I had a close friend with mental illness who passed away recently. She always talked about wanting to share her story, but never really had the opportunity to do so. So I’m hoping to share at least part of her story for her, and in part the story of our friendship. I met Unique when she was 15, as one of her camp counselors. Somehow a friendly e-mail after camp turned into 14 years, thousands of hours on the phone, and a long-distance friendship that had more an impact on my life than anything I ever could have imagined.
When I first got to know Unique she was living at home in a very difficult situation and dealing with depression. In the few years that followed, I watched her deal with worsening depression, her first suicide attempt, multiple psych hospitalizations, and moving into foster care, then a nursing home, and then eventually the first of many group home placements. For the rest of her life after that, Unique moved into a series of group home placements all over the state. Because she had a physical disability but didn’t have any cognitive disability, those placements meant that she was usually living with people who were much older than her, and much lower functioning than her, which brought along its own set of challenges.
For the first few years Unique was pretty stable. She had her ups and downs, but she did the best she could to make a life for herself and make the best of the situation. Eventually things started to go downhill – the suicidal feelings came back, she had her first psych hospitalization in years, and that started a whole new period of her life. For the next few years it was a constant cycle of hospitalizations, dozens of them. At one point she stopped making sense, which turned out to be her first episode of psychosis. It lasted for a few months, and once she got through it and was more back to “herself” again, she had started to hear voices – constant, incessant voices that were shouting at her all the reasons she needed to kill herself and what a horrible person she was. She was living in a very rural area at the time, and didn’t really have access to the supports she needed – the staff had no idea how to support her, and the hospitalizations just kept continuing.
She wanted to move, but couldn’t get anybody to help her start the process. Eventually I was able to help her find an advocate, and she was able to move to an area closer to a city. Things got better for a while – she got some of her personality back, and even tried to take some college classes – but then things started to go downhill again. She ended up in the middle of a deep depression, and I was getting these constant middle-of-the-night phone calls, with her trying to deal with her suicidal thoughts and voices screaming at her to die. She would sob on the phone for hours, and the staff would never notice. Usually I could eventually get her to call one of the staff into her room, and then I could hear for myself the things they were saying to her in the background. “Just go to sleep, you’ll be fine in the morning”…”Don’t say things like that, you’re going to go to hell”…”You shouldn’t talk like that, you’ll scare people”…”Just read the Bible, you’ll feel better”…or my personal favorite (at 2 AM), “Stop calling me in here, I have ironing to do.” Somehow she kept fighting through all of that…I would always tell her that things would get better, and she would say that she knew things would get better, but then they would just get worse again. She ended up being right, but she did keep fighting, which impressed me so much.
Around that time, when she was already struggling so much, Unique found out that there had been some changes in the regulations around the type of placement she was living in. The fact that she had a normal IQ would have disqualified her from that type of placement, and she would have had to move to a nursing home. She had been in a nursing home for a while when she was 18, and always said after that that she would rather die than go back to a nursing home again. She had some people fighting for her, and an appeal was filed on her behalf, but it was just way more stress than she could handle at that point, and she hit a breaking point. The voices got to be really overwhelming, she was having constant, intense flashbacks to abuse that she had experienced as a child, and she was having a really hard time figuring out what was and wasn’t real. At that point I was spending up to 8 hours a day on the phone with her, because she said that it helped her to be less afraid of the voices…much of the time just listening to her cry and telling her that I loved her, because there was nothing else I could do. She knew that she was losing control, and she was terrified. She begged for help from anybody that she could think of, but people just accused her of trying to get attention. I tried to get help for her, from anyone I could think of, but everyone was just focused on the lawsuit and on her placement.
Her worst fear, of totally losing control, started to play out at that point. She didn’t know who I was, or what was happening around her. She stopped talking completely for a few months, and when she eventually did start talking again, her version of reality was very different than mine. I still called her every few days during that time – I had made the decision that I was going to stick with her no matter what. At first, when she wasn’t talking, it would just be one-sided conversations to the sound of her breathing, or sometimes the sound of her crying. Once she started talking again but was in her own reality, it meant trying to deal with that. She could be very hurtful, and often hung up on me; trying to figure out how to respond to her was a huge learning curve. I learned to try to follow the idea that “it’s better to be kind than to be right” – to try to respond to the emotion behind what she was saying, and do whatever I could to keep the conversation going, hoping that she would feel supported and understand that she had someone who cared about her.
It took a few years for her to get back to “herself”, so that she could have a regular conversation. But even then it was never a total recovery. When she became too stressed or overwhelmed she wasn’t able to fight the voices as much, and they would start taking over again. Her quality of life wasn’t great at that point. She wasn’t going to a day program anymore, she was in constant pain from back surgery she’d had years ago, and she was spending most of her time just lying in bed. She talked all the time about how she was so tired of fighting, and just couldn’t do it anymore. The last time I visited her, this past summer, she was just so obviously exhausted, both physically and emotionally. She just wanted me to sit next to her and hold her hand, so I did, for hours. She did have some health problems, but nothing that should have been life-threatening. When she passed away, there were a lot of indications that the stigma against mental illness, and people’s responses to her because of her mental illness, played a role in her not getting the care she should have received.
That’s the condensed version of the story of Unique’s life as it intersected with mine, but the other part of the story is our friendship, and the impact it had on me. It was easy for people to see how Unique benefitted from the friendship – I was a source of unconditional support for her, and for years the only person in her life who wasn’t paid to be there. People couldn’t figure out what I got out of the friendship though, and assumed I must just feel bad for her. The reality is that I learned more and grew more from my friendship with Unique than from any other experience I’ve ever had in my life.
The biggest piece of what the friendship taught me was learning to listen. I wouldn’t say that I was a great listener before I met Unique…there’s that difference in “listening to reply” vs “listening to understand,” and Unique would accuse me all the time of trying to lecture her when we first started talking. I eventually learned to sit back and take myself out of the equation, and to try to understand her experiences from her perspective – to try to put myself in her skin, and feel what it would be like to be living her life. Once I eventually got to that point, it changed how I looked at everything, and how I experienced everything and everyone in the world around me.
There are so many other things that I learned from my friendship with Unique. She helped me see the importance of emotions, and the value of sharing emotions; the importance of physical support, and physical affection, and hugs! I learned to be able to trust myself and my instincts, and not have to rely on other people for validation. I also learned how to be an advocate – how to speak up, and to recognize that some things are too important to not be said.
Before I met Unique, mental illness wasn’t a part of my world. Obviously in the 14 years that I’ve known her, mental illness became a huge part of my everyday life. For the past few years, with Unique’s permission, I was sharing parts of her story on Facebook and at a few different conferences. I started seeing the “no kidding, me too” phenomenon playing out – when I shared my story, other people started sharing their stories with me. Mental illness impacts all of our lives in some way, and people have things they want to say, but it can be hard to start that conversation.
I also started to see the impact that being able to put a face on mental illness could have. As I shared Unique’s story and people were able to have that personal connection, I started to see the stigma breaking down. It humanizes mental illness – instead of that scary “other,” it becomes just another human being trying to get through life, like all of us. That’s what we need to hear – not those sensationalized stories that the news shows us about mental illness, but just real everyday stories of people living their lives with mental illness. Unique always talked about how she hoped that her story could help people. I know that it has, and I hope that it will continue to help people. Her life mattered, and her story matters, and the lives and stories of everybody else living with mental illness matter too. It’s only by sharing those stories that we can fight stigma and make a difference.
Special thanks to Stacey Lehrer for sharing Unique’s story with us. With stories like hers we can continue to learn more about mental illness and break the stigma. If you want to read a longer version of Unique’s story find it on NAMI here.
Always remember you are not alone.
You are loved.
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