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 8

The days, weeks and months following my release from Payne Whitney are even more of a blur to me than the time I spent in the hospital is. I remember very little about that time period. I was still on anti-psychotics, I was still a zombie and I was still miserable.

Years after I was released from Payne Whitney I expressed interest in volunteering at a local preschool for disadvantaged children. My mother told me I might not be welcome there. Shortly after I was released from Payne Whitney she had sent me to volunteer there in an effort to get me out of the terrible funk I was in. I was asked not to come back because I was behaving inappropriately and ignoring the children. I had no memory of this. I’m sure it’s one of many things that occurred during that time period that I have no memory of.

In the years that followed Payne Whitney I underwent many different treatments for my depression. There were the conventional medication and therapy treatments as well as some more unconventional treatments. There was the Ketamine nasal spray that sent me on a cool ( and totally legal) drug trip but left a very unpleasant taste in my throat and did nothing to alleviate my depression. There was the Transcranial Magnetic Stimulation which filled my ears and head with very unpleasant noises and vibrations without alleviating my depression and without even giving me the benefit of a psychedelic trip. There was the Dialectical Behavioral Therapy that may have had some value but put me in a group situation that I just wasn’t ready for or comfortable with at the time and that gave me a diagnosis of Borderline Personality Disorder that was about as accurate as my Schizoafffective disorder diagnosis.

A few months after I was released from Payne Whitney I saw a new psychiatrist named Dr. Deerberry. Dr. Deerberry was an elderly man and in all honesty he was at a point in his life when he should probably be considering retirement. He was rather scatterbrained, frequently forgetting scheduled appointments and my name. Yet in many respects Dr. Deerberry still had his wits about him and was a very good psychiatrist.  Ultimately he ended up being very helpful to me. You might even say he saved my life.

Dr. Deerberry was skeptical of my Schizoaffective Disorder diagnosis. He said “If this is Schizoaffective Disorder, it’s much more affective than it is schizo.” He took me off the antipsychotic medications and he recommended an alternative treatment called electronconvulsive therapy (ECT, also known as shock therapy.)

You may recall my mention of ECT in Episode 2 of this mental illness saga but since it’s been a while let me refresh your memory.  ECT is a procedure done under anesthesia in which electric currents are sent in to the brain in order to trigger a seizure. It has a history of being used abusively and without the patient’s consent. It potentially has some serious negative side effects including memory loss.

If that sounds scary to you, you’re not alone in feeling that way. ECT is a widely feared, highly controversial procedure with a heavy stigma attached to it. Dangerous, barbaric and inhumane are words that are frequently used to describe it. There are groups of people who advocate to have it banned.  Its portrayal in fiction and in the media is overwhelmingly negative.

It was first suggested as a treatment for me when I was put in a mental hospital in New Jersey after I withdrew from school in Florida.  My mother did not want it done to me then because she was afraid and I wasn’t interested in it either. When it was suggested again by Dr. Deerberry my mom still had her hesitations but we were running out of other options. I was in a very bad state and none of the treatments were helping.  We were assured that despite the bad rap ECT has, for the most part it is safe and it is often effective in alleviating treatment resistant depression. We had reached a point where the risks associated with me remaining in the state that I was in seemed greater than the risks associated with ECT. My mom said she wanted me to try it.

As for me, I’d seen One Flew Over the Cuckoo’s Nest and Requiem For a Dream, which depict ECT in a very scary and negative light but I knew that fiction doesn’t always reflect reality and that ECT has come a long way since the days of One Flew Over the Cuckoo’s Nest. When I was in high school a classmate of mine underwent ECT. I hadn’t thought that what was being done to her was cruel or barbaric but I had thought that it was sad that she was in such a bad state that doctors were resorting to such drastic measures to help her. I never imagined that some day I would be in such a state.

Clearly I was in such a state now though and had been for some time. I had little hope that ECT would work for me because I didn’t believe anything could help me at that point but it seemed worth giving a try.  The potential negative side effects didn’t bother me because at that point I didn’t care much about my memory or my health and it seemed unlikely that it would produce side effects that were any worse than the things I’d experienced in the last year or so. I agreed to it.