Surprised to be Standing: A Spiritual Journey
by
Steven E. Brown, Ph.D.
A Healing Light Publication
“This is a compelling and thought provoking memoir. Steven Brown takes his reader on an intimate journey of discovery and re-discovery."
Patricia Wood author of "Lottery"
“Steve’s life is a love story through which every reader can make meaning and follow this itinerary to healing, human relationships, and the contemplative life.”
Elizabeth DePoy, Ph.D. and Stephen Gilson, Ph.D., University of Maine
“Dr. Brown proves to us that he has both incredible inner strength and remarkable perseverance to overcome just about anything. Thank you for reminding us that through our own perseverance, we too can make a difference in our lives and others.”
Cynthia J. Frank, Person with Gaucher disease, Director of Development for the National Gaucher Foundation
“This book is a prime example of the rewards one can ripen by following through with a commitment to participate in his own healing no matter what it might take.”
Herwig Schoen, Founder of Reconnective Therapy
Surprised to be Standing: A Spiritual Journey
Steven E. Brown
Copyright 2011 by Steven E. Brown. All rights reserved under International and Pan-American Copyright Conventions and all others now in existence or created in the future. Printed in the United States of America. No part of this book may be used or reproduced in any manner whatsoever without written permission except in the case of brief quotations in articles and reviews.
Published by Healing Light, Honolulu, HI:
Library of Congress Control Number: 2011900964
Brown, Steven E.
Surprised to be standing: A spiritual journey/ by Steven E. Brown
Smashwords Edition
Also available in print editions
Smashwords Edition, License Notes
This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy.
Thank you for respecting the hard work of this author.
This book is dedicated to all who serve as mentors,
guides, and role models, old and young,
visible and invisible;
to generations in my own life-past, present, and future;
and to spiritual journeys.
Acknowledgements:
Part I: Pain
Chapter 1: “A Walking Miracle”
Chapter 2: Mystery Limp
Chapter 3: Alone
Chapter 4: Diary
Chapter 5: Caves, Tear Gas, and Revolution
Chapter 6: Sun, Love, and Pain
Chapter 7: Genes and James
Chapter 8: Overnight Radical
Chapter 9: Fitting In and Laying Down
Chapter 10: Walking Out, Sitting Down, and Moving On
Chapter 11: Disability Culture and Pain, Plain
Part II: Healing
Chapter 12: Travels, Rocks, and Bones
Chapter 13: Time to Heal
Chapter 14: Miracles
Chapter 15: Re-connecting
Chapter 16: Anger
Chapter 17: Walking
Chapter 18: Transformations
Part III: Liberation
Chapter 19: Forgetting the What, Remembering the Who
Chapter 20: Practical Applications
Acknowledgements
While writing is often a solitary task, moving words from the mind to the world is not. Many individuals shared a part in the evolution of this book from manuscript to publication. I am grateful to each one, sometimes more than I can possibly put into words, but words I can share.
Without my parents and their support, nothing I have written about in these pages would have happened and I am happy both my Mom and Dad lived long enough to see the changes described herein. I don’t always paint my family in the best light--like any family we have differences, personality clashes, and distinct ways of viewing the world. But my family is a fundamentally supportive one, always willing to lend a hand, offer a kind word, and be present when it counts. These traits may not always come across in the tales told in this book, but I will be forever grateful for each member of my family.
My wife, Lillian Gonzales Brown, is my staunchest supporter and advocate. She listened to every word of at least one version of the manuscript and made critically important comments, as did the following readers, who commented on various stages of the work: Nancy Aleck, Charmaine Crockett, Elizabeth DePoy, Cyndi Frank, Stephen Gilson, Aimée Gramblin, Alice Griffin, Helen Kutz, Mark Medoff, Sharie Phillips-Swatek, Herwig Schoen, Kerstin Schoen, and Patricia Wood.
A special thank you to instructors Anne D. LeClaire, Dan Millman, and my fellow students in two Hawai‘i Writer’s Retreats. Together the first few pages of this book have been massaged many times. More importantly, the Retreats led to supportive, critical, and empathetic friendships and colleagues. Most importantly, being around others who wondered what I wrote about, rather than what I did, refreshed and re-energized me. Thanks to Dan for subtitle suggestions. I finally found one I liked! Thanks to Anne for her always gracious support.
My daughter, Aimée Gramblin, a fellow writer, has been incredibly patient and supportive of her Dad’s penchant to write about his perspectives and feelings about her over the years and I’m grateful she continues to be willing to be portrayed in print.
I first met the exuberant novelist Patricia Wood as a student. We have both delighted in our changing roles, as we’ve become friends and mutual mentors. Pat has been a delight in sharing her own stories of writing and publishing.
Herwig Schoen has been a friend, mentor, and healer in my life since the day we met. Meeting him literally changed my life for the better as described within these pages. Without our friendship this particular book would never have been written--because my story would be a different one.
In the course of writing autobiographical memories, it is sometimes painfully obvious whose viewpoint is being shared--mine, naturally. I am especially grateful to everyone who supports my autobiographical writing habit with love and to everyone else who puts up with it.
I have done my best to ensure these memories are both as accurate and as true to my own feelings as possible. But mistakes are likely to have been made and I accept full responsibility for any errors. In some cases, names have been changed if permission has not been requested or granted to use someone’s true identity.
Finally, this is my story. My hope is it will resonate with others, but I make no claim anyone else would share the same experiences I did—it remains, after all, my story.
Note: Reconnective Therapy (RCT) is not a medical treatment and is not intended to replace appropriate medical practice. For more information on RCT, see: http://www.reconnectivetherapy.com
Photo credits: Cover photo of Steven E. Brown and back cover photo by Trip Rems, http://www.auroragalleries.com
AUCD, 2008, by Robert C. Johnson.
All other photographs, photographer unknown.
Part I: Pain
Every time I manage to stand,
I am extremely grateful,
especially since it hurts as much
to be sitting as it does to stand.
December 19, 1968
Chapter 1: “A Walking Miracle”
"Character cannot be developed in ease and quiet.
Only through experience of trial and suffering can
the soul be strengthened, vision cleared, ambition
inspired, and success achieved."
Helen Keller
I wanted to scream. Soft, whimpering sounds of pain didn’t satisfy. I needed to howl, cry, screech. I lay awake in the middle of the night in my brother’s bedroom, the one with the shared bathroom. He slept in my remodeled basement room in Portage, Michigan, a semi-rural township next to the small southwestern city of Kalamazoo. My parents and sister occupied the two other bedrooms on this level of the house. I used my brother’s bed when sick because I couldn’t climb the basement steps. I couldn’t do much of anything.
I wanted to scream. No other outlets for my frustration existed. The pain consumed me, permeating every aspect of my being, drawing each second into hours. Nights dragged on into eternity. When the neighborhood quieted, all the lights turned off, I heard only crickets and other nocturnal nature sounds. I lay wide awake, immersed in my hurting body. I tried to read but put the book down. Screaming softly when I wanted to shout to the night skies as loudly as possible demanding why me, why do I suffer?
In my early teens, in the mid-1960s, resenting my body, my pain, my disease, my life, I cursed God. I couldn’t understand why I’d been saddled with my burden, most visible in many episodes of excruciating immobility.
Once, as a senior in high school, in the midst of what’s now known as “bone crises,” but which we then called “attacks,” persistent, agonizing, excruciating joint pain—cause unknown—I counted the minutes to move. The effort, the determination, the perseverance to go from laying to sitting to standing to moving. This activity, so simple most people complete it in seconds, lasted more than thirty minutes. Years later I described it poetically:
I lie. I decide to get up. To go to the bathroom. To go to bed. To get something to eat. To see another room. To do something. I decide to get up.
Not I get up. This is conscious, deliberate. It will happen no other way.
I decide to get up.
I move. I scream. I hurt. Maybe I won’t get up.
I decide to get up.
I move.
I scream. I hurt. I will get up. I will get up.
I move.
My body begins to move with me. All of it. Except the knee.
Slowly, deliberately, painstakingly, I lift my knee.
I drag it to a sitting position.
I exhale.
I rest.
I sweat.
I’m exhausted.
I hurt.
I curse.
I breathe.
I decide to stand.
I move. I scream. I hurt. Maybe I won’t stand.
I decide to stand.
I move.
I scream. I hurt. I will stand. I will stand.
I move.
My body begins to move with me. All of it. Except the knee.
Slowly, deliberately, tenderly, I lift my knee.
I drag it to a standing position.
I exhale.
I rest.
I sweat.
I’m exhausted.
I hurt.
Curse.
Breathe.
Decide to move.
I move. I scream. I hurt. Maybe I won’t move.
I decide to move.
I move.
I scream. I hurt. I will move. I will move.
I move.
My body begins to move with me. All of it. Except the knee.
Slowly, deliberately, tenderly, consciously, painstakingly, I lift my knee. I drag it alongside me as I move.
I exhale.
I rest.
I sweat.
Exhausted, I arrive.
Hurting.
Cursing.
Breathing.
I await the next time I need to move.
I can wait for a long time, I think.
But, of course, I cannot.
When I wrote this poem, in my early forties, I could only imagine the rest of my life immersed in pain and immobility. Ten years later my life had changed. A frightening medical test in my late forties compelled me to choose between ongoing pain and desperation or healing and liberation. After a fifty-year struggle, I am “a walking miracle.”
"The physical examination disclosed a
well developed, well nourished alert
and cooperative boy in no distress."
S. B. Hayles [M.D.], Mayo Clinic, October 1, 1957
Imagine a five year-old boy playing on an autumn evening in 1957, on the freshly paved streets of a newly constructed neighborhood. My sixth birthday approaches in late October. I’m one of the youngest kids in my first grade class. It’s time to return home for the evening and I’m limping, but I don’t know why.
I don’t remember this limp. Fragments of recollection survive: my Mom telling me I complained my right leg hurt; a memory of my Dad standing in front of our hall closet, probably getting out or putting away a jacket, not knowing what else to do; or my parents seeing their eldest son, who loved running around outside, limping. Doctors in Kalamazoo couldn’t diagnose the cause of the limp. My parents finally chose to take me to the Mayo Clinic in Rochester, Minnesota, where my Dad’s parents, who lived in Kalamazoo, traveled for treatment of their own medical ailments.
Weeks shy of my sixth birthday I climbed steep airplane steps for the first time, squealing with delight to board with my Mom and grandmother, anticipating adventure. Mom dealt with the two of us and the onset of her third pregnancy. My father stayed home with Marty, born two and a half years after me, and whom I generally considered my bratty younger brother. I hoped, maybe more desperately than my parents, for a sister.
Tidbits from my time in the Clinic remain. A sprawling building with brown walls and light floors. Symbols that, I believe, guided us to our destination. Beyond the shadows of the walls, little memory lingers—but scars remain. Lines, a quarter-inch wide, dissect my outer thighs. My right leg bears the longer mark, eight inches down, but the biopsy of my left leg revealed my fate: Gaucher’s (pronounced Go-shays) Disease.
In 1882, Philippe Gaucher, a French medical student, identified this recessive, genetic disorder. Gaucher Disease, known in the 1950s, when I was diagnosed, as Gaucher’s Disease (GD), is a recessive, genetic disorder, originally believed to be most common among individuals, like me, with an Ashkenazic (usually Eastern European) Jewish familial history, but now identified in numerous ethnic groups.
GD is metabolic in origin, resulting in lowered production of an enzyme called glucocerebrosidase intended to discharge a fatty substance, or lipid, called glucocerebroside. GD blocks the elimination of glucocerebroside so it remains in the body, sometimes wreaking havoc, as detailed in following chapters.
Three general types of GD have been recognized. I was born with Type 1, commonly referred to as the adult type, meaning we are anticipated to have an average lifespan, unlike those with Types 2 and 3, who still die at an early age, during infancy or adolescence.
Type 1 GD can lead to a build-up of glucocerebroside in bones and in organs, such as the spleen and liver. These accumulations are generically labeled Gaucher cells.
Where the GD cells concentrate they tend to cause sometimes significant problems because of interference with typical production of, for example, platelets or bone regeneration. In some cases, as with me, GD symptoms can be extremely painful, leading to broken bones and the secondary condition of arthritis or excruciating bone crises, resulting from a lack of oxygen or blood supply to joints or bones.
Many of these details were unknown in my childhood, when GD first manifested. Even the name has changed. We used the plural form, Gaucher’s, during my childhood. Today, the accepted form is Gaucher Disease. In both cases the abbreviation GD applies. In this story the plural or singular form is used to match the time described. In 1957, doctors understood GD as a progressive, genetic disease frequently resulting in bone pain and liver and spleen distress. No one knew the cause the disease. At the post-biopsy conference, my mother listened to the pieces of knowledge physicians then possessed.
Any child who inherits a combination of the recessive and dominant gene for GD, as my sister did, becomes a carrier of the disease, but doesn’t experience symptoms. A child with two dominant genes, like my brother, neither experiences symptoms nor passes the disease forward to his descendants. Inheriting the recessive GD genes from both parents, I had the disease.
Reporting to my hometown doctor, on October 11, 1957, the Mayo Clinic’s Dr. Hayles wrote:
"Dear Dr. Margolis. Thank you very much for your confidence in asking us to see your patient. I am sure you remember his history and I will not review it at this time. He was admitted to the Clinic on October 1…complaining of migratory joint and leg pains.
With these findings the patient was seen in consultation by a member of the section on orthopedic surgery. Bone biopsy was recommended. The boy was hospitalized…bone marrow biopsy was obtained from both the right and left femur. Microscopic examination of the tissue removed from the right disclosed only evidence of necrosis and clusters of fatty acid crystals. The material from the left contained numerous Gaucher’s cells.
We discussed Gaucher’s disease at length with Mrs. Brown and I believe that she has accepted these findings as well as one could expect.
It is our feeling that this disease will be slowly progressive, but that it is anticipated the boy should have no significant difficulty for many years. "
Home from Rochester, eager to resume my first grade life, we played football in the front yard of my friend Andy’s house, which stood at one end of our block. My cropped hair, dark brown like the rest of my family—except for what remained of Dad’s once iron curls, graying at the temples—bristled in the fall air. Holding the ball and running toward our makeshift goal, someone tackled me. I fell. I tried to get up, but couldn’t. My leg wouldn’t budge. Andy ran inside yelling for help.
The femur in my right leg, full of necrotic GD cells and weakened from the recent biopsy, snapped. No one anticipated this. I spent my sixth birthday in the hospital.
My fractured leg healed and I didn’t break any more bones until adolescence. But my disease changed my life. Each spring and fall, as the Michigan seasons turned, so did my body.
A knee swelled to the size of a softball. Shrieking when trying to walk, my parents carried me. But the jarring of their steps, out of my control, made me want to scream more than my own crawling. I began to fear another’s touch, unable to distinguish between a doctor’s heavy hands palpitating my tender joints or a feathery stroke of love.
Bone infarctions—that’s what they call the swelling now. Our word, “attacks,” better captures my experience. The pain seared every corner of my soul.
A pang. A funny feeling. A sense. Somehow I knew: my time had come. My mother knew it too. We kept it secret. Why worry anyone else? It might not come. But it always did.
A day. Maybe two or three. I’d feel it in my knee. Then something grew, inflated. I could barely see it, but I knew my knee swelled. Pain twinged—barely tangible. But I knew it would spread until the day I couldn’t get up, couldn’t move, could deny the pain no longer.
I’d want to be alone. Who wanted to inflict this pain on anyone else? My family tiptoed around me. I didn’t want to move. I didn’t want to breathe.
At its worst, I could barely tolerate food. I chewed nuts. Nothing else. We learned the hard way. I tried other things, but nothing else stayed down. Nuts: cashews have a lovely curve-- tender, undulating. Walnuts are like a saw, striated, just enough space for the tongue to lap the salt. Almonds are best whole, unless split exactly in half. Hazel nuts are hard, yet easy; whole, yet small. Did nuts feel pain when the nutcracker pierced their tough shells? Brazil nuts are odd—sometimes the flaxy taste one wants; other times, a waxy flavor to avoid. Peanuts, last eaten, filled about half the mixed nuts can. Eating nuts provided momentary diversion—an entertaining few seconds. I didn’t know why my body tolerated only nuts. I still don’t.
The beginning of the end appeared with another subtle sensation. My Mom sensed it too. One sign: a hankering for a Hershey cake my Mom made. When I asked for this dessert everyone knew. The end dawned. The cake marked celebration, relief.
Bone crises lasted about two weeks. The memories linger a lifetime.
Chapter 3: Alone
"July 27, 1966
Dear Mrs. Brown:
I am not sure I understand your request for me to “give any advice on what to do concerning the bone growth problem.” It is somewhat puzzling to learn Steve is still having discomfort in the same area of the left leg which was involved in an acute pain episode in May. This does suggest a careful review since one does not expect continuing troubles after these bouts."
With best regards,
Allen C. Crocker [M.D.]
I made straight “A’s” until fifth or sixth grade. In junior high school, seventh through ninth grade, “C’s” and “B’s became a struggle. My teachers and parents scolded me. “How do you expect to get into college if you can’t do better than this?” My life, my pain, interfered with the goals others hoped for me. But I didn’t know how to articulate such thoughts. I didn’t know what I thought. I lived in pain, physical and psychic. I concentrated on putting one foot forward.
Our annual summer vacations gave me a break from these stresses. The summer before eighth grade, Jimmy Fund Children’s Charity billboards loomed ahead as we traversed Boston’s Brookline Avenue toward Children’s Hospital. My parents had learned about Dr. Allen Crocker, a renowned physician working in the area of pediatrics and developmental disabilities. We’d arranged our annual summer vacation trip around a visit to his office.
Dr. Crocker gently measured and poked. He pronounced a gap almost an inch long between the lengths of my legs. He speculated my longer right leg resulted from my football fracture. I’d require special shoes, or a lift placed on the bottom of my shoe’s left heel, to compensate for the three-quarter inch difference. Needing to wear shoes all the time to prevent back pain, I still miss the feeling of tendrils of grass beneath my bare feet.
In my fourteenth summer I noticed persistent, sometimes breath-taking twinges of pain, like a serrated knife slicing along the inside of my left hip, near my groin. My physician ordered X-rays, which in the 1960s could be more painful than any ache.
Tall, long metal tables lay underneath enormous X-ray machines whose length often matched that of half to three-quarters of the table. The machine’s width was about the same dimension as the table and maybe half as deep. To have pictures taken by this elaborate apparatus, we wore wafer-thin gowns rarely covering our entire bodies, always exposing at least a portion of our behinds.
Climbing onto the table, with my aching hip, would be unpleasant, but worse awaited—a frigid metal tabletop. I dreaded the next step when the X-ray technician brusquely positioned my body at the best angles for picture-taking, disregarding my aching body. Whatever hurt when entering an X-ray room worsened during the process.
Once the technician found the optimum pose I’d be commanded to hold still. The technician moved to a nearby alcove to operate the machine. Through a microphone I’d hear the instruction, “Don’t breathe.” I’d play statue while the machine whirred. With the single word “Breathe,” I’d relax. The process recurred until finishing all the X-rays the doctor ordered.
Helping me off the table, the technician directed us to wait while the film processed. The pictures needed to be of sufficient quality to please the doctor. It frequently took an hour or longer to develop these films. I’d try to read but the lingering pain from the process I’d just undergone and my own impatience led concentration to elude me. I waited in fear. The entire process had to be repeated if the X-rays didn’t show the needed angle or proper clarity.
The doctor delivered his verdict. He couldn’t detect the origin of the pain.
None of us gave up because the pain continued. In the fall, another X-ray revealed a healing, hairline hip fracture. I used crutches to keep weight off my recovering left hip.
My doctor admonished me that my broken hip signaled a need to be cautious with my body. No more running or jumping. Sports were out of the question. I swallowed hard. Tears may have welled. But it was fall in Michigan; I could live without sports, without running or jumping while the temperatures froze and the snow fell.
My best friend Craig lived next door. We’d meet in our basements. The same words often came out of our mouths at the same time. “1-2-3 you owe me a Coke.” Our mantra when this happened. We became interested in psychic phenomena which we called ESP, extra-sensory perception. I picked up books about such experiences. Reading in winter increased since I couldn’t play in the snow anymore.
When spring poked through the winter haze a few months later I couldn’t help myself. I wanted to take advantage. In the past year or so my gangliness began to evolve into coordination. I’d felt athletic in my body as well as my desires and hoped to try out for the school baseball team. No one forgot my physician’s warning, but I couldn’t remain still while the birds began to sing and flowers to bloom. I could taste the dust of an athletic field. I knew I’d find my friends on our nearby baseball diamonds. I grabbed my mitt.
I didn’t slink out of the house. I discussed my desire to test the doctor’s conclusion with my parents. “Did I have to do this? Didn’t I think the doctor knew what he was talking about?’ It didn’t matter. The physician had been clear: I “could never again jump or run without risking further injury.” But I couldn’t help it. I had to test my body, to know it could endure. “Okay, do what you have to do.”
I walked outside to join my friends. We tossed the ball to one another in the field and practiced our swings. I strolled to the plate holding the bat over my right shoulder. I dug in, staring at the pitcher who glared back at me. He released the ball and I swung, my first hit of the season. Within seconds of running to first base I knew my hip fractured. Dismayed and scared I told no one. My life just changed forever and I blocked this reality to enjoy one last day of athletic freedom.
I limped home. My mother glanced at me, then dialed the phone to make a doctor’s appointment. Somehow she refrained from saying “I told you so.” My doctor calmly informed me if I attempted such foolishness again I’d likely require surgery, a hospital stay, and bone grafts from one part of my body to another. He meant to scare me and he succeeded.
Walking on crutches once more, my dreams of athletic prowess evaporated, but not my love affair with sports. Perhaps I could be a sports journalist. I contacted the local Portage weekly newspaper and I started a sports opinion column called “Brown’s Beat.”
External 1960s events impacted me as strongly as my internal tensions. I watched the civil rights movement unfold. Charismatic leader Martin Luther King, Jr. snared the nation’s attention when at a 1963 March on Washington he told us he had a dream:
"I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin, but by the content of their character….And when this happens, and when we allow freedom to ring—when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God’s children—black men and white men, Jews and Gentiles, Protestants and Catholics—will be able to join hands and sing in the words of the old Negro spiritual: Free at last, free at last, thank God Almighty, we are free at last!"
King became one of my heroes. An early protester of the Vietnam War, he recognized the toll it took on black Americans. He also battled the capitalist system that ghettoized his people. In Memphis, in March 1968, King lent his support to striking black garbage workers. A month later he returned to that city and in a speech called “I’ve Been to the Mountaintop” he relayed he’d made it to the top of the mountain and peered over it to view a new dawn, a new life of freedom for black—and white—Americans. He also wondered if he’d live to see his dream become reality in part because he received numerous death threats. This wasn’t idle speculation. Standing on the balcony of his Memphis hotel, an assassin fatally shot him.
Stunned, I watched the TV news reports about King’s death, then walked to my bedroom, shut the door, pulled out a notebook and began writing. I reflected on King’s death and how I wanted to change the world. I wanted to live on a planet where all people were treated with equality and justice. I hoped to become an impactful writer.
The turmoil of the late 1960s matched my own internal strife. Home life—supportive in so many ways throughout bone crises and bone breaks, learning to drive, participating in social activities, traveling—became increasingly stifling at fifteen, sixteen, seventeen. My brother, sister and I engaged in questioning and spirited conversations at the family dinner table, encouraged by our parents. But when I explored doubts about deeply held religious and social beliefs, our family ritual became oppressive. I wanted to probe issues of interest, including politics and religion. But I so outraged my father he quashed all conversation. One day I simply chose to keep my mouth shut. With each passing day I repeated a mantra: I’d leave home in three years; two years; one year; six months. Until then I’d guard my thoughts. I retreated to my bedroom, my haven of privacy.
"When seen on November 21, 1968, the patient was having distress and disability of the left hip and left knee. The patient walked with a definite antalgic gait on the left. There was considerable tenderness elicited over the left greater trochanter, but no tenderness or effusion of the left knee was noted. All motions of the left hip were limited. In December of 1968, the patient had another flare-up of Gaucher’s disease which lasted for about two weeks."
Robert J. Graham, M.D., Sept. 23, 1969
Practice Limited to Orthopedic Surgery
In the summer of 1968, before my senior year in high school, my Dad accepted a better paying job in another state. We moved into a small rental home in East Moline, Illinois. One of several northwestern Illinois locales on the banks of the Mississippi River, known as the Quad Cities, East Moline sat adjacent to Moline and across the magnificent Mississippi from Davenport, Iowa. On the other side of Moline lay Rock Island, the largest of the Illinois cities.
While Dad acclimated to his new State Hospital job, my brother and I learned about our new high school, United Township. It served lots of smaller, surrounding communities and totaled about 4,000 students. One building couldn’t accommodate us all, so freshmen and sophomores used the old high school while juniors and seniors attended the newer one. Marty rode a bus to his school, while I’d walk, bus, or drive. Once or twice a year, the entire school gathered in one building for an assembly, displaying the area’s diversity—middle class kids, redneck families, farmers, city boys and girls, Mexicans (not yet called Chicanos or Latinos or Hispanics), blacks, and a variety of religions, dominated by fundamentalist Christians.
I joined the debate team and Junior Achievement, a vocational club where I focused on radio and television. These extra-curricular activities kept me busy during my senior year.
My brother and I shared a small room, sleeping in bunk beds. For a modicum of privacy, I carved out a small space in the basement and covered the wall above a desk with sports articles and memorabilia of other passions.
We also found a new orthopedist, Dr. Graham, reputed to be the area’s best. A bear of a man, sporting a waxed, handlebar mustache, Dr. Graham loved his job. He spent the first part of each day in surgery, seeing patients in the late afternoon and evening. Rather than going in at my scheduled appointment time, we’d call to see how much later we should arrive. We spent three hours with Dr. Graham during our first meeting. Impatient waiting room faces stared at us when we walked out of his office, but Dr. Graham believed in taking his time and being thorough. Being scheduled for 4 p.m. might mean getting in to see him at 7 or 8 in the evening.
As in Michigan, my body changed with the seasons. Western Illinois had a somewhat gentler climate than southwestern Michigan and I responded a little later in the year to the change. With my focus now on writing, I decided to keep a diary during a bone crisis. Two entries follow:
12/19/68
I didn’t get much sleep last night. I woke up at 2:30 A.M. and moved from my bed to the couch. I have been there since, always with a heating pad on my hip. Needless to say I was absent from school today.
Indeed today I have been bothered by so much pain that I pray [it]does not increase. In addition to the constant dull pain in my hip joint, is the sharp pain that pierces my nerve center when I attempt to move my limb.
It is a major effort to go from a laying down position to sitting up and much more painful to try to stand. When I want to sit I gently maneuver my leg from the couch onto the floor, with the rest of my body following. This is relatively simple and painless when compared to trying to stand.
It is unbearable to put weight on my right leg, so I am using crutches. I take my crutches in my right hand and push with my left hand and leg. This sounds easy, but it’s not. Usually when I have just managed to leave the couch, piercing pain runs through my joint. Every time I manage to stand, I am extremely grateful, especially since it hurts as much to be sitting as it does to stand.
With the unrelentess [sic] pain I am taking a steady dose of medication, but it does little or no good. I ran out of codeine pills, which were much more effective than all my other medicine, so for the latter part of the day the pain has been gradually worsening.
While I was home today I viewed TV and read. I didn’t think I read enough last time I was sick, so today I read the Sporting News, finished a Time (from 2 weeks ago) and read The Wisdom of Martin Luther King. The last time I was sick all I read in addition to the Sporting News and Time were Oedipus Rex, Macbeth, the last half of King Lear and the first half of The Making of a President: 1960.
My diet has consisted of an apple, two glasses of milk, half a sandwich, some fish, salad and corn and a can of pop. I was pushed into eating so much.
Today, I remembered I should have realized an attack was coming, because for the past week and a half it has been almost impossible for me to stay seated longer than half an hour.
Tonight we celebrated the fourth night of Hanukah, which I enjoyed little. I doubt that my Christmas vacation will be spectacular either. That reminds me that tonight I was supposed to play Santa Claus in our Junior Achievement TV company’s Christmas special. I was looking forward to it and am disappointed someone else had to be chosen.
Today only one thing has annoyed me tremendously besides the pain and that is noise. The more noise I hear the more irritable I get, which makes life miserable for everyone else.
Now, some more pain-killers and off to sleep—I hope.
1/4/68 [sic-should be 69]
No pain.
Later that year, enraged over some slight, beyond flustered and lacking control over my life, I descended the basement stairs, in more of a frenzy with each step, and ripped everything I’d lovingly created and placed on the walls into shreds. My Mom yelled, “Why can’t you act like everyone else?” I shouted, “I’m not like everyone else!” I stormed into our bedroom, lay on the bottom bunk and tried to calm myself. Maybe an hour later Dad knocked. He sat at the edge of the bed, and let me know Mom regretted our exchange. This conversation for the first time acknowledged the emotion of how I differed from everyone else and got me through the next few days.
During the latter part of my senior high school year, I started experiencing severe pains in my left hip, the one I’d previously fractured. Dr. Graham recommended I strap on a full-length hip brace to alleviate weight and pressure on my hip.
Two metal bars along the length of the brace fortified a plastic cup supporting my hip. My left shoe screwed into the brace so it became a one-piece contraption, from shoe to hip. In cold weather, the metal sent icy sensations down my skin. Screws at each side of my knee held in place a bar I’d maneuver to bend the apparatus to be able to sit. At all times, I walked with a straight gait. The bar around the brace at my knee widened my pants leg so everyone could observe something different about me.
At the end of my senior high school year in East Moline, resigned to my strange way of walking, I headed for college at Southern Illinois University in Carbondale, as far south and warm as I could travel and retain in-state tuition.
Chapter 5: Caves, Tear Gas, and Revolution
"I am delighted to hear that Steven is getting along well and that he has learned to accommodate to his disease. Enclosed you will find a copy of the letter we wrote at the time of Steven’s dismissal from the Clinic. This letter should be transmitted to the draft board. I feel confident that Steven will not be a candidate for military service."
S. B. Hayles, M.D., July 8, 1970
Carbondale epitomized a college town. Strip mining depleted the area’s coal and Southern Illinois University (SIU) became the town’s big business. Twenty thousand SIU students supported professors, other university personnel, and merchants, in a town of 40,000.
In my first days on campus I met Bobby and Scott, who became my closest friends. Both graduated from junior colleges and traveled “west” from east coast cities. We sat together for many meals. While I slowly consumed heaps of food we’d discuss politics, money, and women. My still growing, gangly frame had lots of room to pack in the chow. In high school, I’d dreamed of becoming 6’2.” As a college freshman I shot two inches past that to my full height of 6’4.”
I’d planned to be at SIU for two years, then transfer to a school in the west, where my body would appreciate warmer weather. SIU’s flexible General Studies curriculum, which gave two years to declare a major, meant I could sample various fields. I intended to immerse myself in the college’s many offerings, both in classes and out in the world.
Rebellion permeated our lives. Our history professor declared he wouldn’t penalize students who boycotted class to protest the Vietnam War during a National Moratorium Day. I participated and contributed to SIU’s reputation as Illinois’ most radical college campus. But my political bent soon gave way to the charms of a dorm resident I met at the beginning of SIU’s 2nd quarter.
Quince didn’t ridicule me when I mentioned my feelings about extra-sensory perception. “What could I do?” I told him about moments I perceived someone wanting to contact me and it’d happen, or time spent communicating with various friends, but hardly speaking a word. Quince said he’d experienced telepathy, astral projection, and precognition. “Would I like to meet three of his friends? They spent most days exploring their minds.” I became an eager disciple.
Bobby and Scott wondered why I stopped eating with them, but I wouldn’t, couldn’t, share and they quickly decided to ignore me. I didn’t care.
Quince and his friends—Dixie, Brad, and Annie—tentatively let me into their circle. We’d burn candles and peer through the light into one another’s auras and infinitely malleable shapes. Quince’s transformation burned into my consciousness. Dark and intense, the lines of his body dissipated into wavy colors. Red. Green. White. Black. His huge head dominated my internal sight. He smiled as he invaded my soul. How did he work his way into me? I didn’t know, but sensing his presence within frightened me. Wanting him gone, I withdrew from this exercise.
On one occasion, we meditated in a quiet Student Union space and our minds melded almost into one. We explored the low, rough, brown ceiling and narrow, craggy halls of a cave. All of us were there, but I was alone, prone, apart from the rest of them. I wanted to rise but feared the consequences to my flimsy skull. I lay still, fearful. Jeans tattered, shirt dripping with sweat. Somewhere nearby I discerned voices and a light. A dull yellow almost reached me. Low voices, excited murmurs taunted. Perhaps I could join the group whose voices wended their way to me. Projecting my internal voice as loudly as possible, desperate to be heard, only silence reverberated. I stretched, closed my eyes and listened. Straining, tensing, trying to see them, only whispers reached me.
Feet glided over steps. Voices faded. The group vanished. I heard faint murmurs. They couldn’t be far. If only I could narrow the distance. I strained and concentrated, but only my mind grasped their presence. The four of them explored the cave and each other, while I remained behind. When we awoke from our trance I knew I could never maintain their pace, but there was so much to learn I wanted to stay.
Quince wanted me around too, less for my mind than my body. I lacked interest, but cherished Quince’s companionship. One day, about a month after meeting, we sat in his dorm room, both knowing what he wanted. Wearing me down, we undressed and his mouth engulfed me. New to someone else’s lips on my intimate parts, I lay back thinking perhaps I could enjoy this. I relaxed a bit, but not enough. Quince didn’t realize how naive I was. I flinched when he thrust his manhood at me but he pressed. Reluctantly, I placed my mouth over his rod. I blanched, tried again. I couldn’t do it. I quit. I had no conception how devastating rejection would be. I didn’t realize the depth of my naivety. The magic vanished. Quince didn’t trust anyone he couldn’t manipulate. Despite my ugly encounter with his flesh I still wanted to learn from him, to communicate telepathically, to join the group in the cave or wherever else they might go. I wished to enhance my parapsychological powers.
I persisted, as did Quince. He focused his charm and power. Lying alone in my dorm room I felt his presence—cajoling, manipulating. Being attacked by someone not in my physical presence terrified me. If he could penetrate my consciousness in this way what else might he do? Fighting his advances, I think I defied his aggression only because in my great innocence I failed to understand the power of so sensual a being.
I began noticing unappealing group dynamics. I watched Dixie sensually manipulate Quince, Brad and Annie. We never trusted one another so within the group she openly despised me. I didn’t much like being around her and avoided her when I could.
I began to see in this quartet a definition of evil, a word I didn’t use lightly. They cared so little about other people nothing stopped them from seeking their own gratification. I chose to remove myself from them as far as I could. Not only physically, but in every other way. I feared them and what they might do to me. I didn’t possess the power to protect myself from their psychic assaults, so I chose to block that part of my life, believing I selected good over evil. When I sought Bobby and Scott again, they shook their heads at me expressing a few moments of confusion at my months of disappearance, then welcomed me back. While I’d focused on myself, they’d concentrated on their studies. Unlike me, they’d be drafted into the military if they left college for any reason. Then in the spring of 1970, all other endeavors, extracurricular or not, succumbed to the dominance of our undeclared war in Vietnam. President Nixon, despised by many, but elected at least in part because of his 1968 campaign promise to end this war, made a startling announcement: the United States sponsored an incursion into Vietnam’s neighbor, Cambodia, to eliminate enemy sanctuaries.
The invasion of Cambodia lit an inextinguishable fire. Peace activists arose in record numbers, resulting in the largest campus protests in the nation’s history. Over a million students and half of America’s twenty-five hundred college campuses witnessed protests. Peaceful demonstrations drew adequate crowds until we learned the National Guard gunned down four students at Kent State in nearby Ohio. The governor of Ohio requested the National Guard’s presence at Kent State in what we perceived as overreaction to protests there. Standing on the steps of the University’s Administration Building, young and inexperienced members of the Guard panicked. First names, then rocks and bottles had been tossed at them. Scared, they fired and four students paid the price with their lives. What would happen now on other college campuses? What could we do to display our support for the slain students, immediate martyrs?
Furious that the government expanded the fight from Southeast Asia to American college campuses where American students had become the enemy, too, we wouldn’t submit. We’d protest. Bobby and Scott demonstrated that night, while I chose to focus on my studies after my dalliance with Quince and his gang. About nine or ten o’clock I heard angry voices. A couple hundred students had protested the war and the Kent State murders. Cops arrived and name-calling ensued. The police, disparagingly called “pigs,” didn’t sit by idly. They attacked. Bobby’s roommate displayed the bruise on his head where a club struck him. Bobby and Scott showered us with narratives of police brutality and narrow escapes.
How dare anyone treat my friends with violence and disrespect? The three warriors said another demonstration would occur the next evening. Would I join them? I had no intention of missing it.
Talk around campus the next day centered on the demonstration and violence of the night before and the action planned for today. So many people wanted to be involved in the night’s protest, preparatory meetings were called.
Bobby, Scott, and I walked toward the common area for the preliminary meetings and the starting point of the march. Speakers climbed onto a platform. We’d shown up to share our support for ending the war. We’d march to demonstrate solidarity with those who lost their lives at Kent State. We’d calmly arise as one in a few minutes and march a mile from the middle of campus to downtown Carbondale. We’d hold high our signs and sing songs of peace and freedom proclaiming our desire for the war’s end.
We’d all seen the National Guard. Passing the campus Armory on our way to the meeting we observed Guardsmen standing outside and preparing tanks for action. Illinois’ Governor, like his Ohio counterpart, had called for reinforcements.
Campus leaders warned us to bring jackets and handkerchiefs in case the Guard used tear gas. If that happened we knew to calmly cover our faces and breathe into our protective cloths.
At least a thousand strong we marched the mile to downtown. We avoided the Armory, but couldn’t help passing some Guardsmen. A few cries of “pigs” and “murderers” split the air, but most of us remained silent, communing with ourselves. A few Guardsmen retaliated with insults of cowardice and betrayal. Most stayed quiet.
Bobby, Scott, and I walked solemnly, excitedly, experiencing frequent mood swings. Downtown, merchants stared at us. No prior training prepared them for this experience. Business owners guarded their front doors, concerned about vandalism and looting. Some sympathized with the protestors, some vilified us, but most feared our destructive potential.
Protesters unable or unwilling to attend the initial meeting joined us. Curious onlookers invaded downtown. Two thousand people filled the main corner of Carbondale’s puny downtown district. We sat down, obstructing traffic. We intended to spend several hours blocking routine downtown intercourse. We’d hit the establishment where it hurt—in their pocketbooks.
We talked and sang, laughed and bantered, enjoying each other’s energy, glorying in our righteous rebellion. Then the seemingly inevitable occurred. About fifty protesters decided to be more militant and moved to nearby railroad tracks, perhaps fifty feet from the center of the crowd. Leaders of the March cajoled, connived, and pleaded, but the railroad protesters refused to budge. The rest of the crowd nagged and bitched. Still they sat. The police delivered an ultimatum. They’d decided to let us block downtown commerce, but they couldn’t tolerate interfering with trains. One would come through downtown in about an hour. The tracks needed to be cleared within thirty minutes. If protesters persisted in remaining on the tracks, they’d be forcibly removed. A few railroad sitters left. A few replacements moved to the tracks and they remained blocked.
The street sitters, proud in our peaceful, rightful protest, began to wonder what would happen. Though nervous we meant to remain. We didn’t agree with those idiots who blocked the rails.
We watched and listened to the variety of faces and bodies surrounding us. Most conversations revolved around drugs or sex. Time ticked away. We noticed tanks edging closer. I pulled my light, white jacket from underneath my bottom, hands tensed about the fabric. Bobby and Scott retrieved their protective garb. Tanks pulled nearer. Men in drab, gray-green uniforms stalked toward us. The crowd on the railroad tracks grew feistier. Anxiety pierced the air. An angry, anxious, booming voice matched our mood.
A soldier gripping a megaphone bellowed the time: “Fifteen minutes to clear the tracks!” Yells. Taunts. A few screeching, piercing voices, unaided by megaphones, returned the chatter. A few more people edged over to the tracks. A few others retreated.
HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO!
“Ten minutes to clear the tracks! We are not joking! This is a serious matter! We will forcibly remove you!”
More screams. More challenges. Verbal jousting became a precarious foreplay to the grave business at hand.
HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO!
No one from the crowd sitting in the middle of the main street corner, the corner Bobby, Scott and I inhabited, evinced any inclination to move. We were on a mission. We awaited the fate of our rowdier friends. Our chanting continued.
HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! We sang Country Joe and the Fish’s anti-war song, the “I-Feel-Like-I’m-Fixin’-To-Die-Rag,” which asked why we were fighting and dying in a war in a country on the other side of the world that didn’t seem to have a lot to do with our lives, despite the politicians’ rhetoric. Then, more chanting: HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO!
“Five minutes to clear the tracks! If you do not remove yourselves peaceably, we will be forced to take actions we do not want to use! Measures you will not like. We are concerned about your safety, but we cannot vouch for it! You may get hurt! You may be harmed! Remove yourselves from the tracks! This is your final warning!
HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO!
A few people rose around us. They looked at the soldiers, peered at the tanks. Eyes enlarged with wonder, fear. Some sat. Some remained on their feet. A few walked toward campus. Four minutes remained.
The crowd on the railroad tracks ebbed and flowed. I gazed in that direction and watched a few brave, reckless souls join their companions on the tracks. I looked again and people got up and left. Three minutes remained.
Bobby, Scott, and I eyed one another. The moment of truth. We feared it. We couldn’t believe another disaster like Kent State could happen here. Two minutes remained.
HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO!
One minute remained.
The soft, low whistle of an oncoming train split the night. Onlookers left. A few stragglers refused to leave the railroad tracks. Hundreds, maybe thousands of others maintained their posts on the corner.
HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO! HELL NO, WE WON’T GO!
Metal whizzed beyond us. A thud and a fire ensued. Screams. Flesh sizzled and burned. Smoke filled the air. Tear gas canisters randomly creased the crowd. As a body the mass jumped to its feet, heading home, to campus. Running, screaming, frenzied cries. A few voices made themselves heard.
“Watch out for the canisters.” “They’re on fire.” “Put something over your faces.” Many protesters failed to heed the warning about bringing a jacket or handkerchief and coughed and gagged in the night air.
“Bastards!” “Sons-of-bitches!” “Pigs!” “War-mongers!”
I walked along, as calmly as I could. Afraid for my safety but conscious of breaking bones if I forgot myself and ran, I silently counseled patience. “You will get out of here. Be calm. Put one foot in front of another. Don’t panic. You’ve walked these streets hundreds of times. Just move along casually, steadily. You’ll make it.”
My stiff left leg, confined in its brace, unable to bend at the knee, dragged behind my more anxious, stronger limb. But heeding my advice, walking along as slowly as I could pace myself, as fast as I dared, I saw sights fleeter protesters may have missed.
A metal canister burned on the ground surrounded by a low-grade, almost invisible yellow flame. Found more often by flesh than by sight, yelps and curses reached me as retreating war resisters chanced upon the canisters. Gas hung in the still air. I placed my jacket firmly over my nose and mouth and as close to my eyes as I dared. I’d have closed my eyes altogether and used the jacket to shield my entire face had I not observed so many people running into or narrowly missing tear gas canisters.
Soldiers continued to move toward us as we retreated in the direction of campus. They didn’t hurry to catch us, but they did appear miffed. Tear gas canisters continued to be tossed at the crowd. Taunts back and forth between soldiers and protesters nixed any chance at peace. The Guard herded us like cattle back toward campus.