Risk, Stigma, and ECT
Last time I talked to you about why I chose to try ECT, or more specifically, my history of depression. Many people called me brave, and I thank you for your kind words. This made me consider, though, exactly what bravery is. Most people think of brave people as those who take great risks. There are many kinds of risk, but even in cases where a split second decision is required, you will rely on what you know. You will make an assessment. Is the risk I’m taking worth the possible costs?
For instance, you might decide you want to go bungee jumping. What are the risks and what are the benefits? Everyone’s different, but I’d probably look at it like this.
Risk: You could fall to your death and die.
Benefit: Wee, it’s fun!
I belieeeeeve I can fly!
In this case, I’d decide that no, jumping off a cliff, even with a rope tied around my ankle, is not worth risking my early demise for benefit of an adrenaline rush (I don’t even have to pay for those!). On the other hand, when I made a decision about getting ECT, I looked at the decision this way.
Risk: Very Expensive. Memory loss. Cognitive problems. Pudding brains.
Benefit: I might feel like living, and my life become more worthwhile, for myself and those who love me.
In order to make this decision, I did my research. I can research the crap out of anything, taking hours to find out which shampoo brand is the best, which makes me a great librarian though sometimes an annoying person. So after my psychiatrist asked his students in front of me what was available to those who didn’t respond to drugs, they said, as one example, ECT. When he asked them what it stood for, they hesitated, and I said “Electroconvulsive Therapy.” Give me an A.
You might think my psychiatrist is mean asking his students these questions in front of me, but honestly I think he just loves to mess with them. The best way to learn is to do so in a real setting. I could have refused the students had I wanted to, but it turns out I find their suffering entertaining as well. Anyway, at first I said, “Yeah, nope”. I’d heard plenty about ECT, and Sparky had always told me to watch myself around electricity, so this seemed a no-brainer.
My psychiatrist told me what ECT was like now, and how much it had changed from the days of “One Flew Over the Cuckoo’s Nest”. He bemoaned the fact that there is so much stigma, and that this and politics often dictated whether a variety of treatments are available to patients. For instance, ECT was once available near my home town, but it was taken away. The closest hospital that offers ECT now is over a five hour drive from where I live. “In the end,” he said. “They take it away, and the patients suffer.” He said he has seen it work because he’d administered it himself. “I am convinced you could feel better in as little as two weeks.”
What exactly takes place during ECT? I won’t know until I’m there, and even then I’ll be asleep most of the time, but I did find this video that shows the procedure.
A little disconcerting? Slightly. On the other hand, it’s also a far cry from what they did to Jack Nicholson. As you can see, the actual shock lasts seconds, and only one part of the body shakes to show there is a seizure. Oxygen is given, anesthesia, and something to stop the convulsions. But just look at those people helping with the ECT, holding his hand, smiling gently. Vultures!
By this point, as I said before, I’d been through years worth of drugs that eventually failed. Some of them had dangerous side effects, just as dangerous as ECT’s side effects, or worse. If you get right down to it, everything carries a risk of side effects. Childbirth is risky, even if you’re young and healthy. I know, because at 27, I had to wait two weeks for tests to find out if my baby was mentally handicapped. She turned out healthy, but it did shock me into reality. None of us is immune to tragedy.
So I researched, and so did my friends. As I mentioned briefly earlier, I found a little straight forward information, and many, many websites full of warnings and sometimes near hysterical accounts from patients. I realize that this treatment doesn’t work for everyone, but the success rate is listed at near 80 percent. Even if that data is wrong, and it’s only 50 percent, or heck, 5 percent, is this something we should deny desperate people? Chemotherapy kills your body’s cells, both healthy and cancerous, yet it is a common procedure for people with Cancer. Rarely do I hear of someone cautioning a person “You know Chemo is barbaric. Don’t do it!!!” The reason you don’t hear this is because, unfortunately, for now it is one of the few treatments that have been shown to succeed. It takes a terrible toll on the body, and it doesn’t always work. But what else should a person do? Take vitamins? Smoke kale? Tell me, what else should they do?
What else should terribly depressed people do?
That is why I don’t presume to tell others what to do with their own bodies. Screaming that a treatment – whether pills, a medical procedure, or even eating kale (you might choke)- is barbaric, outdated, and cruel could scare people away from the one thing that might help them. I did find one blog written by Natasha Tracy, advocate for mental health. She had a terrible time with ECT. But she fights for it to be available, because she knows that her experience is not what everyone will experience. What helps you could hurt someone else, or vice versa. I encourage you to visit her website; it is full of good information. It is also full of really angry people in the comment section. But she keeps writing.
I am aware that writing about this could open myself up to a lot of these same angry people. But so many have helped me over the years, and I want to help someone else. I want there to be more information about what ECT really is, and how it works. I want people to find an account that is from a real person, but still factual. Even if it’s a bad experience for me, I want to demystify this treatment for Depression. That’s why I decided to write. I weighed the risk (testing out the waters with a friend), and I made a decision. Eventually you have to stop researching, and make a choice, just as I did to try ECT.
I have much more to talk about, but I’m running out of space. I will tell of what the actual process of preparing for ECT entails (hint: you don’t walk right in and get shocked), and how I went about figuring out how I was going to get there in the first place. The decision was one thing. The execution of that decision, quite another.
Remember: Everyone is brave in their own way, just by getting up in the morning.
Stay tuned.
~Alice
Why I Am Trying ECT
“What if you get all the way up there and there’s nothing?”
“What if there’s everything?”
– from the movie Tomorrowland
Earlier Merry at Knocked Over By a Feather wrote about a friend who is preparing for ECT treatments. That friend is me. You may have noticed, if you read my blog much, that I haven’t exactly been posting a lot lately. I’m sure the lack of informational posts about Trump, boogers, imaginary ponies, etc., have left you in a lurch. I hope to get back to that at some point, but right now things aren’t going so well. This is nice speak for “There is no need for Hell; I’m here guys!”
The reason I asked Merry to write about it first was because I was afraid of the responses. I’ve researched ECT, (electroconvulsive therapy or “shock therapy”), for nearly two months now, and most of what I find are horrifying stories. Yet ECT is often successful at treating depression, or at least raising you to a point where you can treat your depression. The minority write the scary stuff, and shout down the ones who have positive experiences. I’m not saying people do not have bad experiences, but what one finds positive and another finds positive can be very different. If you are so depressed you can’t function, side effects, even serious ones, can take a back seat to even the possibility of getting well.
I don’t like to talk that much about my illnesses. Alice is supposed to be funny – to a select group of people anyway. (Hi, friends!) Some might say it’s because I use humor as a defense mechanism. Humor at least makes the awful go down a little easier. These illnesses are not something to joke about, though, especially not to the new psychiatrist who is in charge of the ECT program. He seemed to think my joke about the butcher knife was not funny. Killjoy.
That’s not funny, Alice.
I feel like I should offer you my history, because I did not wake up one day feeling sad and decide to go get my brain shocked. It doesn’t work that way. ECT is, in general, a last ditch effort when other treatments have failed. We have come a long way in mental health treatment just within the last few decades. Now, thankfully, we have antidepressants that do work for many people. They might even work for Scientologists, though I fear their problems mostly stem from being jerks.
And that’s another issue. It’s hard enough to juggle a chronic illness like Depression without dealing with other stress. Most people have to work. You’d be amazed at the number of people who have worked for years with the black dog dragging them down. Don’t tell the cute college students, but work kind of sucks at least part of the time, even if you like your job and your coworkers. I have been in my job as a library assistant at a university library for over seven years now. If it were not for the people I work with, especially my direct boss, I would not still be working. Like far too many people, I would be forced onto disability. Depression is the second greatest reason for people taking disability now. Only heart disease has more people.
Depression: We got second place!
Yet even with my decent working conditions, I am struggling to keep afloat. I already take antidepressants and anti-anxiety medication. These help me if all conditions are going well, but stress is always present, and it doesn’t take much for my cup to runneth over. When you are depressed, everything becomes difficult. Bit by bit I’ve watched as I’m able to do less and less. Reading back on old blog entries, I can see my downward trajectory. For a well person, a stress would be your car breaking down. For a depressed person any of the following will do:
- Getting out of bed
- Putting on clothes
- Doing laundry so you have clothes to put on
- After that shower you haven’t taken
- Brushing and flossing your teeth
- Putting on makeup – sorry I made myself laugh there
- Getting your hair cut – I am now Rapunzel
- Taking your children to school in traffic
- Walking into work. And the day has just started.
I should probably look into that haircut.
People who are well have a hard time understanding this. Depressed people don’t understand it either, because often there is a disconnect between what part of your brain knows you should be able to do, and what the other part is willing to let you do. This disease does not exist in a vacuum – it exists in an ever winding circle involving illnesses both mental and physical. IBS, Asthma, auto-immune diseases, chronic pain, and even the heart disease that is winning the disability race all wind round and round. Did the depression cause the illness, or did the illness cause the depression, or both? Where does it start and where does it end?
I’ve always dealt with respiratory illnesses due to being allergic to all of creation. But in 2012, I came down with a serious case of pneumonia. This wasn’t your walking, take a pill, back in a few days kind of pneumonia. By the time doctors put their tiny heads together and figured it out a week after symptoms started – a chest x-ray! What a wild idea! – the pneumonia had spread over my entire right lung. It was a miserable experience. If you want to hear about it with cartoons and jokes, just look up “pneumonia” in the search box. Anyway, I missed over a month of work, and even after I returned it took a couple more months to fully recover. I never recovered my sick or vacation leave at work. From that point on, I was always running behind, making up time for being sick or going to appointments because I could never keep any leave. I almost never have a week with no absence. For the last five years I have wondered when they would fire me. At times, I hoped they would, because I was just so tired.
Pneumonia. Surprisingly not fun.
The depression came next. I’d been fairly well for the last several years on the meds I was on. Yet each major stress would cause a pill combination to fail. It didn’t help that my shrink was a psychotic idiot. I thought I had no other choice because I lived in a small city. He gave me meds, then if they didn’t work, he yanked them and threw others at me. Often there was no way to know what, if any, of my new meds were working and which were not. All these medications have side effects. One, Abilify, made me feel great for about a month before I was taken off of it for a 10 pound weight gain. I would be put on it another time at a lower dose, only to be taken off it once more after a few months because I was climbing the walls. I also developed a tendency to shop online which, along with gambling and other risk taking, is another possible fun side effect.
By the time I finally found another psychiatrist, I had been hospitalized three times. I fully believe that people should go to the hospital if they are suicidal or even just so desperate they can no longer cope. But after the first visit at my hospital, the other two were lousy experiences. I have a couple of these stories on the blog as well. However, the one good thing about the hospital was that you did not have to cope with the outside. They gave you meals. They gave you pills. You went to group. The other people could be kind of scary, yet you still felt a belonging with them. And while you wanted to leave, it was hard to return to the outside.
Psychiatric Hosptial Revolving Door
My new shrink is not perfect, but at least he looks me in the eye and seems to care. I encourage everyone, if possible, to shop for a good shrink. This guy is messing with your brain and body. It’s good to trust him if at all possible. No, most shrinks are not going to have long talks with you. They prescribe medicine because they have big brains filled with knowledge that does not always include common sense. Common sense is for counselors. Don’t be afraid to try talk therapy if you can, because it can be very helpful. Some people are able to get by with it alone. Some use it and medication. But for some, both of these stop helping after a while. I found myself on a cycle of new pills, everything okay, new stress, pills fail, rinse repeat. Finally my doctor suggested ECT.
I know I haven’t discussed much about the actual ECT, but I plan to in the next posts. My history is important though, because all of this weighed into my decision to try this treatment. It is my hope to detail the process of getting ECT (it is NOT easy) and then the actual ECT itself. Since I am told I will lose memory, I figure I should write down what I can when I can. My hope is to help other people who are faced with such a decision with information and not just fear mongering. ECT could fail. I could be worse off than before, but then again, I could be better. My family deserves for me to try this. I deserve to try this. I don’t want to spend a life in misery, and I’m willing to try whatever it takes.
I will officially start ECT on June 5th.
So here goes. Geronimo.
~Alice
aliceatwonderland 