By Stacey Lehrer
EDITOR’S NOTE: Get caught up here on Unique’s story.
When she was having a hard time and trying to hold it together, Unique would often say, “Give me 5 reasons that you love me.” The first time she asked me, it caught me off guard. I wasn’t used to having conversations like that. I wasn’t used to talking about my emotions in general, and I’d certainly never told her that I loved her. I’d spent years by that point listening to her talk about how she was feeling, and trying to counter the negative thoughts. I resisted at first, and saw how upset it made her. Her life experiences and her depression had told her that she wasn’t worth loving. She needed to hear that she was, and she was trusting that I could tell her that. So I did…that night, and countless other times over the years that followed. And I learned something from each of the qualities I admired in her.
• “I love your sense of humor.” Unique and I figured each other out pretty quickly. I knew how to make her laugh with sarcasm and silly stories. She figured out that I found it hysterical when she used the phrase “I reckon,” and took to randomly throwing it in conversations. I learned that “sometimes the only sense you can make out of life is a sense of humor.”
• “I love that no matter how bad you’re feeling, you’re always concerned about other people.” Unique was always worried about making sure everyone else was okay. She wanted everybody else to be happy, even if she wasn’t. I learned that there are a lot of different ways to be selfless.
• “I love that you’re getting so good at advocating for what you need.” It took a long time for Unique to understand herself–how her mental illness was impacting her, what made things better or worse, and what support she needed. But once she got there, it was pretty impressive to listen to. I felt like I knew her pretty well from sharing in her experiences, but listening to her talk about it was a whole different perspective. Unfortunately she very rarely got the support she needed, but it doesn’t discount the amazing progress she made in advocating for herself. I learned so much from her experiences.
• “I love that you never give up, no matter how badly you want to.” I spent dozens of nights on the phone with Unique when she wanted desperately to die. I know how hard she fought to make it through every day, trying to maintain some control of her life and her thoughts. She kept going, even when she really didn’t have reason to. I’d tell her, over and over again, that things would get better, that they always do. She’d agree–things always do get better, but then they just get worse again. She was right. But she kept going anyway. And I learned what perseverance really means.
• “I love that no matter how bad things are, you always come out on top.” Coming out on top is relative, but Unique made it, for years, through some seemingly insurmountable situations. I learned to never discount what she could do.
So what else did I learn from my friendship with Unique? The most obvious is that I learned more that I ever imagined about mental illness. Before I met Unique, mental illness just really wasn’t a part of my world. And then all of a sudden it was. I remember Unique’s first psych hospitalization. I was so confused. Psych hospitals were for “crazy people”. Unique wasn’t “crazy,” she was my friend. But the hospital stay helped her, and I realized that all those other people in the hospital probably weren’t “crazy” either – they were just people like Unique who needed some help. As Unique’s mental illness got more complicated, I started reading every memoir and first-person account I could find, wanting to be able to better understand what she was experiencing. With her blessing, I started sharing some of her experiences. As soon as I started talking about and posting about her story, I saw the “no kidding, me too!” phenomenon in full force. People started sharing their own stories with me, and I began to realize just how much mental illness impacts all of our lives. I started to see clear examples of how sharing those stories was breaking down stigma, one person at a time. I also started to notice the little things that increase stigma: the memes joking about the “voices in my head,” the sensationalized news stories about psycho killers, people trying to “diagnose” politicians with mental illness to explain their behavior. So much change is needed, but it has to start somewhere.
My friendship with Unique had a profound impact on how I interact with other people. I wouldn’t say that I was a great listener before I met her. I was quiet, so people thought I was listening, but there’s a big difference between listening to reply and listening to understand. She used to accuse me of trying to lecture her at first. I learned to take a much more active role in listening–to really try to understand what she was experiencing rather than just jumping to conclusions or judging her. There’s so much more to any of us than meets the eye–we just have to take the time to see it.
My friendship with Unique taught me to trust myself and my instincts, and not to have to rely on others for validation. There were times that my interactions with Unique were extremely frustrating. She wasn’t thinking logically or rationally, so having any kind of “normal” conversation was impossible. I still wanted to be there for her, but it was definitely a challenge, trying to not take things personally, to not get defensive, to stay calm and rational in conversations that were anything but. Trying to figure out how to respond to her was a huge learning curve, and a lot of trial and error. I eventually learned to just go with the flow, and to respond to the emotion behind what she was saying, trying to make her feel supported, even though she wasn’t able to give me that feedback. There were other times when she was too depressed to answer the phone, or to respond at all. I would do whatever I could like leave messages for her, send cards, and try to trust my belief that it would make her realize that I cared, even if she couldn’t respond. Other people often made it clear that they didn’t feel that Unique was worth all that effort. But I knew that she was, and that was enough.
I’ve never been an emotional person. I was always telling Unique that it was okay to cry, that I would rather she cry on the phone with me than lie in bed crying by herself. I almost never cried on the phone with her though, or at least not so she would be aware of it. After my last visit this summer, she was so emotional, she was having such a hard time, and was convinced that it was the last time she would see me (she turned out to be right). That phone call really got to me. We cried together, her in the hospital, me in my hotel room. And it was okay…there’s something special about sharing that. I’ve also never been a physically affectionate person. My mother could tell you how much I hate hugs. But Unique needed that physical affection more than anything. It was one of the great ironies of her life: she had a physical disability, and needed physical assistance for all of her personal care. People were constantly touching her, but never in a way that gave her any comfort. I always hugged her when I visited, because it seemed like the normal thing to do. But in between those visits, all year, she would talk about how she wished I was there, because she just really needed a hug. We’d talk all the time about sending virtual hugs to each other. At some of her lowest points, when she could barely talk, she’d talk about how all she wanted was a hug. On one of my last visits, in 2014, she asked for a hug as soon as I got there, so I of course obliged. A little later she looked sad, saying she wished she could have another hug. I told her that she could have as many hugs as she wanted, and she started crying. That killed me. I’m still not a hugger, but we all need to feel supported, and sometimes that physical closeness can make all the difference.
Unique taught me how to be an advocate, and to stand up for myself and for others. Growing up, I hated talking on the phone, avoided any controversy, followed every rule, and generally tried to fly under the radar. As the years went on in my friendship with Unique, I found myself repeatedly e-mailing and calling case managers, administrators, and her advocate, and not giving up until they at least got the point. I politely educated staff on why they needed to do their job. I got really good at getting people to circumvent HIPAA and tell me where she was. I ended up being the only person who never lost touch with Unique, mostly because of persistence. If I had missed one time she moved, it’s possible I wouldn’t have been able to track her down again. She stopped being surprised to hear from me in each new placement or hospitalization, but was always relieved.
So why put all of this in writing? Somehow, against all odds, I ended up as the keeper of Unique’s story. We came from completely different backgrounds, and lived across the country from each other. We saw each other once a year. But for whatever reason, I ended up as the only constant in her life – the only link between all the different places she lived and all the different things she experienced. We all need a witness to our lives, somebody who can vouch for the fact that we existed. It would be easy for Unique’s story to be forgotten. But it won’t be, at least as long as I’m around. Her life mattered, and her impact will live on.
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.