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really get to know her that summer – the other girls in her group were outgoing and animated, while she was quiet and withdrawn, and it was easy for her to slip under the radar.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), in eastern KY. 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 – to Somerset, Frankfort, Jeff (a rural Appalachian town outside Hazard), Pine Knot (a tiny mountain town on the TN border), then eventually to Danville, and finally Lexington. 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 often 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.
The summer I visited Unique outside Hazard was the first time I went to see her on my own. There were some indications that the agency wasn’t the best or safest, but Unique said that things were okay. Later that summer I started having trouble getting in touch with her – every time I called, the staff would tell me she wasn’t there. I eventually found out that she was in the hospital, her first psych hospitalization in years. It was the beginning of a very different phase of her life…the next few years were a constant cycle of hospitalizations. She was chronically suicidal, desperate to find a way to end the pain she was feeling. I got really good at tracking her down, and at getting the staff in various psych units to let me talk to her even though I never had the magic “code number” at the start of each new stay. She was in one rural psych unit often enough that the staff recognized my voice and didn’t even ask for the code number anymore. She started saying things that didn’t quite make sense, talking about the agency administrators bugging her phone and stealing her belongings and stalking her. The agency was shut down not long after, so it’s not too far-fetched that there was some sketchiness happening and her brain was trying to find a way to make sense of it.
After one hospitalization, she was released to a new agency, in an even more rural area. The staff there had never met the “old” Unique – all they knew was her in her current state, still talkative and engaging, but not always quite making sense. So it apparently wasn’t much of a cause for alarm on their end when she stopped making sense completely, but it was for me… Usually when I called her in the hospital, she’d go through a range of emotions throughout her stay, but was always coherent. Until the time I called her and she started mumbling something and threw the phone on the floor. When I called back, there was static on the phone, and she screamed at me to stop crinkling paper in her ear, and threw the phone again. I assumed that once she went home she’d be “back to herself”…but when I called her at home, she didn’t seem to even know who I was. After several weeks of that, and the staff not seeming to care, I decided to go visit her over Christmas vacation. I was so scared for her, and had to see what was going on. It was a strange visit…she was talking very pleasantly about the weather and other small talk, but couldn’t remember what she did on Christmas, 2 days earlier. She didn’t seem to know who I was, and never remembered that visit in the future, even when I showed her pictures.
Unique slowly regained more of “herself” – she was coherent, and knew who I was, and could have regular conversations. She was hearing voices though – constant, incessant voices that shouted awful things and told her all the reasons she needed to kill herself, in a neverending barrage. Counseling services were non-existent in that rural area, and psychiatric services consisted of a psychiatrist visiting a rural clinic once a month, which meant that she got an appt every 3 or 4 months, if she was lucky. The cycle of hospitalizations continued, dozens of them. One summer she ended up in the hospital right before I was supposed to go visit. The hospital only allowed visitors in the psych unit two days per week, neither of which was a day I’d be in KY. After getting nowhere with tearfully begging them to make an exception, I ended up spending an extra $500 to change my flight…for a 1-hour visit that she barely remembered, but that I would do again in a heartbeat. She wanted to move, but nobody would help her start the process. I found the Office of Protection and Advocacy online, spoke to someone, and eventually she was assigned an advocate. She finally moved to Danville, to an agency she’d end up being with for the next 5 years, in various locations. In Danville, she had spinal fusion surgery, which had complications, leaving her in the hospital for months. My usual summer visit ended up being just a short time after the surgery…she was on a lot of pain meds (and I’m pretty sure not on her psych meds), mostly incoherent and talking about babies being in her bed. I visited two days in a row, mostly just sitting there holding her hand, but she barely seemed to know I was there. As I was getting ready to leave on the last day, she looked right at me, squeezed my hand and said “Don’t wait so long to come next time, ok?” Only time I ever cried in front of her…
After recovering from the surgery, Unique tried hard to make a life for herself and exert her independence while she was in Danville, although not always in the most logical ways. She signed up for online college courses, but had trouble meeting the demands – she often called me and dictated her assignments over the phone for me to submit. Even then the stress got to be overwhelming, and she ended up back in the hospital. Then she tried again, at another school, with the same results, and now with increasing debt. She started making decisions that were very uncharacteristic for her – signing up for a credit card, ordering lots of things, then reporting the card stolen. Begging people for their credit card numbers to order dolls, then taking advantage of the one person who agreed (her sister) by going on a shopping spree. She was always trying to guilt me into giving her money (“I guess you don’t really love me then. If you loved me you would trust me”)…it was frustrating, and made it hard to want to talk to her. It seemed to me like she was in a manic phase, but the agency just saw it as a discipline issue.
Predictably, she crashed after that, going into a severe depression. The middle-of-the-night phone calls increased. She was always so apologetic for calling…I always reassured her that I was glad she called, and that sleep was overrated anyway. There were some nights that she was so distraught, and so clear on how she was going to hurt herself, that I was afraid to get off the phone with her. Usually I could eventually convince her to call a staff into her room, to tell them how she was feeling. The fact that they never seemed to notice her sobbing on the phone for hours, and that she sometimes had to shout for a good 15 minutes to get somebody’s attention, was disturbing. The responses she got from the staff, which I could hear for myself in the background, were even more disturbing. “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, “Stop calling me in here, I have ironing to do.” I asked to talk to the ironing lady…told her what Unique had been saying, and that she really needed somebody to just stay and be with her. “Can’t you just sit with her for a while, and do the ironing later?” She seemed flustered…never really gave me an answer. I had a very long conversation about her with Unique’s case manager the next day! Sometimes Unique would beg the staff for help, and when nobody would help her, she’d call 911, or try to call her psychiatrist at home. Instead of addressing the issue, they took away her phone privileges, only allowing her brief calls monitored by staff.
Sometimes Unique would talk about flashbacks she was having, of traumatic things that had happened in her past. Once it happened while I was on the phone with her…she was panicking, hyperventilating, telling me in vivid detail about sexual abuse she had experienced as a child (“He took his belt off. Then he took my diaper off…”). Another time she called me convinced that her abuser had tracked her down, was in her room, and was about to rape her. It was the most terrified I’ve ever heard her, and there was nothing I could do about it…she wouldn’t call the staff, because she was afraid he’d kill them. Eventually she hung up. I called her back later that night and she couldn’t remember it at all…I like to think her brain was trying to protect her, there’s only so much a person can handle.
In the winter of 2013, Unique found out that she might not qualify for SCL placements anymore. There was a change in the regulations, and her “normal” IQ disqualified her. Her only other option would be a nursing home. Protection and Advocacy filed a lawsuit on behalf of her and others who were affected, and the agency kept providing services for her in the meantime. Unique’s stress level skyrocketed, and things started to go downhill. She had learned to cope with hearing voices in her daily life, but the voices started to overwhelm her. She could feel herself losing control, and was terrified that what happened a few years ago was going to happen again. I kept reassuring her that now that she knew herself better, and knew how to advocate for herself, things wouldn’t get to that point again. She tried to ask for help, from anybody she could think of, but everybody minimized what was happening, and accused her of just wanting attention. I spent hours every day on the phone with her, sometimes just listening to her cry and telling her I loved her. That several-month period was the most stressful I can recall in my life…it involved me buying a house, taking my first mission trip to Jamaica, getting the house ready, and moving, all while working 2 jobs and spending up to 8 hours a day on the phone. It was awful…I tried to get help for her too, from her case manager and the advocate. But everybody was just focused on the lawsuit, and on the fact that the agency wasn’t getting paid. This is part of the e-mail I sent to her advocate that May…
“Over the past week and a half or so it’s like she’s hit a breaking point. She always talks about hearing voices, but is generally able to handle it. Now she says they’re constant, screaming at her, so loud that they fill up the whole room, and that nothing she tries makes it any better. She said if she tries to ignore them, they keep getting closer and closer until they “come out of my head and then they’re in my room for real.” I’ve been talking to her every day, for hours, and you can tell when it’s happening – she can hold it together and carry on a conversation for limited periods of time, but then she stops in the middle of sentences, can’t focus, gets confused, and sometimes starts panicking. She’s been starting to have trouble differentiating what is and isn’t real – she was totally convinced last week that the staff were recording everything she was saying to use against her, kept saying she could hear them talking about it and could hear them playing back her words in her voice, then sometimes it was her words in somebody else’s voice…she couldn’t even talk about it at first without having an anxiety attack, kept telling me she wasn’t safe there. She’s said she can’t read or watch TV, because it feels like the characters are talking to her. She’s tried talking to the staff, but they don’t take her seriously, chalk it up to stress about the hearing. She’s started talking about wanting to hurt herself to make the voices go away… She’s so scared, can’t stop crying most of the time I’m on the phone with her, keeps saying she feels like she did before that other episode years ago. It may have started with her being stressed, but it’s way beyond that at this point, and more than she can handle on her own. I know that people think she does things just to get attention, but that’s not what’s happening here (and even though people are in fact being paid to pay attention to her, she’s not getting any for that…when she’s really scared because she’s seeing things and wants a staff to come in so she’s not alone, she’s said she has to make up a physical reason because they won’t stay and talk to her otherwise).”
They eventually won the lawsuit, 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 everyday, and had one-sided conversations, to the sound of her breathing, or sometimes crying. In the middle of that, she moved to Lexington…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…and 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…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 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, 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 ago, 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 relax 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 Lexington 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 3 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 at or hung up on me, or more often just refused to take the phone. There was a positive at one point – an agency in Somerset 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 issues 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 benefitted 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 benefitted 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. I’m going to try though, as I tried to do with her when she brought it up.
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 everyday, 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.
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 everyday, 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 others times when she was too depressed to answer the phone, or to respond at all. I would do whatever I could (leave messages for her, send cards, etc), 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.
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end the stigma 