By Stacey Lehrer
Unique always used to talk about writing a book about her life. She worked on it off and on for years, often telling me about a chapter she was working on or what part she planned to write about next. It’s been years since she had a working computer; I don’t know what happened to her writing. But I do know that she wanted people to hear her story. I can’t speak to what happened in Unique’s life in the time before I knew her, although I’ve heard enough about it that I feel like I have a pretty good idea. But I can tell her story as it connects with mine, in the 14 years since we met. I’m leaving out some of the more intensely personal details, to respect her privacy, but hoping to share her story (and, in part, our story) as she wished.
I met Unique when she was 15, as one of her camp counselors at a camp session for kids with physical disabilities. I didn’t really get to know her that summer – the other girls in her group were outgoing and animated, while she was quiet and withdrawn, and it was easy for her to slip under the radar. After camp I stayed in touch with a few of the other campers via e-mail, and one of them told me that Unique was having a hard time and might like some cheering up. So I just sent a friendly e-mail, asking how things were going. She had a lot going on, mostly just regular high school drama, and we wrote back and forth a few times. This was back in the day of AOL Instant Messenger, and one day out of the blue a message from her popped up – she was at home alone with her grandmother, her grandmother was drunk, and she was scared. That IM conversation turned into talking almost every day, either through IM or e-mail or over the phone. She was lonely, and living in a very difficult situation – I could hear enough in the background of those phone calls to know that she was telling the truth. The next summer, when I had Unique as a camper again, I sat with her while she talked to a police officer about what was happening. She didn’t want to go back home, but there were no other options. She told me that she couldn’t think about it, because then she would start crying, and if she started crying she would never stop. After watching her silently getting in the car to go home, I was walking back to my cabin when the camp nurse stopped me to say that she thought Unique was making it all up because “if things were really that bad at home, she should be happy when she’s at camp and away from it, not sad.” If that happened now I would have given her a lecture on depression; but at that point I just stared at her and walked away.
After that summer, Unique e-mailed and/or called me almost every day. Things were different though…she was extremely depressed, and frequently suicidal. I told her that if she ever needed to talk, she could always call me, no matter what time it was. I sent her a calling card (which I kept adding minutes to for the next 13 years), so she could call me without getting in trouble. I was in college; I would often be on the phone until 2 or 3 AM and then get up in time for my 8:00 classes. I had just gotten my first cell phone, but it didn’t work in my dorm room, so I would sit for hours on the floor by the main door. I had no idea what I was doing, and when I think back to some of the things I said to her during those early days it makes me cringe. She was pretty forgiving though, and we figured it out together. It helped that I was in school for occupational therapy at the time. I read the chapter on depression in my mental health textbook, and realized that it had been written by my thesis advisor. We set up a meeting, and she gave me some great advice. Another time, when Unique’s grandmother stopped giving her her antidepressants because she was on antibiotics, another professor called her psychiatrist husband to ask if there was any reason to do that.
As the holidays approached, Unique was really struggling. By Christmas vacation, she was already so depressed that she wasn’t getting out of bed. The perfect storm of traumatic events that week was more than she could handle – she couldn’t face the idea of having to start another year like that, and on New Years Eve she attempted suicide. She was so upset about not having succeeded. For the rest of her life, the week between Christmas and New Years was the most challenging time of the year for her, with New Years Eve being the worst. It always brought her right back to that night, and that mindset. Soon after that attempt, she had her first psychiatric hospitalization. It helped, for a time, but she went back into the exact same home environment, so nothing really changed.
We still talked every day. I did an honors project for a mental health class, developing a fact sheet on “Depression and Suicide in Adolescents with Physical Disabilities” to distribute to local agencies. I went to visit Unique in the spring, and gave her a copy at her request. She called me that night, sobbing. A family member had found the sheet and told her that if she wanted to kill herself that badly, she should just go ahead and do it, and stop burdening everybody else. She stopped eating, and was hospitalized for an eating disorder. She went back home, and still nothing changed. She started talking about seeing this friendly little alien, hanging out in her room. She joked about it at first – she knew he wasn’t real, but he kept her company. Then she stopped joking. She wasn’t so sure about whether or not he was real. One day she called me in a panic, terrified that he was going to touch her, and that if he touched her she was going to “totally lose it.” She continued seeing and hearing the alien all the time, and talking constantly about suicide. A few days after that I had to leave to work at a new camp for the summer with no cell phone reception, one shared landline phone, and no internet allowed for the first week. Always the ultimate rule-follower, I convinced a series of new friends to sneak into the computer room with me each day so I could check on Unique.
She ended up in the hospital again. Her grandmother decided she couldn’t take care of her anymore, and at 17 Unique went into foster care. It seemed like it was going well – the family was very nice, and when I visited Unique there she seemed to be doing better. There were of course some adjustment issues, as Unique had never lived in that type of family environment, but she tried to work through things. Since she had a physical disability, Unique could have stayed in foster care until she turned 21. For reasons I was never sure about, the family decided on Unique’s 18th birthday that she needed to leave, that same day. I was in Georgia at that time doing my OT fieldwork. I turned on my cell phone to find a voice mail from a sobbing Unique saying that she had no idea where she was going but would try to call me when she could. With no other options, she ended up in a nursing home. At 18, with the next youngest resident being in his 50s, she was miserable and totally out of place. She was only there for a few months, but consistently said from then on that she would rather die than ever go back to a nursing home.
From the nursing home, Unique ended up going to her first of many SCL placements (basically a group home). It was a good fit for her – she finished high school, had friends and a boyfriend, went to her prom, and got to have a bit of a more typical high school experience. I didn’t talk to her as often during that time – I’d call her every week or so, but she finally had a real social life of her own. I’m not sure why that placement ended. From there she went to a series of other SCL placements all over the state, most lasting just a year or two. I started visiting every summer, and we joked that all her moves were conveniently letting me see the whole state! I always visited with somebody else in those days, and we’d end up just going out to lunch and exchanging small talk. She wouldn’t have in-depth conversations with me in person, but we talked on the phone at least a few times a week. While she was still relatively stable through the first few moves, her life was changing. She was spending her days at day programs with people who were much lower functioning than her, and living with housemates who were much older, lower functioning, and often non-verbal. She had goals for herself that were very different than her current situation – she wanted to get a college degree, become a teacher, live on her own, get married and have children of her own. She tried to make friends with the staff, and tried to maintain relationships with people from her old life, but it was a struggle for her. She would get close to certain staff, and start seeing them as her family. When they inevitably moved on to a new job, she would be devastated.
EDITOR’S NOTE: Stay tuned for the next volume of Unique, to be published next week.
Stacey is an occupational therapist in Rhode Island, working with kids with severe/multiple disabilities. She loves the beach, traveling, reading, and hanging out with her very energetic dog.