By Stacey Lehrer
EDITOR’S NOTE: Get caught up here on Unique’s story.
They eventually won the appeal, allowing Unique to continue staying in the SCL placement. By that point I’d watched Unique’s worst fear of totally losing control play out. She couldn’t have any kind of conversation that made sense, and often didn’t seem to know who I was. When I visited that summer she was convinced that she had just been in an awful car accident, and that she had all kinds of broken bones and wounds. She sobbed that she didn’t want me to see her like that. Not long after that, she stopped talking completely, for a period of several months. I still called her every day, and had one-sided conversations, to the sound of her breathing, or sometimes crying. In the middle of that, she moved to a new city, to a new house, with new staff who didn’t know her as anybody other than this silent person. The staff were confused about why I would be calling her. One guy, who barely spoke English, took a full year to understand that I was her friend. Other staff caught on faster and got used to my calls. One guy talked to me so often that he started answering the phone in a falsetto when I called to try to trick me.
When Unique eventually started talking again her version of reality was very different than mine. One time when I called she was distraught because she was sure that somebody had just broken in and sliced off everybody’s heads, then reattached them with ribbons She told me that if somebody pulled the ribbons, all of their heads would fall off. I heard staff in the background trying to reassure her that their heads were all okay, but then she started shouting and threw the phone. Other times she had elaborate stories about her life, which sounded totally plausible, except that none of it was accurate. She would tell me about her spouse, her kids, her college degrees, her jobs. She was sure that she really worked for the agency she was living in. Any attempt to gently question a story led to her yelling at and hanging up on me. I learned to just go with the story, and respond to the emotion behind what she was saying rather than the content, but it was hard, and it went on for long enough that I was afraid that the friend I knew was gone for good.
Eventually I started seeing glimpses of Unique’s personality again. It took a long time for her to get back to herself, and it was never a “complete recovery.” When she got too stressed or overwhelmed, sometimes she couldn’t fight the voices anymore, and they would take over. When I visited that summer, she was just starting to be more coherent. It had very clearly been a traumatic thing for her to go through. On the first day of my visit, she asked for a hug, and then grabbed me as hard as she could, hanging on for dear life and crying that she didn’t know what to do anymore. It was heartbreaking.
Over the next year, she had her ups and downs. She had very little quality of life – she hadn’t gone to a day program in years, and very rarely went out in the community. Her days were spent at home, mostly in bed. She had always had ongoing issues with her back after the surgery, and spent most of her time in pain. She could sometimes have great conversations, about books or TV shows or cooking, but it was obvious that she was still really struggling. In May, she ended up in the hospital because of issues with her back. She ended up being in the hospital for over 4 months, never getting out of bed, or going outside. Then she found out her grandmother had passed away. Unique had been convinced that her grandmother died a few years before, and the news really threw her for a loop. She was convinced that her family blamed her for not being more attentive to her grandmother. When I visited that summer, she was clearly exhausted, both physically and emotionally. She just wanted me to sit there and hold her hand, and I did, for hours. She would periodically look at me and tell me that I would never know how much it meant to her that I came.
After my visit, I tagged Unique in a picture on Facebook – as I had every year – and all of a sudden a bunch of her family members started contacting me, asking about how to get in touch with her. I asked Unique if she wanted to talk to the first person who asked, and she said yes, but then multiple family members tried calling her, and wanting to visit, and Unique panicked. She was sure that they were going to try to find her and hurt her, or let other people who wanted to hurt her know where she was. She unplugged the phone in her hospital room, and refused to talk to me when I called the nurse’s station. It took a while for her to advance from that.
All the time in the hospital started to get to Unique. She was struggling more with the voices, and flashbacks, and with feeling like she was losing control. I convinced her to talk to her favorite nurse, who had her talk to the chaplain, which helped, but not enough. To make matters worse, she found out that the agency where she’d been living had been forced to close its residential programs. She didn’t really need to be in the hospital anymore, but there was nowhere to discharge her to, other than a nursing home. So she just stayed in the hospital, week after week, which had a huge emotional toll. She talked about how tired she was of fighting, how she couldn’t do it anymore. She begged me to come back and visit again, saying she really needed me and didn’t think she was going to be around much longer. I couldn’t, but I posted a plea on Facebook asking for anyone in her area willing to do a good deed. That led to connecting with a friend of a friend, who was incredibly awesome and started visiting Unique almost every week. The first visit was great — Unique was having a good day, and they talked about poetry and other things. When I talked to her later, Unique was so happy about the visit (the first person to visit her in the three months since I’d been there).
The agency Unique had been living at had to keep one home open until all the residents could be transitioned elsewhere, and so eventually they were forced to take Unique back, even though they didn’t want to. It wasn’t a great situation, and Unique continued going downhill emotionally. Her case manager was looking for other options, but without much luck. I called Unique all the time, but there weren’t many conversations that made sense. One day, out of the blue, she was totally “herself”, and kept telling me that no matter what happened, or what she said at other times, to just know that she loved me. I did think back on that over the next few weeks, as she sometimes screamed or hung up on me, or more often just refused to take the phone. There was a positive at one point – an agency was interested in possibly taking her, to live with a family. They had an initial visit, and it went well. Unique was so excited, but also so stressed about making it work, by the time her weekend visit with them came, she was almost incoherent. The family decided she wasn’t a good fit.
Unique was sick a lot. She always seemed to be dealing with respiratory and stomach issues. Some of the staff seemed to get tired of dealing with it, and weren’t as responsive or attentive as they should have been. For the last few weeks, every time I called they would tell me that she was either sick or asleep. I called on the night before Thanksgiving, and was told that she was asleep, and to call back in the morning. When I called in the morning, they said she was in the hospital. When I called the hospital later, she was in the ICU. Her case manager finally called me back on Friday night. Unique had had emergency surgery, with some other complicating factors, and was very sick, but expected to be okay. She passed away early Sunday morning. Her case manager called me. I got another call a half hour later. The staff person who used to answer the phone in a falsetto had looked up my number and called me on his own to make sure I knew. If Unique had made it through the surgery and recovery, she most likely would have ended up in a nursing home – her worst fear. Her story was never going to have a happy ending, unfortunately.
That’s the story of Unique’s life as it intersected with mine. The other part of the story is about our friendship, and what it meant to me. It was easy for people to see how Unique benefited from our friendship – I was a source of unconditional support for her, and for many years the only person in her life who wasn’t paid to be there. But some people seemed confused by our friendship – they didn’t see how it benefited me, and assumed I must just feel bad for her. Sometimes she jumped to that conclusion too – her depression often made her feel like she didn’t have any redeeming qualities. Why would anybody want to be her friend, with all the “drama” that entailed? The reality is that my friendship with Unique had more of an impact on me than I could ever put into words.
My friendship with Unique was never “equal” – I was almost always cast in the “helping” role, and had to make allowances for her that she would never make for me. But nobody was more aware of this than she was, and when she was able, she did everything she could to equalize things. When she was going through some of her most challenging times, she would still always be sure to check on me. During those marathon phone calls while I was getting my new house ready, she would ask every day, through her tears, about how things were going. Almost always, when I could tell she was really upset, she would turn it around and ask first if I was okay, if there was anything I needed to talk about. She was always worried about making me upset. I spent years trying to reassure her that it made me more upset to think about her lying in bed crying by herself because she wouldn’t talk to anyone. She was a good friend when she was able to be, plain and simple.
EDITOR’S NOTE: Stay tuned for the next volume of Unique.
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.