The Story of Brian Brian's Diary with an Introduction and Commentary by Siegfried Othmer

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 alone with her pain. 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 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 9, 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 this explosion of color before the quagmire of winter descends upon Cayuga Lake. We were both in graduate school, but we were finished with all classroom work, so our schedules were somewhat under our control. Having children was really not yet on the schedule at all.
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. After a bout of four days of this, 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 bombinette had the intended effect. It brought home to me that Sue's priorities had suddenly changed. Our self-absorbed, cerebral existence was suddenly 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.

When Sue was finally wheeled into the delivery room, the obstetrician was busy with another birth on the other operating table. And when she was about to give birth, he yelled over to her to wait! That's about like yelling at a Pacific storm. Just how does one wait, when a baby wants to be born? This is not a time when a woman feels very much in conscious command of what is happening. When it was Brian's turn to be born, he was frightfully blue. The obstetrician remained of good cheer, however. After a few minutes, Brian was pink like he was supposed to be.

In retrospect, we were not very original with 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 range there turned up a lot of 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, was playing a major 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 BEO, or BO for short.

Fatherhood did not come naturally to me. I was essentially an only child. My only brother was 16 years younger, and I was off to college before he was one year old. I was willing to be patient, however, until this child grew up to be a person that could be dealt with meaningfully. 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. Also, I did not reach this point with a good model of fatherhood. I had not met my own father until I was eleven years old. By that time, the mold was pretty well cast, and his attempts to remake the mold only caused crisis. I had not had the opportunity to raise my father, so he was proceeding on the basis of ABSTRACT PRINCIPLE, a gift given almost uniquely to men, and in particular abundance to Prussian ones.
Brian started out auspiciously enough to meet any nervous new parents' expectations. He had come to us years early, but now he couldn't walk soon enough or talk soon enough. A dear friend who was in child development observed weightily that he was a "head-banger", making us nervous about what the implications of that might be. But otherwise, he was as normal as could be. Only one time, as I was checking on Brian after having put him to bed, he seemed to be looking at me without seeing me. This trance-like state sent chills down my spine. We 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. We never saw anything like that again for several years, so the memory faded. Only much later, when Brian's temporal lobe epilepsy was diagnosed, did we unearth this memory 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. But you are really not prepared for anything but normalcy until the issue forces itself upon you. Disabilities and dysfunctions are simply not issues that can be discussed like others, such as whether China should have favored-nation trade status. At least not by mothers. Prussian fathers, maybe.

Meanwhile, we were thrilled at Brian's progress. Practically his first word 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 the pictures, the earth too, was declared 'moon', and it was pointless to insist that this picture was in fact taken from the moon. Brian was only nine months old, for heaven's sake!

Brian practically lived in the Gerry carrier, which allowed us to go hiking and cross country skiing in the Ithaca area, and even to undertake a trip to the Alps in the fall, when he was eleven months old. In 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 yourself 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.
In the fall of 1970 we moved to Los Angeles. There was a recession in aerospace at the time, and jobs for new physics Ph.D.s were scarce. Horror stories were circulating about new physics Ph.D.s applying for high-school teaching jobs.

Sue was still working on her Ph.D. at the 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 the same physicist with whom I had previously worked at the Oak Ridge National Laboratory, during my undergraduate years at Virginia Polytechnic Institute. My 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 blue skies nearly every day. Initially, it was "Brian, come look at the blue sky". Not long thereafter, however, it became, "Brian, come take a look at this pretty cloud." We seemed to be the only users of the motel pool, which we assumed had been heated to 70 degrees. The exotic plants; the proximity of the desert, of the mountains, and of the ocean-all these things quickly dispelled any reservation we had about coming here from the state of New York.

We settled into a beautiful house in the Santa Monica Mountains, in Sherman Oaks. Actually, the house took some getting used to. First of all, the roof leaked. We had not specifically asked about that, carelessly assuming that a roof is a roof is a roof. Not in Southern California. Also you could hear every raindrop hit the roof before it came into the house. There was no ceiling insulation. That was not all. Every window rattled when an airplane or helicopter passed overhead. Our house was in the flight path from Van Nuys airport, the busiest general aviation airport in the country. The louvered windows leaked heat so badly that one end of the house could be unaware that there was a quarter million BTU heater working away at the other end. We began to appreciate that the Southern California lifestyle is partly a life of the mind, i.e., a fantasy. You ignore the rain and the cold, and you can sound persuasive telling others that it doesn't rain or get cold here. If truth be told, we have winters here where we get more rain in three months than Portland gets all year. And the limp, discolored leaves of the agave tell you that it can freeze here.

We learned that the brush around there routinely burns, putting houses at hazard, and that the earth swells and heaves with the heavy rains, gradually leading to cracked pools, and occasionally sending them down the hillsides. We had not been in the house three months yet when the Sylmar earthquake occurred. We had learned enough about the local hazards that I instinctively ran to Brian's room and took him outside. If the rain-saturated hillside above our house were to give way, his room was at greatest risk.

The experience of an earthquake reminds one of how basic our assumption is about terra firma. It goes a lot deeper than our conscious awareness. The earth rolls and jolts, the house makes an infernal racket, and afterwards it looks like it threw up on you. It is difficult not to take this personally. In matters such as this our millimeter veneer of neocortex does not stand a chance against the limbic system, which feels violated. It would be a long time before this house, this glorified tent, would be considered home. On the other hand, I began to see a certain utility in building tents in earthquake country, much like the Japanese have done for a long time. It was masonry walls and chimneys that had a habit of collapsing in earthquakes. Our tent-like walls simply yielded to all the turmoil.

It took trips back East for both Sue and me to realize how much adjustment had in fact taken place in our acceptance of a transient quality to our existence. Sue had gone back to Ithaca to attend the funeral of her major advisor, Frank Rosenblatt, who had died in a sailing accident in Chesapeake Bay. And I had gone back to Richmond with Brian to see his grandmother. The red brick houses of Richmond, and the Civil War statues on Monument Avenue, have a sense of permanence about them that clearly informs the expectations of local residents. Los Angeles, by contrast, does not live by its history. It does not so much exist as a definable entity as that it is always becoming. So few of the people we met on a daily basis were rooted here that all seemed a mere coalescence of varied agendas. The felt impermanence of our house only buttressed this perception of transience in our life.

For Brian, the location was ideal in that it gave him the physical freedom he had previously enjoyed in Ithaca. The house was surrounded by chaparral, in which he could play, and the pool turned him into an aquatic animal. He seemed to take advantage of this freedom rather more than we expected. One morning he was gone before breakfast. We found him in his pajamas at the top of the steep hill behind our house. On another occasion, he was nowhere to be found. We searched the hillside and the neighborhood. Some hours later, a woman came to our door with Brian in tow. He was dirty and disheveled. The woman verified that Brian in fact belonged to this household. She asked a lot of questions. She was obviously reluctant to leave him with such neglectful parents.

On another occasion, Brian appeared at our backdoor with a neighbor from the top of the hill. On this occasion, we had not even been aware that he was missing. Brian had managed to reach the other house after playing in the chaparral, and he appeared to have lost his way. He wasn't talking much yet, so the concerned neighbor decided to see Brian back to his house. Brian couldn't tell him the street address, so there was no choice but to follow Brian back through the brush. This was an easy matter for a short two-year old, but a bit of a chore for a tall man, who ended up crawling on his hands and knees to get through the thicket.
On yet another occasion, Brian was again lost, and I set out in search of him. While I was still combing the hills, I heard a fire engine passing by in full cry. It crossed my mind that Brian may have had something to do with this, but I suppressed the thought. By the time I got back home, there was nothing left but to tell me the tale. Brian had climbed up on a local cliff, where he had never gone before. He was quite in charge of himself, and not afraid. A neighbor saw him on the cliff, however, and told him to stay put with great urgency. He called the fire department, and a fireman was lowered down by rope to rescue him. Brian assured us that he was never in any danger-he did not consider himself a risk-taker. He enjoyed the whole thing so much we were afraid he would try the same thing again. He spared us that.

During this time, it was comforting to know that we were not the only ones to whom things like this happened. The Los Angeles Times reported the story in which the police picked up a two-year-old who was window-shopping on Ventura Boulevard in Woodland Hills in the middle of the night. They took him home in their police cruiser, and left the child in the car while they identified the parents, and then berated them for being so neglectful of their child. While they were still talking to the parents, a second police cruiser drove up to the house, with the same child in it. He had, in the interim, scrambled out of the first police car and made his way back to Ventura Boulevard, only to be intercepted by the second crew. This is what is known as hyperactivity. We were learning fast.

Brian attended Child's World pre-school, which has since been turned into apartment houses. The teachers liked him well enough, but it was clear that they were often exasperated by him. While doing hop, skip, and jump, we were delicately informed that "when the others are on jump, Brian is still on hop." The friends he made were likely to be the ones who had similar problems. And when we met the parents, it seemed that they shared some of the problems of the children. What did that say about us, and about the issues of genetics and environment?

When it came to first grade, we were uncertain that Brian was ready. The public school he was to attend was Roscomare Road School, filled with the children of striving upper middle class parents. The grasping, competitive nature of economic life was being inculcated in the children even at this young age. The first-grade teacher encouraged us to start him, and we did. Brian was a slow learner. He did not actively participate in the class. This got much worse in the second grade. He was essentially a non-participant, and sat in the back of the class. By itself, this was not a problem as far as the school was concerned. After all, someone has to be in the bottom half of the class. But it did seem strange to us. He had a black teacher from the inner city in the third grade. She was probably somewhat intimidated by the high-pressure parents at the school. When she could not say anything nice about a child, she said nothing at all. So we learned nothing about the fact that Brian's performance continued to go downhill.

Meanwhile Brian's behavior also began to deteriorate. He would get into occasional fights, and on one day the kids at school stuffed him into a trashcan. Since other kids were not getting stuffed into trashcans, Brian probably was at least partly responsible. Brian was becoming a rather sullen and unhappy child. As reports of his bad behavior continued to come home, we became increasingly concerned. "Just what do we have to do, Brian. This behavior has to stop." At this point, Brian said disarmingly: "I am just an evil person. I'm going to go to jail when I grow up." We were blown away. This out of the mouth of an eight-year-old. One wanted to back up and start the conversation all over again. "No, Brian, you are not an 'evil' person. It's just that some of your behavior is simply intolerable. You will simply have to learn to control your behavior."

Brian was way ahead of us. He was aware that he was not in control of his behavior. It was not a matter of willpower. "Mom, I don't understand. If jail is not for people like me, who is it for?" What could we say? He was probably right. People like him do fill the prisons. He was not telling us this as a way of getting us to get off his case. This was an honest struggle to understand himself and the world which so strongly disapproved of him. Brian frequently considered suicide. After we had had another argument about his behavior, he told us in resignation, "I'm just going to kill myself." This was clearly not a fresh thought. He had run this through his mind many times before. Again, he was not saying this to get us to back off. Instead, it was saying, 'You're right. I'm so awful that I can't claim to have any right to be alive.' On another occasion, he pronounced to us that he was a 'warlock'. Brian was relatively non-verbal. And this was not a word in common usage. Where did he possibly latch onto such an idea? The concept of warlock was to him a rational framework in which some of his behavior could make sense to him.

Outside of school there were other crises. We joined some Sierra Club outings because Brian seemed to do best in the outdoor environment. He also functioned better with adults than with his peers. Sierra Club members also seem more tolerant of deviance. The Natural Science Section of the Angeles Chapter was a particularly congenial refuge. Brian was fascinated by natural phenomena, and here was a congregation of folk who shared these strange interests. The Natural Science Section offered Field Ecology Workshops which entire families could attend. There was even a program especially tailored for children. After Brian attended the one of those, however, they were discontinued...

On another occasion, we attended a Sierra Club picnic in Malibu Creek State Park. Seemingly out of the blue, Brian was beating up a little girl in her Sunday whites. I rushed over to restrain him, and out of the corner of my eye saw the girl's father approaching with vengeance in his eyes. I demonstratively gave Brian a spanking to assuage the man's wrath, and to forestall the man's personal intervention. If truth be told, it was also to vent my own frustration, and compensate for my sense of helplessness. We left, utterly shaken. Brian had no explanation to offer for what had happened.

Shortly thereafter, Sue took Brian to the shoe store. A child was sitting next to him, also waiting for service. It was not long until Brian started to punch the child mercilessly. Sue quickly restrained him. Again, no explanation afterwards for that behavior.

Brian was also playing T-ball at the local Sherman Oaks Park. Brian was appreciated for his hitting, but other aspects of the game were not his strength. Two incidents stand out. On one occasion the team gathered for a team photo. I had taken my eyes off the group for only a moment, but when I looked back the kid standing next to Brian had tears rolling down his face. He tried not to show his pain. He had probably taken a rabbit punch from Brian the instant I had taken my eyes off the group. Brian stood there looking somewhat angry, but clearly anxious not to give himself away.

On another occasion, Sue and I were both present to watch the game. As it came time to leave, we got into one of the increasingly frequent arguments with Brian. He did not want to leave just yet. His oppositional behavior evolved into an episode in which Brian fell down on the ground and made strange noises. We were mortified. The rest of the crowd mercifully continued to act as if nothing out of the ordinary were happening. We got Brian off the ground and hustled him off to the car. This did not seem to be the kind of behavior that Brian would indulge in voluntarily. And yet the whole thing flowed seamlessly from beginning to end. Just what was going on? If Brian had been younger, this behavior would have been dismissed as an ordinary tantrum. But throwing himself on the ground at his age certainly seemed odd.

We got a call from the school asking for a conference. We had heard nothing from the school for some time, so we did not know what to expect. We were met with a whole committee of school officials, all solemnly arrayed facing the two of us. One by one, they unleashed a litany of complaints about Brian. He was getting into fights at school. A girl's face had been scratched. He was uttering obscenities in class, and insulting the teachers. The tenor of this barrage was that clearly our parenting skills were suspect. We were assumed to be the cause of it all. Just what did we have to say for ourselves? The school suggested a medical exam, and they said they would give Brian one more chance. For their part, they would assign a special teacher to him who would give him the love, affection, and attention that he clearly needed, and which was apparently lacking at home. This came straight out of the Bruno Bettelheim school of parenting. Sue was thought to be the original refrigerator mother.

We related all this to the pediatrician, Dr. Robert Marshall, who suspected that epilepsy might be responsible for the behavior. Temporal lobe epilepsy, we were told, often involves adverse behaviors as well as seizure activity. We told Dr. Marshall about the time we came in to see his substitute Dr. a year earlier, and told him about the auras that Brian was seeing, the intense, false colors which surrounded objects in his field of vision. The doctor did not give us any indication that this was a matter of concern warranting further investigation. Also, he had either not recorded this report in the chart, or Dr. Marshall had not seen it on his return. Marshall now saw this as clear confirming evidence of seizure activity. We had wasted a year. There were other things. I told Dr. Marshall that sometimes Brian walked around the house in his sleep. He could not be awakened during these episodes. One time he even peed in the bathtub during such an episode. At other times, he had what seemed like night terrors. He would jerk violently in his bed, even sit up and bark strangely. He could not be awakened during these times. When I heard Brian begin his thrashing behavior, I would simply sit with him so that he could not hurt himself by hitting the edge of the bed or the wall. Sometimes, this happened several times during the night.

If any of these strange happenings had had a dramatic onset, we probably would have become alarmed and done something sooner. The nighttime behaviors, however, had been going on for years, starting out somewhat innocuously and only gradually getting worse. We had heard of sleep-walking, of course. Perhaps this was just one of the things that parents have to put up with, like bedwetting. We had heard of night terrors, too. It just seemed to be one other thing we had to manage as parents.
Now that we surveyed the whole picture at one sitting, it all began to make some sense. What we thought were night terrors were more likely night-time seizures, and the day-time behavior was also seizure-like in character (later we learned that this is called sub-clinical seizure activity). Brian was not fully in control, but also not fully unconscious-just what he was telling us.

Dr. Marshall prescribed an anti-convulsant medication for Brian: Dilantin. The night-time seizure activity stopped almost immediately. We allowed ourselves to breathe a sigh of relief. Perhaps we were onto something. The day-time behaviors, however, continued as before. We were referred to a neurologist for an EEG. When Sue took Brian there, he decided to lock himself in the men's room. It was a while before they could get him out. More bizarre behavior! Our threshold of what would surprise us was going up.
Dr. Marshall tried some other medications. One after another was found to be ineffective in dealing with this problem. Brian tried Phenobarbital. It made everything worse. Brian left home in the afternoon and we had no idea where he had gone. Hours later, we received a call from his friend's house, several miles away in Encino. He had simply walked there, which he had never done before. He was truly wired. Panicked, we went back to Dr. Marshall, who did not seem surprised at our report. Said Sue, "either we change the medication, or I want a ball-and-chain."

Dr. Marshall really wanted Brian on Tegretol. However, that was an experimental medication, and he was required to evaluate all the approved alternatives first, before prescribing Tegretol. So were going down the list, one by one. In the meantime, the staff counselor at the school was doing her best to be nice to Brian. It seemed to make no difference to his behavior. So when he finally hurled an obscenity at her as well, she took that as the final straw and rejected him. She was through with her manipulative display of affection. It was not surprising. It's hard to keep an act like that going. The next time we met, we got only icy stares from her. In some way, she felt us responsible for sabotaging her efforts. If Brian was unable to respond to her kind ministrations, then his emotional resources had clearly atrophied-and we were probably at fault. Monsters!

Karen
It was now the spring of 1977, more than two years after Karen had died. The death of his baby sister may have had something to do with what Brian was going through, so it is important to recount this history. Karen was born in December of 1973. It had been another difficult pregnancy for Sue, and this time it was Bendectin® that pulled her through, rather than Tigan. Questions had not yet been raised about the safety of Bendectin. It would have been academic. Sue could not keep any food or drink down without it.

After some months, Karen developed difficulties in keeping down food. We took her to Dr. Marshall, who was very concerned but kept his own counsel as to what he thought was going on. He muttered something about Bell's palsy, because one side of Karen's face was showing some signs of distortion, of partial paralysis. Despite the mounting concerns, and with Marshall's blessing, we undertook a family vacation to Montana. There Karen's difficulties in keeping down food worsened. An old retired general practitioner examined her-far removed from civilization-and encouraged us to seek further help. Dr. Marshall was out of reach on his annual vacation. In Missoula, Montana, the medical staff of the hospital considered pyloric stenosis, although it had never before been reported in girl babies. An operation was performed, and indeed her symptoms improved. However, the problem had clearly not been entirely resolved, and now a more severe neurological problem was suspected.

We returned with Karen to Los Angeles and took her directly to the UCLA Medical Center in Westwood. The resident came to take her history at four in the morning. These were the days before CAT scans and MRIs. Karen underwent a number of procedures to explore what might be going on in her brain, including a pneumoencephalogram, a very painful procedure, and finally an exploratory operation. An inoperable brain tumor was found. Marshall, on hearing what had transpired during his absence, said sheepishly that he just hadn't expected things to move so fast. He affected not to have been surprised by the findings. Karen was also attended by the pediatric neurologist John Menkes, of "Menkes Syndrome" fame. He would occasionally come around with his flock of students. This was a teaching hospital, after all. He never came within six feet of Karen. For him, she remained a "case."

Karen was signed up for a series of cobalt-60 radiation treatments at UCLA. Every day, Sue would take Karen to UCLA for the treatments. Since the radiation had to be delivered very precisely to a certain area of the brain, Karen had to be kept still. This was difficult, so Karen was anesthetized. She did not react well to the chloral hydrate, which fact was duly noted in her chart. The next day, the intern reflexively went for the chloral hydrate. Karen again had a bad experience with it, and again it was duly noted in the chart. The third day, a yet different intern again went for the chloral hydrate. Sue was amazed that no one bothered to read Karen's chart. She mentioned the problem to him. Day by day, the problem recurred, and Sue had to bring the staff up to speed. Sue was learning assertiveness as a survival strategy in impersonal hospitals. We finished Karen's radiation therapy at Cedars Sinai, where ingeniously Karen was held in a restraint normally used for babies undergoing circumcision. Karen was still small enough to fit.

After the radiation therapy, Karen's activity level increased markedly. She was crawling all over the floor. It was soon clear, however, that Karen was again having difficulties. Sue took her to UC San Francisco Medical School for chemotherapy treatments. They had never treated a baby so young. The treatments were started at a very low level, because toxicities and tolerances had not been established for babies. While Sue was at UCSF, she met Ryan and his mother. Ryan's case was so unusual that it was simply referred to as Ryan's syndrome. His mother had been a nun, but had abandoned her vows to marry an Air Force officer. This was the outcome. If she was inclined to regard her fate as retribution for her apostasy, she had plenty of reason to do so. Ryan's mom had already learned assertiveness as a survival tactic in hospital settings. Sue took lessons. Later, when Sue was trying to get timely attention to Karen, deploying her new skills, the staff nurse simply told her, "We're not talking about a cure, here, after all." In other words, Karen was there as an experiment, primarily to service the interests of science. Don't get your hopes up. What's important here is our schedule, not hers. Again, in this teaching and research hospital, Karen was a "subject", not a "patient."
In fact, the fast-growing tumor did overtake events. Karen's daily care was taking more and more of Sue's resources. In fact, it became a full-time, day and night operation. Previously Karen had been such a beautiful baby that she was at risk of becoming community property in the grocery store. Now her facial distortion was causing people to avert their gaze. Karen no longer existed in public.

While our conscious brains were still holding on to hope, we were in fact accommodating to what was becoming inevitable. When Karen showed difficulty in breathing, Marshall suspected she was suffering from cranial pressure, so Sue took her back to Cedars Sinai Hospital. The next morning, Karen was examined by staff doctors. One procedure was to stick her with a pin over various parts of her body, to see where she still had sensory awareness. "She isn't crying", said the doctor. "She no longer has a voice", I answered. That is why they keep parents outside. I asked the doctor what he thought could still be accomplished. He answered that really nothing could be done anymore, that they just wanted to know what was going on. Confronted with death, even doctors are propelled into a frantic but futile activism. What the doctor had given me was the rationale for an autopsy, not anything of any remedial or supportive value. We came to the decision to cease all treatment, but to focus instead on making Karen comfortable. I had to convey this to the doctors. Sue could not bring herself to utter those words. An unwritten hospital policy went into action: "Do not treat". Two hours later, Karen died. She never had a chance to know what life was all about.

Brian had of course felt left out during this outsize preoccupation with Karen. He even said at one point, "I wish I could be in the hospital so that you would take care of me." Now his abandonment was perhaps even worse, because we were preoccupied with our own grief. Probably he had occasionally wished Karen out of his life, in classic sibling pattern, and now he had his wish! Undoubtedly he was blaming himself for her death at some level. In any case, we had no awareness of what internal emotional crisis he was going through as a result of Karen's sudden disappearance.

It was February, 1975. Brian was in first grade. We remember doing all of the usual things in the months following Karen's death. We took Brian to see Marcel Marceau at the Shubert Theatre. During the following summer, we went to the Hollywood Bowl, to Catalina Island, to the LaBrea tarpits, to Sea World in San Diego, and to the Laserium at the Griffith Park Observatory. We also visited Tuolumne Meadows in Yosemite. In the fall, we went to Montana on vacation.

The trip to Tuolumne Meadows in particular was memorable. Brian and I climbed the front face of Lembert Dome, that bald granite boulder which was smoothed by glacial action. Where you face it from the parking lot, the rise is so steep that ropes are required. But slightly south of that area, the mountainside is less steep, and one can simply climb at the limit of adhesion of one's boots. Brian was awfully reluctant at first. I reassured him: the worst that could happen was that one would slide down on one's bottom to where the slope was less steep. Brian came along cautiously. We reached a terraced portion of the mountain, where the rocks had a rough washboard structure. We climbed from terrace to terrace. By the time we reached our goal, Brian had lost all his fear. He came back down triumphant, a confirmed mountain climber.

There is no recollection of anything that year being seriously amiss with Brian. Sue was undergoing yet a third difficult pregnancy, quickly to fill the void that had been left. Kurt was born to us that November. In retrospect, it is quite possible that the depression Brian suffered after Karen's death lowered his seizure threshold. The resulting seizures first showed up at night, and only later affected daytime behavior. It is also quite common for seizures to show up in children for the first time when they are about six to eight years old, even when birth injury is suspected as the cause and there is no other trauma. This, then, brings us back to the story, in the spring of 1977:

Brian was beginning to respond to the Tegretol, as his medication dose was gradually increased. He had no more violent episodes, and he was just a bit easier to live with. Nevertheless, we had clearly burned our bridges with Roscomare Road School, and it was time to look for something else. A conference was set up with Los Angeles School District personnel to determine Brian's educational needs, and to select a more appropriate setting. After results of some testing available, we drove downtown for the conference.
Brian's behavior was again an issue, but on this occasion I had in tow Brian's new brother, Kurt. Kurt charmed them all, and he gave us a challenge managing him during the conference. After witnessing how we handled the restless Kurt during the meeting, it was simply not possible for them to indict our parenting for whatever was going on with Brian. In the end, it did not matter. The School District had only an aphasia program available, and that was clearly not appropriate for Brian. We had to look to the private schools.

Even though Brian was now benefiting from the Tegretol, we thought it a good idea to visit a neurologist. We were already acquainted with Dr. John Menkes, and we made an appointment. Dr. Marshall was ambivalent. Perhaps he already had a good idea of what was in store for us.

An EEG (electroencephalogram, or record of electrical brainwave activity) was taken, and Dr. Menkes reviewed the charts. Then we met to discuss the case. We told Dr. Menkes of the night-time seizure and the sleep-walking, of the violent episodes and of the benefit we saw from the Dilantin and the Tegretol. We were totally unprepared for his response.

"How do you know that these are seizures?" he challenged us.

I was totally unprepared to respond. The word seizure had only been an operative word in our vocabulary for a matter of weeks. It hadn't been my idea. It was the working hypothesis of our pediatrician. I could just deflect the question by deferring to Dr. Marshall. But that was a cop-out. In fact, I had become convinced that Dr. Marshall was right, and I had assumed ownership of this hypothesis as well. So I would do my best to defend it. We went back and forth. I presented data, and he would dismiss it. The atmosphere became progressively more acrimonious.

Let's not get hung up on semantics, I argued. If you want to call this something other than seizures, so be it. But what about the underlying phenomenology? Call them night terrors, seizures, auras, whatever you want. Are we not dealing here with behavior that is manifestly responsive to anticonvulsant medication? And isn't that what counts? Why do you, Dr. Menkes, feel threatened when parents make some effort to be knowledgeable about your subject? So what if we use words that for you have a precise meaning, but in our usage may not? Can't you look past that for what we are trying our level best to describe?

Dr. Menkes pronounced Brian to be merely a rambunctious kid. He was among those who thought that Brian was simply reacting to the death of Karen. He was convinced that the Tegretol level was clearly too low to be therapeutically effective. We must be dealing with a placebo effect. However, to settle the issue, he was prepared to take a blood level of Tegretol and confirm his judgment that it was below the therapeutic range. That done, he showed us the door. We were quite shaken by the verbal hazing we had received. When a high-powered neurologist wants to intimidate, he can overpower vulnerable parents at will. He wrote Dr. Marshall a hand-written letter, in perfect form reminiscent of Sigmund Freud himself, and related his findings. A week or so later, a second letter arrived in which Dr. Menkes acknowledged the possibility that Dr. Marshall might be correct. The Tegretol level had been found to be in the therapeutic range.

We learned another lesson. Neurologists were not going to be very useful to us in dealing with this problem. Here we were dealing with the very best, and he was so unwilling to listen that we had to struggle to get any data to be heard. Menkes was off in his conceptual world, making rash judgments on the basis of standard book-learning. He evidenced not the slightest personal engagement with his patient. In a matter of minutes, he "understood" this case and his mind slammed shut. Only data about blood levels could reopen the issue. Behavioral phenomenology was close to being irrelevant. That was all anecdotal. How could he take that seriously?

Brian started attending Oak Hill School, which accepted children with learning disabilities. Brian's behavior was tolerable enough with the medication that that was no longer of primary concern at school. The classes were small, and the school's leadership, Herbert and Claire Lobell, were well-regarded educators with whom we felt comfortable.

One day, we heard from the school that Brian had fallen off the climbing structure and been knocked unconscious. We took him to Dr. Marshall. Brian had suffered a concussion. He was disoriented, and only slowly recovered. Marshall was concerned.

"Let me know if there any lasting effects, such as changes in personality," he told us. "What do we do then?" we asked.

"Oh, there's really nothing that can be done. I just want to be kept informed."

Did Brian have a seizure, and did he fall as a result of that? Or had his coordination deteriorated so badly with the medication, we wondered. We were used to seeing him climb with cat-like assurance. He had been a tree-climber for years. Clearly, his physical skills had suffered with the Tegretol. At T-ball, his former skills as a power hitter were deserting him. His reaction time was slowed. His eyes had a glazed-over look of someone who wasn't all there.

After Brian's second year at Oak Hill School, the management wanted to shift its focus away from learning disabled children. We wondered whether it would remain a suitable environment for Brian. He did not need to be confronted with academic failure. We came at this time to investigate a Waldorf School in Northridge, Highland Hall, for our younger son Kurt, who was ready for Kindergarten. His teachers at the Presbyterian pre-school had strongly urged us to put him on Ritalin® because of his hyperactivity. We were not ready to medicate a four-year-old. At Highland Hall, they were prepared to accept him, and they were philosophically opposed to the use of such medication.

Sitka, Kurt & Brian 1978

I had had my own experience with a Waldorf School shortly after World War II in Germany, having attended a residential Waldorf School in Hamborn prior to coming to the United States in 1951. I recalled it as by far my favorite educational experience, and was sorry to have had to leave. It was a very humane educational approach, one that was sensitive to the particular child's needs, and generously accepting of their individual differences. We were lucky to find Highland Hall open to considering taking Brian as well as Kurt. Brian went there for a spell, and they accepted him into the sixth grade. His teacher had a number of challenging children in his class. It had been his choice. Many other teachers would not have taken such children on.

Highland Hall did for Brian exactly what was needed. It nurtured his soul. It gave him a hundred ways in which to succeed, and it did not confront him with failure. Despite his sometimes disagreeable ways, he was appreciated and valued. It kept him together until his intellect and his self-understanding could mature. Although he was probably somewhere in the middle third of the class academically, he clearly had some outstanding abilities. He just didn't have it together. That's the learning disabled child!

Brian himself was out of his mind with happiness on coming to the new school. He loved the emphasis on arts and music. The school allowed him to climb the tall eucalyptus trees-with our permission. He struggled with reading and writing, but they knew he wasn't stupid, and were willing for certain skills to come along more slowly. The school teachers seemed to be operating on a kind of Hippocratic Oath for education: 'Above all, do no harm.' Brian never ceased to love school, despite the sometime lack of academic success.

At home we were still facing a number of challenges. Brian was often depressed, self-destructive, and suicidal. He could still go into rages in which he sometimes put his foot through the hollow-core doors. He would bite his own hand in self-punishment. The wrong tone of voice would set him off. He would routinely go off into the chaparral behind our house to be alone. It was difficult for him to relate to people. He seemed to be incapable of interpreting facial expressions, and therefore was in some trouble dealing with humor, with irony, and with teasing. In consequence, of course, he was relentlessly teased.

Kurt was quickly ahead of Brian in terms of understanding social situations. In fact, he often played the role of peacemaker, even at an age when he was still sitting on our laps. On the other hand, he was also hyperactive and impulsive, and could not resist stoking the volcano from time to time. It was an incendiary combination. Kurt would know how to innocently get Brian into a snarling frenzy; Brian would come down on Kurt; and we would come down on Brian. It was all very predictable. It was all very repeatable. Life was unfair.

Brian had to have a very regular, routinized existence. There was enough chaos in his life, that whatever could be made orderly needed to be made orderly. He could erupt at unanticipated changes in his routine. Sue, the chauffeur, might for example have a visitor who would be occupying "his" seat in the car when he was being picked up from school. "What is she doing in the car?" he would say derisively. It was embarrassing. We did not take the children much of anywhere, certainly not to a restaurant or to other people's homes. They were simply not fit company.

Brian also continued to experience what are called "soft neurological signs". Sometimes his right side would feel warmer than his left. When he was feeling odd, he would not tolerate a person on his right. The person would have to be on his left. He felt that the medication simply clamped down on his occasional violent impulses. The angry thoughts still raged in his brain.

Brian continued to lag behind in his language skills, so we took him to the Speech and Language Center in Van Nuys. He also benefited from the orderliness and the ritual associated with judo, which he learned at Junior Gym from a teacher of great patience, commanding and resonant voice, and imposing bulk. Judo honed Brian's observational skills and enhanced his self-awareness. His lack of quickness (thanks to the Tegretol) he made up for with his brute strength and sheer willpower. This determination and intensity was to stand him in good stead in various trials to come.

In the seventh grade, I accompanied Brian's class on their annual camping trip. The traditional site for the seventh grade trip was Yosemite. It was a chance for me to experience how Brian related to his classmates. He was clearly well accepted, but he remained the object of teasing by the other children in the class who also had problems. How intolerant we are of seeing our own weaknesses exhibited in others!

The trip was also a demonstration of the benign influence of the natural environment. Somehow the natural cathedral of Yosemite was like an anechoic chamber for conflict. It simply absorbed it, diffused it. Life assumed a more natural pace. There was Lebensraum for all. I was disappointed that more was not being learned about this remarkable place. The seventh graders were caught up in a kind of Zitterbewegung of their own insecurities, and had limited attention span for geological history, glaciation, etc. But the essential learning, of how to relate to one another and to the physical world was taking place.

The eighth grade brought participation in the class play. In a small private school, everyone must take part. Amazingly, Brian carried it off credibly. He played the role of a hoody character, which to a certain extent came naturally out of his experience.

The ninth grade brought a more academic challenge. This actually suited Brian very well. He was drawn to the world of mathematics and the physical sciences. Here he was dealing with established laws that simply needed to be understood. There was ultimately no controversy and no ambiguity about the physical laws that he was encountering. Brian was dissatisfied with the level of physics teaching, so he simply read a college level physics text instead. This allowed him to carry on discussions with his teachers in which he was very much on a par with them. He was finding himself.

He also developed in his artistic skills, which was the school's strength, and he participated in school orchestra with his saxophone. The literary side, however, was difficult for him. The task of comparing the writing styles of three authors, for example, was beyond him. Why was it not enough simply to have read and understood the material?

His difficulties in relating to people were only compounded by the problems of teenagerdom. Socially he was simply not of the same age as his classmates. Fortunately, they accepted this, and treated him like a class mascot. He could be counted on for a certain amount of comic relief, provided in all innocence, and for occasional oddities. He could also awe and startle them with his deep reflectiveness, his mental tenacity, and his philosophical curiosity. It was said that "Brian is good at the hard things, not so good at the easy things."
Brian was continuing to gain emotional support and intellectual sustenance from his bond with the natural world. This relationship had a certain spiritual quality, a profound feeling dimension. He was at home there. It was non-threatening. It led an inquiring mind from one question to another. To a tough guy who did not mind sleeping on the ground without benefit of air mattress, and who could eat grubs to sustain himself without blanching at the thought, the natural world extended only a welcome. He had become a mountain climber, and he was still a tree climber. One approaching winter storm found Brian high up in the sycamore in our yard, swaying back and forth in the wind, reminiscent of that same experience recorded by John Muir.
Over a period of time during those years, Brian found a legitimate outlet for his equivocal relationship to violence. He became fascinated with knives, with camouflage, with Green Beret bravado. He possessed a very large Bowie knife, with built-in grappling hooks, among other such treasures. In this camouflage uniform, he would truck off into the Santa Monica and Santa Susanna mountains. He encountered other children there engaging in war games, and even met a real Viet Nam veteran, one who was also isolating himself in the mountains, presumably due to post-traumatic stress disorder. They got along famously.

There was also a time at which Brian's tree-climbing skills were very useful. We were vacationing in Montana, and had in mind climbing Lindy Peak in the Mission Mountains. That's grizzly country. We were aware that grizzlies were very unpredictable, but had a reputation for attacking women during their period. The Plains Indians, for example, did not allow their squaws out of the village during those times, and an attack on a number of women in Glacier Park was fresh in our memory. Our schedule was somewhat inflexible, so we took our chances, relying on the very low probability of actually encountering a grizzly. In the high alpine forest, however, there he (she?) suddenly was, looking at us! Arrayed in his golden brown fur, he was magnificent. And he was holding all the cards. We looked for the nearest tree to climb. The alpine conifers here had their branches growing downward, from the weight of snow and also to minimize exposure to the weather. One could not get purchase on them with one's boots. We found a broken tree on which Sue and I could climb. Brian was yelling that-in his haste-he could not get his pack off. Sue climbed back down to help him. Then Brian scooted up the nearest tree without any difficulty, and was way out of reach of any grizzly. Only after we were in safety did we dare look again in the bear's direction. After all, looking at him could be taken as an aggressive posture. He was gone.

Unfortunately, he was going in the same direction we were. Everywhere we went we saw fresh bear signs. We continued to watch for him nervously. To put even more distance between us, we stopped for lunch on a huge boulder that gave us good visibility to all sides. A strong smell wafted in our direction, which we again took as a sign of bear. At least we were down-wind from him. Moments later, two bears came crashing through the brush. They were black bears. They never saw us sitting on the rock, but passed right below us.
We went on to above timberline, where we pitched tent on a patch of moss that was just the size of the tent. Brian slept in the open on another patch of moss nearby. Snow was our source of water. There was no tree on which to string up our food, so we sprinkled flakes of paradichlorobenzene (mothballs) around the food area to discourage the bears. That night, the tent was buffeted by wind. Sue remembers that I was staring at the roof of the tent, and said "I can think of nothing but bears!"

On another occasion, we were at an IEEE (Institute of Electrical and Electronic Engineers) conference at UC Santa Cruz, which is built among the redwoods. Brian was in heaven-so many trees. At the wine and cheese party one afternoon, eyes were suddenly drawn to a boy high up in a redwood nearby. It was our son. We urged him to come down-for everyone else's sake. We discussed the risk involved in tree-climbing. Brian said with finality: "I would not take chances. I am not a dare-devil. I feel perfectly secure in what I am doing." He was right, of course. He was as cautious and deliberate in his tree-climbing as in everything else. Our discomfort about the scene that he was making, on the other hand, he could not relate to.

Several vignettes from these years at Highland Hall help to characterize Brian: Brian once told a lie at school, and got in trouble for it. I had a long discussion with him about honesty, saying that it was worth a lot to establish a reputation for honesty, but that such a reputation could be easily undone with a lie. He took this absolutely seriously, and put it right into his "autoexec" file. He was convinced; from now on, he would be scrupulously honest, and that was all there was to it. Of course, honesty did not mean that everything had to be said, necessarily. There was such a thing as diplomacy. But that was calling for too much subtlety.
Brian counted on us for such honesty as well. As a result, Brian believed in Santa Claus until well into High School. He simply knew his parents to be utterly reliable in what they told him. Once we realized this, Sue hastened to update him. The next Christmas, Brian's stocking did not go up on the mantel. He wasn't going to be held for a fool yet another time. Kurt, however, knew his stocking would be filled in the morning if only he hung it up on the mantel. As far as he was concerned, Brian had just turned from one kind of fool into another.
By eleventh grade, we were having to think beyond High School. Brian would no longer be willing to live at home. Yet he was not ready for the outside world. If he failed to take his medication, or if he was set off by some untoward event, he could conceivably go into some sort of self-destructive spiral from which he could not recover on his own resources. We began to look for institutions that would accept learning disabled college-age youth with behavior problems.

It was March of 1985. Sue Rosen, a friend of ours from our days at Cornell, and now living in San Francisco, had just attended the annual meeting of the Learning Disabilities Association, which was then the ACLD. She was also now struggling with two severely disabled children, which drew her to the conference. She picked up a tape on EEG biofeedback for epilepsy, a talk given by Margaret Ayers, so that she could send it to us.
The technique of EEG biofeedback held out the promise that one could train the brain through information available in the EEG. All one had to do is extract the relevant information from the EEG, and provide it back to the person, who would then act upon it. By giving the brain this information, and repeatedly confronting it with this challenge, it could learn to change its vulnerability to seizures. This had been proved a number of years earlier in numerous studies, principally by Professor M. Barry Sterman of the UCLA School of Medicine. It had not become widely accepted however, largely because of the great commitment of time and money required, and because the field of neurology was becoming enchanted with all the new medications that were coming along.

The EEG allows one to "watch" a person's brain in operation much like a mechanic listens to an engine. If the engine is badly tuned, the sound gives it away. And just like in earlier days the mechanic might well have tuned the engine by sound, EEG biofeedback held out the promise that it could be used to train the brain to behave itself.

The concept made sense to Sue. Her graduate work in neurobiology in fact was not unrelated to this area of inquiry. Many years earlier, she had implanted electrodes in a number of cats, and had trained them in an avoidance response. She was looking for changes in the evoked potential in the association cortex that accompanied the learned behavior. EEG biofeedback was taking this one step further. It was producing changes in behavior via operant conditioning of the EEG. Why not! We knew of other kinds of biofeedback. When people react badly to stress, they are taught to relax their muscles, or to warm up their hands. To do this, they are given information about their hand temperature, or their muscle activity. They respond to this information, and gradually learn to manage their stress response. At some unconscious level, the brain solves the problem. EEG biofeedback was really the same thing, only it uses information about the brain itself.
Sue talked with Margaret Ayers, whose office was conveniently nearby in Beverly Hills, and set up an appointment. When the conversation was winding down, Ms. Ayers asked if Sue wanted to know what the fee was. As a matter of fact she did, although it would not have mattered one way or the other. We were clearly going to explore this new avenue with Brian regardless of cost in terms of time and money. How arrogant of neurologists to assume that their patients would not accept the expense of undergoing EEG training. What entitles them to make that decision for parents?

On March 5, 1985 Brian had his first EEG training session. The EEG showed more seizure-like activity on the left hemisphere, which is where training was begun. Epileptics show a lot of low-frequency activity in their EEGs. This is like large ocean swells in a Pacific storm. Nerve cells that would ordinarily be firing individually, minding their own business, were here firing in unison, making for large amplitudes of brain waves. The biofeedback instrument let Brian know whenever his brainwaves got too large at low frequency. He would then try to get the amplitude down. He was also shown how much brainwave activity there was in the region of 15 Hz (cycles per second). The brain appears to have some pacemaker circuitry which regulate brain activity. They fire rhythmically at various frequencies. Some frequencies appear to play special roles, such as the well-known alpha frequency, for example. Brian was being trained at a frequency of 15 Hz, just above the alpha band. Increasing activity at 15Hz apparently means greater quiescence of the system that controls motor activity (just as greater alpha amplitude means greater quiescence of the visual system). In any event, this exercise helps the brain do a better job of regulating its own activity. So the instrument let Brian know how much of that 15-Hz activity was going on in his brain at any moment, and he could try to increase it.
In order to be at least somewhat scientific about this, Sue started keeping a diary. Whereas both Sue and I were scientists, it is difficult to be scientific with respect to your own child! Brian started training at two sessions per week, 30 minutes each. After four weeks of training, we had a chance to spend the weekend at Point Mugu. It was the annual gathering of volunteer naturalists working in the Santa Monica Mountains. Sue was founder/director of one such group, the Topanga Canyon Docents, and had organized this annual gathering. At this event, friends who knew Brian thought he was 'lighter'. For our part, we noticed that Brian's irrational outbursts had stopped.

Brian was simultaneously undergoing social skills training with Dr. Janice Peterson. She was teaching the group conversational skills, and was taking them to restaurants to learn how to order, etc. She was inclined, of course, to take some credit for the improvements in Brian's behavior which were now occurring. But they had not occurred prior to the EEG training, and he had been going to Dr. Peterson for some time!
One month after the training was begun, we took a trip to Monterey Bay to see the new aquarium. Brian did not want to go along, and I had long ago sworn to never undertake another lengthy trip with both children in the car. It was a formula for family crisis. But Sue was understandably unwilling to leave Brian behind with the house sitter. We undertook the trip with some misgivings. Forced to go along, Brian was intending to be a non-participant, withdrawing to his book. It did not happen. Repeatedly, he was drawn into the conversation despite himself. Once we looked back at the two in the backseat of the Vanagon Camper and found them asleep on each other's shoulder. Dare we believe it? Were we going to be allowed to enjoy parenting again?
Some notes from Sue's journal:

April 7. Drive from Morro Bay to Monterey. "Brian's good spirits continue to make this the best trip ever."
April 8. "We all have a fantastic day at the aquarium."
April 12. "Brian is coming out of his room in the evening to engage someone in conversation. He is hanging around after dinner to talk and socialize. He is smiling and laughing, and can even take a joke."
April 17. Brian is acknowledging changes in himself. He believes that he is concentrating better.
Before this, when Sue had asked him whether he was aware of any changes in himself, Brian had said no, but he allowed that "Kurt is nicer to me now". In fact, of course, it was quite the other way around, and Kurt simply responded.
April 18. Brian is carrying his medicine with him and remembering to take it by himself.
April 19. Brian reports that he thinks he should be right-handed. We talked about switching.
April 20. "Brian is planning ahead. He is thinking about a summer job to earn money for his projects."
April 22. "Brian spent the evening talking my ear off about school and about rock climbing."
April 23. "Brian and Kurt are walking back from the school bus having conversations these days, instead of Kurt arriving alone in tears."
April 25. "..for the first time we are seriously considering Brian's going away to college..."
April 26. "Brian was irritable and unpleasant all afternoon and evening. He was at least aware that it was he who had the problem, and not everyone else."
Reports of falling asleep in class.
April 30. "Margaret says Brian is doing so well she would like to have him start reducing his medication."
May 3 (ninth week of training). Brian expects to finish his main lesson book-the first time ever. He expressed interest in going to parties again-for the first time since eighth grade.
May 21. Brian reports that note-taking and writing of main lesson books is getting easier.
For the first time, Brian is talking at length about changes he sees in himself: He can now think about the good things in life. He used to think and imagine and dream about what he hated and what made him angry. He says the medicine allowed him to control his behavior but not his feelings.
May 27. Brian got an 'A', and the second highest score, on a math test which most of the class flunked. He is scheduling his time better now. He handed in an overdue project. He used to just forget about things that were overdue.
May 28. Recorded EEG. Observed considerable reduction in EEG amplitude and in incidence of low frequency activity.
May 29. Saw Dr. Marshall. He thinks Brian is just outgrowing his learning disabilities. It remains for him to be convinced, but he is willing to reduce the Dilantin dose (though not the Tegretol).
June 3. Marshall is willing to give this a chance if he can dictate the changes in medication.
June 5. Reducing Dilantin from 300mG to 260mG per day.
June 9. Brian is much more responsive to Kurt. He doesn't always shut him up with "I don't want to know" or "I don't care". Kurt built his Lego train into a message delivery system in his cardboard fort. He sent Brian a message: " I love you." Brian returned with "I love you too but I have work to do so bye."
We have come a long way from "Brian is lion, and Kirt is dirt".

June 19. Reducing Dilantin level from 260mG to 230mG per day. Marshall thought it might take a year to get Brian drug-free. Margaret too talked in terms of a year.
June 28. Saw Dr. Marshall for the first time since reducing Dilantin. Brian was the model of decorum. Dr. Marshall showed signs of being persuadable. He asked about the changes in the EEG that we had seen.
July 1. Marshall says Dilantin blood level is barely measurable. OK'd a decrease of another 30mG to 200 per day.
Interruption of training through July for trip to the Golden Trout Wilderness, and for Brian's Sierra backpack.
July 29. Decreased Dilantin to 160mG-below the therapeutic range. We can therefore count on being able to reduce it to zero over time.
August 3. Brian said it was hard for him to remember just how bad it was before he started the EEG biofeedback training.
September 4. Decreased Dilantin dose to 130mG per day.
September 18. Decreased Dilantin dose to 100mG per day.
September 28. Brian asked for an appointment calendar to keep track of his assignments. (We had bought him calendars for years, but he never used them previously.) He is slowly gaining control over more and more of his life.
September 29. Brian is incorporating regular exercise and clarinet practice into his schedule.
October 5. Dr. Marshall was impressed with Brian's improvement. It has been 27 weeks of training so far, or about 54 sessions.
October 16. Dilantin level reduced to 30mG per day.
October 19. Brian has much more energy after reducing Dilantin dose. He is joining the school cross-country team.
October 30. Dilantin level reduced to zero! It has been 61 sessions.
November 5. Brian complemented Margaret on her clothes!
November 8. Brian enthusiastically and on his own initiative bought a watch for Kurt's birthday.
Such interest in someone else's desires and happiness is a welcome change.
November 9. Brian ran in 5K race.
November 11. Brian began reducing Tegretol level, from 1000 to 950mG.
November 19. Spiking activity still evident in the EEG.
December 10. Tegretol level to 900mG.
December 27. Tegretol level to 850mG.

The trip to the Golden Trout wilderness in the Sierra Nevadas Southwest of Lone Pine was memorable for several reasons. We were staying at the Audubon Camp with an Audubon group. We usually undertook joint outings during the day. On one day, Brian took off to Mount Langley, some seven miles away, and with perhaps 4,000 feet of altitude gain to above 14,000 feet. He took off after breakfast, and returned in time for high tea. It had been quite an undertaking. Brian conveyed to us how it was done: "You just don't stop," he said, in perfect seriousness. He also decided to go fairly directly, cross-country, thus cutting off some switch-backs. Actually, he had lost the trail, and just headed directly for Army pass.

On that same trip, however, Brian had an episode in which he became extremely enraged. The cause is lost to memory. He was so angry that we were afraid that he might hit us. He was now my size, and incredibly strong. He must have seen the fear in our eyes, because he came back later, after he had calmed down, to say that regardless of how angry he became, he would never hit his parents. I was touched, but not reassured. I was sure only that if he ever did hit one of us, he would be very remorseful afterwards. This is, of course, the story of battered wives: Loving husbands, occasional violent episodes, and remorse. In fact, it never came close again to violence. The biofeedback had come along just in time.

Sue's journal ends with year-end 1985. The intent had been to track progress rigorously to help resolve the question of whether the biofeedback was actually helping, or whether we were engaging either in wishful thinking or faulty memory. In fact, one's intense desire to see positive change with any new undertaking also causes one to be his own severest skeptic. This is not generally understood. "Desperate parents" are thought to be willing to clutch any glimmer of progress and perhaps even imagine progress where there is none. The very opposite is the case. Parents are progressively humbled by one failed undertaking after another, and their skepticism is finely honed.

When we began to see changes in Brian initially, we were trying very hard not to be swayed by it. Sue and I saw these changes independently, but we didn't mention it to each other, and didn't confer on it, for some time. The most important force at work here is that you don't want to set yourself up for disappointment later. Not to believe the positive changes when they are first observed serves to protect your own wounded psyche. It is noteworthy in this regard that the first indication of positive change which Sue committed to the diary was what other people observed about Brian. Somehow that was taken to be more objective evidence. After all, they did not know that Brian was undergoing the EEG training. Their testimony was like a "blind test", in scientist's parlance.

It has been pointed out that parents who have a disabled child undergo a grieving process, much like for a child that they have lost. They are grieving the death of a dream, the dream they had for their child. This is a lengthy process that involves your whole being. It is not undone suddenly even with some welcome news. It takes a lot of evidence, and a lot of time, to dig out of that hole.

It is also true that despite the favorable changes we were seeing, Brian was still having severe problems. By the end of 1985, the purpose of the diary had been served. We were unambiguously convinced that the EEG biofeedback had enabled Brian to control his behavior in a significant way. The changes were too profound and too comprehensive to be dismissed. Moreover, they were accompanied by partial normalization of Brian's bizarre EEG. An independent, objective scientist might still wonder if the progress Brian made was due to the positive expectations that were created in him with all of the fancy machinery and loving attention that was being showered on him in this connection-the placebo effect, if you will. The part of you that is parent really doesn't care, of course. We'll take progress any way we can get it. The scientist part of you would like to know, however, how much of the change is "objectively" produced (by the EEG biofeedback), and which is subjectively produced (by engaging in a process in a supportive, hopeful environment).
Whereas the question may be always on our minds as scientists, it seems to me that ultimately it has no satisfactory resolution. It may be impossible to tease these elements apart, much as it is impossible to say about a photon, which part is particle and which part is wave. The doctor, too, uses the subjective dimension to his advantage. He comes at you with the white coat of status, tells you that you will be all right in authoritative voice, charges you a lot of money, and is not above giving you a sugar pill if he has nothing better. At its best, medicine also wants to invoke all the forces of healing, even the "subjective" ones. In the case of biofeedback, the intermingling of the subjective dimension with the objective is intrinsic to the process. Whereas the doctor can give a shot or a pill to an unwilling patient and still have it be effective, the same is not true of biofeedback. The person's will has to be engaged. He is not a passive participant.

By virtue of this inseparability of the subjective and the objective dimension in biofeedback, it follows that we can prove nothing 'objective' with a single case. Ultimately, one has to look at a large number of subjects, and this is not our interest for the moment. (By the same token, it is impossible to tell that a single photon has wave properties. One must look at many to be sure.) With Brian certainly the subjective dimension was quite significant. The biofeedback training gave him a strong sense of empowerment. Here finally was something he could do for himself to master his condition. Up to that time, there was a pervasive sense of victimization. His brain was unreliable. His doctor was telling him that this was a lifetime condition, and that medication was the only thing that could help. All the problems the medication did not address he thought he was stuck with. His parents were down on him all the time. Friends were fickle. He saw himself a failure in so many ways. And yet he was trying so hard! Life was really unfair.

The sense of victimization, of course, extends to the parents as well, if truth be told. I expect that one of these days a book will be published titled "Parent Abuse". I could certainly contribute a chapter. Children are born selfish, and think nothing of placing unbounded demands on their parents. With Brian, an intense self-absorption certainly is understandable, given his condition. The demands he made on us as parents took us to our limits of toleration.

The example of the cuckoo comes to mind. The mother cuckoo lays her egg in the nest of another bird, one that may very well be considerably smaller than the cuckoo. As the youngster hatches, he is the first to be fed because of his larger size, and because he was probably the first to hatch. Eventually, he throws his siblings out of the nest, and the parents exhaust themselves feeding this outsize nestling. A programmed sense of obligation to their genes keeps them going, unaware that their own genes long ago expired on the forest floor. On the one hand, there is a larger burden on the parents of a disabled child. And on the other, there is such a meager payoff for all that effort, such a puny sense of reward. The result is psychic exhaustion. The reservoir of emotional resources gets depleted.

On one occasion, Sue was so totally exasperated with Brian that she told him to get out of the car and walk home. They were on Ventura Boulevard several miles from home. At that instant, you don't give a damn whether you ever lay eyes on him again. Does that mean you don't love your child? On the contrary, because of the rejection of him by the rest of the world, you compensate with your own generous emotional embrace. This does not mean, however, that you don't occasionally bang against the stops and have nothing left for him.
One of the demands placed on you by your child is to be a perfect parent. Any shortcoming is immediately thrust back in your face. And you have to take this from such an imperfect child? With all his deficits, he remains an exquisite detector of imperfect parenting. One of the lessons we had to learn over the years is what we could genuinely hold him responsible for, and what was beyond his control. Often the distinction was not that apparent. Acts that appeared to be volitional were in fact neurologically driven.

This came home to me early on in an episode I am embarrassed to recall, but is an essential part of the story. Brian had a bad case of runny nose, and he was never near either a handkerchief or a Kleenex. He did what came naturally, which was to suck up air through his nose and retain the mucus in perpetual suspension. As this snurfing became more frequent, I progressively pegged out.
"Blow your nose, Brian!"
Snurf.
"Blow your nose, Brian!"
Snurf.
"BLOW YOUR NOSE, BRIAN!"
SNURF.
"Get a Kleenex and blow your nose, Brian."
Snurf.
I brought him a Kleenex.
Snurf.
I held it under his nose.
Snurf.
"Blow out, not in, Brian."
Snurf.
"OUT, Brian. Not in."
Snurf.

The legacy of my Prussian genetic heritage was taking over. I was going to have my way with this obstreperous child if it took me all evening. Surely he could understand such a simple instruction, and this is merely a case of intolerable stubbornness. I had not chosen the time or the battleground, but if this was the time, and this the place, then so be it.

The back and forth continued. I gave him time to comply. I reasoned with him. I thundered. I cajoled. I threatened. I promised. We reduced the issue to its simplest essence: Out, not in! By this time, Brian was a wimpering lump sitting on the floor in the hallway, saying nothing, but occasionally snurfing. I finally managed to rise above the situation and realize that this was not a child engaging in a dominance battle with his father. This was a child whose brain was caught in a kind of loop from which he could not voluntarily escape, much like a software subroutine that once it is finished goes back to the beginning and starts over again. In the case of the computer, you can do "Ctrl-Alt-Del" and start all over again. But in Brian's case, he would have to get out of the loop on his own. I was only making it worse. I was the command that simply re-initialized the subroutine.
It was a difficult lesson to learn. Brian was conscious; he was processing what we were saying. But he could not voluntarily act as he would wish! This was similar to what was going on with his violent episodes. Some part of his brain took over and he did things that he later regretted, and over which he had no control at the time. For his own self-preservation, he had to learn to distinguish between "self" and the "non-self" that was doing things he did not wish to do. The diagnosis of temporal lobe epilepsy first gave him permission to make that distinction. (In fact, he was so relieved to be told about the epilepsy that he told all his friends, effectively telling them, "It's not really me, guys, it's my brain causing all the trouble.") We also had to learn to make that distinction, so that we did not blame him for things that were not under his control. Since there was often a seamless transition from controlled to uncontrolled behavior, this was something we could only learn over time. At least we now had a framework in which to understand our son.

To understand your son is also to forgive him. As we learned that we could not blame him for the quirkiness and instability of his brain, for his genes, and for what fate dealt him, we also realized that the same thing held for us as parents. Whereas Brian demanded of us that we be perfect parents, we learned to accept that we weren't going to be perfect, and that doing our best was going to have to be good enough. The biofeedback training and its positive effect on Brian only served to confirm for both Brian and us that we were dealing with neurologically based phenomena. We learned to talk matter-of-factly about what we were observing from both the inside and the outside. This objectification of the problem was enormously helpful in dissipating the emotional baggage associated with such discussions. It gets the question of blame off the table, and makes for a mutuality of concern and of interest, as opposed to making it an issue of us versus him.

Brian continued the EEG training with regularity, and the positive changes accumulated. He became more conversational. He became overtly friendly to others. He actively sought out the company of others. He organized his school work. His grades came up. He was finishing his work. The decline in his medication dose also continued, and this had further benefits in terms of mental quickness and alertness. The dulling of his eyes disappeared. He seemed more alive, more present.

The Tegretol level was reduced slowly, as had been the case with Dilantin. However, in this instance Dr. Marshall was much more cautious. Before we would agree to any more reduction in medication, he wanted us to get an EEG done. Sue said that we were getting an EEG every week with the EEG training. "No, I want a real EEG." We made an appointment with Dr. Pellegrino, a neurologist in the same building, for the EEG. When Sue met with Dr. Pellegrino to review the results, he declared with finality: "This child does not have temporal lobe epilepsy, and never did." Sue suggested that perhaps the EEG looked rather normal because that's what the EEG training is trying to accomplish, after all. Perhaps the EEG was no longer the best indicator of the underlying pathology. This proposition required far too many mental leaps for Pellegrino, and he rejected Sue's suggestion out of hand. In our desire to persuade him, we almost neglected to notice that we had gotten what we came for. Clearly, he would tell Marshall that it was ok to reduce the Tegretol level! Since Brian manifestly did not have temporal lobe epilepsy, there was no need for the Tegretol at all. We did enjoy the irony. Within a single week, the pediatrician wrings his hands about reducing drug levels, and the neurologist declares there never was a problem in the first place. The reduction in Tegretol proceeded:
March 7: 850mG per day to 800mG.
March 21: 800mG to 750mG.
April 4: 750mG to 700mG.
April 18: 700mG to 650mG.
May 2: 650mG to 600mG.
May 16: 600mG to 550mG.
May 30: 550mG to 500mG.
June 19: 500mG to 450mG.
July 15: 450mG to 400mG.
Sept. 5: 400mG to 350mG.
October 10: 350mG to 400mG.
By September/October we had found the level of medication which Brian needed at this time to maintain adequate behavioral control. Over the next few years, this level would fluctuate, with a pattern of initial increase because of Brian's greater weight and activity level, and subsequently of general decline over the years down to a level of about 125mG. A neurologist is likely to say that 125mG is too far below the therapeutically effective dose (about 300mG) to be an issue at all. Not so! Brian came to know himself so well that he could tell not only the difference between having 100mG or 125mG on a particular day, but he had to divide this small dose into three portions so that the effect would not be too concentrated. Should one believe the judgments (based on literature values) of a neurologist largely out of touch with the patient, or should one believe the careful observations, accumulated over a long period of time, of the person who has learned to monitor himself? To us, averages over populations did not matter. We came to know what was true for Brian. It took us a long time to have the courage to disagree with the "ex cathedra" pronouncements of learned neurologists. But in the end the evidence spoke louder than doctrine.

The next stage in Brian's EEG biofeedback training in fact involved a growth in self-monitoring. Since his brain was not self-regulating properly, he had to complement it on the conscious level. The issues were more complex than one of either more or less medication. It became obvious to us, for example, that the quality of Brian's sleep had a great deal to do with how he did the next day. So a priority had to be given to scheduling sleep. Brian could not simply work into the night to finish a project without paying a great price the next day.
Then there was the issue of diet. We came to realize that Brian was extra-ordinarily sensitive to paprika and all-spice. Spices are of course selected for their ability to stimulate the nervous system. That's the whole point. For those whose nervous systems are potentially unstable, spices may be a particular hazard. Brian had to avoid chocolate at all costs. He survived on chocolate substitutes like carob. His occasional transgression with true chocolate gave him immediate notice that he could not be so cavalier about his diet.

So while the biofeedback training continued aggressively, it was no longer a clear-cut issue as to what was being contributed by the training per se to Brian's improved functionality. It did not really matter. The biofeedback had set him out on a voyage of discovery with respect to his own brain, one that was now multi-dimensional. The training continued to give him improved stability, allowing him to experience higher levels of mental performance and also allowing him to experience pleasure in being with himself, which some of us take for granted. Once such higher plateaus of performance are experienced, the falls from those heights, whether produced by dietary indiscretions, by lack of sleep, or by failure to take the medication, are progressively less acceptable. So the various aspects of his course of remediation, involving not only biofeedback, sleep and diet, but also exercise and attention to breathing, and the proper dose of medication, were mutually reinforcing. We did not know it at the time, but have since learned, that many epileptics have discovered similar strategies for themselves. (The behavioral management of epilepsy has even become a field of professional study, particularly in Europe.)

Brian's academic performance continued to improve, so much so that by spring of 1986 we investigated the possibility of his going to college. California Lutheran University offered the "Plus Program", by which students who were marginal academically but yet showed promise could gain admittance on a provisional basis. We took Brian there for an interview, and explained his history. He was accepted into the Plus Program, but the staff took great care to prepare him for the possibility of failure. Cal. Lutheran was close by, in Thousand Oaks, allowing Brian to continue his EEG training. It was also small enough for the faculty to take a personal interest in the students. In fact, freshmen were each invited to be part of a small social group in which a member of the faculty or staff participated. This eased the entry into the impersonal life of the university.
When Brian registered for his first semester in the fall, he was given a recommended set of courses. Because of his marginal academic status, they loaded him up with soft social studies courses. This was of course a mistake. Those are the areas where he would have the greatest difficulty. We recognized this, and changed his program to be heavy in math and the physical sciences, which we were sure he would master. He chose a computer science major. By the end of the first year, he was in fact near the top of his class in that curriculum.
When he started college, Brian also decided to keep a journal of his continuing preoccupation with his brain. During this time, we saw less and less of him, with the exception of the regular trip to Beverly Hills to obtain his EEG training sessions. These he was now undertaking once every week. Brian was also increasingly responsible for directing his progress, and our role changed more to being cheerleaders on the sidelines. So it is entirely appropriate that in telling the rest of the story we allow Brian to take the lead.

However, before proceeding there are a couple of other threads to the story which must be picked up. Once Brian began to benefit so obviously from the EEG biofeedback training we were encouraged to try the training ourselves. Sue, for example, had been suffering for years from hypoglycemia, a disregulation of glucose blood level. It sapped her energy level, and she was frequently ill. Years earlier, her energy level was so low that she was forced to abandon completion of her thesis work for her Ph.D. The death of her major advisor at Cornell had made it difficult in any case. UCLA was unwilling to transfer her credits. Nevertheless, she proceeded for a time with her research at the UCLA Brain Research Institute, being supervised by its Director, Professor Ross Adey. Eventually, her hypoglycemia made it impossible for her to continue.

In the course of a complete physical, a glucose tolerance test was administered, and diabetes was ruled out. The doctor did not take as significant that after consumption of the glucola, Sue was practically unable to move. She had been told to come back in a few hours for the blood tests, yet she had not the energy to get up off the couch. Sue took this as significant, even if the doctor did not. With the aid of medical student friends, she began to research the issue, to no avail.

Sue suffered with this condition until, years later, she came across the book "Low Blood Sugar and You", by Carlton Fredericks. There she saw herself described. The remedy was to be found in controlling her diet. Large amounts of either sugar, or foods readily convertible to sugar, caused long-term fluctuations in glucose level that had adverse consequences to energy level and to mental functioning. If one eliminated such a sugar challenge to the system, then such excursions could be avoided. This Sue had done, with good effect, when Margaret Ayers suggested she try the EEG biofeedback training. When I came home from work the evening after the first session, Sue announced that there was a new person in the house. Only after checking out the living room, etc., in puzzlement, did the grin on her face reveal that she was referring to herself.

She experienced what we came to call the "clean windshield effect", a new mental clarity and greater energy level. Others have described it as "cleaning out the cobwebs of the brain". After many sessions, conducted over the fall of 85 and spring of 86, Sue was able to relax her dietary constraints and function more effectively as well.

Kurt had been very hyperactive in school, and in social situations. Some years previously, when Kurt was about four or five, he went out for trick-or-treating on Halloween in a little policeman's uniform and moustache. By the time he came back, he was a "space cadet". He was totally wired, with fire in his eyes. He bounced off the walls, and was totally unmanageable. He had discovered food, and it was called "sugar". Sue was running a low-sugar household at the time because of her own hypoglycemia. So in the ordinary course of events, Kurt's behavior problem was not being triggered by sugar. At Halloween, he had gotten a kind of glucose tolerance test. And he had failed.

It was difficult to persuade Kurt at his age that his newly discovered food was not in his own best interest. But we prevailed. Now in 1985, we had a chance to try the EEG training with him. It had the expected effects. Over time, his behavior normalized, and his dietary constraints could be relaxed as well.
And then there was me. On my camping trip with Brian's seventh grade to Yosemite back in 1981, I had imprudently participated with the kids in a game of jumping over a pile of tires. I ended up coming down on my head and neck, with a whiplash injury in the bargain. The next day I could not stay awake driving. I had also become much more irritable. Gradually, these symptoms ameliorated all by themselves. However, here in 1985 my EEG still showed spikes typical of head injury. These were eliminated with a few EEG training sessions, and what remained of my irritability and hyperexcitability appeared to melt away.

We all had our own personal experiences with the EEG training that helped to persuade us of the generality of the technique, and of its efficacy. We also came to this technique with our professional backgrounds-Sue's in neurophysiology, and mine in physics and engineering. With all of these experiences with the technique, we were increasingly motivated to get involved in making this technique more readily available. We were both prepared to change our careers to do this.

Next: Brian's Diary