Wednesday, August 27, 2014

ASPERGER'S;THE MISSED DIAGNOSIS PART TWO



                                             PART II: Edward Arrives

          I was well settled into the routines of the ward when seven-year-old Edward arrived on the ward one sunny morning with his mother, a tall, anxious blond woman with sharp facial features. She had brought clothes for her son in two brown grocery bags.  When she introduced him to me I noticed that Edward avoided eye contact.   Head bowed, he stared at the floor just in front of his feet.  I assumed he was shy in meeting strangers for the first time, not uncommon among children his age.   I could see he was tall for a seven-year-old and resembled his mother.  She left the ward, explaining that she had to sign some papers in the admissions office, and I showed Edward to his room.  Then I took him on a tour of the ward, which was mostly one large room with a dining area and a lounge area with furniture gathered around a TV screen.
          I noticed that Edward moved slowly and deliberately.  It was as if he had to think about each movement before he began it.  His body movements resembled a character in a slow motion movie and were awkward.   Later, as I entered his room to begin the day, I would find him standing in the middle of the room, nude and not moving.   When I greeted him with “Good Morning, Edward.  How are you this morning?” he would slowly turn his head in my direction but avoid eye contact and say nothing.  Then he began the laboriously slow process of dressing himself, a task that could require 20 minutes and more.   I learned Edward could not tolerate being touched.  If touched accidentally, he would flinch, draw back and would bark “Don’t do that! Do NOT touch me.”  He also objected to anyone, usually another child, entering what he considered to be his space.  
          A few days after he arrived he began identifying his psychologist, nurses, attendants and even children on the ward as automobiles.  His psychologist, a rather conventional looking man, became Dr. Ford Falcon.  One of the nurses, a beefy woman, he named Nurse Mack Truck.  A pretty petite nurse on the ward became Mini Minor.  A handsome, powerfully built psychiatric resident from Columbia became Dr. Chevy Corvette.  His choice of car models for human beings showed remarkable insight into personalities as well as physiques.  The names he gave doctors, nurses, attendants and even some of the children, seemed to fit. 
          But in the first week or so Edward did not give me a name at all.  I was wondering what model of car or truck I would become in Edward’s personal garage.  Then one morning Edward was going through his impossibly slow dressing routine with his back to me, picking up each piece of clothing, inspecting it, and then slowly putting it on.  Suddenly he turned his head but not his body and said in his normal slow, deliberative manner,  

“You are a bear, Mr. Bear.” 

So that is how I became Mr. Bear and how he addressed me and what he called me in the presence of others.  It was progress of sorts.  Rather than identify me as an inanimate object he had conceded that I was a living creature like himself.   
          But not one gifted with speech.  As the days passed, each morning I entered his room, greeted him, and asked how he had slept and how he felt.   And each morning he would turn his head in his peculiar awkward slow motion without making eye contact, and would say,

“Please don’t talk, Mr. Bear.  You know bears can’t talk.”  

          I did not know why my talking bothered Edward but I supposed it was because he was not yet prepared to accept that I was capable of human speech.  Nor did he begin to welcome any physical affection.  He continued to flinch when anyone accidentally touched him and that included me.  But I continued to greet him each morning as I entered his room and continued to talk to him throughout the day.  But I respected his desire not to be touched.
          Edward did not interact with the other children at all.  He was a poor eater and when after a week or so he agreed to sit at the dining table with the other children, he sat as far away from them as he could. One boy tried to befriend him, asking him questions about himself, in the hope he could start a dialogue.  Edward ignored him.   It was the custom to say a brief grace before meals.  Some of the older children would say a prayer to which the others responded with,” amen.”  But Edward did not respond.  Annoyed, one pious little girl who compulsively washed her hands a dozen times each day challenged him.    

“You did not say amen, Edward!  Say amen!” 

Edward did not look at her nor did he say amen.  A fourteen-year- old red headed boy with Tourette's syndrome had punctuated the prayer by repeating, “Shit, shit, shit, shit” which caused the little girl to frown and some of the boys to giggle but Edward did not react at all.  
          Edward was willing to talk to the other children as long as the subject was cars or trucks, but not willing to respond to their questions or carry on a dialogue of any kind. He had an amazing knowledge of automobiles and peopled his world with them.  He drew automobiles and trucks and nothing else incessantly and his drawings were unusually detailed and accurate.
But he always sat apart from the other children and the adult personnel on the ward.  In the evening before bedtime, children’s stories were played on the large TV screen in one corner of the ward.  The children, all in their pajamas, would crawl into the laps of the nurses and attendants for some good night comfort.  But not Edward.  He always sat apart and did not invite or seek any physical affection. 
          One morning at the end of Edward’s first month on the ward I walked into his room and as I began the morning greeting, he turned slowing, looking at the floor in front of me and said, “You are Talking Bear.”  So if Edward could not accept that I was fully human, he had conceded that I had at least one primary quality of human beings.  Speech.  And from that moment I became “Talking Bear.”      
          Edward’s world included unusual fears.  He would sometimes say,
“I do not like this two-piece kitty.”  I had no idea what that meant.  I could think of no story books with two-piece kittens.  And then days later, I heard, 
“I do not like this two piece kitty.  Iowa Kitty is a two piece kitty.” 
          The light dawned.  He meant city, not kitty, and what disturbed him was how the Iowa River divided the city as it flowed through the middle of the university campus.  We sometimes had to cross the bridge over the river on our recreational walks and our twice weekly trips to the university’s natatorium to swim.  At first Edward balked at crossing the bridge above the river.  I finally persuaded him to come with us by picking him up and carrying him on my back, a routine we followed from then on.  Once at the pool he would, again with some persuasion, walk into the shallow end of the pool and stand upright and walk around. He did not go into the deeper water and did not swim.  He insisted that no other children come into the zone he considered was his alone.  If they did so or if a water polo ball landed in “his” zone, he became very upset. 
          The medical staff of the hospital had not settled on a diagnosis for Edward.  At a Grand Rounds attended by all those with an interest in him a psychologist, a short woman with short brown hair and a solid figure, presented an analysis of Edward’s voluminous drawings of cars and trucks.  What I remember from her presentation is the number of penises she found in his drawings but I no longer remember what that finding was intended to illustrate.  A psychiatric resident, an ascetic looking man with rimless glasses, presented his view that Edward’s condition resulted from an imbalance of chemicals.  While there was no final agreement on a diagnosis for Edward, the consensus seemed to be that Edward was suffering from a form of schizophrenia.  No one seemed to have suggestions to help him.  He would continue to be under observation.  I dreaded the thought that Edward could spend years in an institution as had Willie, the boy who had touched my heart the summer before.  
          As the days passed I realized that despite my effort not to do so, I was becoming fond of Edward.  I am not sure why because he did not welcome affection and gave none.  And while it was true I had become his “Talking Bear,” I did not seem to be helping him either. 
          One evening we were all gathered in front of the television for the usual good night cartoon stories, the children in their pajamas.  Edward was sitting apart from everyone else. Suddenly I was surprised to find him climbing into my lap.  He leaned into my body and I gently folded my arms around him.  We sat like that for the rest of the stories.  Later I walked him back to his room.  I turned off his bedside light but we could see each other in the half light from the ward hall.   

“Good night, Edward,” I said.  Happy dreams. Sleep well.”

“Good night, Lewis,” he said, looking up at me and using my proper name for the first time. “Good night, Talking Bear.” 

It’s clear today that Edward was not schizophrenic.  He had Asperger’s Syndrome, a condition first described in l944 by Hans Asperger in Austria. Asperger’s work was probably unknown to many in the American psychiatric community in l959 when Edward was a patient at the hospital in Iowa City.  Asperger’s Syndrome fit Edward’s behavior. This syndrome is similar to autism but children with Asperger’s Syndrome typically function better than do those with other forms of autism.  Their intelligence and language skills are often extraordinary.      





ASPERGER'S; THE MISSED DIAGNOSIS 1


                     ASPERGER'S; THE MISSED DIAGNOSIS  PART ONE
         
I suppose it is true that someone with my history as described in Children of the Manse has deep within him the ghost of the neglected and abused child he once was.  For whatever reason, all my adult life I have found myself especially drawn to children whose struggles bore some resemblance to my own.  The following story is about children I remember from two summers working as a ward attendant in a psychiatric teaching hospital in Iowa some years ago.  
          If your interest is primarily in Asperger’s I suggest you begin with the second part of this story.     
                   
                                                  PART I

Following my first year of graduate theological studies I was required to work in a hospital, a prison, in programs for recovering alcoholics or for unwed mothers. I chose to spend the summer of 1959 in the psychiatric teaching hospital of the University of Iowa. My program had little structure.  I worked as a ward attendant under the same conditions and for the same modest pay as other attendants in the hospital.  I was also required to do some additional reading and to meet every two weeks or so with a short, rotund and mildly cynical hospital psychiatrist and an Episcopal priest of impressive learning from Cedar Rapids who was himself a psychologist before entering the ministry. 
          I quickly realized I had begun one of the most exciting summers of my life.  I adjusted easily to the environment of the hospital, admired the nurses and attendants I worked with…all decked out in medical white… and was fascinated by what I was learning.  The social scene among the nursing students, medical students, and attendants was free and open, so unlike the semi-monastic environment in which I had lived for nine months in the seminary.  One special excitement was a summer romance with a recently divorced, attractive blond nurse. More than once that summer I considered abandoning my studies for the Episcopal priesthood to become a psychologist.                                   
                                        The Hospital               
          The hospital, of dark brick and one story, was built for its function. The west wing was for female patients, the east for males.  The two south wards of each wing were for neurotic patients.  The north wards of each wing were for psychotic patients who were locked behind heavy gray metal doors with tiny thick glass windows that closed with a comforting click.  These patients were closely watched, especially in the bathrooms where they were carefully monitored to thwart suicides.  Occasionally one of the psychotic patients would have to be sequestered, raging, screaming, and threatening violence, in one of two padded rooms near the middle of each ward.   
          The fifth ward was for children who were kept separate from the adult wards of the hospital and had their own adjacent outdoor play enclosure.  I rotated through all five wards over the course of the summer but I most enjoyed the weeks I spent on the children’s ward.  
                             
                                        The Second Summer

          The following year the US economy was in recession and I was having difficulty finding a summer job, necessary if I was to afford the next year of theological studies.  I decided to call Mary, the friendly nurse director of personnel, to ask if I could return to again work as an attendant for the summer.  The salary was enough to cover my expenses and put aside some savings.  The social life was great, though I suspected my summer romance had found a new boyfriend, which turned out to be so.    
          Mary was at first non-committal but called me a few days later. 
“Yes,” she said, “There is a possibility.  We’re sometimes asked to hire athletes on the football and basketball teams as part of their scholarship package.  A few years ago two of the football players roughed up one of the boys on the children’s ward and we decided to ban adult males from the ward.   We would like to explore changing the “no males” policy. We think the children need a positive male image. We were impressed with your work on the children’s ward last summer.  So, yes, if you are willing to spend the summer full time on the children’s ward, we have a position for you. You will be on probation and if for any reason the reintroduction of a male to the ward does not seem to be working out, you will be released immediately.”  So I climbed on a Greyhound bus in Chicago and returned to Iowa City. 
          I had forgotten how hot and humid summer is in Iowa.  The stillness, the absolute immobility of the summer air is stifling.   The river which divides the university and the city seemed almost stagnant without wave or ripple.  At dusk hundreds of bats fluttered through the thick air.  I again donned a white medical jacket, thrusting my arms through the stiffly starched sleeves and struggled with closing the buttons on the left side.  I waited outside Mary’s office for her briefing while she finished a phone call.  I began to recall the most memorable patients from the summer before; the acutely depressed elderly bearded Amish man who recovered quickly after three courses of electro-convulsive therapy treatments; the paranoid dermatologist who, looking out the bathroom window, described for me in detail a helicopter loaded with marines that was coming to rescue him, a fiction real only to him.  I remembered the nearly comatose forty-year-old woman who in youth had suffered a frontal lobotomy, one of early psychology’s dreadful horrors.   And fondly I remembered Ben, the fourteen-year- old boy whose addictive glue sniffing stimulated his fantasies of becoming a major league baseball player. 
          And I most especially remembered nine-year old Willie, who had lived in institutions most of his life and whose blazing eyes could show more hatred than I had ever seen in a human being.  Willie was afraid to love, even to show affection, for fear of being hurt again.  I saw myself in Willie.  I was an abused and neglected child who eventually was placed in an orphanage.  I also feared to love and found it impossible to respond to affection.  When finally adopted at the age of eight, my mother told me that a year passed before I would permit her to hug me and another year before I could return her affection.  When Willie one day surprised me by holding my hand and later giving me tiny awkward half-hugs I wanted to cry.  Those moments are what make working with wounded children so fulfilling.     
          One memory I tried to remove from my mind and could not was that of Joyce, a pretty woman with clear blue eyes, delicate features and soft brown hair.  Joyce weighed less than 100 lbs.  I and another attendant assisted the psychiatric resident and nurse who administered Joyce’s series of electro-shock treatments, three times a week for four weeks.  Joyce had asked to be the first of the eight patients we treated with electro-shock therapy each morning so she wouldn’t see the other patients as they were returned to their beds, pale and seemingly dead. 
          I winced as I recalled how I as one of two attendants on separate sides of her body had gently grasped one of her shoulders and a lower leg as the electric shock hit her tiny body which pitched up in an arc from the gurney, went rigid, and then fell back again.  Her lungs gasped, she turned blue as the convulsions began, at first large and far apart, and then smaller and faster until they were hardly more than twitches.  She did not appear to be breathing.  Her skin was white, bloodless. 
          Mary finished her phone call, walked into the reception room where I had been sitting and brought me back to the present as she began much the same briefing she had given me the summer before.  She singled out a single key from the mass she carried on a large circular ring.  “This is your “B” key, she said.  It will open most doors except for the padded seclusion wards and the medication cabinets.” She reminded me that dating patients was cause for immediate dismissal.  “Neurotics can be charming.  More than one nursing student or attendant has fallen in love with a patient,” she added.  “And remember, you will be on probation.”
          I said I understood, thanked her for hiring me, and soon settled into the regular routines of the children’s ward; the briefing at the beginning of shifts by the duty nurse, and the reading and writing of medical charts.  We did not take the temperatures and pulses of the children daily as we had on the adult wards and only the duty nurse was authorized to distribute medications when those were prescribed. There were, of course, no padded cells in the children’s ward and I was no longer required to assist at electro-convulsive treatments.  Activities on the ward included reading to children, board games, trips to the university’s swimming pool, visits to museums and walks in the neighborhood.  I ate with other attendants and nurses in the cafeteria in the main hospital building across the street and managed to rent a dorm room near the hospital, a single I enjoyed having all to myself. 

Friday, February 21, 2014

Philomena: Will Hollywood ever tell the other story?

  

          I cannot go to see the film “Philomena.”  I would find it too upsetting.  You see, it’s not my story.  My story is not about a mother forced to give up her baby and then spend a lifetime looking for him.  My story is about a mother who willingly gave up her children, all four of us, and begged social services in the 1940s to put us in an orphanage while she went on her merry way in her self-centered life. 
          My story is about a mother who showed up a year later with a new husband and a new baby on the one occasion she visited us in the orphanage.  I knew then that her marriage to my father, the father I deeply loved, was over, and that she was perfectly happy to leave the four of us in the orphanage.  Actually the man who was with her during that visit was not her husband.  He was yet another lover who did not marry her.  But she found a new man (there were many) and he married her and they had another child, another girl. 
          This is not the kind of story Hollywood wants to do.  It doesn’t grab the heart strings somehow.  If ever they decide to film my story, or one like it, it is told in the first third of Children of the Manse, a book I published four years ago.
          But what Hollywood would like is the way our story ended.  We were rescued and mostly healed by Fred and Evelyn Luchs and went on to enjoy healthy and productive lives. That story is told in the last two-thirds of the book.  We all like happy endings, don’t we?     
     

Monday, November 18, 2013

DR. LUCHS UP HICKORY CREEK



During their final years our adoptive parents could have continued to live in their home in Athens, Ohio, had Father been willing to accept a daytime housekeeper who would cook the evening meal, keep the house clean and pick up and do the laundry.  He chased a series of housekeepers away and thus spent his final years in a modern but soulless assisted care facility.  Mother, on the other hand, continued to live in their house in Wonder Hills and when that was no longer possible, she asked to be moved into a small apartment.  In her last year Janey created a bedroom suite for her in Janey’s home.  

 
                                    Father is off to Hickory Creek

          When mom and dad, our adoptive parents in Children of the Manse, reached their mid-80’s, my sister Janey hired housekeepers that would come in each day to pick up and clean the house, do the grocery shopping, and prepare an evening meal.  Dad chased them all away, insisting that he and mom could take care of themselves, thank you.  What that meant in effect was that mom would take care of him, responding as she had all their lives together to his many needs, real and imagined.   For years she had said from time to time, “He’s killing me by inches,” but she complained little though it was obvious to Janey, the only one of us who lived in Athens at that time, that his demands were in fact slowly killing Mother.  But he was king, like King Lear, and the discussion ended there.    
          On Palm Sunday in l990 Dad had a bad fall and was taken to O’Bleness Hospital in Athens.  About the same time Janey discovered his abuse of prescription drugs was worse than she had thought.  His behavior was becoming ever more erratic.  In anger he had grabbed the steering wheel of a granddaughter’s car in which Janey and mom were also riding and almost drove the entire family off the Richland Avenue Bridge.   The psychologist and the psychiatrist at O’Bleness recommended he be placed in Hickory Creek, a new assisted living facility in a village called The Plains near Athens.  After a few weeks at Hickory Creek medical personnel there recommended he be sent to Harding, the Ohio State University medical center in Columbus, for a full psychiatric evaluation.  He was at Harding for over a month.  The doctors there concluded he should be placed permanently under medical supervision in an assisted care facility.  One of their observations did not surprise us.  “This patient is the most manipulative human being we have ever evaluated.” 
          Mom chose a new assisted care facility she liked down along the Ohio River near Pomeroy but once the staff there read the Harding evaluation, they declined to take him.  He hated leaving home, hated going into an institution, and we hated having to place him there.  He was particularly hard on Janey, always his favorite child, who he blamed for his commitment to Hickory Creek. He began calling her Big Mouth in his belief she had spilled the beans about his prescription drug abuse and talked authorities into sending him to Hickory Creek in the first place.  It was as if he was King Lear, driving away his favorite daughter as Lear drove away Cordelia.  At other times he told Janey, “The only reason I am going there is because I love you.”  All this was unfair because Janey, as the only one of us living in Athens at that time, had to take the initiatives we all agreed were necessary.
Dad continued to resist staying in Hickory Creek.  No wonder.  It was a sterile, charmless place that looked more like a newly built hospital clinic than anything else.  But, to borrow a line he sometimes used on us, “He brought it on himself.”   Even so it was sad that the view from dad’s room window in the Hickory Creek facility was bleak in a county with some of the most scenic landscapes of wooded hills and open fields in North America. He knew his Shakespeare and some times, like King Lear, he ranted against his fate.  He managed to run away twice.  Once he hid in a house of a couple he had known for years until the hospital staff discovered his whereabouts and brought him back.  I felt sorry for him during my first visit to Hickory Creek while on home leave from Australia.  He seemed too active, too alert, too capable, and too young to be in a place where many of the residents had lost some or most of their capacities to function in life.  It hurt to see that he could no longer enjoy the splendid west-looking view he had had of Athens County hills from his back porch at home. 
          Unhappy as he was, he continued to distinguish himself in his new environment. Even in a place that had to depress him he found the means of continuing the ministry to others that he had exercised all his adult life. He worked at organizing singing groups so that the residents would have something to do.  He read to those unable to read for themselves.  He led non-denominational religious services and a prayer group. 

Weeks after he arrived the director, an attractive woman in her late 30s, told Janey. 

“You know, Janey, our work days here were mostly boring until your father arrived.  Now the staff can’t wait to get to work to see what he has been up to.” 
          What he was up to was doing everything possible to escape Hickory Creek.  He called judges he knew, he called prominent lawyers.  He wanted them to legally force his family and Hickory Creek to release him.  He called a psychologist, a former drinking buddy, who called mom to berate her for having put him there.   
There were other developments.  The moderate hypochondria he suffered as a man in his middle years had advanced to the point that he was calling a dozen different doctors a day with one symptom or another he feared signaled his imminent demise.  These were doctors long established in Athens.  He called newly arrived doctors who had not yet been told about his campaigns to obtain prescription drugs.  Most doctors eventually instructed their nurses to take no more calls from the Reverend Fred E. Luchs.
The doctor who suffered most from his barrage of telephone calls was his personal physician. Finally, after repeated frustrations and doing violence to his medical ethics, his doctor also instructed his nurse and his family to take no more calls from Dr. Luchs that were not clearly emergencies.

So one day dad called his doctor’s residence and said:

“Good afternoon. This is Dr. Luchs.  Is my doctor there, please?”   

The doctor’s son answered the phone. 

“This is Matthew, Dr. Luchs. Is this an emergency?” 

“Well, no it’s not actually an emergency but I need to talk with your father.”

“Well, my Dad has told me not to take any more of your calls unless they are emergencies.”

  A day later dad called his doctor’s office again and, told he was not there, again called his residence.  The son again answered the phone.

Dad cupped his hand over the receiver to distort his voice and said,
“This is Dr. Maxwell, calling to speak to your father.” 

“I’m sorry, doctor, but you will have to call again.  Dad is up on the roof doing repairs and told me not to take any phone calls that are not emergencies.”

Not to be stymied, the Dr. Fred E. Luchs told a whopper.

“Look, son.  You must tell him this needs his immediate attention.  This is an EMERGENCY.

So the son ran out of the house, shouted up to his father who climbed the long distance down the extension ladder he was using and, somewhat annoyed, went to the phone. 

“Hello, Mac.  This is John.  What’s up?”

“Good afternoon, doctor, this is Doctor Luchs.” 

“Doctor Luchs?? Dr. Fred Luchs???  You are not Mac Maxwell?”

“Well….. no…. but you see…..

“You impersonated a doctor?!!”  You, a clergyman, impersonated a doctor?  
His doctor’s blood pressure was rising rapidly.    

“Well, you wouldn’t have come down off the roof to speak to me otherwise, would you?”

His doctor slammed down the phone receiver on its cradle!  He raced to his car and drove at 50 miles per hour on hilly, winding county roads to Hickory Creek.  He ran through the front door, ran down the hall and ran towards dad’s room, second on the right side, without saying hello to the nurse on duty.  He ran into Dad’s room, grabbed the wall phone next to Dad’s bed and with one mighty pull, yanked it out of the wall.

“There,” he said, spanking his hands against each other.  “That will you fix you.  No more phone calls!” 

He stopped at the nurse’s station as he left to write in dad’s chart: “Do not under any circumstances have the phone in Dr. Luchs room repaired. His telephone privileges are suspended indefinitely.” Then he scratched part of that out and wrote, “No.  They are cancelled forever!  And he is not to be permitted to use any other phone in this facility!”    
Days later Dr. Luchs, formerly the pastor of First Presbyterian in Athens and other pulpits, went from house to house ringing door bells in the Plains with his hand out begging for “a little spare change, in quarters if you have them.”  He told a sad story of his family having refused to give him any money for an occasional candy bar or even basic necessities such as shaving lotion and a razor – pointing to his four day beard.  In no time at all he managed to collect over five dollars in quarters.   He headed directly to the pay phone installed a short distance from the entrance of Hickory Creek and made his first call to yet another doctor.  He was back in business!
As he aged dad’s antics became ever more bizarre.  One morning the supreme master of the attention getting mechanism decided to lie naked on his back in bed.  He refused to put on any clothes or cover himself with a sheet.

The director of Hickory Creek called Janey.

“Janey we have a problem with your father this morning. We need your help.  He is refusing to dress.  He is lying naked in his bed.  No one on the staff will enter your dad’s room.”   So Janey drove out to The Plains and persuaded him to put on some clothing.
          Each time I visited him on trips from abroad and Washington, DC, he seemed older and after two years, he began to look like most of the other residents.  Then, in his 90th year, two months after his 89th birthday, on Memorial Day, 1993, he died.  The doctors said the damage to his lungs from tuberculosis as a young man was what killed him. 

Tuesday, October 15, 2013

THE DEATH OF MARK



When readers of Children of the Manse asked me how the four of us, adopted as children from an orphanage, had turned out I would think immediately of Mark, second in birth order, and wonder how I could ever write that story.  Well, it’s done and I have also written a sequel, “Reactions to the Death of Mark.” It seems to me that one of the saddest realities in life and the hardest to accept is the unfulfilled promise of the young.  Mark’s early death turned our lives upside down.  None of us would ever view life or our own lives in the same way again.

 
MARK’S STORY

          My brother Mark, only 15 months younger than I, was the sibling to which I was most attached.  Perhaps that was because of all we had been through together in our biological family and at the orphanage before we were adopted at ages seven and eight by the Luchs.  Perhaps it was because Mark and I were in the same unit at the orphanage while I was rarely permitted to be with Janey and Michael. And surely it was because we were so close in age.  Mark was more solidly built than I and by age 10 was taller.  Mark loved the crunching of bodies in our school ground football games at Rufus Putnam and always voted to play tackle while I voted to play touch.  My favorite sport was basketball, a game of finesse in those days.  Mark liked the rough and tumble of football.    
Some years later, after Mark persuaded me to try out for the Los Alamos High School football team ---I was already on the Los Alamos varsity basketball team --- I liked that we ended up on the line together, he, number 36 at left tackle, I, number 46 at left end.  He was a better football player than I was.  He did most of the heavy work moving bodies out of the way on our offensive line and he made most of the tackles on the left side of the line on defense.  He was elected co-captain of the team at the end of his junior year.
A few months later Dad accepted an offer from the First Congregational Church in Evanston, Illinois.  Mark, disappointed he would not be able to play another year for Los Alamos, left early for Evanston to join the football team there.  He almost immediately earned a position on the starting varsity eleven, the first senior-year transfer in the history of Evanston High School to do so.  Suburban high schools north of Chicago typically enrolled ten times as many students as did Los Alamos High School and Evanston High School played in a much tougher league than Los Alamos. The athletes were bigger and Mark, playing on the line as a guard at 175 pounds, was 50 pounds lighter than most other linemen in Evanston’s league. 
In the fall of l953 he described the Evanston football program in a letter to dad, who was still in Los Alamos.     

“We started out with two practices a day, each lasting 2 ½ hours.  The boys here are big.  The two boys I am competing against weigh 230 and 250 lbs.  They use the two platoon system.  I am playing first string defense and second string offense.  But I’m on my way to first string offense, too.”   He finished the letter with “Tell Coach Cox (his Los Alamos coach) that there would be nothing I’d like better than to play in Los Alamos this year.”
It was in Evanston that Mark took his first hard blows.  In the Oak Park game he lay on the field unconscious for a few minutes, then stood up in a daze, and lined up as if he was playing with the Oak Park team.  The Evanston coach pulled him out of the game.  But then, not five minutes later, the coach sent him back in to play.  Mark suffered two concussions while playing for Evanston.   He began to have terrific headaches which he relieved with ever larger doses of Empirin.  You could wonder why Dad did not try to stop Mark’s football career then.  Dad’s only nephew, Richard Amacher, spent weeks in a hospital recovering from a damaged kidney injured during a high school football game and barely survived to become a professor of English and concert violinist.  I guess it was because having to stop playing football would have broken Mark’s heart. 
Mark accepted a football scholarship to Ohio University in Athens, Ohio, the old home town, in l954.  He played on the freshman team and was identified as one of the four outstanding players that year.  Football, academics, and the need for money were the themes of his letters home that year. 

“We lost our game to Miami (University of Oxford, Ohio) 36 to 19 because we gave away our usual amount of fumbles and blocked punts…I have a calcium deposit on my left arm and my right shoulder is kinda banged up.”  “I am still playing first string and liking it very much….I don’t have much of a social life because of all my studies but I still like it.”    

          He suffered two more concussions that year, one on the field, the other when a roommate, trying to wake him, pulled him out of bed and banged his head on the concrete floor.  Shortly after that he had his first seizure.   Mark’s state of mind is evident in a letter he sent home in the autumn of l954.  The letter begins by announcing he has pledged Delta Tau Delta. 

”I am very happy with my choice….we have a very large pledge class.  I never saw so much talent in one group of boys in my life.”

But then the tone of his letter turns somber.

 “Dr. Hudson got those tests back from Columbus.  I don’t know too much about them except they are not normal…Dr. Hudson wants to do some more research on the case …It’s no fun to have someone tell you that your tests didn’t come out normal and that you will have to take some more tests.  Also, that you may not be able to play football….”

“I haven’t said anything about all this crazy testing, but if he doesn’t let me play football there’s going to be trouble.  The minute I don’t show up for football I will lose my scholarship…I know this doesn’t sound very much like me, but when I don’t feel any different than I did before I had this so-called seizure, it’s very hard for me to cooperate.”     

In a later letter he writes in response to the news that Mom will have to have a disc removed to relieve her back pain.   

“I am going over to the medical center Monday to find out the results of my skull x-rays.  They will probably find it cracked and send me across the river (to the state mental hospital in Athens).  Man, I never had to put up with so much nonsense in all my life.  Mother, when I get home, we can lament together.  If you see an atomic bomb explosion coming from this way in the near future, you know that the Dr. has said I cannot play football.  I would rather be in your pants than in mine.  I do not know what is going to happen to me.” 

          Ohio University took the view that the seizure was the result of the concussions he had suffered in Evanston and withdrew his scholarship.  In looking through records and interviewing biological family members, one burning question on my mind was, did epilepsy exist in our biological family?  I found no evidence that it did.  We know much more about concussions and seizures as a result of football injuries than we did in the 1950s.   Mark’s seizure was almost surely the result of repeated concussions.

          Football was Mark’s life.  His dream was to play football through college and eventually become a football coach.  After the seizure he was put on anti-seizure medicine and told not to drink alcohol or coffee or stay up late at night.  He felt lost and aimless.  He began a difficult period of reassessment and adjustment.

          Next to football Mark’s first love was music.  He played the piano, read music easily, and had a fine voice which he had used over the years in church choirs and school choruses. He sang the only vocal solo, Del Riego’s “Homing,” at his junior high school promotion exercises. 

          After graduating from Evanston High School in the summer of 1954 Mark attended the University of Michigan sponsored music camp at Interlochen.  He was in four choirs and a madrigal group, and earned eight hours of credit taking voice lessons and enrolling in a University of Michigan course in music theory.  “We are doing the Messiah, Bach’s B Minor Mass, the Brahms Requiem, and some other stuff,” he wrote. Of the madrigal group he wrote, “We have learned 33 pieces of music in the last two weeks.”  He concluded one letter with, “We are all having a great time and working very hard.” 

          One letter discussed a visit by his current Evanston girlfriend, Liz Chapman, and he issued invitations to all members of the family to visit and hear the Interlochen groups sing.  “We are as good as any professionals,” he writes.  Also in the camp that summer was Bob Kingsbury, a charming southerner and favorite of the Evanston high students who participated in Bob’s choral and orchestral programs. Mark writes, “Tell Mike to work on his voice and violin because Kingsbury wants to see him in orchestra and Master singers next year.” 

          But even during the intense musical summer at Interlochen his mind was very much on the upcoming football season at Ohio University. “I should weigh 180 in the next couple of days but I can’t gain the weight I would like because they don’t feed me enough…I am keeping up my exercises and am on a good training program. I’m in great shape.” 

          After Mark had to give up football he enrolled at Northwestern University where he earned a bachelor’s degree in music with a specialty in conducting.  He then spent a year teaching and leading the high school choruses of St. Clairsville, Ohio.  His senior chorus competed at the state level and received an “excellent” rating.  The school was deeply disappointed when he announced he was resigning to return for a graduate degree and offered him a paid assistant football coaching job to add to his music teaching as an additional inducement.  But the following year he enrolled in the graduate music program of the University of Michigan, this time majoring in music theory and composition. He chose Michigan because he wanted to study under the then composer-in-residence, Paul Cooper.  During these years he had no more seizures. 

          Some months after enrolling at Michigan his eye was caught by a blond student accompanist, a young woman from Iowa.  He asked her if she would play a choral composition he had just written. When he returned home that evening he told Mom, “I have just seen the woman I am going to marry.  Her name is Joan.” 

          He asked Joan out.  She turned him down.  Weeks later he asked her out again.  Again she turned him down.  He tried a third time with the same result.  Then, a month or so later, he said to Mother. 

“I am going to give her one more chance.  If she turns me down again, I will give up.”

          He asked her out a fourth time.  She accepted, they began dating, and were soon engaged to marry.  Dad’s diary contains a quote from the period when Mark was building an apartment in the basement of the family home in Ann Arbor.

“I marvel at his aptness in handling tools and knowledge of building.  What a marvelous girl he is marrying!” 

Another diary entry recorded on September 7, l960.  “Mark marries Friday – a most lovely and unusual girl.” 

          Dad officiated at the marriage of Mark and Joan in the first Congregational Church in Ann Arbor and they moved into the basement apartment Mark had built.   Both continued their academic programs to earn master’s degrees. 

          After the incident at Ohio University Mark had no seizures for five years.  But not because he was following doctors’ orders.  He drank coffee regularly, sometimes drank alcohol, and often stayed up late to study, all unwise behaviors.  He continued to have severe headaches for which he took large doses of Empirin.  Then, because he had had no seizures, he stopped taking his prescribed medication, Dilanthan.  Weeks later, he had a seizure during which he fell on the concrete basement apartment floor and broke his arm. 

          Late in the morning of Tuesday, March 27, l962, Mark told Mom he was tired and wanted to sleep for an hour before conducting a rehearsal of a choral group at the university.  He complained of a splitting headache.  He asked if she had something to help him sleep.  She suggested he look for something in the medicine cabinet on the second floor in the master bedroom.    

          When Mark failed to show up to conduct a rehearsal of a choral group at the school of music in which Joan was the accompanist, she returned to the house at once because missing a rehearsal was so unlike Mark.  It was early afternoon.  She found the door to the sitting room locked.  She knocked.  There was no answer. 

          She called to him, “Mark, Mark, are you there?”  No answer.  She became frantic.  She shouted Mark, Mark!  Still no answer.  Desperate, she ran outside the house, broke the half window of the basement room and crawled through the window.  There Mark was, lying on his side turned away from her on a couch as if asleep.  She shook him, “Mark!, Mark!  She pulled him toward her and then administered CPR.  He did not respond.  He did not move.  In horror Joan realized that Mark was dead. 

          Mother found Joanie on the front lawn crying hysterically.  She managed to say to Mother, “Mark is dead!  Mark is dead!” 

            Mark died between noon and 2:00 P.M. on Tuesday, March 27, l962.  On the turntable was the Passacaglia of Anton Webern, an Austrian composer in which he had developed a passionate interest.    

REACTIONS TO THE DEATH OF MARK



I recently met a college roommate of my wife.  We spent a delightful two days with her and her husband in Ashland, Oregon, the city of Shakespeare.  They adopted two children, one a boy of eight, the age I was when adopted with my three siblings from a county children’s home in southern Ohio.  Their son died at age 29 of lymphoma, leaving a wife and child. When my wife asked how her college friend was coping with his death ten years later, she said, “It seems like yesterday and it seems like forever.”  If anyone still doubts the depth of love in adoptive relationships, I share my adoptive family’s reaction to the death of my brother Mark in this sequel to Children of the Manse. 

                    FATHER’S REACTION TO MARK’S DEATH

I have to admit I resented Dad’s parading his own grief, which no doubt was genuine, while Mom and I and Janey and Michael mourned Mark in silence.  Even when faced with death Dad could not resist working to be the center of everyone’s attention.  He rose to Shakespearean heights in the eternal curse he pronounced on Tuesday, the week day of Mark’s death.  He planned Mark’s funeral without consulting Mark’s brothers and sister.  At that point I wasn’t sure I wanted Mark to be cremated. It seemed too sudden, too much of a shock to reduce him to a box of ashes so quickly.  It was done before we could ask for a few days delay.  
Two weeks after Mark’s death Dad was well into a sermon when his mind went blank.  He stood silently in the pulpit while the congregation waited, wondering.  After a few minutes he said, “I don’t feel well.  Let’s sing the final hymn.”  Mother noticed that the next day he walked with a stiff arm and dragged his right leg.  He had had his first stroke.      

                                        MOTHER’S REACTION

Mother grieved in silence as we did, trying to console Mark’s wife, Joan, and being helpful to all.   Shortly after the funeral she and Dad went with another couple to a restaurant near the University of Michigan campus.  Students near Mark’s age at the other tables were laughing and having a good time as students normally do.  Atypically and irrationally, Mother said out of their hearing, “How can you be so insensitive, so inconsiderate?  Don’t you know that my son Mark has just died?”  A few weeks later Joan found Mom at her desk staring blankly into space.   She asked, “Where am I?  What am I doing here?”    She was suffering transient global amnesia, a reaction to the shock of Mark’s death.             



                                        JANEY’S REACTION

“After Gus (her husband) walked into our bedroom and told me Mark was dead, I went into denial.  All the way back on the flight from Missouri to Ann Arbor I looked out at the clouds, crying and asking, “Mark, where are you?  Where are you?” I was not yet able to accept that what Gus had told me was true.  When the plane landed at Willow Run I saw the four of you waiting together, Mom, Dad, Michael, and you, and then I knew it was true.  Mark was dead.” 
“After Mark died I cried every night for over a year.  It was physical.  I felt my heart had been ripped out.  I dreamed of Mark every night. I could not let him go.  I hated God.  Then God disappeared.  I could no longer believe in the God I had grown up with.  I feared others close to me would die.  When would the next blow come?” I asked.  I became determined never to love anyone so much again.  Gus tired of my crying.   Mark’s death put pressure on our marriage and contributed to the divorce two years later.”     
I remarried eventually, this time a man I was not in love with but who was economically secure.  He was a brilliant young lawyer, the son of a federal judge.  I made it clear I did not love him before we married but he wanted to marry me anyway.   
A few years after Mark’s death Julie (her daughter) and I moved into the basement apartment where Joanie and Mark had lived.  Julie was three years old.  One morning she told me a man had come into the apartment the night before.  He had, she said, sat there, pointing to a cedar chest near the entrance to the apartment.  I asked her to describe the man.  She described Mark.   She had never seen Mark alive.   

                                        MICHAEL’S REACTION
Michael was in army intelligence, stationed in Burlington, Vermont, when Mark died.    
“When Mother called me to say that Mark had died I went immediately into shock.  I was overwhelmed.  My reaction was raw and physical.  I did not sleep at all that first night.  I was simply unable to digest what Mother had told me, that Mark was dead.”  
“I immediately applied for and was granted 10 days of emergency leave.  I remember the day I flew out of Burlington was the first warm day of spring. The sun was bright, which annoyed me.  I more or less got through the next few days by rote.  I don’t remember much from that period.”
When Michael returned to Burlington he coped with his grief through extreme physical activity.
“I did calisthenics at every opportunity during the day and long runs of up to 10 miles at night.  I had developed a bad smoking habit and became determined to quit.  I focused intently on my work, which involved a lot of driving alone around upper New England.”.
“I began taking risks and I did not hold back.   I began looking for a motorcycle, the biggest and most powerful I could afford.  I had never been on a motorcycle before.  When I finally found the right one, the man who sold it to me said, “I don’t know that I want to be responsible for selling you this motorcycle.”  I rode thousands of miles at high speeds over many hours without a helmet, eating up the time to forget. 
“I met and spent time with the Tuppen family that had recently come down from Canada.  The father, Jack, liked to walk through the house reciting Shakespeare.  Through the Tuppens I met Ivonne, a British nurse, and began dating her.  We rode my motorcycle together.  She had also lost a brother, in her case to a motorcycle accident, and that gave us an additional bond.  It was crazy. The worst was there was nothing I could do to bring Mark back.  I could do nothing to change the fact of Mark’s death. I felt utterly helpless.” 
The undiagnosed panic attacks Michael had suffered from childhood became more severe.  When they came Ivonne, a nurse, rushed him off to the emergency unit in the local hospital, thinking he was suffering a heart attack.  Michael rarely drank alcohol before Mark’s death.  He did not frequent bars with army buddies.  But he found that alcohol eased the panic attacks and his grief and he began drinking.   

                             
                                        LEWIS’ REACTION

Mother’s phone call announcing Mark’s death was so shocking I remember well the details today.  I will never forget her words:

"I hate to do this to you, Lewis, but your brother Mark is dead."

From deep within me I cried out loud, “No!  No, Mother!” My mind whirled out of control.  I was disoriented. I could hardly speak.

          After Mother’s call I began the six hour drive around Chicago to Gary, Indiana and on through Kalamazoo and Battle Creek to Ann Arbor.  It was a cold clear night. I drove, often in tears, feeling that something had been physically torn right out of my heart.  What I remember most during that long ride besides crying wildly was looking up at the starry sky and shouting, “Mark!  Mark!  Where are you?!!!  Where are you?!!! Where have you gone?”   
          I thought of nothing but Mark on that long drive.  I reviewed many scenes in our lives together as I drove through the moonlit night.  The challenges we had overcome. I found I could bring his presence back in my mind but I could not, as I wanted, fix the images of him to gaze upon.   I tried to remember every detail of the time I had last seen him so I could carry that memory within me forever.  He was sitting in the kitchen of the apartment he had built.  He was sitting with his back to the wall in a chair at the kitchen table.  He was drinking coffee.  He wore a red Pendleton plaid shirt unbuttoned over a white T-shirt.  
          The memories flow backed as I drove on and other images flashed before me.  Of Mark in our Los Alamos green and gold high school football uniforms.  Of his wedding pictures with Joan.  
The other memory that does not fade at all after so many years is returning to our home in Ann Arbor after a long walk alone.  I could hear his wife in the basement, mourning.  She was moaning and only stopped to cry, "Oh, Mark, Oh, Mark, Oh, Mark."  Her words shattered me.  It was the saddest voice I had ever heard.  I will never forget the crying of his young widow.  Later Joan said to Janey, “I so wanted to have his child! Oh, why couldn’t I have had his child!”                    
          For months I shut out the world. I seemed to be abandoned again as I was as a five-year-old abandoned to an orphanage.  But this time my abandoner was God.  I was angry with God.  I felt God had betrayed me.    
The day after the funeral the March weather in Ann Arbor warmed a little and spring began to appear.  Easter was still a week or so away.   I heard birds, including some early arriving migrants singing their morning chorus.  They were the signs of continuing life that I heard but rejected.  I was with my brother in death. I could not understand how everything went on as usual, just as if nothing had happened.  Self-indulgently I wanted to cry out, “Don’t you realize that everything has changed, that nothing can be the same again?  Mark is dead!”   Why didn’t the world end?  How could they smile?  Who is next?  Who else will I lose?  When?  Tomorrow?  Next month?  Next year? 
Death was not a matter of being adopted by new parents or of surviving serious illnesses. I could not do anything about death.  Death was the universe’s big NO to whatever hopes and dreams I had. No cry of our hearts, no moaning of our souls, no amount of effort or willing or praying or pleading can change the fact of death.    
At first I tried to believe that I could continue with my cheaply purchased faith in God.  But when I admitted that that faith would no longer do, I faced years of painful soul-searching reflection.  I went into my inner desert alone and for a long time to re-think my life before the wound began to heal and any relationship to God began to be possible, and when years later it was, it was not at all as before.  I no longer was an innocent believing I had any right to be protected from the worst in life.