The first time It happened, I thought It was the flu or something. I was 12 and it was summer. We were at the beach for the enforced family fun vacation, and I suddenly felt nauseated, sweaty, and couldn't remember where I was - just for a second. I took a deep breath, and felt my feet again in the sand. So, I was okay. Just then, I heard It. It sounded like a cartoon character's voice and something from Star Trek - one of those hideous aliens who digest people cell by cell. But, It was also familiar - like if I could just look around the corner, I'd see someone I knew. It said stuff like, they hate you, you're a piece of shit, they'll get you, you better hide, you don't belong here, you'll never make It, they hate you, they know you hate them. But It was like wind - every time I tried to listen more closely, It went away. I pretended like It didn't bother me, but I was so scared, so scared. I believed It. I knew It was right.
      It didn't happen again until a week later, our last night on vacation and I was really sorry to be going home. Everyone was yelling at each other about packing up and getting ready to go. I went outside to hear the waves soothe me, and It came back. Same words, scarier voice - higher sometimes, deeper others - not human, very human just beyond the sounds. I tried to get Mom alone to tell her, but she was too busy, and there were other people around and I was embarrassed. I didn't sleep that night, or the next. I thought that when we got home It would be gone. It was right there. I was so tired, so scared. I tried to tell Mom. Cried so hard I couldn't talk. Told her I was sick and needed to go see Dr. Banks - sore throat, the old stand-by. She took me - she must have known.
      There was the smell I hated and loved in the pediatrician's office - loved the clean part, hated the alcohol part that meant a shot in the butt. When I saw Dr. Banks (I loved her freckles) I started to cry again when we went into her office (alone, I asked Mom if that was okay) and didn't stop for what seemed like 6 hours. Her white coat was starchy and stiff, but I liked the cool feel of her sleeve around my shoulders. I told her about It. She listened and held onto my arm, just gently. I was making a run for it - could I get away from It? I didn't know the rules of It yet.
      Dr. Banks told me not to be scared anymore, that she was going to help me make It go away, and that she was smarter and stronger than It. After I calmed down, she asked me if we could tell Mom, and I agreed - I was afraid Mom would be mad at me for not telling. Mom was great - at least in the office. Dr. Banks said she wanted me to go see a friend of hers, a psychiatrist, who knew a lot more about It than she did. She said she'd go with me the first time. She called up and made the appointment right there, even though Mom was picking at her ankles the way she always did when she was worried and mad. All hell broke loose when we got in the car.
      Mom cried and yelled at me the whole way home. Why didn't you tell me? Why did you embarrass me in front of Dr. Banks? What does Dr. Banks think of her? You sound like a lunatic. What would she tell Dad and the other kids? On and on and on and on. I begged her not to tell Dad or anyone. Begged her. Pleaded like I had seen people do in movies. I don't think she did that day actually. Mom and Dr. Banks and I went to see Dr. Evans in a couple of days. At school, I pretended I had a dentist's appointment. I had a lot of visits from It, and didn't sleep much. I was staying in my room all the time anyway. If I stayed very, very still, I thought I could keep It away. The rules of It kept changing. I didn't really like Dr. Evans much at first, but when he asked me to play scrabble with him (I was very good at scrabble for my age) and didn't ask me a lot of private questions at first, I felt better. Dr. Banks told Dr. Evans what I had told her so that I didn't have to. I really appreciated that. She also told him that I had lost weight (I was proud of that too!) and that my grades in school were not straight A's in the last period - first time ever I didn't get all A's. Bummer.
      So, let's fast forward. I went crazy for a while - well, a few whiles. But, Dr. Evans, Ben (just to me, he made everyone else call him Dr.), Ben spent time with me three times a week for about five years and he gave me some pills. One time I had to go away because things were really bad, and Ben came to see me every day. Dr. Banks came once a week. I went to this place that was like a cottage and stayed with a nurse named Glenn. He just let me be when I needed to, and talked with me or hung with me whenever I wanted. I had my own room and could go outside whenever I wanted. He cooked for me at first, and then we cooked and ate together. I could watch TV, or listen to my music, or just sleep. I stayed there for three weeks, and when I felt like I was in control and didn't want to die anymore, I went home. I've been back twice. I know that if I ever need to go again, I can.
      So, now I'm 20. I have schizophrenia. It sucks. But I take my medications (usually), and see Sally, 'the New Ben' I call her, my grown up shrink, every two weeks. We talk sometimes; sometimes we just go out for lunch or dinner. Sometimes she takes me along when she runs her dogs. When I feel crazy, I call her, or I call my friend Tim in the co-counseling group I belong to. I'm a junior in college now, and am thinking about being a therapist - but maybe I'll get over that and do something more useful. I moved out of the house. I see my family a couple of times a year, and it's still a bit rugged, but tolerable. Mom still cries when she sees me. My tuition is paid for by a program called supported education. I don't know what 'support' stands for exactly, but the bills get paid. Through Sally, I've met about four other people who have schizophrenia. We hang together sometimes, visit each other at the cottage retreat when we go in for tune ups or brake jobs. I've heard about, read about, psych hospitals and am really glad I never got locked up in one. I trust Sally. She trusts me. I stop in to see Dr. Banks sometimes. I still like her freckles. When I needed help with tuition and finding a place to live, Sally told me about a place where I could get what I needed. It was a place run by people like me, some in worse shape, some in better. They went with me to the nerds who had the money, told me what to say, how to fill out the forms. Every once in a while, I go there to help out with stuff - mailings to raise money, maybe to talk to other people who are having a tough time.
      What about It? It is part of who I am, but not all of who I am.
      Where I live they let you have pets. I have a new puppy and an old cat. They don't like each other much but they love me. I even get help with buying their food and paying vet bills. The puppy's name is It, the cat's name is Me.

      Part 2

      How could she be crazy? What have we done wrong? Oh my God, I can't believe this is happening. Oh, shit. Is she taking drugs? What happened at the beach? I don't need this right now! We can't afford this. Why didn't she tell me? Am I such a bitch? Why didn't I spend more time with her? Why didn't I say something when I noticed that her grades were bad? I thought she was on a diet - trying to lose weight. Oh hell, how are we going to get through this? Damn you. Poor baby. My heart is howling - I'm not wise enough to help her.
      I always wanted four kids - a big enough family for a sense of group, a sense of belonging. It wasn't ever easy - each of them had their own ways of being, of needing me, of crossing boundaries I had avoided. I thought she was just hitting adolescence and that adolescence was hitting her back. When I saw her face in the pediatrician's office, when I saw Dr. Banks, at first I thought she was pregnant, or had been raped, or something. Never did It occur to me that she was going crazy. My smartest, best girl. My soccer player. My kitchen helper. Did I love her too much? How can I love her now? I feel so betrayed by her - so angry. Why didn't she come to me? Got to get over this. Got to get it together to help her.
      Dr. Evans seems to like her. She seems to like him. I'm afraid of her sometimes. I hope he can help her. She looks wild sometimes, with fear I know now. I started seeing a therapist too, and thank god for that. Betsy, my therapist, gave me a lot of good books to read about schizophrenia. She answered all of my questions at least twice. She didn't blame me, but she also made it clear that our family had some part to play in this.
      I learned to watch for our ways of being together, ways that were hurtful, undermining, or confusing. I learned to make time for each kid, and to quit running an organization instead of making a home. I realized that I didn't really like some things about our lives either. We'll never be a perfect family, but we are trying to clean up some of the toxic waste we make for each other. Our health insurance covers all of my therapy, my daughter's medication and therapy, and her stays at the cottage….without it, we'd have been ruined. And so would she.
      I tell myself everyday that my daughter is lucky, that she isn't damaged goods, that she can have a life worth living, that she is getting the best help available - that I shouldn't be afraid of her. I know that she was psychotic when she ripped up some of my clothes and I found her curled up in my closet. I have never known such terror and heartache as that moment. I know she didn't mean it when she told me, smiling her crazy smile, that if we both died, we'd both be reincarnated as rainbows.
      Betsy got me in touch with a group of other families, both parents and young adult children, that have problems like ours. I don't like the martyr meetings much, but I get precious comfort and understanding from Alice, a young woman about my daughter's age, who also has schizophrenia. Alice, like Betsy, is my coach. That's what I call them. Alice tells me about her life, and what schizophrenia is like for her, and she helps me to understand how my daughter is feeling - why she does what she does sometimes. Alice gives me advice about how to love my daughter, and how to nourish her - and when getting pissed off is OK. Alice and Betsy get me through the tough times.
      Letting go and holding on have been, are, the hardest things I've ever had to do. Trusting her again, knowing that she'll make mistakes but can manage them, being with her without mourning in her face - these I'm still working on. But, now that I see her smile at odd moments (I know the voices will always be there), but now that I can see her with her own place, her classes, and even those darned pets (why does she have to give them those idiotic names?), some part of my grief is relieved. If I could have the schizophrenia for her, if I could take her place in the terror and agony, I would. I wonder if she knows.

      Part 3

Dr. Banks
      The patient is a 12-year-old, well developed female with no apparent psychiatric history. Chief complaint at this visit is auditory hallucinations, "hearing It," in the patient's words. Duration: about three weeks. Frequency: 5-10 times per day. Other symptoms: sleep disturbance, appetite loss, increased anxiety, isolation. Physical findings: patient is in good health. Vaccinations up to date. Soccer physical done six months ago with no significant findings. Performance at school deteriorated gradually over the last few months. No close friends. Diagnosis: rule out depression, drug use, schizophrenia. Refer to Dr. Ben Evans for psychiatric evaluation. Patient has health insurance coverage for extended outpatient treatment.

      Dr. Evans
      The patient is a 12-year-old female, referred by Dr. Banks, her pediatrician. Patient accompanied by her mother and Dr. Banks for the initial visit. Patient is anxious but attentive, alert and watchful. Mother is quite distressed and angry but is circumspect re anger. Reason for referral: patient reports recent onset of auditory hallucinations with hostile content. Has considered harming herself and others in response. Recent weight loss and social withdrawal. Loss of interest in sports, school work, and general anhedonia.
      Initial impressions: this is a bright, deeply troubled young woman with clear reciprocal attachment with her mother. I seldom see patients so early in the course of a disorder, and plan to treat aggressively for remission of psychotic symptoms, and re-establishing of some equilibrium for her and at home. There is some family history of undiagnosed/untreated schizophrenia in earlier generations of father's family. Need to rule out dissociative disorder, drug involvement, and examine psychosocial factors in more depth before ruling out schizophrenia.
      Treatment plan: See patient 3X a week until therapeutic relationship established; begin medication as soon as she is willing and comfortable; continue to be available to family for consultation; refer parent(s) to Dr. Betsy Cook and to family support/consumer coaches group. If needed, meet with other children in the family to moderate discussion of what is happening; meet with school personnel if requested. Be available to patient as needed.
      Admission note: 16-year-old female patient entered cottage retreat over the weekend, at her request, after a violent incident with her mother and a sibling. Difficult to sort out who did what to whom, but patient ended up with a cut lip and chipped tooth, sister has sprained ankle, and mother has minor abrasions on both arms. Patient says that she found her younger sister reading her diary. She tried to control herself, but grabbed her sister in order to secure the diary and pushed her down. Sister fell over clothes on the floor and wrenched her ankle, screaming in pain. On hearing the noise, patient's mother entered the scene, and attempted to aid her younger daughter. The patient remained enraged and began hitting her mother, who then slapped the patient. At this juncture, their father intervened and called me.
      When I arrived at the home for a family meeting, patient had collapsed with remorse and self-hatred and was mute. We all agreed that she could benefit from a break, and though she refused to speak, she signed the admission forms.
      Discharge note: Patient has progressed slowly but solidly while here and requests to leave. Family turmoil has lessened also. I will continue to see her 3X per week until she is more stable. We are working on finding a supported living apartment so that she can live near the family, but have her own place.
      She will be followed indefinitely by Glenn Hooks, RN, who will assist her with daily living challenges, and any other issues that arise in this transition.

      Glenn Hooks, RN
      I first met this guest when she came to the cottage, four years ago. She was a piece of work. Didn't talk to me for a whole week. Ate some, wandered around the grounds, didn't sleep much. Watched me warily at all times. She took her meds as prescribed. Communication began gradually - over my cooking, I think. She didn't like the amount of salt I put into the wild rice. Told me to get out of the kitchen and she would cook for us. Like a rabbit and a hawk this one.
      Meetings with Dr. Evans were off limits to me until the end of the second week. When it became clear that I would be useful to her in finding a place to live, getting some money, and things like that, she tolerated me a bit more. After six months of guarded, usually hostile, sarcasm, she began to give It up and let me work with her. Losing her mind, that's what terrifies her - alone in a place that sucks her in, chews her up, takes her away. Hurting someone else haunts her; makes me edgy too. I think she could do it. She knows she could. She knows what crazy is. She knows she's not the golden girl anymore. When she's crazy, the pain goes away for a while. It calls her.
      We went to the pound to get her a kitten. She found one she liked, and named him, Me. Great name. I never know who she's talking to, but it sounds so nice to hear her say, Come here to me, Me. She knows what she needs to do.
      We've been through applying to the university, a couple of dates with men, a lot of mess around exams and papers. Didn't want to go to co-counseling - not like them, I know. But she goes, and she is and isn't like them. She came back to the cottage a couple of times, and we'd start all over to find her, to piece things back together, to hold on, hold on.
      This sure beats working in a state hospital. Or the mental Health center. The pay is better. I get two months off with pay every two years, plus regular vacations. Great benefits. And I get the supervision I need, the training I want, and the freedom to make decisions. It's intense. I'm a voyeur I think - peering into that space that is not a space that opens up in some people. They all want to know, eventually, why I do this. Is there some family secret, some uncle hidden in the basement, some mistake I made that I have to atone for, some priesthood I should have joined. None of the above. When I can fully answer the question, it'll be time to move on. What I say is that it's about seeing people walk away; about seeing the backs of their heads as they go out there and do it again; about knowing that they don't need to look back because they do not fear my gaze. I want them to know that they can come with wild eyes and jumbled up lives, and we'll just start all over and try to do it better the next time.

      Coda

      I didn't give Sally permission to write about me. That's too close, too personal, too private. You don't need to know about that stuff. And you don't need to know my name.

      Here's what you do need to know:

      I got help early, and when I needed it, and so did my family. Our insurance paid for the help we needed.

      We were able to see docs and others who were smart, well-trained, and knowledgeable about where, when, and how to make referrals.

      We saw people who respected us, and who taught us. We saw people who liked their jobs and felt respected and valued in them.

      I had a place to get away to regroup and hide out that was quiet, safe, gentle, and like a home away from home. People respected my privacy.

      I never had to go before a judge, or a magistrate, and no one in my family had to act in a punitive way to get help for me, or for themselves. No one ever locked me up or made me take medications against my will.

      The people in my family understand that it's not all my fault, and not all their fault. They understand that everyone has a part in our lives and my troubles - and theirs. They understand that there are no simple answers and they don't see me as a disease.

      I got to go to school, live in a decent place, get money, have my pets - have a life without giving up everything else like my dignity and my hopes for a future I'd want to be in.

      No one hassled me about how sick I was or whether I deserved to get help. I just got it.

      And when I talked, people listened. What I said, felt, and wanted made a difference. I didn't always get what I wanted when I wanted it. But people listened - no b.s., honesty is what I got.

      I know this all sounds too good to be true. It is.

      That's the only tragedy here.