Brian's Legacy: As Shared by His Father Siegfried Othmer

Authors

Introduction

Life was beautiful when I was young, until I underwent an evil change in personality and beliefs. The way I perceived the world, and the way I acted had dramatically changed. This whole change did not go unrecognized by me, and no one could understand it better than I. This change affected my life in ways that I hated. I was put to shame so intensely that I considered death as appropriate self-punishment. Instead I submitted myself to isolation as self-punishment. My bad behavior must either be contained by my own activity, or terminated by my death. Life is better than death, I decided, so at whatever expense, LIVE.

[Brian’s journal, September 23, 1989]

It was a watershed event in our lives when my wife, Sue, and I were summoned by school officials from Roscomare Road School to hear a litany of complaints about the behavior of our son Brian. A number of people were in the room, and each had issues to report. Brian had been fighting with kids during recess, and a girl’s face had been scratched.

If you agree to get some professional help, we’re willing to give Brian more time, the principal said. For our part, we will assign a special teacher to him. It was clear that we were considered to be completely at fault. The counselor would provide Brian with the loving attention that he was obviously not getting at home. We left the meeting with a torrent of emotions: confusion, guilt, shame—and a determination to put things right.

How had we missed the warning signals? Brian’s behavior problems were not news to us, but the environment at home was very different from that at school. At home, Brian had an outlet. He could walk the trails and climb the hills around our house. At school, he was trapped, and acted out against the kids around him. We had not been seeing the whole picture. For months, his behavioral issues at home had been getting worse, but the litany of offenses laid at our doorstep was of quite another order.

It soon became clear that the counselor’s intervention was having no impact, so we were summoned to a second meeting.

Brian just spat out obscenities at me! the counselor exclaimed defensively.

Your son is clearly severely emotionally disturbed.

Brian could no longer remain at the school. We were asked to make other arrangements.

We left the meeting feeling absolutely depleted. Brian reacted with typical insolence and disconnection, which, in our opinion, disguised a world of hurt and confusion. But who could know how he was really feeling? Questions mounted. What do we do now? How do we explain this to Brian? What school will take him? How can we correct behavioral problems we don’t understand?

Like most people in our culture, we firmly believed that a child’s behavior was the parents’ responsibility. It was our duty to teach Brian to behave. Not only was this not working, but matters were going downhill. Had we failed our son?

The year was 1977. Brian was eight years old. Professional help for cases like his was rare. Fortunately, our pediatrician understood something we did not: He suspected a neurological involvement, but he was not yet prepared to share that with us until he had more to go on.

We need to have a look at Brian’s EEG (electroencephalogram), he said, and ordered a clinical EEG.

Sue took Brian to the recommended EEG lab, where Brian interrupted the script by locking himself in the men’s room. He objected to what was about to be done with him. He was scared.

Dr. Marshall’s suspicions were confirmed, and he called to discuss the results.

I’m sorry to inform you that Brian has temporal lobe epilepsy, he said. This came as quite a blow to Sue, as she had read the book Violence and the Brain, by Vernon Mark and Frank Ervin (Harper and Row, 1970), in connection with her academic work. It makes the connection between violent behavior and temporal lobe epilepsy.

And yet we grasped at this diagnosis as if reaching for a life preserver. Brian did so as well. He knew that during these episodes he was not in control of his own behavior, and was as troubled as we were about his condition.

Over the next several years we struggled mightily to understand what was going on with Brian and how we could help. It was not just a seizure disorder. His brain function was impacted more broadly. Though we sometimes felt our struggles were unique, in truth, we were not alone. We were seeing the usual parenting issues, only in more extreme form. On the other hand, Brian did face some unique challenges that were quite daunting in their complexity, tenacity, and intractability.

We were determined to chart a path forward for our family. The turning point came when we shifted our understanding from the behavioral model to the neurological model. In the behavioral model, we are in the world of good and bad. This is where we were when Brian was expelled, only Brian was so down on himself that the good/bad divide in his mind became good versus evil. In the neurological model, we are in the realm of the functional versus the dysfunctional. These two perspectives needed to be merged somehow for Brian to get on with life.

Brian’s decision to live, which was quite real, came through the realization that he was more than the sum of his bad behaviors. He was not the person other people saw. He hated these external manifestations of his brain dysfunctions, and rejected them. I am not my personality, he declared. The neurological life preserver allowed him to say, to himself and to others, It’s not really me. It’s my brain. His core self was sound and whole and good. It deserved to live on.

The journey ahead had us tip-toeing through a minefield. Brian lived at the edge of explosive violence and of neurological breakdown. He was a risk to himself and to others. When we left Roscomare Road School for the last time, we began traversing uncharted terrain.

Despite myriad brain dysfunctions that could even be life-threatening, Brian lived another fourteen years. After achieving the independent life that we hardly thought possible, Brian ultimately succumbed to a nocturnal seizure during his last year of college. His successful battle with so much misfortune was ultimately championed not just by us, but by him. We had no idea of the extent of his determination until after his death.

Among a mere handful of possessions Brian left us in his room at Cal Poly San Luis Obispo, the most precious was his journal. Clearly written for his own eyes, the journal chronicles his interior journey, the ongoing struggles against his brain dysfunctions. We knew that it was important to him that his life experience be shared. His hope was to educate others about his condition, and through his journal he has done just that.

As I complete this book, I am struck by Salman Rushdie’s reflections on his own journal from the days of his fatwa, when he was living under the official threat of assassination. Rushdie writes, Sometimes I was very heartened by what I found, and sometimes I thought the person writing the journal was clearly in a very bad state of mind, very depressed or very angry or just kind of unbalanced in some way.

The same could be said about Brian’s journal. Only in this case it was a child, adolescent, and young adult who had to come to terms with an unbalanced and unstable brain. Brian’s journal is very raw. The normal fears and anxieties of childhood and the highs and lows of adolescence are exaggerated, until in early adulthood a more stable personality is very purposefully crafted.

It is a rare gift to gain insight into the life of a growing child, especially one who faces extreme challenges on his own because the world around him just does not understand. Brian grapples with fundamental questions, with issues of good versus evil, self versus non-self, the boundary between control and acceptance, the anticipation of death, and the constraints on our free will. Finally, Brian’s journal is about the growth of the capacity for relationship, about the assertion of independence, about setting life goals, and about reaching clarity on our essential nature.

CHAPTER 1

The Trouble with Brian

1968–1985

My life goal as I saw at an early age was to learn and understand how nature works, and to teach that to others. By nature I mean all sciences underlying how it works. I, of course, do not expect to fully understand nature, nor do I claim to be right. I am always open to others’ ideas, and there is always more to learn.

[July 6, 1989]

A DIFFICULT BIRTH

I was born in Ithaca, New York in October 1968. I lived there for two years.

[Fall 1986]

In 1968, it was still the dark ages in terms of childbirth. Sue was alone in a small, unadorned labor room in Tompkins County Hospital. I was allowed an occasional, brief visit, but otherwise Sue was left alone with her labor pains. The instructions we had been given were that all would be taken care of. Just come to the hospital…. We had of course seen the delivery films. At least I had been exposed to them---I did not sit through them all, not having mastered my own squeamishness. But these films dealt with the facts, and somehow did not convey all of the reality of childbirth.

It was October 7, near the peak of fall colors in Ithaca, New York. In past years, we would have taken long hikes on Connecticut Hill at about this time, to enjoy the explosion of color before the quagmire of ambivalent winter descended upon Cayuga Lake. We were both in graduate school at Cornell, but we were finished with all classroom work, so our schedules were somewhat under our control. Having children was not yet on those schedules.

We had no idea that Sue was pregnant nine months earlier when she appeared to have a severe case of the flu, and could keep down no food, and ultimately no water either. After about four days, Sue went to the hospital, and the pregnancy was diagnosed.

The doctor from the Cornell student health services told her, You probably knew it all the time. Sue was furious. It was only the first of many such gratuitous indignities. When I first visited Sue in the hospital after the diagnosis, and was turning to leave, she said: You’re leaving us! This had the intended effect. It brought home to me that Sue’s priorities had suddenly changed. Our self-absorbed, cerebral existence was thudding to earth, tethered by biological necessity.

What Sue was going through was no mere morning sickness. This was nausea morning, noon, and night. Tigan® became part of her regular diet, so that she could keep down her food for the duration of the pregnancy. This medication is intended to deal with nausea and vomiting. Its use during pregnancy has declined over the years as medical options proliferated, but it was a lifesaver for us.

When Sue was finally wheeled into the delivery room, the obstetrician was busy with another delivery on the other operating table. When Sue was about to give birth, he yelled over to her to wait! That was like yelling at a Pacific storm. Just how does one wait, when a baby is ready be born? This is not a time when a woman feels in command of what is happening.

When it was finally Brian’s turn to be conveyed into this world, he was frightfully blue. However, the obstetrician remained of good cheer, and after a few minutes, Brian was pink like he was supposed to be. Sue was alarmed, but pacified by the soothing voice of the obstetrician. Still, Sue was concerned enough to mention Brian’s blue period when we finally had a chance to talk.

In retrospect, we were not very original with our choice of names. Brian seemed refreshingly different at the time, but the same thought must have been going through the minds of an entire generation of parents, because in his age cohort there were many Brians. We picked Eugene as the middle name. It held no intrinsic attraction for us, but we did it in resonance with the maverick presidential campaign of Eugene McCarthy. Sue’s major advisor, Professor Frank Rosenblatt, played a role in that campaign. If Brian had some of McCarthy’s Irish stubbornness, independence of mind, and sheer pluck, that would not be all bad. Sue was a FitzGerald, after all. We were probably too insensitive to the fact that we had burdened Brian with the initials B.E.O., or B.O. for short. Yikes.

Fatherhood

I look at my father with an angry expression, and he looks at me with an angry expression. We hardly ever communicate.

[August 11, 1990]

Fatherhood did not come naturally to me. I was essentially an only child. My only brother is 16 years younger, and I was off to college before he was a year old. I was willing to be patient, however, until Brian grew up to be a person who could be engaged with meaningfully. The notion that this was an individual with unique features and quirks and personality from day one, and not merely a generic baby, was something I had to learn. I did not reach this point with a good model of fatherhood.

I did not meet my own father until I was 11 years old. That was due to very unusual circumstances indeed. I was born in Berlin, Germany in 1940, during the first year of World War II. My father was encouraged to leave Germany by the American Embassy shortly after his wedding because the clouds of war were gathering, and American citizens could no longer be assured protection. After the war, repatriation to the US was problematic. My mother was still a German citizen, and as such would hardly be welcome in the US in the immediate post-war environment. It took years for arrangements to be made, and even at the last minute my mother had to stay behind as I flew by myself to meet my father in New York.

My father was not there to meet me when I arrived at Idlewild Airport (what is now known as JFK International). My flight had been delayed for so long that he had returned to the city, awaiting notice from the airline that was not forthcoming. I wiled away the time looking at a tele-handwriting machine when I was suddenly embraced from behind. I hardly recognized the man from his pictures. My first thought was of being kidnapped. But he knew German pretty well. Maybe he was my father, after all. It was Christmas Eve, 1951. We stayed at the YMCA downtown, and were driven down to Richmond, VA the next day in a funny-looking Studebaker that looked like it was going the wrong way.

Given that I grew up without my father, each of us undoubtedly held an idealized view of the other. Apparently I disappointed him, once the actualized reality stood before him. The problem is that by the time one is 11 years old, the mold is pretty well cast. My father’s belated attempts to remake the mold only caused conflict. Child-raising is a two-way process, one in which the child effectively teaches the parents—by trial and error—how he is most successfully parented. I had not had the opportunity to raise my father, so to speak, with the result that he proceeded on the basis of abstract principle, derived no doubt from his own harsh upbringing. The absence of my mother in the early months likely contributed to things getting off on the wrong track.

My mother’s parenting style had been totally different. It was much more gentle and accommodating. Perhaps this had something to do with the fact that we had been through thick and thin together during the war years and afterwards. The bond of dependency had forged a close relationship.

My father and I had only a few years together before I left for college, and he died of pancreatic cancer soon thereafter. Those few years had been difficult, and there was no opportunity later for the relationship to evolve. In sum, then, I did not have a good model of fatherhood to go on.

Early Signs

At age two I had a vision of my goal in life. That vision, however, left me.

[November 23, 1989]

Brian started out auspiciously enough to meet any nervous new parents’ expectations. He had come to us years ahead of schedule, but now that we had him, we also couldn’t wait for him to walk and talk. Whereas his physical coordination was excellent, he was slow to talk. A dear friend who was in child development observed weightily that Brian was a head-banger, making us nervous about what the implications of that might be. Beyond that, Brian seemed to function normally as far as we—his biased parents—could judge.

However, one time as I was checking on Brian after we’d put him to bed, he seemed to be looking at me without seeing me. This trance-like state sent chills down my spine. Sue and I talked about what I had seen. Sue’s field of graduate study was neurobiology, so I was hoping for a professional opinion. Sue dismissed the significance of what I had witnessed: odd things can happen during sleep onset, infant sleep is not yet well-organized, etc. We didn’t see anything like that again for several years, so the memory faded. Only much later, when Brian’s temporal lobe epilepsy was diagnosed, did we recall this incident as perhaps a related phenomenon.

Another factor was involved, no doubt, in Sue’s dismissal of what I had seen. There is a lot of built-in resistance to confronting the question of whether something may be wrong with your child. The issue is on your mind all along, starting with counting all fingers and toes on the first day. No one is prepared for anything but normalcy until the issues force themselves upon you. Disabilities and dysfunctions are simply not issues that can be discussed like others, such as whether Turkey should be allowed to join the European Union.

Meanwhile, we were thrilled at Brian’s progress. One of his first words was moon, and we marveled at his powers of abstraction when he correctly identified the sliver of new moon also as moon. This was the time of the moon landings, July of 1969, when NASA published its first pictures of Earthrise over the moon’s horizon taken by Neil Armstrong, Edwin Buzz Aldrin, and Michael Collins. On seeing the pictures, Brian declared the Earth, too, was moon, and it was pointless to insist that this picture was in fact taken from the moon. He was only 9 months old, for heaven’s sake!

Brian practically lived in the Gerry baby carrier, which allowed us to go hiking and cross country skiing in the Ithaca area. We even undertook a trip to the Alps in the fall, when he was 11 months old. On one eventful skiing trip, I fell forward on the skis into four feet of snow. Brian was catapulted out of the Gerry and planted head-first into the snow, with only his legs sticking out. At this point, I was looking up at my skis, which were still on top of the snow. Righting oneself from that position is not quickly done. Meanwhile, Brian had a bit of a scare about whether he would ever have a chance to breathe again. I plucked him out of the snow as quickly as I could, and he was fine.

LOS ANGELES

In 1970, my father got an offer for a job in Los Angeles, so my family moved there. At the age of two I was very interested in the woods behind my house, but not going more than a mile away by myself. I remember liking to climb tall trees at about the age of four.

[Fall 1986]

In the fall of 1970 we moved to Los Angeles. I had just received my Ph.D. in experimental physics. There was a recession in aerospace at the time, and jobs for new physics Ph.D.s were scarce. Horror stories were circulating about newly minted physics Ph.D.s applying for high school teaching jobs in small towns in Texas.

Sue was still working on her Ph.D. at Cornell’s Langmuir Laboratory, but I feared that job openings were only going to get scarcer with the passage of time. I started working at the Northrop Research and Technology Center under Dr. Orlie Curtis, the physicist for whom I had previously worked at the Oak Ridge National Laboratory during my undergraduate years at Virginia Polytechnic Institute. When I arrived at my new job, my assigned chair was still warm from the guy who had been laid off the previous Friday.

It was easy to fall in love with Los Angeles. First of all, coming from cloudy Ithaca it was a great event to wake up to