When he was fifteen, as he was then, his six-year-old sister was far more capable than he was, and in fact often offered to help him. The range of tasks he was reliable at was so small that getting him to flush the toilet was a major accomplishment. I was grateful each time he did it. And the scary thing of course was that along with the total irresponsibility was an equally alarming lack of awareness. He would leave something highly flammable touching a lightbulb, or let a wobbly candle burn too low, or a child hang out a window. He was dangerous to himself because of it, and inadvertently to others. But to answer the doctor’s question, YES, I had said no to Nicky, and it got me nowhere.
I made appointments with four new psychiatrists to see what I thought of them, before I burdened Nick with the same task. I wanted to filter them for him, because new people and new things, new places and new challenges made him visibly nervous. In fact, Nick didn’t do well with stress or overstimulation of any kind. He couldn’t travel with us anymore. Our household, with all its kids, pets, staff, visitors, and the normal comings and goings of a flock of children, seemed to make him extremely anxious. Whereas the rest of us were used to it, the older he got, the less able he was to cope with the stimulation and confusion.
So as to spare him stress, I wanted to do the groundwork for him by interviewing new psychiatrists. And all I could think of as I went from one appointment to the next was a scene in the movie Baby Boom, where Diane Keaton is interviewing nannies. One is wierder than the next, ranging from women fresh out of cults to others who looked like they should have been carrying a whip and wearing leather. The psychiatrists I saw were not quite as exotic, but some of them were just as funny.
I particularly liked the one who said he felt our entire family should be in therapy, and extended family as well, aunts, uncles, grandparents. I looked at him in amusement, as I explained that our immediate family consisted of eleven people, the youngest of whom were six, seven, and eight years old, and the others only slightly older, and hardly responsible for Nick’s problems. And if we were going to pull in “extended family,” it would entail flying in nine additional people from as far away as London, New York, and Tokyo. The prospect of that didn’t seem to faze him. All in all, he would have been interrogating twenty-two people before having enough insight to address Nicky’s problems. And he looked at me straight-faced as he said it.
Another one looked so depressed that it depressed me to talk to him, and I didn’t think Nick would like him.
The good ones (I assumed) weren’t taking new patients, the more offbeat ones seemed to have plenty of time for Nick, and I could see why, but I just didn’t feel comfortable with them.
But the man Julie found for us sounded terrific. Dr. Seifried was intelligent, sensitive, practical, and reasonable. In a physician-patient relationship with a boy as troubled as Nick, at least one of them had to be sane, and for the moment it didn’t look like it would be Nicky. We spoke on the phone at length for the first time, and he told me very sensibly that it sounded like a chemical issue with Nick, and more than likely the family had little or nothing to do with it, given what he knew about us. He had no interest in examining the rest of the kids, John, me, the birds, the dogs, or Maxx’s rabbit. He focused entirely on Nick, and said that problems like his are usually not caused by the family, or the environment they live in. “In fact,” he said, much to my delight and surprise, “if it’s chemical, even I may not make much difference to him. What he probably needs first of all is the right medication.” Hallelujah! I wanted to cry as I listened, or kiss him. I had known for a year that the right medication for him was the real issue.
Nick started seeing him as soon as he got back from the hospital, and he saw Nick frequently, before coming to see me at the house. And I liked him the minute I saw him. He had a happy, intelligent face, warm eyes, an easy smile, and a great sense of humor. He was incredibly bright, immensely practical, and it was obvious that he knew what he was doing. And what’s more, in the sessions that he had with Nick, Nick really liked him—a real bonus.
He didn’t mince words when he discussed Nick’s problems with me. He had read all the material we had, the first evaluation, the second one done at the latest hospital, reports from his school, and had asked me a lot of pertinent questions. But his diagnosis was pretty straightforward. He believed Nick had Attention Deficit Disorder and depressive illness, and there was a possibility that he had some slight neurological damage. There was also a chance that his experimentation with drugs for the past three years might have caused additional damage. There was also the possibility, as we’d been told before, that Nick was atypically bipolar, which had made it hard to diagnose. Apparently manic-depressive teenagers are harder to diagnose than adults, which could have been why his previous psychiatrist had been hesitant about his diagnosis. Another thing that had troubled me for years were the comments of well-meaning friends, who said that Nick was just a “normal teenager” or a boy with “a lot of spirit.” My efforts to convey how deeply troubled I felt he was were dismissed, which left me feeling lost and lonely.
I had a sense of overwhelming relief for about twenty seconds as I listened to Dr. Seifried. The suspicions I had had for most of his life were correct. There was indeed something wrong with Nicky. Something pretty major. But it hadn’t been my imagination. He was a mess, in fact. But it was such a relief to hear another human being say it out loud and validate my fears. But the relief and excitement I felt was instantly swept away by a sense of panic, and a feeling of “Oh, shit … now what do we do for him?” That was an important question, and it didn’t have an easy answer.
As he had suspected from the first, the doctor said it was primarily a question of chemical readjustment. It was all about medication with Nick, how good it was, how well it worked for him, and finding the right ones. It had nothing to do with my toilet training, or John’s, or the children’s, “telling him no,” or writing contracts. For the most part, it had to do with chemicals and medications to balance Nick’s system. He would get psychiatric treatment too, of course, to try and reason with him, keep him balanced, and try to deal with his poor impulse control, although that was chemically generated too. All we wanted was to help him lead as normal and happy a life as he could. But most important of all for him, essential in fact, were the medications.
“How do we find the right ones?” I asked, somewhat innocently hoping that there was one magic pill that would do it. For Nick, as yet they hadn’t been an adequate solution. The medications he’d taken hadn’t made enough difference for him.
“That’s a good question,” the doctor said. “To put it scientifically,” he said with a smile, “from now on, we throw a lot of darts against a wall and hope some of them stick. This is a very crude art form, and it’s the best we can do. Nick is going to have to be patient.” Patience wasn’t Nick’s long suit, nor mine, but it sounded as though we didn’t have much choice here. What helped was that the doctor was so honest and straightforward. I liked him more than I had ever expected. He had given me relief, comfort, validation, reality, hope for Nick, and a whole new set of problems to contend with. I tried to talk about the long-range implications of Nick’s disease, but the doctor felt it was too soon to do that. There were a lot of things to ascertain first, and Nick was still very young. He said that it was very unusual to be clearly diagnosed manic-depressive at fifteen, which was why all the doctors we had seen had been loath to do that. Incorrect diagnoses can be made that way, and determining him as bipolar would be a major pronouncement. It was even more impressive when you thought that he had probably been that way fairly overtly since he was roughly twelve or thirteen. As it turned out, it was a very early onset of the illness, and as it usually manifested itself in an individual’s early twenties, I couldn’t help wondering what it would be like for Nick when he reached that age. With a ten-year head start on most people who manifest mental illness, would he be that much worse, or were we likely to have brought the disease to heel by then, or
at least taught him to live with it with the proper medications? The doctor I was already so fond of told me that there was no way of knowing, but I had a vaguely uncomfortable feeling that he was not overly optimistic. But I was not ready to hear it. I had heard a lot for one day, and despite my familiarity with Nick’s problems by then, and the relief I’d felt to hear them given a name, I was reeling from the severity of the verdict for Nicky.
As I would come to frequently over the next four years, I mentally compared Nick’s problem to juvenile diabetes, which is more severe usually than adult-onset diabetes. But it is a disease that requires constant and conscientious administering of medications to keep the patient alive and functioning. It’s not something you can do casually, it is a life-threatening disease, as Nicky’s was, and it is also far more serious when manifested at an early age in children.
Thinking that made me ask the doctor even more seriously about the kinds of medication Nick would be taking, but he wasn’t sure yet. He didn’t want to put Nick on anything as major as lithium for the moment. He wasn’t absolutely convinced it was appropriate yet, and taking lithium at Nick’s age presented a lot of risk for him, particularly a potential challenge to his kidneys. Nick was going to have to live with his illness for a lifetime. And he was going to be dependent on medication for the rest of his life. There was no cure for Nick’s illness, particularly if in time he developed into a typical manic-depressive. The only thing I didn’t understand at that point was how readily manic depression could be fatal. I had no idea then of the high suicide rate among people suffering from bipolar disease. I have now been told informally that 60 percent of all manic-depressives attempt suicide, and 30 percent are successful. Had I known that then, I would have been panicked, though I’m not sure I would have done anything different. We were already doing everything we could for him. But I thought we were fighting for the quality of his life. I did not understand then that we were fighting for his survival, nor did I ever understand how high the odds were that we would not win that battle.
The one thing I felt certain of, as I listened to what Dr. Seifried said, was that I didn’t feel any stigma attached to Nick’s problems. I felt sadness for Nick, and what he had been burdened with, and relief to have at least a slightly better idea of what to do about it. But I wasn’t ashamed for him, or for us. If anything, I felt more protective of him than ever, and grateful that we had come this far and finally found a doctor who, I believed, would help him.
The medication the doctor wanted to try on Nick was Prozac, and if he did well with it, we were going to try adding another medication to it later, or even several, but the doctor had not yet determined which ones. We were hoping that the Prozac would help him with the depression. As the doctor had said, it was now a crapshoot we had to learn to play, of trial and error. And the one thing we agreed on was that we were not going to discuss this with Nicky, he was not ready to hear it, and still far too fragile. All he needed to know for now was that we were switching him from his current medication to Prozac.
And at first, he seemed to do well on his new medication. He liked his new psychiatrist a lot, thought he was “cool.” He liked his new school, and his spirits seemed to lift, probably due to a variety of factors. Julie was still seeing him at the house five days a week, and on weekends if there was a crisis. A crisis could mean an argument about a concert he wanted to attend, or the fact that he hadn’t brushed or combed his hair in months. He had decided to grow “dreadlocks,” which with his silky fine hair was a cultural challenge. All he looked was homeless, but he was happy about it. I was somewhat less so, but it was the least of his problems. I was more concerned with what was under his hair, rather than how he combed it. Or maybe I just say that now, there were times when he drove me nuts with his unkempt appearance. I still had fairly mundane standards, although Nick had taught me many things about “norms” and “standards.” And sometimes he looked cute, even to me, in his crazy outfits.
As spring came, he seemed to be doing better, though he was still depressed at times, still difficult much of the time, still couldn’t sleep at night. He roamed the house like a hamster in a Habitrail, which I know now was classically manic-depressive. It is typical of the disease to turn day into night and vice versa, which meant he was often awake till four and five A.M. and near-comatose when we tried to wake him up in the morning. The medications challenged him in that area too. The Prozac often kept him up at night and had to be administered in the morning. We hadn’t added any other medication to it. His doctor wanted to proceed slowly, but he was ready to add to it if necessary. I felt that working with Dr. Seifried was entirely different from the other psychiatrists we’d worked with. He was readily available, acutely interested in Nick, and well aware of, and sympathetic to, the challenges we were facing. I had a list of phone numbers for him, which even now cover an entire page in my address book, including his sister and parents in Ohio. And when I called him, he would return my calls within hours, or sometimes minutes.
The correct dose of the medication Nick was on was a constant issue, and one we fiddled with for quite a while until we felt we had the right balance between too much, which made him jumpy and anxious, and too little, which didn’t help him and left him depressed and lethargic. But he was clearly less aggressive, and less acutely unhappy than he had been. It may not have been the perfect solution, but it was helping.
And rather optimistically, Julie and I decided Nick needed something to do in the summer. It wasn’t good for him to just languish in Napa. He wasn’t mature enough, reliable enough, or well enough to handle a summer job, he was too mercurial and about as responsible as a ten- or eleven-year-old, at best. So although he would turn sixteen in May, a summer job was out of the question. But lying around in Napa, isolated from his friends, with nothing to do, was likely to depress him. So we began a search for a summer program that would suit him and keep him busy.
As usual, Julie threw herself into the project with her usual zeal, and came up with a million suggestions. The trouble was, Nick was tough to place. And even on medication, not easy to manage. His impulse control was still negligible, and he would do almost anything that popped into his head, if it appealed to him. Only weeks before when visiting Julie’s house, he had decided to slip out and take a walk, and had done so on the freeway, totally unconcerned with the potential danger. He had no real sense of risk to himself, and Dr. Seifried had explained that Nick’s perception of pain was also likely to be somewhat imperfect, not due to the medications he was on, but as a result of the ADD and possible manic depression. He had already proven that to us, in fact, when he decided one night, alone in his room, that he didn’t like his hair, and had taken first scissors, and then a razor to it, chopping it all off and giving himself, he thought, a home-made buzz cut. But the buzz cut didn’t come out right, according to him, no surprise. So he decided to shave it all off, and in doing so, slashed his head in about a hundred places. He appeared in my room, with blood dripping down his face, and looked as though he had been stabbed. He was in tears, not because of the injuries he’d caused, but because he didn’t like his hair. And I cried with him, because it broke my heart to see such plain evidence of how sick he was. He wore a hat for weeks to hide the scabs. But it had brought home to me once more that he was potentially a danger to himself, if not to others. And with an imperfect perception of pain, he was just as likely to slice a finger off, or part of one, while slicing bread to make a sandwich. People with Attention Deficit Disorder apparently do not always notice it when they’ve been injured, and just keep on going. He had to be constantly watched, which again made it a real challenge to find the right summer program for him.
The problem was finding a camp for normal kids, that was willing to take responsibility for administering his medication. He could not afford to miss a single dose, just like a diabetic. But when we talked to the camps, one by one they told us that they were not equipped, or prepared, to take on a high-risk, high-maintenance situ
ation like Nicky’s. Which ruled out any kind of summer program for normal kids. We thought of Outward Bound as well, at John’s suggestion, but they explained that a boy like Nick would not only potentially endanger himself, but the other boys who might rely on him. He was a great kid, but there was no hiding from the fact that he could not be relied on.
Which left us only programs for disturbed children, and there were plenty of those. But we discovered rapidly that they were attended by children or teens with far more manifest disturbances than Nicky’s. Outwardly at least, Nicky was more functional than they were. Which left us, once again, nowhere.
Until we found what Julie, John, and I thought was the perfect program. We were nothing if not creative. Looking back on it now, I really wonder how we did it. It wasn’t until I started writing this, looking through records and files, and pulling out memories from my head, that I realized how many things we tried. How many crazy, and not so crazy, schemes we concocted to help him.
But this time she had managed to find an outdoor camp which catered to “special needs” children. It seemed to focus mostly on kids who had used drugs, but they said there were some other kids like Nick there as well. So it seemed an appropriate choice for Nick. It was all boys, and would be a healthy, rugged experience, and together, Julie and I convinced him he’d enjoy it, although as Nicky loved to say, he hated nature. It was only a four-week stay, and I was going to try and take the younger children on vacation during the time Nick was away. And sadly, there was no way he could join us. He just wasn’t up to traveling with us, and hadn’t been for years, and even he knew it.
I don’t mean to portray to you in all this that Nick was sitting in his room, empty-eyed and weeping for all these years. On the contrary, outwardly, to most people, he seemed like an ordinary teenager, obstinate, wearing crazy fads, unruly. He had opinions about everything, which he voiced willingly, no matter how unpopular they were, he had friends, and he was more knowledgeable than ever about his music. But the fact was that behind that carefully painted scenery, there lurked a host of demons. Nick knew it, and so did we, as did Julie and his doctors, but no one else did. He covered it well for short periods most of the time, and most people just thought he was difficult. He was just a teenager after all, wasn’t he? And his brilliant mind, good looks, and charm seduced them. But to those close to him, there was no denying his illness. And on the rare instances when I would confide my concerns to close friends, they would usually pooh-pooh it by saying all teenagers were difficult, and Nick was no different. But Nick was very different, and we knew it. No other teenager I knew required a team of people to keep him dressed, clean, and safe from slicing a finger off when he made a sandwich. No other teenager found it as great a challenge to turn a light on or off, close the freezer door, or flush a toilet. No other teenager was awake all night, tortured by his private demons. But Nick covered it as best he could, and we did the rest for him, and helped him to look “normal,” whatever that was.
His Bright Light Page 15
