By Stacey Lehrer
EDITOR’S NOTE: Get caught up here on Unique’s story.
The summer I visited Unique in a rural Appalachian town 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 mountain town. 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 appointment 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 the area. 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 a less rural area, to an agency she’d end up being with for the next 5 years, in various locations. 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?” That was the 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, 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 an appeal 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).”
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.