Adventures in Mental Illness: Part 10

Within a few hours of my first ECT treatment I picked up a book for the first time in over a year and started reading. I’d always loved books but for the past year I’d been too depressed to read. I’d lost interest in it and I did not have the mental energy or the concentration level that reading would require. Even when I’d spent long periods of time in solitary confinement in mental hospitals and treatment centers, when I’d had nothing to do, I had not read anything.

The fact that I was reading now was seen as a very good sign. A few days after I started reading the book I finished it and it was time for my next ECT treatment. By then I was showing additional signs of improvement. I was talking more and I was laughing more. My sense of humor seemed to have returned along with my desire to read. When I filled out the depression survey before my next treatment I was able to honestly rate the extent to which I’d been experiencing certain depression symptoms as lower on the scale than I’d rated them at my last appointment.

As I got more ECT treatments, I became more engaged in conversation and with life in general. I’d always had a loving relationship with my mother but lately I had become aggressive and defiant towards her. With ECT the lovingness returned and the aggression decreased. For a while my mother had suggested taking courses at the local university and working towards finishing my degree but I had adamantly refused. A few weeks after beginning my ECT treatments I agreed to return to school.

One of the most prominent and worrisome side effects of ECT is memory loss. One of the first courses I took when I went back to school was Learning and Memory. I got an A in it. I have always had an exceptionally good memory. Many people are amazed by the things I’m able to remember, some are amused by it and a few are even creeped out by it. I think I honed a good memory from an early age as a survival skill to compensate for all the deficits I had. My good memory has always been a source of pride for me so I was not thrilled at the prospect of losing it.

Luckily ECT did not cause me to lose my memory in any significant way.  I have lost a lot of memories for the things that happened in the year or so before I had ECT treatment but who knows if that’s the effect of ECT, trauma, depression or some combination of the three. Regardless, I do not think I am any worse off for not having those memories. In fact, a lot of  the things that happened during that time period were pretty awful, so I’m probably better off having no memory of it.

I started out having ECT three times a week and eventually tapered down to maintenance ECT once a month or so. When I went long periods of time without ECT I’d start to slip in to moodiness and aggression. Once I got the ECT my mood and behavior would improve.

The ECT procedure itself always went smoothly and was always painless for me. The preparations I had to undergo to get the ECT caused me more problems than the ECT itself did. If you’re a man you may have an easier time preparing for ECT than if you’re a woman because you will not have to take a urine pregnancy test. There was literally no chance that I was pregnant (if I were we’d be looking at the second messiah) but the doctors weren’t going to take my word for it. I’m not very good at peeing in a cup on command and there were times when I just couldn’t do it. Usually when that happened the doctors would waive the pregnancy test requirement and proceed with the ECT but on at least one occasion they canceled my treatment after I failed to pee in a cup.  I have to admit I was a little irritated by that, especially when I found out that ECT is considered safe during pregnancy.

When I started taking afternoon classes, my schedule did not match up with the ECT schedule at the hospital I was going to so I had to switch to a different hospital. The nurses at this hospital had trouble sticking my veins in order to insert the IV in so I had to have a port inserted in my chest.  I still have a crescent moon shaped scar on my chest from that port. It’s visible whenever I take my clothes off, whenever I wear a low cut shirt or a bathing suit. It’s not the most attractive thing and sometimes I wish it wasn’t there but there’s another part of me that kind of likes it. It’s like a battle wound from a difficult period of my life that I survived.

I consider both the scar and the having to pee in cups to be relatively minor issues.  They were a small price to pay in exchange for everything that ECT gave me. I say that ECT  shocked some sense in to me and my mom says it caused a switch to go off for me (puns intended.) We regret that we did not agree to it when it was first suggested but considering all the negative opinions, the fear, the stereotypes and stigma there is surrounding it we can hardly be blamed for that.

Many consider ECT to be barbaric but there was nothing barbaric about the ECT I got. I consider some of the ways in which I was treated at the residential facilities and mental hospitals I was in to be much more barbaric than my ECT treatments.

It has now been a few years since I’ve undergone ECT. I’d like to tell you that ECT completely cured my depression, that I was never depressed again and that I lived happily ever after but that wouldn’t be the truth. I did continue to be depressed after I had ECT but my depression has been much less severe. I read somewhere that ECT tends to be very effective at alleviating symptoms of depression such as loss of energy, appetite and interest in hobbies but not as effective at alleviating symptoms such as guilt and low self esteem. That has certainly been the case for me. I struggled with guilt and low self esteem for years after I had ECT and I continue to struggle with it to this day.

It is said that many people who experience relief from depression as a result of ECT eventually relapse. Although I have struggled with depression since getting ECT, I do not consider myself to have relapsed. I never returned to that all encompassing, mind numbing, zombie-like state of depression I was in before I had ECT and I hope I never do return to that state.

ECT gave me back my ability to take pleasure in the simple things in life-things like reading a good book, having an interesting conversation with a loved one or taking a walk outdoors on a beautiful day. It’s those simple things in life that provide me with joy and relief when I feel depressed, overwhelmed and hopeless. It’s the joy I am able to take in the simple things that prevents me from being suicidal.  When the ‘big things’ in my life are not going well and are stressing me out, the little things comfort me and I realize that some of the little things are actually the big things.

Based on my experience with ECT, I would recommend it to people who are suffering from severe treatment resistant depression but I realize that my experience with ECT is not everyone’s experience with it. I’ve talked to other people who have undergone ECT.  Some, like me, experienced a lot of positive results and minimal negative side effects. They are very glad they underwent ECT. Some people experienced some severe negative side effects but also experienced a lot of positive results. They consider ECT to have been worth it. Some experienced a lot of negative side effects and little or no improvement. They regret undergoing ECT.

I hope that in sharing my story on this blog I am encouraging people who will benefit from ECT to try it but I do also worry that this blog could push the kind of people who will experience severe negative side effects and no improvement as a result of ECT to try it. There’s no way of knowing for sure how you will react to ECT until you try it. You just have to decide for yourself if you consider it to be worth the risk.

If someone has had a negative experience with ECT it’s fine for them to publicly talk about that experience as long a they can acknowledge that their experience with ECT is not everyone’s experience with it and that some people have benefited from it. However, when people who have no experience with ECT and no real knowledge of what it actually entails decide to publicly spout off  about how horrible and barbaric it is, that makes me angry. It makes me angry when they spread lies and misinformation about ECT, when they base their opinions on it off of stereotypes that are perpetuated in the media, when they judge others for undergoing ECT or suggesting that their loved ones undergo it, when they call for the procedure to be banned.

I feel especially angry when the people who choose to voice such ignorant, misinformed opinions are people who have never experienced severe depression themselves. ECT is not anyone’s first choice but sometimes it is literally a choice between life and death, between having a decent quality of life and having a miserable shell of a life.

These days I’m in a much better place emotionally than I ever would have thought possible at the time I was locked in the back ward of a mental hospital, alone and miserable. I truly thought my life was essentially over then, that I would be miserable for the rest of my days, that I would never experience joy again. I’m so glad that has turned out not to be the case. I credit ECT for getting me to the point where I could experience  joy again.  While some of the changes I’ve made in my life are not a direct result of ECT, they may not have happened if ECT had not given me the initial kickstart that jolted me back from the land of the dead.

I will forever be grateful that ECT was a treatment that was available to me, a treatment informed professionals were able to guide me through, a treatment with minimal negative consequences for me and significant positive results, a treatment that worked for me, a treatment that changed my life for the better.

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Adventures in Mental Illness: Part 9

Before I got my first ECT treatment, I was instructed not to eat or drink anything for 12 hours beforehand. When the time for my treatment arrived I was driven to the ECT suite of the mental hospital I’d first stayed in at the beginning of this mental illness saga. I filled out a survey about my depression symptoms and I signed a waiver acknowledging the risks of ECT including confusion, memory loss, nausea, headache and jaw pain.

Once I had filled out the paper work I was given an ID bracelet and instructed to pee in a cup. Then I was taken to a bed and instructed to lay down. My bed was surrounded by curtains on both sides and on one side was the ECT machine. Nurses placed electrodes on my head and an IV in my arm. The nurses who attended to me were kind, helpful and gentle. They in no way resembled Nurse Ratched (the evil nurse from One Flew Over The Cuckoo’s Nest.)

Once the nurses had set me up a doctor came over to my bed. He told me his name and introduced himself as the anesthesiologist who would be performing the ECT. He said he was going to administer the anesthesia through the IV and I would be knocked out shortly afterwards. He asked me to state my name and the procedure I was undergoing. I did so. The nurses gave the all clear to begin the procedure. I felt a brief sting as the anesthesia entered my veins followed by a woozy floating feeling that lasted for a few seconds and then I was out.

I woke up a few minutes later. I experienced no confusion and no pain. I knew exactly where I was and what had happened. Physically I felt fine. A nurse came over and asked me how I was doing. She then helped me off the bed and guided me to the waiting room. In the waiting room I was treated to a selection of snacks and juices

When my mother came to pick me up she spoke to me and to the doctors. We acknowledged that so far the procedure had gone well with no complications. I was told to take it easy for the rest of the day and to call them if I started experiencing any serious side effects. They said it might take a while to see results and that if I didn’t see results from this unilateral ECT treatment they could try bilateral ECT. Unilateral ECT means inducing seizures in one hemisphere of the brain, bilateral means inducing seizures in both hemispheres of the brain. Bilateral ECT carries a greater risk of side effects.

As we got in to the car, my mother and I were both relieved that I had survived my first ECT treatment and that it had been painless. Now we just had to wait and hope that it would produce positive results.

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 6

I know that the Payne Whitney psychiatric clinic was named after a man named William Payne Whitney and I know that Payne is not the same as pain but I can’t help but feel that it’s not the best idea to have a name that sounds identical to the word pain in a hospital’s name. It’s inevitable that pain will be experienced in a hospital but this is an instance where we don’t need truth in advertising.

At the Payne Whitney clinic I experienced some of the worst emotional pain of my life. I was enveloped in a cloud of intense, non-stop, relentless, all encompassing misery.  I was overwhelmed with sadness, grief, fear, guilt, regret,anger, loneliness and shame.  I felt hopeless, helpless and worthless.  While I experienced all these intense negative emotions, I also experienced a kind of emotional numbness.  I shut down emotionally as a form of defense and as a coping mechanism. I went in to zombie mode as a result of the emotional trauma I was experiencing and as a result of the side effects of the anti-psychotic medications.

I had no motivation to get better because there was no getting better as far as I was concerned. I did not deserve to get better and I was not capable of getting better. This was the end as far as I was concerned. Maybe I would spend the rest of my life in a mental hospital. Maybe I would be released from the mental hospital but if I was not imprisoned by the physical walls of a mental hospital, I would be imprisoned by the metaphorical walls of my mental illness and all the horrible mistakes I’d made. I just couldn’t see myself recovering from something like this.

A few years ago an ex-boyfriend who was angry at me had referred to me on the internet as a piece of human waste. At the time I thought it was a cruel and ridiculous thing to say but now I felt like a piece of human waste.

I’m known for my good memory but I don’t remember much about Payne Whitney. The only thing I remember about the other patients was that there were a lot of Hasidic Jewish men with hats and curls on the sides of their heads. The only interaction I remember having with any of the doctors or therapists there was when a social worker told me that during group therapy she’d seen me picking my nose. When I just shrugged it off she said “Here’s a word of advice: Look around you and observe what other people are doing. If you don’t see other people doing that you shouldn’t be doing it either.”

I have no memory of how I filled my days at Payne Whitney. I just remember the visits my mom made to me at night and a few visits from my dad as well. I remember on election night my mom teased me that Obama was going to lose by one vote. I have this memory of my dad spoon feeding me green beans. That memory doesn’t make much sense because I don’t like green beans and I’m capable of feeding myself but I suppose I was so out of it that I was having trouble lifting a spoon to my mouth and that I had become indifferent to assaults on my taste buds.

One time when my mom visited me she was so stressed out that she started having heart palpitations and asked one of the doctors to examine her. When she would try to hug me goodbye at the end of our visit a staff member would step in and say “I’m sorry, we don’t allow physical contact here.”

My mom brought a friend along on one of her visits. At the end of the visit her friend burst in to tears. “This place is so horrible and it’s so horrible seeing Kira like this” she sobbed.

At one point my mom was offered the option of signing away my rights as an adult and becoming my legal guardian but she did not do it.

I remember getting phone calls from my sister and my godmother. I remember fearing that my sister would speak harshly to me and criticize me but she just said compassionately “I understand that you’re going through a rough time right now.”  I remember struggling to think of something to say to my godmother before asking her how her baby was doing. When I had first dropped out of school and my godmother was trying to talk some sense in to me I had helped bathe that infant. Now she was walking and talking.

“The doctors are having trouble diagnosing you” my mother said to me on one of her visits.

“Why don’t they diagnose me with Crazy -NOS (crazy, not otherwise specified)?” I quipped.

We both laughed.

“If you ever write a memoir, Crazy-NOS should be the title”.

At the time the idea of writing about my life seemed preposterous because I would never want to share something so shameful with the world but I agreed that if I ever did write about it I would call it Crazy-NOS.

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.

Adventures in Mental Illness: Part 3

On the surface the residential treatment program in Idaho seemed like a very nice place. It was located in a beautiful, scenic area surrounded by lakes, forests and mountains. The house the residents stayed in was rustic, charming and well decorated. It had a very cozy, homey feel to it. It seemed like a nurturing, comforting atmosphere, an atmosphere that was conducive to growth and recovery. Looks can be deceiving.

We stayed at a hotel the night before we arrived at the program. As I lay in bed my mom looked me in the eye, said “Oh, Honey Bunny” and burst in to tears. I just watched her cry without saying or doing a thing. On the program intake form she’d been asked to name my positive qualities. She’d written “Kind” and in parentheses she’d written “Not right now.”

The next day I sat in the backseat of a car as an admissions counselor drove us to the house where I would be staying. My mom sat in the front seat and made small talk about her job (the job she was having to take time off from to deal with my mental health crisis.) As I glanced out the window, I took in the picturesque scenery I was surrounded by. Although I’m a nature lover, it failed to lift my spirits. I was just too miserable.

The lovely decor of the house I was brought to also failed to lift my spirits. My mom kissed me goodbye and hoped for the best. This program cost a lot of money but if it helped me recover from my mental illness it would be worth it. Unfortunately the program did not end up aiding in my recovery. A lot of money was paid to make things worse for me and to make me more miserable than I already was.

Shortly after my mother left one of the fellow residents asked me why I was at the program. I wasn’t sure what to say but after pausing for a few seconds I replied “For doing bad in school.”  “Oh, me too” she said.

I attended my first group therapy session and then I had my first individual therapy session with a therapist we’ll call Marlene. My loved ones and I have had some bad experiences with people whose names end in -arlene. Marlene ended up being one of those bad -arlene experiences for us, the worst I’ve had.

When I talked about my struggles Marlene said “You seem like someone who can do anything you set your mind to.”  I am a pretty smart person and while it’s nice to think that smart people can do anything they set their minds to, sometimes obstacles get in their way. One of the obstacles that got in my way was mental illness.

Some of the most brilliant people have been mentally ill. Some of those people have achieved great success in spite of or even because of their mental illness. Others, in spite of their intelligence find themselves unable to complete school, hold a job, live independently or have meaningful, satisfying relationships with other people. Sometimes they end up in jail, homeless or permanently institutionalized. I’d known for a while that there was a good chance I’d end up unable to hold a job or live on my own. Not only is that a common fate of those who suffer from mental illness, it’s also a common fate of people on the autism spectrum. I never thought I’d end up homeless, in jail or permanently locked up in a mental institution but by the time I got kicked out of this program called Innercept, even those would seem like possibilities I had to worry about.

Marlene continued to ask me questions and probe for a reason behind my struggles. In my depressed, confused state of mind I was not very talkative or forthcoming. I lacked the energy, the desire and the ability to clearly understand or express what had happened to me in the past and what was happening to me now. I ended up saying that things had been going well for me at school until I got in a mood in which I wanted to be miserable and that I behaved the way I did because it gave me pleasure to know that I was making bad decisions.

This was met with a weird look from Marlene as she incredulously said “It gives you pleasure to know you’re making bad decisions?” I guess that was a pretty weird thing to say. Does it really give me any genuine pleasure to know that I’m making bad decisions and do I really want to be miserable? No. I just needed some kind of narrative that would explain what had happened to me and that would give me some feeling of control over what happened.

The next question Marlene asked me was if I ever heard voices. I told her that no, I never heard voices. She concluded the session by telling me that at my age I should be moving out of my parents’ house and I better start looking for a job.

From our first session, I did not get the impression that Marlene was evil but I did get the impression that despite her professional qualifications, she did not have a great understanding of mental illness or of how to effectively treat it. I also didn’t feel much of a connection with her.

That night as the residents sat around a fire pit, one of the residents invited me to sit next to her. She was a nice, friendly girl and she told me some of her story. She told me that  Innercept had really helped her, she loved it and she considered everyone at Innercept to be family. “It doesn’t bother you to not have freedom?” I asked. “This is freedom” she replied.

I’m not exactly sure what that young lady meant when she said “This is freedom” but in the traditional sense Innercept offered very little freedom. We were watched by staff members at all times and were pretty much never alone. We were only allowed to eat at designated meal times and were never allowed on the internet. The only people we were allowed to talk to on the phone were our parents and we were only allowed to do that when a therapist was present.

Shortly after I had that conversation with that girl by the fire pit, I asked another resident if she liked the program and she replied “No, I hate it here.” I hated it there too.

Whether or not a residential treatment program is liked by its residents is not necessarily a reflection on the merits of the program. Sometimes you really hate things that are good for you and that you need. Sometimes you really like things that are bad for you and that you don’t need. What works for one person may not work for another person. Even the best programs do not have a 100% success rate. A program can only do so much and in order for it to be effective, the resident has to be willing to work with it.

All this is to say is that while Innercept may have worked for some of the residents, it did not work for me and while I may have been partially to blame for that, there were also some flaws inherent in the program. Unfortunately treatment programs sometimes get away with abuse of their residents because when the residents come forward with their stories, it’s assumed that since they suffer from mental illness, they must be lying or imagining things. This is not the case with me. Despite the title of this blog and despite what certain mental health professionals thought, I’m not actually crazy and I’ve never been prone to hallucinations or delusions. Anyone who knows me well knows that I am a very honest person. I’m also not someone who would hate and criticize any treatment program I was put in. I’m very grateful for some of the treatment programs I was in.

I don’t expect every therapist to love me but I do expect them to at least pretend to like me. Otherwise that therapeutic relationship is just not going to be helpful to me. When in one of our sessions Marlene said that she was neutral to what happened to me because she wasn’t the one who needed a life, she already had one, that therapeutic relationship was done as far as I was concerned. Just like I don’t expect every therapist to like me, I don’t expect every therapist to be warm and fuzzy but this woman was a fucking cactus. If I’d had the option, I would have found another therapist but I was stuck with her. As a result, we ended up having a relationship that was rather antagonistic.

“I don’t want to be in this program. Would you want to be in a program like this?”
“No but I wouldn’t have behaved in ways that would get me here.

“Have you ever had a client like me?”

“No, you’re pretty unique.”

“I know you think you’re going to continue living at home but that won’t be happening. I’ve talked to your mother and she’s agreed to kick you out of the house.”

I knew Marlene was full of shit with that last one, that she was lying and messing with my mind. That was another reason this therapeutic relationship just wasn’t going to be very therapeutic for me.

I got the impression that like Marlene, most of the staff at Innercept was neutral towards me at best and some of them also told little lies that messed with my mind.  To be fair, in a sense I was also messing with their minds and I wasn’t very likable at that point. I was acting out in a very bad way.

To start with, my hygiene continued to be a problem. In a group therapy session, a resident said to me “I’m going to be blunt. You’re 22, this kind of basic hygiene should be mastered by 15 at the latest.” In response I laughed. “It’s not funny!” the resident said. “Kira will be clean!” Marlene said.

In another group a resident told me that deodorant should be worn. One day I did decide to put on some deodorant. Unfortunately I used someone else’s deodorant and they did not appreciate it.

My bad hygiene wasn’t even the worst of it though. To be honest I’m feeling pretty apprehensive about putting the rest of the details out there on a public blog. I’m pretty relaxed about privacy on the internet and I know I said I’d be open about my struggles with mental illness but even I have my limits.

There were a group of people on the internet who had a very negative opinion of me. They liked to talk about how I had serious mental issues and how my behavior was socially inappropriate. They  also liked to accuse me of lying about some of my life events/circumstances. I’d always think to myself “Wow, if those people think this poorly of me based on what they know, imagine what they’d think of me if they found out the things they don’t know.”

I know some of those people read this blog and will find out some of the less than flattering details about me that they didn’t know before. I know finding those details out may cause them to mock me, snark on me, gossip about me, think even less of me, feel justified in thinking they were right about me all along or accuse me of further lying. I know those kinds of reactions won’t just be limited to those people either.

Yet I also know that if I’m being true to what I said in my “When Online is Out of Line”blog the proper response to that is “Whatever. What those people think of me doesn’t matter. My responsibility in writing is towards myself and others who have struggled with mental illness.”

So I will reveal all the sordid details but since I’m feeling apprehensive about it and this blog is already much longer than the average internet user’s attention span, I think now would be a good time to take a break. Stay tuned for more. The worst is yet to come.

 

 

When Online is Out of Line (Part 1)

On New Years Day I received a comment on one of my blog entries about Donald Trump. The person who left the comment was called Lang and their comment read:

“WOW! Just read this article. You really are a sore looser. Please consider re-visiting that mental hospital as I think you were released too soon.”

Perhaps I should have just ignored Lang but I replied with “Ah, my first nasty comment. You really are an asshole. Please reconsider personally attacking people for their mental illness because you disagree with them politically. I see you take after Trump in that regard.”

This was the first nasty comment I got on my blog but it certainly wasn’t the first nasty comment I’ve gotten on the internet. I’ve gotten a million and one of those. A year or two ago someone called Ruby directed a series of nasty, misspelled comments at me and she ended it by saying “Girl needs to get a life. Hell, a job.”

In one of my favorite internet comebacks of all time, a friend of mine who we’ll call Bernie replied with “How kind of you to share those opinions. In my opinion you need to get some empathy, manners and maybe a spellchecker.”

When I told Bernie about what Lang had said, she said it sounded like Lang needed to get the same things Ruby needed to get. A lot of people could stand to get some empathy, manners and a spellchecker but unfortunately we cannot force anyone to get any of those things.

When Ruby first told me to get a job and a life another person said that telling someone who has a mental illness to get a life and a job is a personal attack and quite low. Yet another person responded to that by saying that you can’t be expected to know if someone has a mental illness, what she said didn’t constitute a personal attack because she didn’t call me a fucking bitch and it could have been much meaner.

I can assure you that when you’re feeling insecure about your inability to find a job, being told to get a job is plenty mean and I felt personally attacked even if I wasn’t directly called a fucking bitch (and I did have other profanity hurled at me.)  If you’re unsure if someone has a mental illness and you’re considering making a shitty comment to them, a good rule of thumb is to play it safe and not make the shitty comment because you really shouldn’t be making shitty comments to people who don’t have a mental illness either.

As we can see from Lang, there are people who will deliberately insult you and personally attack you because of your mental illness. People like Lang really, really suck. There is a lot of stigma surrounding mental illness. A lot of people suffer through mental illness in shame and silence because they’re too afraid to speak out about it. Comments like the one Lang made tend to increase the shame and silence surrounding mental illness. They make the mentally ill even more afraid to speak out and thus the suffering associated with mental illness is increased as it becomes harder to find a support network.

I, however, will not let people like Lang deter me from posting the details of my mental illness. I’d prefer to focus on writing in a way that will promote my own self growth and will help others who have experienced similar struggles, not on writing in a way that will keep me safe from the bullies, trolls and assholes of the internet. Bullies, assholes and trolls tend to go after vulnerability. The details I reveal on this blog make me vulnerable to insults and personal attacks. You know what I say to that? Whatever. What those people think of me really doesn’t matter.

My most recent blogs have focused on the books I read in 2016. I’m not as in to TV as I’m in to reading but I did watch two shows last year- Orange is the New Black and Fuller House. If I was going to write about the life lessons I learned from one of those shows, you’d think it would be OITNB, not Fuller House and if I was going to learn a life lesson from any of the characters on that show, you wouldn’t think it would be the character who didn’t say much of anything besides “Whatever”. And yet I did manage to learn a valuable life lesson from good old Duane.

I saw a Yahoo article that dubbed “Whatever” the most annoying phrase of 2016. I agree that it’s pretty annoying but it does have its uses and I think Duane was on to something with the “Whatever” philosophy he developed as a motivational speaker.Imagine how much better, easier, and less stressful our lives would be if instead of feeling so hurt, angry and embarrassed by some of the things that happen to us, we just responded by saying to ourselves “Whatever.”

I think the nasty comments made to you by the bullies, trolls and assholes of the internet are very whatever worthy. I also think I’ve made some progress when it comes to developing a thicker skin. Those comments made to me by Ruby really stung, as did many of the other nasty internet comments made about me. Lang’s comment didn’t really hurt my feelings though. I realized it was much more of a negative reflection on Lang than it was on me. Whatever.

Adventures in Mental Illness: Part 2

When I returned to New Jersey I was sent to a mental hospital. As part of the admission process a nurse asked me a series of questions. One of the questions she asked was “Are you sexually active?” When I replied that I was not she said “Why aren’t you sexually active? You’re 22 years old and you’re very pretty. You should be having sex.” Sex was the least of my concerns at that point but at that point I could also hardly be bothered by the inappropriateness of such a line of questioning.

When I was admitted I encountered some familiar faces. A girl who was my classmate in the class for the emotionally disturbed I was in in high school was there as a fellow mental patient. I asked her why she was there and she said she was depressed because she had headaches that never went away. I asked her if she’d seen our teachers since graduating and she said no, they’d given her an invitation to an alumni event but they’d forgotten to put the date on it. Even in my distress I could laugh at that because it was so like them. I also encountered a familiar face in the social worker I was assigned to.

“Hi, Kira. Do you remember me from the last time you were here? I remember you.”

“Yeah, I remember you.” ( I have a really good memory so I didn’t just remember her. I also remembered her name, various facts about her and various things she’d said to me.)

“So what’s going on?”

“I got depressed, I dropped out of school and now I’ve ruined everything.”

“You haven’t ruined everything. You can still go back to school.”

“No, it’s too embarrassing. I can’t face my friends.”

“Come on. If one of your friends took a mental health withdrawal would you still be friends with them?”

“Yes, but it’s different with me. I’m a loser.”

“The last time you were here you told me you were having some social issues but you are not a loser.”

“Yes I am. I make bad decisions.”

“We all make bad decisions sometimes.”

“But I make really bad decisions. Not taking my medication was a really bad decision.”

“Yes, I would agree that that was a bad decision.”

“My whole life is full of bad decisions.”

“You have a lot of life left to live, more than you already have lived.”

“That is a horrible thought.”

The next day I met with the psychiatrist as well. I told her how upset I was about the bad things I’d done.

“You haven’t done anything that can’t be fixed. You need to stop blaming yourself.”

“Who else am I going to blame? God?”

“Kira, give yourself some credit, you stayed out of the mental hospital for years” the social worker interjected.

“But I was in special programs.”

“You have an illness.”

My mother, my godmother and my brother visited me in the mental hospital. They all told me that things would be okay, that I just needed to go back to school. I was fixated on how I’d made a horrible mistake, how embarrassed I would be to show my face again, how I couldn’t go back because things just wouldn’t be the same for me.

“So your attitude is ‘I can’t have everything I want, so therefore I’m going to have nothing?’ that makes no sense” my mother said.

She was right that that line of thinking was not very logical. As you’ll see later, in trying to avoid slight embarrassment, I was setting myself up for all kinds of horrible humiliations. In most respects I’m actually a very logical person and in general I’m not someone who’s easily embarrassed but mental illness can make you think and behave in ways that are out of character.

A few days in to my inpatient stay my social worker said to me “You need to shower and brush your hair. This is not a place for people who can’t take care of themselves.”

Around that same time the hospital psychiatrist said to my mother “Kira is in a very bad state right now. At this point I don’t think she’s going to be able to recover with medication and therapy alone. Her brain needs a reset. I suggest ECT.”

ECT, short for electroconvulsive therapy, is a procedure used to treat depression and other mental illnesses. It involves sending electrical currents in to the brain in order to produce a small seizure. It is controversial, has a heavy stigma attached to it and some potential negative side effects. It has a long history of abuse and improper use. It has been negatively portrayed in the media and in fiction. It is surrounded by fear and misinformation. Some people regard it as barbaric and dangerous. For those reasons my mother said she did not want me to undergo ECT at that time. She regrets that now.

My inpatient stay was followed by outpatient group therapy. The therapist that led the group said that the things I said to the other group members were so wise and compassionate, she only wished I could be that way with myself.

I also saw another psychiatrist. When he heard that I’d dropped out of school, he gave me a puzzled look and said “You were doing so well. Why would you do that?”

“I don’t know” was my response.

When someone behaves in a bizarre, erratic, maladaptive way, it is often expected that they will be able to explain why they behaved in such a manner. After all, they were the ones who chose to behave like that. The truth is that the brain is an organ just like the heart, the liver and the kidney are organs. Just like the heart, the liver and the kidney, the brain is subject to all kinds of biological functions and dysfunctions, the mechanisms of which the owner of those organs is not always privy to. Sometimes asking a mentally ill person why their brain went haywire is the equivalent of asking a physically ill person why their heart, liver or kidney went haywire. A lot is said about people who are not mentally ill being unable or unwilling to understand those who are mentally ill but sometimes those who are mentally ill have trouble understanding their own mental illness.

The general lack of understanding that surrounds mental illness means that a mentally ill person is bound to hear some rude, hurtful, insensitive comments about their mental illness. Sometimes these comments are well intentioned and sometimes they’re just fucking mean. I would put comments like the one made by the nurse who admitted me to the mental hospital in the former category but unfortunately I also had people in my life who made comments that fell in to the latter category.

One person in particular said that he didn’t believe that all my problems were caused by my disability because there were people with no arms and no legs who made lives for themselves, that his son was kind of a disappointment but I was more of a disappointment and that he would go on having fun with his life while I was locked away in an institution.

All of those comments involved comparing me to other people. Making comparisons to other people is usually pointless. It usually just ends up hurting rather than helping in any way. Temple Grandin is usually the example that’s trotted out when one wants to inspire or shame someone on the autism spectrum but this guy was bringing up all those wildly successful people with no arms and legs. I have no idea what purpose telling me I was more of a disappointment than his son was supposed to serve other than to make me feel bad and I was feeling bad enough as it was.

As for the institution comment, my mother was not ready to institutionalize me but it was becoming apparent that I was in no shape to go back to school and soon it became apparent that I was in no shape to remain at home either. I posted a trigger warning in the first part of this mental illness saga but I’m going to post another one now. Seriously, if you’re easily offended, easily grossed out or if it’s important to you that you maintain a high opinion of me, then stop reading right now.

After I was released from the mental hospital, I began calling my mother a cunt, spitting in her face and urinating in cups that I left on my bedroom floor. When asked why I was doing that I said that I found using the toilet to be too much effort. Than I engaged in an act so disgusting that I will not post the details of it on the internet.

I don’t actually remember doing those things though. My mother told me about them later. There are a lot of things I don’t remember about that period in my life even though in general I have an amazingly good memory. I did eventually get ECT and memory loss is a side effect of it so maybe that accounts for my memory gaps but it think it’s just as likely that I consciously or unconsciously chose to block those details out of my memory.

After the disgusting incident that shall not be named, my mother began searching for a residential treatment program for me. Finally she found one located in Idaho that seemed like it would be a good fit. They accepted me and she informed me that I would be going there.

 

 

 

 

Adventures in Mental Illness: Part 1

The first week of October was Mental Illness Awareness week. I wanted to write a blog post to honor it but since I’m behind the times as usual, I’m just getting around to it now. I’m generally not one to give trigger warnings but if you’re the kind of person who requires trigger warnings you can consider yourself warned. Mental illness isn’t pretty and the worst mental breakdown of my life, which I’m about to describe now, was very ugly.

This is the kind of stuff that would generally be considered inadvisable to post on Facebook and would certainly be considered inadvisable to post on a public blog but I’m going to post about it anyway. There’s a lot of shame and stigma surrounding mental illness. Many mentally ill people suffer in silence and are too afraid to speak out about their experiences. Not long ago I was one of those people but I’m not anymore. This blog may cause some people to judge me and mock me but I can deal with that. I care much more about the people who might be helped by a blog like this or who might realize they’re not alone in their struggle with mental illness than I do about the people who might decide to be jerks about it. The people who might be helped would make the jerks worth it to me. Moreover, since this blog is called Crazy-NOS, I think I owe it to my readers to describe the time I went completely batshit crazy ( I say that in a tongue in cheek manner. I know that mental illness is not synonymous with craziness.)

Sometimes mental illness occurs in conjunction with physical illness, physical disability or a developmental disability. I have a developmental disability that falls somewhere on the autism spectrum and I’ve been told that the depression I’ve experienced is related to that. I think that’s definitely a major factor but I may have been prone to depression anyway. Since it’s hard to parse out the developmental disability from the mental illness, we’ll never know for sure.

Both my developmental disability and my mental illness have required extensive treatment. I’m going to begin this story at the point in my life when I’d just left a residential program for young adults on the autism spectrum. I’d done fairly well in that program and was in pretty high spirits when I finished. I’d just completed my associates degree and the next step was university. I’d been to university before and hadn’t done so well but this time I was confident I would do well. After all, in the autism spectrum program I had won the award for most improved student.

Shortly after I left that program I got a text message from a woman we’ll call Tammy. Tammy was a former staff member who had been fired for stealing money from an autistic client. Against the advice of my psychologist I had become friends with Tammy. When she was fired I was devastated and against the advice of all the other staff I continued to remain friends with her. I even threw macaroni and cheese at another staff member to defend Tammy’s honor but eventually after she stood me up on multiple occasions I decided she was just not a good person to be friends with and I stopped talking to her. She still sent me text messages occasionally but I ignored them. They were pretty boring and innocuous so they were easy to ignore.

This text message, however read “I just got a job at a mental hospital and need to spend 24 hours hanging out with a retard so uh, want to hang out?” I asked her what the hell was up with that text and she replied “It’s a joke.”I did not appreciate that joke for multiple reasons. For one thing ‘retard’ is an outdated and offensive term. Secondly, patients in mental hospitals are not usually intellectually disabled. I’m sure some mental patients are intellectually disabled but many of them are very intelligent. I’m sure some intellectually disabled people are also mentally ill but mental hospitals are intended to treat mental illness, not intellectual disabilities.

That joke seemed especially mean spirited because I had been upset when she’d stood me up after making plans to hang out with me and because people on the autism spectrum are sometimes referred to as retards in a taunting manner due to their disability. “You should lock yourself up in a mental hospital” I replied.” Her reply to me was “Why? I don’t cut myself or twitch.”

Some people who suffer from depression or other mental illness engage in self mutilation. I cut my arms with a razor for the first time when I was 14 years old and shortly afterwards I was sent to a mental hospital for the first time. I continued to cut myself sporadically for years. I cut myself once at that residential program and Tammy witnessed the aftermath of it. Some people on the autism spectrum “twitch” as they engage in stereotyped movements and self stimulatory behavior. I have engaged in that kind of behavior my whole life and Tammy witnessed it many times.

Tammy went on to refer to me as a leech and a spoiled brat. She said she felt sorry for my parents.She made fun of me for never having had a job. She said that I didn’t make it at my last university and I wouldn’t make it at this one either because I wouldn’t have someone holding my hand. She said I would never be anything more than a graduate of a retard program.

I won’t pretend that I didn’t say some nasty things to Tammy as well because I certainly did. I called her a scumbag and pointed out that she didn’t really have room to criticize me for not having a job when she had been fired from her job for stealing money from an autistic client. Tammy was a very large woman so when she said she was laughing her ass off at me I asked if laughing her ass off was her new weight loss plan. However, I’m pretty sure that in this situation the onus was on her to behave with integrity.

My psychologist had warned me against becoming friends with Tammy because she felt that a friendship between someone in my position and someone in Tammy’s position was a violation of boundaries and could potentially be harmful to me. I brushed off my psychologist’s concerns because I’d had friendships like that before and they’d all been helpful to me, not harmful.

The truth is there is a potential danger in friendships like that because there is an uneven power dynamic that one person has the ability to exploit to their advantage and use to harm the other person if they so choose. The client, whether they’re a current client or a previous client is vulnerable in a way that the person in the helping position is not and the person in the helping profession is powerful in a way that the client is not. They will have gained insight in to the client’s vulnerabilities and will know how to hit them where it hurts. This had never been an issue for me before because the people in helping positions who befriended me never had any desire to hurt me. They were kind, ethical people who cared about me deeply and who only wanted to help. Tammy was not a kind or ethical person. Her own mental issues interfered with her ability to care about me and sometimes she did want to hurt me.

She succeeded in hurting me. Her words still hurt today when I think about them but at the same time I try to find them funny in a not funny at all kind of way. I tried to do the same thing at the time they were said. The things she said were just so inappropriate and she really had no room to criticize my flaws like that considering her own flaws. Moreover, I was determined to prove her wrong. I would make it at this university and I would do it without having anyone hold my hand.

My mother had some hesitations about leaving me alone at a university in Florida while she was in New Jersey . She made me promise that I would seek out the disability support services of the university but I did not keep that promise. That would entail having someone hold my hand, which I had decided I did not want or need anymore. The first semester I did just fine without having anyone hold my hand. In fact I did quite well. I got good grades and I made friends. In my psychotherapy class one of the assignments was to write a sample personal statement as if you were applying for grad school in psychology. I talked about how I felt my own personal experiences with mental illness and disability gave me insight in to those issues and empathy for people who struggled with those issues.My professor said it was one of the best personal statements he had ever read. I had friends say that they admired me for continuing to go to school and keep going when I’d faced so many struggles with disability and mental illness. I had friends say that I didn’t need to feel bad about situations that had not worked out for me in the past, that they were glad I was doing better now and had found the tools I needed to succeed. When a group of my friends came in to my dorm room with a cake for my birthday I remember having the thought “Life is good now. Self destruction is not attractive to me anymore.”

Self destruction had been attractive to me at many points in my life. Over and over again I would deliberately sabotage myself emotionally, socially and academically. I vowed to stop doing that but unfortunately that also ultimately ended up being a promise I didn’t keep.

I continued to do well for most of the second semester. I continued to get good grades, I continued to make friends and I participated in extracurricular activities. One night while I was eating dinner with my friends the subject of depression came up. Some of my friends had personal experience with depression and of course I had personal experience with it too. One of my friends said that she had tried to kill herself and she asked me if I had ever tried to kill myself. I told her that I’d had thoughts about wanting to die but I’d never actually attempted suicide. Another friend said that he had struggled with depression and had tried many different treatments but he refused to try medication.

I had been on medication for depression for years and had tried many different types of medication. My friend certainly wasn’t the first person I’d encountered who had objections to psychiatric medications. I didn’t have any objection to them myself and I usually dismissed the objections of others but when my friend made that comment it planted a seed in my head. I was doing so well now. Maybe I didn’t need medication anymore. I did realize that my medication might be part of the reason I was doing well but in a sense taking medication was like having someone hold my hand and now I wanted to get by without hand holding from other people or from drugs.For the first time in years I felt like a semi-normal person. I knew I would never be a completely normal person and I did not want to be a completely normal  person but I thought it might be nice to be the kind of person who could get by without psychiatric medication.

I did not make a conscious decision to stop taking my medication cold turkey then and there.  I still took my medication but I wasn’t as vigilant about it. My friend’s words weren’t the only factor that contributed to me not taking my medication either. My second semester I was put in a gross, hot, moldy dorm. The atmosphere of the dorm was causing my medication to melt and that seemed like another reason not to take it. Complaints that were made to the university about my dorm being gross, hot and moldy were dismissed but complaints that my medication was melting were taken seriously and I was moved to another dorm. In my new dorm room my medication did not melt but by that point I had gotten used to not taking my medication and I was starting to go downhill. Of course if you’ve stopped taking your medication and you notice that the ceasing of medication corresponds with a decline in the state of your mental health the logical thing to do is to think “Huh, maybe there’s a correlation between me not taking my medication and me feeling bad. Perhaps I should resume taking my medication.” Unfortunately mental illness is  often not very logical.

When I came home for winter break I spent most of my time in bed and I didn’t speak much.

“My god, Kira, you’re a zombie. What’s the problem?” my mom asked.

“I’m just miserable”

“But why? Things are going well for you. You’re getting good grades in school, you have good friends, you’re enjoying the volunteer work you do. There’s no reason for you to feel this way .”

“I don’t care. I do feel this way.”

“But you seemed happy a month ago.”

“Well, I’m not happy anymore.”

“What’s changed?

“I don’t know.”

“You haven’t been taking your medication, have you?”

“No, not really.”

“Well, that would explain it. You need to take your medication every day.”

Of course I should have listened to my mother but did I?  Nope. When I got back to school she called me every day to remind me to take my medication but I only took it every once in a while when I could be bothered to do so. I’d reached a point where even reaching in to my medicine container, pulling out the pills for the designated day and finding some water to swallow them with felt like too much effort.  Eating felt like too much effort too. I often skipped meals because I couldn’t be bothered to walk down to the cafeteria.  I also couldn’t bother showering regularly.

Not taking my medication was not technically a fatal mistake because I’m still alive today but it was a mistake that nearly killed me emotionally.

A dark cloud had descended on my life. My classes were no longer interesting to me, my volunteer work was no longer rewarding to me and hanging out with my friends was no longer fun for me. I just felt sad all the time. I continued to spend a lot of time just lying in bed. My thoughts turned to all my failures in life and to how much of a failure I was as a person. When I talked to my mom about how much I messed up at my previous university she said “Well, then don’t mess up at this school too. You’ll be so sorry if you do.”

What my mother was saying was very logical but at that point I was not listening to logic. I had gone in to self destruction mode. I tend to go in to that mode when I feel overwhelmed. I get in a frame of mind where I want to make bad things happen to myself. Well, maybe want is the wrong word.  I don’t really want bad things to happen to me but I feel compelled to make them happen if that makes any sense. Actually it probably doesn’t make sense. Trying to make mental illness or the world in general make sense is probably an exercise in futility.

As you will see later in this mental illness saga, eventually several people suggested that I was hearing voices  that caused me to do the things I did. I never heard any voices but I did hear thoughts. My mom would say things to me like “Kira, you’re headed down a dangerous path here. If you keep going down this path you’re going to have to withdraw from this school and you’ll be so sorry if that happens. You need to take your medication, eat your meals, talk to a psychologist, talk to your friends, set yourself up with disability services” and in my head I’d have the thought “No, I’m not going to do any of those things. I’m going to withdraw, I’m going to withdraw, I’m going to withdraw.”

Sometimes I’d have the thought “Maybe I should do those things my mother suggested. They might make me feel better” but I usually didn’t get around to doing those things and when I did I only did them half -heartedly. Since my mother realized that at that point I wasn’t going to reach out myself to people who could help me, she tried reaching out to them for me. She called the psychologist I had at my autism spectrum program and told him what was going on. He left a message on my answering machine asking me to call him back. I didn’t.

For months I refused to see a psychologist but one day after I got a C on a test in a subject that I would have expected to be good at, I decided I couldn’t take it anymore. I marched my butt down to the university counseling center. I think I made quite an impression on the therapist that saw me. God knows how long it had been since I’d eaten or showered.

“So, what’s going on?”

“I’m really depressed and I want to kill myself.”

“I can see that you’re in a really bad state. I think that at this point you need to take a mental health withdrawal. Is there a parent or anyone else I can call about you?”

The psychologist called my mother and told her I needed to withdraw. She said that if I refused she would have to Baker Act me. The Baker Act is a law that allows for people to be forcibly committed to a mental hospital if they are danger to themselves or anyone else. My mother was busy with work so she asked if I could fly home myself. The psychologist said no, I was in no condition to travel by myself. She needed to come get me.

In the hotel room I had an “Oh my god, what have I done?” moment. In the beginning I had been so determined to succeed at this school and I had enjoyed it so much. Now here I was failing at school and at life yet again. Tammy had been right about me not making it at this school and my mom had been right about me feeling so sorry about withdrawing from it. I told my mom how horrible withdrawing made me feel. She could have easily said “Told you so” but being the loving parent that she is she assured me it was not the end of the world, I could go back and everything would be all right.

Unfortunately mental illness would continue to take its toll on me and for a long time things would not be all right.