The doctor and I talked about it, Julie was constantly at the house, and within a month she made a suggestion that was anathema to me, and would surely change all our lives, ours, hers, her family’s, and Nick’s. At first, I rejected it out of hand. I wouldn’t even consider what she had said. Her suggestion was that Nick come and live with her family, which I knew would be a huge sacrifice for her, and seemed like a terrible loss to me.
Julie had two children. Serena, who was eight at the time and a son, Chris, who was four. She had discussed it with her husband, Bill, who was willing to give it a try. I wondered if he realized what they had offered us. If Nick went to live with them, I knew only too well, they would never have another moment of peace, or privacy or tranquillity. And their house was far smaller than mine. There would be no way for them to escape him for a quiet moment. Even in my house, Nick seemed to take up and fill every inch of space, and I knew he would utterly change their lives. My own children came to dinner now with a look of anguish on their faces, knowing that every dinner hour would be a forum for Nick to create a crisis and act out.
But, however willing Bill and Julie were to take him on, I was adamant about not giving up my child. This was his home, we were his family, I was his mother, and as such I was bound to do whatever I could for him, close at hand, until my dying day. Moving him out felt like total defeat to me. But what made me consider it at all were the kids. I knew that if Nick got any worse, or even stayed the way he was at the time, there would be too little of me left for them. I never had enough time for them anymore. I was too busy chasing after Nick, arguing with him, and trying to be in fourteen places at once to make sure that he was safe. He was virtually unliveable for us, and now when he was up all night, he would pace our bedroom and argue with me for hours. About concerts, plans, his hair, his friends, his dog, his food, his room … anything that came to mind. And when he wasn’t manically attacking me verbally, he was holed up in a black mood in his room, and I was terrified of what he’d do. The situation was grim. And I realized that if I could not help him, I owed the children more than this nightmare. I couldn’t sacrifice them to him. Until that point, I had been convinced that I could juggle him and them. But through no fault of his own, he was making that more and more impossible for me, and I knew they were getting the short end of the stick, and as long as he was there, they always would. As much as it broke my heart, the time had come to make a choice, them or him. I had no intention of abandoning him, or “giving him up,” but living under one roof with him full-time had become a nightmare from which none of us could wake up. The children above all were paying a high price for living with him. And my marriage to John had certainly been impacted by him, though I couldn’t blame its demise on him.
It was a decision I came to agonizingly. And in my mind, it was perhaps the worst thing I ever did. I cried myself to sleep each night (when Nick finally left my room in the wee hours). I didn’t want to let him go. I wanted to be there every moment of the day for him. I had promised that to him the first time I laid eyes on him, and relinquishing him now to someone else, particularly in view of the condition he was in, seemed like the ultimate failure to me.
I discussed it with my therapist and his, and everyone felt it would be best for him, if not for me. Our house was too big to keep good track of him, even with two attendants chasing after him, and the normal turbulence of a busy family seemed to make him anxious rather than give him peace. At least we could give it a try, they urged. But I cried every time I thought of it. In my eyes, if I let him move out, I was failing him. I felt as though he were two and not sixteen, and in some ways he was. He was still my baby.
Sending Nick somewhere else to live is one of the few things I regret in my life. And although it worked out wonderfully for him, and he was happy there, I felt guilty about it for years. For some reason, I talked to him about it five months before he died. With tears running down my face, I apologized to him, and told him how much I regretted hurting him. He took me in his arms, and told me it had been the best thing for him, and how much he loved me. And I think he meant it. I was so glad I said it to him, knowing that I had said it, and that he didn’t resent me for it, somehow freed me. He called it “tag-team mothering,” and it was clear to me for all the years he lived with them, how much he loved the Campbells.
It was an arrangement that worked well for him. The Campbells were utterly selfless in their sacrifices for him. In the end, they were what kept him from having to exist in an institution. They made it possible for Nick to grow up happily, to have a life that worked for him, and to allow my other children to flourish without the pressure of living with their brother’s illness every day.
It only worked because of Julie’s enormous capacity for loving him, her generosity of spirit, and her constant fairness about respecting me as Nick’s mother. She never tried to take my place, usurp my role, play games with me or him. She upheld me as his mother from first day to last, and we developed a profound love and respect for each other, which now transcends him. It really was tag-team mothering, just as Nick said. He said we ought to write a book about it one day, and perhaps this one will serve the purpose. But we used to laugh sometimes about the fact that it took two women to mother him. And when he was with me, I would call her in a high squeaky voice complaining about some crazy thing he’d done, and she would calm me. When he was with her, she would call me five times a day, sounding hysterical and telling me he was driving her insane. But somehow we found the perfect balance that suited him remarkably, and worked for us. It was a juggling act of Herculean proportions. But all of our decisions were made jointly. We maintained a united front for him, every inch of the way, and when we disagreed about something, which was rare, we worked it out and compromised. We taught each other a lot about the fine art of mothering. I learned new skills from her, and she learned old ones from me. I made her more conservative at times, and she taught me to give him independence, self-respect, and freedom.
We shared him at first, and he spent several nights at home, like a form of joint custody. But in the end, he was happy to stay at her home all the time. The truth was that our house and its constant activity made him too nervous. There were too many people, too many kids, too many dogs, too much confusion for him. He was happier at Julie’s, although he came home frequently during the day, and at night for dinner, and just to hang out with his brothers and sisters. And he spent the night on holidays and Christmas.
But if I had known how well it would work out, I would have cried far less on the day he left. He was a lucky boy to have had two women to care for and mother him and love him so deeply. The tag-team mothering we invented for him, and managed for three years, was a brilliant solution for Nicky. We all benefited from it one way or another, especially Nick. And I know from everything he said how much he loved it, and Julie, till the very end. We were a great combo for him. His tag-team mothers.
And Julie’s words about me echo everything I feel about her:
I wanted to share some of my thoughts and feelings about Nick and Danielle. First and most importantly, I want to make it clear that I could not have done or dealt with Nick without complete and constant support from Danielle. Danielle is truly an amazing person. She taught me so much about being a good mother and doing the right thing. Instead of taking the easy way out. Before Nick came to live with me, a lot of people had recommended that she commit him to a mental institution. He had failed every program we put him in. He had been kicked out of every school we had found. The home contracts we had tried had failed, and Nick was completely out of control. It would have been very easy to commit him, and truly believe she had done everything possible to help. But instead, she allowed him to move in with me. Danielle never gave up. And even though he lived at my house, she was literally involved in all decisions that had to do with Nick. I can’t remember a time that I couldn’t get a hold of her. If Nick wanted to do something, and I wouldn’t let him, he would follow me around the house arguin
g for hours. About every couple of hours I would call, ranting and raving that he was going to make me crazy. So she would proceed to argue with him for the next few hours. By then I would have gotten my second wind. Then I would take the next shift. When I think of some of the things we went through with Nick, I’m amazed at how we coped. But I believe it was because we truly supported each other. We had an agreement that if one of us felt strongly enough about something, the other one would support it, regardless of how we felt, and then present it to Nick as our own belief. Because of this, Nick could not divide and conquer us.
Nick had an incredible mind and he could convince himself and most people of anything. When I think of the stories he would tell about us to justify his actions, it would blow my mind, and more than that the fact that he could get people to believe them. When people came over, I always wondered what wild tale they had been told about me. One time when he had been put in a hospital for a time out, he had convinced the staff the only reason he was there was because I had broken my jaw and was grumpy. The fact that he had been kicked out of school had absolutely nothing to do with it. Another time he had convinced his group and counselor that his mom had a headache so she made him get his long hair cut off. The fact that he had been brought to their hotel room by night security for stealing and driving and wrecking a golf cart, was insignificant. Needless to say, the early years with Nick were a challenge.
I don’t know what force brought Danielle and Nick to my office that day. But I do believe it was fate and that we were supposed to find and help each become better and healthier people. And in the end, I believe we all got as much as we gave. I loved Nicholas so much and I admired the way he fought every day to be happy. And how hard he worked to break down his defenses and let us in. We did it one brick at a time, and at times he would let three down, and then be startled by his vulnerability and put six back up. We learned to see Nick as a person and not a behavior problem, and I believe that’s when he started to believe he had worth.
One time, he had done something wrong so he was not supposed to go out. But he was really looking forward to going to this concert. We had been locked in this pattern for about year, any time Nick really wanted to do something, he would get in trouble right before and not be allowed to go. So he would go on feeling persecuted and hating the world, and we would feel sad and frustrated for him. So this one day, we decided we would honor his feelings of really wanting to go to this show more than his acting out. I told him we were going to let him go. He asked why and we just said because we could see how important it was to him, and that he had value. After that, things began to change slowly. Nick started to explain how hard it was to control his impulses, rather than saying he just, “didn’t give a fuck.” I started giving him little exercises to try. I remember one was whenever Nick did get in trouble, rather than call his mom and apologize and telling her how bad he felt for letting her down, he would end up cussing her out. So we would call her and put on speaker phone so I could hear the conversation and I would write down what he was to say. And the amazing part was he would say exactly what I wrote. That was when I realized that Nick really did want to do and say the right things, but that he didn’t know how. Inside he felt so inadequate in dealing with this world. He had such poor impulse control that he often did and said mean things. Then he felt so bad and he had such a limited ability to feel and own his pain that he would convince himself that it was everybody else’s fault but his own. And his justifications were good. Luckily for me, God had given me a brain not only as good as his, but also as fast.
We would debate for hours over the simplest things and somewhere along the way, he started to listen and learn. And I listened and learned. And Danielle listened and learned. And we started to become the people we wanted to be, and we helped each other. Nick used to teach me how to spell and use proper grammar. Danielle taught Nick how to love and be able to tell the difference between a friend and an enemy. I taught Nick to think more with his heart instead of his head. Nick taught his mom that sometimes there are no answers to the questions. If I had to do it all over again, I would do it all again and probably in just the same way. Danielle and Nick have given me way more than they took. Even though the day Nick died, and for a few months afterwards, I truly could not figure out how to go on. I was so paralyzed by the loss. Slowly I realized that to love and trust so completely, and be loved and trusted so completely, is a gift that only comes around once in a few lifetimes. While the pain is temporary, the love is permanent. I love you, Danielle, and thank you for sharing your son, your unconditional love, and most of all for teaching me the true meaning of integrity.
14
A miracle at last
While I found psychiatrists and new solutions for Nick, and drove endless miles to visit him in hospitals, and Julie learned how to live with him, hire his nurses, and fold his laundry, John provided, at times, something even more important. As a mother, I deal in the practical and the concrete. I buy shoes for the kids, take them to the dentist and the doctor, watch them at ballet, make peanut butter sandwiches, and buy them new toys when their old ones get broken. I am always there for them. And what I offer them is pretty straightforward.
John’s real strength is sometimes more esoteric. He chases down ideas until they become real, pores over articles and discovers new drugs and treatments for what ails us. He hunts down pharmacologists, hears about new medicines, and comes up with some pretty wild ideas. Like all people who live together, I often ignored him. It’s difficult to focus at times on some new cure for malaria, which no one has at the moment anyway, when I have to buy the dog a new collar, and can’t find Zara’s other sneaker.
But John is an absolute bloodhound about things that intrigue him. Only a few months before Nick died, John went to see a psychopharmacologist at Stanford, and not only discovered an adverse reaction between two of the drugs he was taking, if a third one was added, but researched some entirely new drugs for Nicky. Unfortunately, we never got the chance to try them.
But shortly after Nick moved in with Julie, we heard of a doctor at UCLA, who specialized in manic depression and Attention Deficit Disorder. We discussed it with Dr. Seifried, who encouraged us to see him. And I believe the doctor in L.A. suffered from ADD himself, and was apparently brilliant on both subjects. In truth, he would change the quality of Nick’s life forever. Without his visit to the doctor at UCLA, I suspect Nick’s life would have come to a tragic end far more quickly than it did.
They sent a hundred-page questionnaire for us to fill out about Nick. And I did it because I was the only one who had most of the information. There were a vast number of questions about my pregnancy, the delivery, and the first years of Nicky’s life, some of which I had even forgotten. They needed other information as well, and I referred to the thick medical files we had on him. By then, Nick’s medical records looked like the New York phone book. With the questionnaire in hand, all filled out, John and Julie went to L.A. with Nick and the meeting went very well. The doctor didn’t waste any time, having reviewed our answers to his questions, and after talking to Nick, he wrote out a prescription for lithium. He said he believed Nick was manic-depressive. It was the first clear diagnosis we’d had. He said that if lithium was inappropriate for Nick, it would do nothing for him. If on the other hand it was the right solution for him, we would see a miracle within three to four weeks. His blood levels would have to be monitored at first to establish the right dose for him. It sounded vaguely complicated when they told me about it, but well worth it, despite a potential risk to his kidneys. But by then we felt we had no choice. It was his kidneys or his life.
The lithium was worth a try at least, and by that point, in order to improve the quality of his life, I was willing to risk his kidneys. His kidneys wouldn’t be much good to him if he committed suicide, or eventually wound up in an institution. It still seemed like a possibility, and one I was willing to do anything to avoid.
Nick began taking the medication i
n November, a year after he had started taking his first medication. And he could still take the Prozac he took with the lithium. In fact, the doctor in L.A. thought it an ideal combination, and Dr. Seifried agreed with him. He was totally in favor of trying the lithium on Nick and agreed with the L.A. doctor’s diagnosis. Nick was beginning to seem truly manic-depressive by then.
Lithium allowed Nick to feel and believe that he was normal. But the prospect of taking it, and facing the fact that he had a disease, must have been endlessly traumatic for him. The night he came back from UCLA with the prescription in hand, he went quietly to his room and then announced he was going to jump off the roof. Fortunately, we were able to calm him down quickly. But after a fairly pleasant day in L.A., that was his immediate reaction. It reminded us yet again how badly he needed help. But from that day on, there was no further talk of suicide in his daily life, or in his journals.
Nick was nervous about taking the lithium, but nonetheless submitted himself to constant blood tests. Once or twice he said it was a dumb idea, and insisted he didn’t need it. He had denial about being manic-depressive and the lithium would be the final test, we realized. If it worked for him, it would prove the acute chemical imbalance we had long since suspected. It was the final lap of an endless witch hunt. And trying to pretend it wasn’t as important to us as it was, we all went about our business. It was difficult not to watch Nick like a laboratory experiment and he must have felt under constant scrutiny, which he was. But he was back at school, visiting us at home frequently, and enjoying playing with the band he was still in, Link 80.
But there was no denying the results three weeks later. Nick was a changed person. Happy, good-humored, sane, well-balanced, calm, and getting A’s in school. The miracle had worked. The idea had been brilliant. Since I am violently allergic to penicillin and it risks my life, I have never thought of it as the miracle drug everyone else claims it is. But there was no question in my mind about lithium. For Nick, it was a miracle drug. Our long search for help had paid off for him. It worked! It helped him! And with the wonder drug it became for us, and for him, a whole new life began for Nicky. After what I saw it do for Nick, I will forever sing its praises. It made him feel a little queasy at first, but he got over it. And we had to keep trimming the sails a bit, adjusting the doses, but it gave him the opportunity for a life he would never have had otherwise. It gave him normalcy, and a chance for a productive life, which he took full advantage of from then on. And in no way did it impact his kidneys.
His Bright Light Page 19