Adventures in Mental Illness: Part 7

The doctors at Payne Whitney ended up diagnosing me with Schizoaffective Disorder. Schizoaffective Disorder is ‘a mental disorder in which a person experiences a combination of schizophrenia symptoms such as hallucinations or delusions, and mood disorder symptoms, such as depression or mania’ (Mayo Clinic). I think that was a pretty silly diagnosis for them to give me considering my reality testing was perfect and some of the ‘psychotic’ symptoms they were observing could be accounted for by my developmental disability but I guess they felt they had to settle on a diagnosis and Schizoaffective Disorder was the best they could come up with.

Mental illness on its own can be hard enough to understand and autism spectrum disorder on its own can be hard enough to understand. Put the two of them together and people are often completely baffled even though it is common for the two to go hand in hand. The fact that the doctors were so convinced that I was experiencing hallucinations and delusions convinced me that they did not understand me, although I could hardly blame them for not understanding me when I didn’t even understand me ( I may have expressed those thoughts in previous episodes of this mental illness saga but now that we’re on episode 7 it’s hard for me to keep track of what I’ve said and I feel like they’re thoughts that are worth repeating anyway.)

Years later a friend asked me if I found my stay at Payne Whitney to be helpful. I think it was helpful to me only in the sense that it was a holding zone. Since it was clear that the doctors there could not understand me I certainly didn’t think they could help me.  They were not giving the kind of help I needed and I was not in a frame of mind in which I was receptive to help so there wasn’t much hope of me making progress.

As I said, I don’t remember much of anything that happened while I was there so it’s possible there were individual therapy sessions in which caring therapists tried to get to the heart of my issues and my mind just has no record of it, but I get the impression the doctors spent a lot more time talking about me than talking to me. I got the impression that I was more a patient/case study to them than a human being they cared about. For me and I’m sure for many others as well knowing that the person who’s assigned to help you really cares about you is the first and most important component necessary for healing.

I suppose it’s silly and unrealistic of me to expect a warm, caring atmosphere in a mental hospital but some mental hospitals are better than others. Some mental hospitals do provide individual therapy with caring professionals and encourage the loved ones who visit the mental patients to hug and touch them.There may have been good reasons behind Payne Whitney’s no touching policy but I really have to question the wisdom of enforcing such a policy. Hugs and loving touch have been proven to be beneficial for mental health and a source of comfort to those who are suffering.  Being deprived of loving touch has been proven to be detrimental to one’s mental health. I do realize that there’s no one size fits all rule and that some people are bothered by being touched but it seems a shame to have a blanket policy that’s harmful to the many people who want and need to be touched.

Another thing I have no memory of is ever going outside. Again, it’s possible it did happen and it’s possible it wasn’t feasible to let me outside but being deprived of fresh air cannot be good for the mind, body or soul.

I also have to question the wisdom of giving me antipsyschotics. I was being given a potent drug with adverse side effects intended to treat a disorder I did not actually have. I’m not going to jump on the “Big pharma is evil and destroying peoples’ minds and bodies for the sake of profit” bandwagon because I think psychotropic medication has helped a lot of people and I have certainly been helped by some of the medications I took but this was an example of medication being prescribed inappropriately.

I was talking to a relative of mine in Europe who had a very different experience at a mental hospital. His was a mental hospital where the patients were allowed to roam the grounds outside, use the internet, take pictures and have sexual relations. My relative was wondering which system was better. I don’t know which system is better but I do know that the state of mental health care in the U.S. is deeply flawed and broken. What I went through at Payne Whitney and at the treatment center I was is not unusual and it’s not one of the more horrifying stories out there.

I was in Payne Whitney for about six weeks but you could have told me I was there for six days or six months and I wouldn’t have known the difference. I had lost all sense of time. When the doctors decided to release me it wasn’t so much because I’d improved as because they didn’t know what else they could do for me.

They weren’t sure what should be done for me after I was released either. There was talk of sending me to a day treatment program and there was talk of sending me to a program for the mentally ill that was located on a farm, in which the residents helped to take care of plants and animals. I love animals so the farm program seemed like a good option for me but I was deemed to be too unstable for it.

Just like I have no memory of the day I entered Payne Whitney, I have no memory of the day I was released. I do know that the doctors said there was a good chance I would end up having to return at some point.

Adventures in Mental Illness: Part 5

I wasn’t just going to the mental hospital, I was going to the back ward of the mental hospital. It was decided that my behavior would be too upsetting to the other mental patients so I was placed in solitary confinement. If I though the stabilization house was bad, this was much worse. At least in stabilization I could talk to the staff and the other residents who were there with me. At least there were occasional scrabble games and walks outside. Here there was nothing. I was confined in one room all day and the only times anyone at the mental hospital interacted with me was when they gave me my meals.

Suffice it to say, I was completely and utterly miserable. If only I was as crazy as everyone thought I was. Actual psychosis would have been almost welcome at this point. I would have given anything to escape the horrifying reality of being all alone in the back ward of a mental hospital.I felt as though I had hit rock bottom and would never be able to recover. I had been deemed unfit to fraternize with other mental patients. It didn’t seem like there was any hope for someone like that.

When I talked to my mother on the phone she told me I had been kicked out of Innercept because they had decided my behavior was too upsetting to the other residents. She had been looking around for another mental health facility to put me in and had tried to get me in to McLean mental hospital. I was familiar with McLean because I had read/seen Girl Interrupted (If only real life mental illness were as glamorous as Winona Ryder and Angelina Jolie made it seem.) McLean wouldn’t take me though. They said they had no place to put me. My behavior meant that I could not be put in the main ward with the general population but they couldn’t put me in the ward for the psychotic patients either because my reality testing was perfect.

“I want to die!” I cried in to the phone.

“No, honey bunny, you don’t want to die. You want to get better.”

“I can’t get better. I  want to be euthanized!”

Euthanasia did seem pretty appealing at that point. If only that guy who brought me my trays of food would also bring me a syringe that would put me to sleep forever. If only he could inject it in to my arm so that I could be enveloped by a blissful fog that would permanently release me from my physical and emotional prisons, from this hell on earth, from this world of intense, unrelenting psychological suffering.

One of the worst feelings I’ve ever experienced, one of the worst feelings in the world, the kind of feeling I wouldn’t wish on my worst enemy was that feeling I got every morning when I woke up in the back ward of that mental hospital. It was a feeling of horror, a feeling of unreality as I had to acknowledge over and over again that this was not all a bad dream. This was my truth, this was my life, this was what I had done to myself.

Eventually my mom called me to tell me that she was flying down to Idaho to get me. She had been told that if she brought me to an emergency room in New York she could probably get me admitted to a psychiatric hospital called Payne-Whitney.

Before my mother arrived at the mental hospital Marlene came to pay me a visit. The first thing she said to me was “So, you’re in the back ward of a mental hospital…” The last thing she said to me was “So, when I call your mom a year from now is she going to tell me you’ve been permanently locked up in a mental hospital?” I got the impression Marlene wouldn’t be all that surprised or devastated if that ended up being the case.

When my mother arrived at the mental hospital Marlene informed her that Innercept would be sending her a bill for the mattress I’d destroyed with my vomiting and diarrhea. And with that I was off on the next leg of my adventures in mental illness.

Adventures in Mental Illness: Part 4

*This is the part of my mental illness saga where things get R rated and borderline X rated. It’s the part where things get really disturbing and gross. Bodily secretions are involved. You have been warned. (I’m afraid this warning has got some people excited and will draw the wrong kind of audience to this blog but hey, what can you do?)

My birthday came and went at that treatment facility in Idaho. This year there were no gifts to open, no candles to blow out, no friends or family to gather around me and sing happy birthday. On the phone call with my mom and Marlene, my mom wished me a happy birthday and told me my godmother also wished me a happy birthday. She informed me that a friend of mine had left a message on our home phone saying that she’d tried to call my cell phone but it was disconnected and that she wanted to get together with me. My mom had called her back to tell her that I was in a residential treatment center.

When I compared this birthday to my last birthday, I was filled with intense grief and shame. My last birthday had been a birthday on which I’d had friends presenting me with a cake and singing happy birthday to me. That was when things were good for me and I’d decided I wouldn’t be self destructive any more. Now look how bad things were for me and how self destructive I’d become.

I was sinking to new lows in my behavior and it was upsetting the other residents. At one of our group sessions a resident said there was someone who was doing something that was bothering her and she wanted to address them but she hesitated to do so. The leader of the group guessed that the person she wanted to address was me.  She confirmed that yes, it was but she didn’t want to voice the issue because it was embarrassing.  At that point I said “I know what you’re talking about and I’ll stop doing it.”

A few days later the therapist who had led that group session called me in to his office. He said “In our last group you told Melanie you would stop doing the thing that was bothering her but today we got complaints that you were sticking your hands down your pants and touching yourself.”

Yes, you read that right. I was publicly masturbating (If doing that doesn’t make me crazy, admitting to it on a public blog probably does.)  There was definitely no sexual contact of any kind allowed at that place and very few opportunities to be alone so the most obvious explanation for why I was doing it would be that I was a raging nymphomaniac who could not suppress her sexual desires but that was not the case. I’m still a virgin and I’ve never been that in to masturbation as a form of sexual gratification.

So, why was I doing it? For starters I was..well, you see…um.. I kind of…oh, there’s just no delicate way of saying this… since my hygiene was really bad at that point things were getting pretty itchy and uncomfortable down there.

There was also an element of comfort seeking and sensation seeking to it. I was in a lot of emotional distress so I did what I could to comfort myself. I’m on the autism spectrum and I constantly crave stimulation, sensation and movement. I often jump up and down, flap my hands and pace back and forth. Being in a controlled environment where I was constantly supervised, in confined spaces with groups of other people and had to sit in one place for long periods of time hindered my typical methods of sensation seeking so I picked alternative methods. Speaking of picking, I also picked something else and it made it pretty hard for the other residents to eat their meals.

Speaking of meals, the program was big on healthy eating. Nutrition is important for both mental and physical health. The only problem was that the kind of healthy foods they chose to give us were the kind of foods that tended to produce a lot of gas. Since we were living in close quarters with each other, that was rather unfortunate. One of the flaws of that program was that they gave us food that made us really gaseous and then on our behavioral score cards they’d write us up for “passing gas in public.”  At one of our group therapy session a grievance a resident aired against one of his roommates was “When you fart I can barely breathe!”  It wasn’t long before I joined the ranks of the flatulent. At one point a resident said “If you’re going to sit next to me, can you please not gas?”

I have no recollection of doing these things but my mother tells me that the staff at Innercept informed her that I put a dead snake that I found on the ground in my mouth and that I crapped in the back of the van. I do like to touch and play with all kinds of animals but I’m not generally in the habit of putting dead reptiles in my mouth. I’m also toilet trained. I wasn’t quite myself at the time though. While I’d like to think it was someone else’s poop they found in the back of the van, I’ll acknowledge that there’s a very real possibility I was the culprit.

Aside from biological urge/necessity and self soothing, there were other more egregious reasons for my outrageous behavior. I wanted to mess with people, I wanted to cause trouble and I wanted to play the role of a crazy person. Why would I want to do that? you ask. It’s complicated. Years later when I described the behavior I’d engaged in at Innercept to a psychologist of mine she suggested that I engaged in that behavior because I was feeling so much pain, chaos and turmoil on the inside that I felt the need to replicate it on the outside. I think that’s the best explanation for my behavior we’re ever going to come up with.

Some other mental health professionals came up with some not so good explanations for my behavior. I’d assured the psychologists at Innercept that I was not hearing any voices in my head but they weren’t going to take my word for it. My behavior indicated to them that I had a psychotic disorder. Aside from the gas passing, the crotch touching and the reptile tasting, they noticed that I”seemed to be responding to internal stimuli”. What they were probably noticing was me smiling, frowning and flapping without any obvious external stimuli to prompt such a response. I’ve always had a tendency to get lost in thought, to smile when I think about something that amuses me and frown when I think about something that upsets me. I’ve also always had a tendency to flap. It’s just part of who I am and part of being on the autism spectrum. It has nothing to do with hearing voices.

Nevertheless, my behavior was a cause for concern. My mom had read research that suggested people on the autism spectrum are at an elevated risk for schizophrenia and I was around the age where schizophrenia tends to develop. One of the therapists at the program administered a series of tests to assess my grip on reality and was surprised when I got an almost perfect score. He was sure the tests were going to indicate I had some kind of thought disorder. As he said to my mother, “You can fake crazy but you can’t fake sane.”

There were some people who felt I was faking crazy. At a group therapy session a resident said regarding me “I think she’s faking her shit. She’s too smart to really be like this.”

Was I faking being crazy? Yes and no. There was certainly an element of performance art to my behavior but sometimes when you fake being batshit crazy for long enough you actually become batshit and the fact that I felt the need to fake batshit in the first place showed that I wasn’t quite right in the head.

Regardless of my reasons for engaging in that kind of behavior, I know that it was not appropriate. I didn’t think it was appropriate to engage in at the time either but I did it anyway and that made me an asshole. A mentally ill asshole but an asshole nonetheless. When one of my roommates called me aside to tell me how much it bothered her when I touched myself, she cried as she spoke. When I saw her tears I felt genuinely bad. Although I disliked some of the staff, I had no ill will toward any of the residents. They were mostly nice people and it was not right for me to make a hard time they were going through even harder.

I was harming other people with my behavior but I was harming myself more. One day when everyone had had it with my behavior, a staff member said to me “Kira, get in the car, I need to drive you somewhere.” “Where are we going?” I asked. “We’re just going for a ride” she replied.

It turned out we were going to a place called Stabilization. Stabilization was a house out in the woods reserved for residents who were behaving badly. The idea was to give them a chance to calm down in a “low stimulus environment”, which essentially translated in to sitting around doing nothing all day. Sitting still all day is unpleasant for a lot of people but it’s especially torturous for someone like me on the autism spectrum with a nervous system that has a constant need for movement and stimulation. Let’s just say I sought stimulation in alternative ways that the staff who were supervising me found disgusting and did not appreciate.

My time at Stabilization did nothing to improve my behavior. Once I returned to the program I continued to act out in a disgusting and bizarre ways. Even though the testing had shown that I wasn’t psychotic, I’d been put on anti-psychotics. Since at that point I was really skinny because my depression had made me lose my appetite, I was given an anti-psychotic that increased appetite. The problem was it made me ravenously hungry at a place that limited my food intake to three small meals a day.

One day I was so hungry that I ate a piece of fruit out of the garbage (hey, maybe that’s also why I put the snake in my mouth.)  “You can’t eat out of the garbage! That’s disgusting!” The staff member who caught me doing it said. On my behavioral score card I was written up for eating garbage.

That night I became violently ill. I vomited and had diarrhea all over my bed. “That’s what happens when you eat out of the garbage” the program psychiatrist told me.

The next day the same staff member who had driven me to Stabilization told me that we were once again going for a ride. “Where are we going?” I asked again. This time she told me exactly where I was going. I was going to the mental hospital.