911 if a resident falls and does not get up in a timely fashion.

Sonali’s model of a Blue Roof cottage makes use of interaction, the most significant new development in virtual reality. Look at the screen shot Sonali took of the power chair inside the kitchen of her model cottage. For those readers who have not spent their productive hours playing video games, an avatar is a virtual reality representation of an actor functioning in a 3-D environment. The avatar in the Sonali’s kitchen is a power chair. The power chair makes coffee and toast, opening the refrigerator door to get eggs and milk, and scrambles eggs on a stove the avatar has just turned on. Interactivity is key to understanding how practical people in the construction industry have come to use 3-D technology for practical purposes.

Interactivity is arrived at slowly as Sonali experiments with a wide range of software. I suggested that Sonali replace the 3-D power chair with a scooter. In my experience, a scooter is more mobile and less likely to damage walls and take bathroom doors off their hinges. I ask a manufacturer to provide a 3-D scooter file, but for reasons I cannot explain (because I do not understand), the file does not yet open. Sonali explains, “We are in the process of integrating the computer model obtained from Amigo Mobility.” Keep your 3-D glasses on and await future developments.

Joel Solkoff writes about disability issues from a customer perspective. He is an adjunct research assistant at the Department of Architectural Engineering at The Pennsylvania State University.