The Terminated
I Won’t Be Back.
When I started my ECT treatments, I was prepared to document my journey. I wanted others to see that it wasn’t barbaric, so that they too could have a chance at putting a lid on their depression, at least for a little while. I thought I would get a dozen treatments or so, and I’d be done. All better. That didn’t quite happen. Oh, I am better, much better than I was, but my new normal is nothing like what I expected it to be. ECT wasn’t bad or good but a little of both, and the aftereffects are even more mixed.
First of all, those 12 treatments turned into 3 months of constant travel to a city six hours away, at times all the way there and back in two days, other times with a week in a hotel room. They gave us a hospital rate, but that hotel wasn’t free. We never unpacked our suitcases. We hardly bought groceries. Our kids got really sick of staying with grandparents. My husband and I both missed work, since I had to have someone with me for the treatments. I was long past any sick or vacation leave, so I got no pay. He got pay, but I worried they would fire him.
They didn’t. Thank goodness. No, they fired me. Or as the university likes to call it, they “terminated” me.
They aren’t specific with that terminology. Anyone who leaves the university is “terminated.” After student workers quit, my coworker would say “Madison has been terrrrrrminated.” in a threatening voice. And these were people who chose to leave. In fact, I do not recall in my seven years at that workplace anyone ever being fired no matter the gross misconduct. Just me.
Technically I was terrrrminated for, as the letter called it, “excessive absenteeism.” Oh, yeah, it was a letter. No in person meeting. No phone call. No warning. After getting two degrees from that place. After working two different jobs at that place. After struggling just to get up in the morning for so many years, after keeping a job when anyone sane would have quit to rest, after using all my energy for said job with hardly any left to spare, after spending so much time worrying about that job that I couldn’t let myself heal, I opened my mailbox to find a letter.
I’ll simplify what it said. “Hello Alice. I realize that after seven years of a family work atmosphere with people you called “friends”, you thought maybe you might survive your latest bout of illness. But this time you went over your FMLA, that stuff that the government amazingly still offers that lets you have twelve weeks of unpaid time off for pesky things like illness. It’s almost like we were just waiting for you to go over that block of time, and throwing down the hatchet right when you did it. Sure we could have warned you, or heck, called you even ONCE while you were out on leave to check on you, but that would acknowledge you had a real illness, not to mention take time from our schedules. Nevermind that your brain has been shocked into seizure over twenty times, you really shouldn’t have abandoned your job. But you did, so give us your keys and your ID card, and clean out your desk.”
I have been through many emotions after losing my job on August 24, well technically the 22nd, as it took two days for the letter to arrive. (For two days I was fired, and didn’t even know it!) Yet the first thing I felt when I read that I no longer worked at that place was relief. For the first time in a very long time I could breathe. When you have a chronic illness, it becomes another job. Add in parent, spouse, maid, cook, etc – each one a job in itself. No one can do that much, so you start dropping jobs. I stopped cooking. I stopped cleaning. Self-care also fell by the wayside. Depression isn’t big on letting you shower anyway, and add in a severe time crunch, and you can forget it. And this was all before I decided to try ECT as a last ditch effort to help me cope with a disease that has plagued me sense I was a teenager.
Yet the relief was short-lived as I now face a very uncertain financial future. I had wanted to quit, but I felt like I could not. We needed the money, especially after months of no pay AND high medical bills that had gathered up on my kitchen counter. We needed the very good insurance to pay for all my medical woes. I spend thousands each year just for daily medications I get from the pharmacy. My mother pointed out that this might be a reason for them wanting me out of there. Insurance companies aren’t happy when they actually have to pay back some of those premiums.
I feel guilt because of the financial losses my family has taken due to my illness. It isn’t my fault, but that really doesn’t make me feel better. I am far from the only one. It’s all over this supposedly great country: families who work hard but live on the brink, one medical disaster away from total bankruptcy. I know so many this has affected. A hairdresser and family friend who was denied insurance because getting Colon Cancer was a “pre-existing condition”. She’d already had Breast Cancer, no fairsies getting it again. I have a friend deep in debt for trying to keep her chronically ill kids alive. I have a friend with Fibromyalgia and Depression. She had to quit her job because constant debilitating pain forced her to do so, pain many doctors don’t even believe is real. A blogger friend just sold her house to help with her massive medical debt. As she said, all because she got sick.
My brother has struggled with Type 1 Diabetes and Bi-Polar disorder since he was a child. My parents have struggled with being his caretakers. Bipolar disorder and Diabetes are a double whammy. Not wanting to take care of yourself is one thing when you don’t need insulin and a healthy diet to survive. He has already lost part of a toe. Yet my parents spend money they worked hard for all their lives to help him survive, because he cannot stay in a job.
I was supposed to be the Golden Child. In spite of 3 degrees, I have failed. Over and over. I was forced to resign from one job, and forced to quit another due to intolerable working conditions. And these were just my “professional” jobs. Those jobs, and the latest one, were all at libraries. Maybe I shouldn’t like to read so much.
I am lucky, because I have had the help and support of so many people. There is no safety net here for most people. They stop or ignore needed medical treatment every day because they can’t afford it. They can’t afford tests that could not only make their treatment less expensive in the long run, but save their lives. It’s all about money here. God forbid anyone raise taxes.
Let them eat cake.
We need a change. Maybe we don’t have the power to stop these diseases ourselves, but we have power to lessen willful ignorance. We have the power to decrease selfishness and cruelty. Do not doubt your ability to help someone feel better with a simple word, a kindness, an embrace, or a novel length blog post.
And don’t forget to vote. Vote for those who would choose kindness and mercy over greed. Who would help people who are too sick to help themselves. Who would pass laws enforcing humanity in workplaces, in insurance companies, in hospitals. Who would let sick people think only of getting well. If we don’t find those candidates, we can create them. Surely the “greatest nation” could do something as simple as take care of its own.
~ Alice
Back to School, Therapy, and Dueling Shrinks
I’ve been in therapy many years, and if there’s one thing I’ve learned, it’s this: the best way to determine your sanity is by how well you tolerate your doctors. I saw the Dallas doctors, and insisted repeatedly and to several people – including the nurses, the nurse practitioner, and finally the psychiatrist – about wanting to have a definite time for treatment to end. By the way, you get to talk to the psychiatrist on the hospital bed while they are preparing to hook you up to a machine – not distracting at all! Don’t worry, I was prepared to leap off the table and do karate-like chops had they decided to go ahead and treat me. I might have ended up in the looney bin, but their looney bin is kinda like a hotel as compared to the one in my hometown where people are stacked like cord wood- I saw pictures. Also my friend is a lawyer. So you know, I was prepared.
How could it possibly be awkward for you to talk to me this way?
As expected, he got “oh-no-doctor-frowny-face” and rambled on about how studies show something- something. I said I want to know how many more treatments cause I’m ready to stop. Again. So he finally came around with spacing out two more treatments. One two weeks away, and the next another couple weeks. Well, he said two to three which to me means TWO. So I got knocked out, and they did whatever they do while I’m asleep – supposedly the treatment but you know they could be animating me like in that movie Weekend at Bernie’s, I don’t know. Then we did the long, long drive home but this time I was more sleepy than usual, so I don’t remember as much.
After getting home, life moved on. My Things started school again – weeeee! Thing Two is in 8th grade this year – one more year of dreaded junior high – and Thing One is . … . a junior in high school. Because I am kinda old. I was helping them fill out paperwork and remembering when I first filled out paperwork for Thing One at the pediatrician’s office. Under “Mother’s Name” I wrote my mom’s name. Now she’s 17 years old, and next year she can vote. Thank God! She and Thing Two should have been voting in elementary school. I believe in something called “mental age voting” which means that younger people who use their brains can vote, but older people who don’t use brains can’t. As I signed, Thing Two told me her teacher said most of us parents could be signing up for almost anything because we don’t look at what we’re signing. I protest – had that been a PTA form, you can bet I would have avoided it.
That’s a watermark there, but I like to think of it as a black hole.
Later that day, I went to see my local shrink. He wanted to know about my 10 to 12 treatments. Funny. When I told him it was slightly more than that, I got “confused-face”. Lovely. I explained how I got better, but then I didn’t, but then I DID, but then kinda not and so many treatments later here I was. Then I started to get rather angry. Just how many treatments was I supposed to have? This is rather important stuff here when you’re dealing with a human’s brain. I happen to have one of the few remaining working ones, so I’d rather not change that, thanks. This is why we have to be in charge of our own health care, cause you can bet they are not going to have a clue. Their heads are filled with stuff they learned in school, which does not include interacting with people. People like patients, or their own medical freaking colleagues, for instance. I guess I should have checked back, but when during all the travel and such? Got me!
My husband was there to hold me down.
On the plus side, everyone else thinks I am better. And I am, I guess, now that I have time to sit and think a little. It’s taking a bit to get back in the grove of things, but thank God for Google, which will look up anything I need. Like when I couldn’t remember where the italics were for just a second only to find them again on the toolbar above the text box in WordPress. I’m sure if I had actual Microsoft Word on here (my former computer guy used to get me bootleg Microsoft Word before he went to jail shhhh) I would know where that toolbar is as well. I also finally figured out how to get into a program where I can talk to a counselor over the computer! I think!
I should warn her there’s an article that says some patients were flashing doctors. Because of course they were.
I haven’t made it back to work yet. After this summer of FUN, not sure I’m ready for that yet.
~Alice
Maintenance
I think they’re trying to tell us something.
In case anyone was wondering why I haven’t been here in a month (I know I have), here’s an update. Still having ECT. Right now they say I am in maintenance treatments which is much like actual maintenance on highways and such- uncomfortable and lasts forever. I have been at this since June 5th or in my estimate, the beginning of time.
Earlier I promised to give a review of this controversial mental health treatment. Turns out it’s not really as cut and dry as medications. With those you can say “Well I took the Zufrika but it made me gain 15 pounds in my elbows and start watching Fox News so I stopped.” or “Scaramouchi gave me diarrhea but really got rid of my depression and I hope they get it back in stock soon.” It’s not either definitely successful or definitely a waste. I might be able to make a better determination after it finally ends, but it’s almost mid-August, and they haven’t given me a hint about when this stops for good.
When you start treatments, you generally do three a week, then you start spacing out once you feel better. I did feel better, enough that going back to work sounded good, but then as I mentioned I went back down again so I tried part-time, and then I tried no time. I have been on no time for a while, and though this has been good for my relaxation it hasn’t been so hot on my pocketbook. And it’s hard to tell just how much better you’ve gotten when you are still frequently driving six hours to a big city to spend the night, get shocked, and travel another six hours home again. The people at the hospital are nice, but that is wearing thin.
I should also note it’s not just depression but anxiety chumming around with me. And since the treatment meant stopping a medicine for that, I am Squirrel as often as Sad Pony. Vroooooom. Beep beep. Oh, if only I could feel better as easily as little boys, or our President, with a big red truck.
Twice I have felt much, much better. But each time I’ve gone back to – not so great. While yes I am better than I was before any treatments, I can’t really tell you exactly how I’m feeling now, because therapy requires way too much naval gazing. How are you now? How about now? Or now? Or now – compared to yesterday? Or last week? Or before you started? Here, fill out this sheet of questions about whether you are definitely sad, or kind of sad, or slightly less sad than that, or happy! What do you mean you’re confused?
I’m starting to wonder if I have to start lying on the “happy sheet” in order to make them stop. Tapering down on treatments is the best way to go – but this taper is not just slow it’s a crawl. I went from three times a week, to two times a week, to once a week. We might go back two weeks after my treatment tomorrow. And then – I don’t know. Three weeks apart? A month? How about a never? My brain may not be scrambled (completely – you have to remember the condition before) but I’m tired. Each treatment, besides being away from my Things and requiring a trip to Dallas, requires fasting the night before, having anesthesia, getting disgusting goop stuck in my hair, and then the fun waking up where I stumble around and hope someone catches me. It gets old.
I have many ideas for posts that I would like to write. I’ve not been good about sitting down to do it. Or at doing much else useful. It has been nice to just breathe. But I don’t quite know what’s next. I do want to get back to it, though, because a lot is happening right now! Maybe I will finish my treatment before North Korea blows up Guam! Or us! I definitely want to be there should justice actually happen and our dear presidente get taken to his next vacation home behind bars.
If I figure anything out, I’ll let you know! Probably. If you read this, feel free to leave me links to anything you wrote so I can have something to read. It’s good to get out of my head.
~Alice
Which road?
Two roads diverged in a yellow wood,When you’re out of commission as long as I’ve been, things tend to pile up. All those little things you didn’t feel like doing before are now in front of you. This is true for me even though I have had people help me so much. For instance, the church went in to help fix our air conditioner. While they were there, they figured, holy crap these people can’t find their floor – or their cabinets – or likely their sanity. So they cleaned also.
If you know someone who is ill either mentally, physically, or both, and you’re wondering what to do – that’s it. Clean. If they are at all open to the idea, it is a huge help to them, and they likely aren’t going to ask for it because it’s embarrassing. So that and cooking – both great ideas. They might even go to your church if you do it.
Anyway, in spite of this, I still find myself overwhelmed by the amount of stuff that I’ve gotten behind on. Since we had so many clothes, enough to make a new carpet and then some, they bagged many of them up in leaf bags for us to sort through ourselves. Which we will . . . eventually. But right now, the idea of even starting this project makes me itch.
Itch like my head, because now was a perfect time to come up with the little buggers. Sometimes I even wonder if I’m really better, but my husband assures me I am. I want to go out again, I want to do things again, I smile again. The problem is that there is so much left over from when I could do squat that I don’t even know where to begin. I was told I could skip my Friday treatment. So I did, and I went back on Thursday after getting home on Wednesday. I can’t even drive yet, but I’m back at work.
Or I was, until Friday around 10 AM when I had to go home. I just couldn’t figure out what to do with myself. Not like there weren’t things to do, but there were too many things both at work and at home that I was thinking about, and I had no idea how to prioritize them. Of course I know now that the head itching, which was distracting itself, was not psychological for once. So I can treat that. But there isn’t a shampoo for prioritizing.
I just can’t figure out how so much got away from me. I’ve been in treatment for 3.5 weeks, but even before the ECT, I wasn’t getting anything done because of the depression. Its much easier to say “Yes I should do laundry, but that bed looks comfy” etc., etc. So now I have so many decisions to make that at times I will skip an official meal because I would have to decide what I was going to eat. Overwhelmation is taking its toll.
June is a big month. My Things turned 13 and 17 – yes, you heard right. I can believe 13 for Thing Two – she’s been thirteen for the last three years at least. But 17 for Thing One? You realize how old that makes me, right? If you know me on Facebook, you already know – I turned 41 three days ago. I can’t figure out how so much has happened. Turns out that the world goes on even when you don’t.
In some ways, I needed this depression to understand how much things meant to me. Things like, well, my things – my children and the other people who care for me. I feel I’ve gotten much closer to several people through this, including my parents. They love me more than I realized, and have even told me so. I’ve seen how good so many people can be, and I’ve been inspired to be that way myself.
But where to begin? I don’t know. When you are driving to a big city 6 hours away on Sunday, then driving home Friday afternoon, only to repeat all of this again the following Sunday, your regular life takes a back seat. Normal everyday things like getting housework done or even remembering to fill my pills regularly, take a back seat. There just isn’t any time. And I cannot begin to describe the homesickness. A hotel away from it all sounds nice, but only for a certain amount of time. You start to miss your own town, your own house, your own bed, your children, on certain weeks your husband, and your old routine. And you want to smack the ceiling with a stick to shut up those people upstairs.
I haven’t been able to drive since beginning treatment. While I was in Dallas, driving was scary anyway, and on weeks with my father you could forget going anywhere. He’s 75 and much more nervous than he used to be on the road. I’ve always been nervous, so there’s not a lot of change there. Yet that meant more isolation on days I was with him. I could go out with my husband at least, but that traffic was still unreal. I don’t know how people live like that on a normal basis. No wonder so many in Dallas are getting ECT.
Driving represents a certain amount of freedom for me, and I never realized how I took it, like so many things, for granted. Or how much I used the word “thing” to describe everything. Sorry about that. I don’t have great memory loss, but I do get flustered easily. So here I am, discovering how much I’ve missed, and wanting for once to catch up, but getting confused easily and wanting to go hide under my covers at times. Getting a few zaps doesn’t fix things right away. Recovery takes more time, and as usual, I have no patience. Life doesn’t have much patience for you either. Get on the train or get off, it seems.
I don’t know if I’m ready for work, or even if this is the job I should stay with forever. I like my coworkers, especially my immediate boss. I get decent pay and really good insurance and retirement. It involves History and English, which are two subjects I’m good at. I’m proud of my job, and worked hard to get it. My daughter will be in college in a couple of years, and it would be nice to be around there. However, it doesn’t have an exact job description, which sometimes leaves you floundering around, wondering what you’re supposed to be doing exactly. I feel guilty when I’m not working hard enough, which seems to be most of the time. Not only that, I have a hard time concentrating on job tasks I often find boring when so many other tasks need doing elsewhere. That work / life balance idea is rather laughable. Yet I’m not sure what else to do. If I quit, then I need another job, but what? I’m not sure I could bring myself to decide. I can’t even figure out what clothes to keep.
So keep in mind how I really do want to get it in gear, which means catching up on both my own blog and the blogs of others. This used to be a big part of my life, and I think it would help me to make it so again. But I am struggling right now to get my life put back together, to figure out what is most important and what should be first. I’m not sure how to do that. Old Bob Frost said “Two roads diverged in a wood, and I, I took the one less traveled by. And that has made all the difference.”
I like that poem, but I have a question. Which road is less traveled by, and how do you figure that out?
ECT: Day One
I wrote down some notes in a notebook on my first morning of ECT, since I figured I would not remember it later. Though I just completed my 11th day of ECT today, I’ll go back to my notes on the very first day.
4:45 A.M. June 5th
Notes: Hey Alice, you remember these? You wrote them! No, really. Weirdly you have not had as many freakout meltdowns the last couple of days. I predict spaz out by 8 AM, but who knows? You probably don’t! My gosh, you are twisted, Alice.
Scared? Yeah but it’s been such a long journey. Like Han Solo said in reply to notice of his “Execution at dawn.” “Oh good – I hate long waits.” Been trying to remember the song “Memory”. From a show about cats. I have this. “Mem-ory! La la la la la la la laaaaaa!”
Great start, Alice.
In writing notes for another post I got nervous. Paying for a seizure? This sounds like a colossally bad idea. What if I get pudding brains later? I am vain about me brain.
Forgot to write down where the procedure will be done for sure. Good one!
5:65 er 5:16 now. O.K. I am scared. Also hungry. No food till after.
But – scared.
Road to Dallas:
You might be wondering what Dallas is like. The city is big, and full of traffic, and six hours from my home town. They made an entire prime time soap about it!
The real Dallas is exactly like the show. My shrink was J.R.
Just kidding. The shrink was actually nice. All of them were nice from the psychiatrists to the nurses to the guys that wheeled me out when the treatment was over. They don’t want you to fall on your face when you wake up, so you get taken out by chair. You will be fairly out of it, but you won’t forget your name or birthday or the awful stuff that happened to you in first grade, so nice try. They will ask you who you are before they even put you under. Heck they even ask each other what they’re doing first, just to make sure. “What procedure is this? Oh, yeah. Right lateral ECT.”
They do care if you keep your memory or not. I know because I got mine tested over and over, which was difficult since my memory kind of sucked to begin with and now I was purposely shooting up my brain. Each time I came for another treatment I got another test. Remember these three random words while I go on talking about other stuff. After a while you can try to guess them because it’s often something like a fruit or a piece of furniture or a kind of currency. It won’t hurt to try any of these things if you’re clueless like I usually am.
When you go into the procedure room, they give you oxygen and put sleep juice and whatever else you can convince them to add into your I.V. After you’re out, they put goopy gel (back to the 80s!) in your hair to attach the electrode thingys. The goop itches like Hades and will hang around until you bother to wash it out. But at least you aren’t biting on a chew toy. At least not that I remember anyway. Nor did I wet my pants. These were concerns of mine.
The first time I woke up I was confused and waiting for them to start the treatment before I realized they’d already done it. I didn’t feel a difference immediately. It took a few weeks before I could look back and realize that I was feeling better. Why was I feeling better? I have no idea. But I’m grateful both for the help and for the people who stood by me while I got it. I found new appreciation for these people in my life. I can’t promise ECT will help anyone else, but I would certainly encourage them to try it. Just watch for cars and rattlesnakes if you’re in Dallas.
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 