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 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.