Category: Electroconvulsive therapy

Bipolar Recovery at a Conference

I am at the Congress of the Social Sciences and Humanities this week in Toronto. It’s a massive conference, often 10,000 people. And it’s the first big such event I’ve attended since COVID… and since my electroconvulsive therapy.

Yesterday was the first day, and it was fun – I met up with dozens of old friends and met some new folks – but it was challenging. I found it hard to follow the philosophy talks because of a lack of focus/concentration, and hard to motivate excitement in the topics because of a lack of energy. I found myself not remembering people, which is new for me post-ETC. (A young woman, who had just done an excellent presentation, came up to say hello, telling me that I had taught her in a graduate seminar. It’s not just that I didn’t know her name; it’s that she might as well have been a stranger.)

Talk of post-ECT troubles brings me to a vicious cycle that I’ve been experiencing lately. It is showing up in my teaching too. I have difficulty with focus/concentration, energy and memory and these make me feel fear, and shame, that I can no longer do the job of a Distinguished Professor of Philosophy. The fear/shame worsens my concentration and memory, and further saps my energy. And the cycle continues.

Here is what I have been telling myself in response, and what I kept saying to myself yesterday during the conference. There is hope that the troubles continue to improve over the years as I put the shock therapy further in the rear view mirror. This would reduce the performance anxiety by objectively doing better as time passes, by continuing to force myself to practice. (E.g., forcing myself to attend additional conferences.) That’s the one hand. The other hand is that I can simply demand less from myself, or different. Being a good professor is good enough while, meanwhile, I excel at other things. Even more drastically, maybe I can accept that I’ll hereafter perform badly by prior standards but that no one will die as a result. I would still be a good person.

Anyway, the conference continues until Thursday night. Today there is a panel that I helped to organize that is squarely in my research area. We’ll see how things shape up.

Why Resist Fear-Like Symptoms?

An update on my symptoms.

Post-ECT, my sadness and grief symptoms are much better. Along with the experiment of doing work in warm, sunny places over the winter months, my depression is pretty much in remission. Yes, it’s left me memory issues, but overall the electroshock therapy was a success. What hasn’t gone away are my fear-like symptoms: tightness in my chest and face; clenching my fists and toes; increased heartrate; and most of all, an emotional sensation-as-of-fear. The free floating anxiety aspect of my Bipolar remains in place, in spades.

As an exercise, to help me recover from it, Dr. D asked me to think about why I resist these anxiety symptoms. Why do I let them bother me? Why can’t I just let them be there? I thought I’d share my answer here.

First, a comment on what exactly the symptoms are. One of the clinicians from the Depression Centre at Toronto Western Hospital, during my DBT group therapy, encouraged me to not think of the symptom as literally being afraid. For, if you ask me what I’m afraid of, mostly I’ll find that there isn’t anything; or I’ll have to search around and, because I do have the sensation that goes along with being frightened, I’ll find some candidate. But really, that’s not the object of my fear – indeed, my fear-like state has no object. Instead, it feels more like there just happens to be too much cortisol flowing through my bloodstream. Better, then, to say, as I did above, that what I get are fear-like symptoms.

Having clarified what I’m resisting, why resist that? I came up with several explanations

First and most obviously, the sensation of fear is per se unpleasant. Of course it is: the evolutionary point of fear is to motivate action, and it’s the unpleasantness which does the motivating. The cat encounters the dog. It feels fear. It shouldn’t just relax and sit there — that wouldn’t be to its evolutionary advantage. At a minimum, it should assess whether the danger is real. More probably, if it’s to reproduce successfully, it should skedaddle the heck out of there! In this respect, fear is like pain: to ask why one doesn’t want to feel fear is like asking why one doesn’t want to feel pain. (And chronic anxiety is like chronic pain, in my view.)

Beyond that, my recurring sensation-as-of-fear gets in the way of enjoying other things. An example. Several times in the last weeks I have been at a gathering with people whose company I really, really enjoy. Lovely people have visited from out of town. Neighbours, friends and work colleagues have come over for parties. But I had to retreat to my room to do meditations, I had to withdraw from them, because I was so anxious. Even when we were together, when I was at least physically present, I couldn’t really experience the joy that I used to get from being with them.

I also have a hard time doing certain pleasant activities on my own, activities that used to be straightforward: going for a run, going out fishing or birding. Absent someone to accompany me, I just feel afraid and want to stay home in bed instead. For this reason, i.e., that it’s an obstacle to joy, I get angry at my anxiety

What’s more, I have a hard time concentrating because of the anxiety. And I lack the confidence to take on new tasks, such as new research paths at work.

Finally, though my depression is mostly in remission, I do still get passive suicidal ideations because of the fright. I think, “I wish I would just I die, because I’m afraid all the time anyway”. And I don’t like that line of thought.

So, both because it’s per se to-be-resisted, and for other reasons, I push against the fear-sensation, I reject it.

Despite these pretty reasonable explanations, I know that it would be better if I could just accept the fear-like sensation; better if I could really and deeply say, “It’s just an unpleasant feeling. It isn’t really fear because there’s nothing to be afraid of. Just let it be there”. So, Dr. D., I’ll keep trying!

A Memory Workaround

I have noticed that I am forgetting my students, even relatively recent ones. It’s terribly embarrassing. It’s also professionally problematic because students need letters of reference, and when they approach me I all too often don’t recognize their names even one year later.

My dear friend Lindhi suggested a workaround. I need to let the students know that I’ve been through ECT, explain its upshot in terms of memory symptoms, and ask for both their understanding and their help.

In light of her suggestion, I have composed a letter which I’ll now share with every student, whether I remember them perfectly clearly or not.

Dear Student:

As I may have told you, I have recently undergone electroconvulsive therapy for my Bipolar Disorder.

One serious side effect of this treatment is that it seriously affects memory. In particular, I find it harder to recall personal interactions from the past. Happily, when I’m given reminders, the events come flooding back.

As a result, I am now asking everyone for whom I am writing a reference letter to provide me with:

  • A list of the criteria for the award, program, or position in question
  • A corresponding list of interactions we’ve had, or of things the student has done, which speak to those criteria.

It will also be helpful to have an in person or Zoom meeting to flesh out those reminders.

In addition, I would request the more usual things:

  • A statement of purpose
  • An informal transcript
  • A sample of writing that the student did for me
  • Any other documents which address the criteria noted above.

Let me thank you in advance for your understanding of my condition and the unusual request that it necessitates.

Yours truly, etc.

ECT Update at the Half-way Point

Being about halfway through the treatment protocol – I just had the 12th “zap” today – I thought I’d provide an update on how the electroconvulsive therapy was going.

The outlook is mostly positive. I think the treatments are really helping.

Some progress I’d highlight. 1) I still get passive suicidal ideations, thoughts of the form “I can’t manage this, I’d be better off dead, I wish I just wouldn’t wake up”. But I’m getting fewer suicidal ideations, and I never have concrete plans for self-harm these days. 2) There’s some improvement with respect to anhedonia. My appetite has improved and I have some limited interest in TV shows and novels. (I read a few chapters last week.) I’m doing lots of physical exercise, including getting out on my bike on my own and with friends. I’m getting to be social again, making chit chat with strangers. There has even been an occasional quirky joke. Also on the “F-you anhedonia”-front, I am making travel plans for the Summer and feeling excited about them. (I am going on two fishing trips: to northern Ontario with my dear “hermano” Gustavo on June 7th for 10 days, and then to the Yukon with my dear “jefe” Jay on June 25th.) 3) My sleep, buttressed by Trazadone, has been much, much better. And most markedly, 4) my episodes of grief and sadness are mostly neurotypical now: i.e., appropriate to the situation and even largely in an appropriate degree. Yesterday, for example, I was able to recount the story of my first wife’s cancer in a matter-of-fact way without breaking down. I did get very sad describing how little I am supporting Anita these days, but that’s a sad situation (and one I hope will be remedied soon).

On the other hand, I’d flag three remaining and interrelated obstacles:
1) I need to continue working on anhedonia. I’m very far from back to normal. 2) I need to overcome the fear, fear, fear! That’s the most important thing. People always ask what I’m afraid of. Fair question. Well, I’m afraid of the unknown, especially related to what life will be like as I and others age physically and mentally. But truly and mostly, I’m not afraid of anything — I’m just fearful. What I feel is hypervigilance for something unknown that is going to go badly wrong. I liken it to walking down a dark, silent, abandoned alley, expecting someone or something to jump out at you. I try not to give in. In particular, I force myself to get out of bed and to do what have somehow become unfamiliar and daunting activities (ride my bike, BBQ). My fierce determination notwithstanding, the terror is keeping me from many previously normal activities. I suffered a panic attack during a play at our local theatre and had to go home after half an hour. I suffered another during a guided bird walk – despite birdwatching not being an obviously fearful activity (!), there were “unknowns” that popped into my head half-way through, and I never recovered my calm, despite using all my DBT techniques. Sometimes (yesterday, for instance) an entire day is spent frightened. 3) As a result, I can’t concentrate, don’t have enough motivation/energy, and lack all confidence in my abilities. I thus can’t engage with academic texts and projects and wouldn’t be able to teach yet either. (My July-August class has been cancelled because I may not improve enough on these fronts by then.)

It’s worth noting too that the progress is visible on treatment days and then levels off as the weekend progresses. So, as I say, yesterday was a very fearful day; this morning and afternoon, following my treatment, I am feeling quite positive. The outlook is positive there too, however, in that the “positive” period between treatments is lasting longer.

Good News, Bad News in ECT

Yesterday was a good news, bad news day. Today, Tuesday, is mostly a good news day

Yesterday’s good news: I didn’t faint on the way to the hospital. Unlike Friday. And they went ahead with the procedure. Unlike Friday. Good news too is how mild the side effects were yesterday. A weird headache. And cognitive exhaustion, especially when it came to screens. (I was better talking on the phone with the light dimmed than Zooming. The latter was very demanding.) The sore muscles were there again but much less pronounced, maybe because they only “jolted” me once yesterday. Continuing with the more “physical” side-effects, and how bearable they are, I was even able to do a 4 km run early this afternoon, only about 24 hours after the treatment.

Yesterday’s bad news: once in the treatment room, and under anesthetic, my pulse again dropped to around 30 beats per minute. They had to give me a drug to speed up my heart. Because this is a mite worrisome, they plan to move my treatments temporarily to the full-service hospital down the road from the Psychiatric one, in case anything goes wrong. There will be “crash carts” there and all the rest. More cautious, but already an unwelcome disruption. Worse, they need to get me scheduled in there, and I don’t know how long that will take: Victoria, the new venue, only takes four patients at a time, and it might be full. In addition, each patient at the main hospital does only two treatments per week as opposed to three where I am now, at Parkwood. That converts 6.5 weeks to 10 weeks.

All of this threatens to extend my treatment regime in terms of when I’ll finish, such that it may bump up against my Summer fishing trips. And looking ahead to those was all that kept me going for a while there in the Winter.

Today’s good news. Yesterday I was very anxious because of the changes to the schedule and the uncertainty. These treatments are the most frightening thing I’ve ever faced in many years, and I just want to get on with it. It’s frustrating to get stuck part way. However, yesterday was anomalous emotionally. In general, I am much less frightened of the procedure, having experienced it on two occasions now. More importantly, as my daughter Saima observed already last week, I am less frightened in general. Everyone is commenting on both my improved countenance and the tenor of my voice; my own first-person impression too is that the ECT is helping with the anxiety and depression symptoms after only three of my scheduled 20 “jolts”. My psychiatrist thinks that could very well be – the technique is that powerful, when it works – and if the treatment is helping already, that bodes really well for the effectiveness of the whole course.

My First ECT Treatment

We left the house at 9:20 a.m. this morning. By 9:45 Anita and I had arrived at the ECT waiting room at Parkwood Institute, me bundled up in winter coat, warranted by the freezing rain warning.

Shortly thereafter, a gentle, kind nurse with an infinity tattoo on the back of her neck called out ‘Robert?’ She took me into the Electroconvulsive Therapy clinic proper. Unfortunately, Anita couldn’t join me there.

I changed into a hospital gown, got onto a gurney, and was covered in a warmed blanket. That first nurse explained the whole procedure. I was so frightened that I didn’t really follow and asked another nurse trainee to explain again. She did so – equally gently and kindly.

I then took out my cell phone, put on my headphones, and began a guided meditation, while waiting for the treatment regime to start.

An IV was inserted in my right hand while still in the recovery room. Those who don’t have phobias may find it strange that this was the specific event I have dreaded most over these weeks of waiting. Those who have phobias will understand right away. Anyway, the meditation and thoughts of why I was doing this — to get my life back — got me through it.

The gurney, with me ensconced, was then wheeled to the actual treatment room. As I had been warned by the second nurse, a whole team then attached things to me: pads on my chest for an ECG to monitor my heart; a blood pressure cuff on my left arm; an oxygen mask; electrical contacts on my temples (the tape from which remained on all day, until I looked in the mirror at 5 p.m.); and more besides. Once I was fully hooked up, the team did a “treatment pause” to make sure everyone agreed on who was being treated and how. (This is clearly a good precaution with so many patients coming through and so many medical professionals involved.) As both nurses had warned me, all of this collective activity was normal and didn’t indicate any kind of emergency.

The anesthesiologist told me that I’d soon be feeling sleepy. The next instant, or so it seemed from my point of view, I was back in the recovery room. In fact, I’d been out for about fifteen minutes. The team had actually done two rounds of treatment. All had gone well.

In the recovery room, I felt dopey and a mite nauseous. As soon as I alerted them, they gave me something intravenously for the nausea and it worked very well. I wanted to sleep, but was unable to doze off, so I simply lay still and meditated. My head cleared over the next half hour or so. I was checked on regularly and given water to perk me up. I then dressed myself and the “infinity-tattoo nurse” took me out to Anita’s massive hug. It was just shy of noon and time to head home.

I wouldn’t say that I was especially confused when I awoke, and I don’t think I forgot anything. However, I did notice a few physical side-effects. As I got up from the gurney, I discovered sore muscles in my lower back and left calf . These were presumably from the seizures. Nothing too bad – it was as if I’d done a strenuous workout and needed to stretch. I had a mild headache around my right temple. When I eventually ate something, after a nap at home, I realized that my right upper jaw was sore and that the “headache” was more about that than anything else. Tylenol helped with all of the above.

More than anything, I was simply very, very tired when I got home. I mentioned a first nap. I needed a second one around 2:30, after a brief Zoom call. I certainly wasn’t up for a run this afternoon, though I went out for two brief walks. Still, I don’t know how much the tiredness was from my sleepless night versus the electric shock and the anesthetic.

My next session will be Friday morning. I don’t feel nearly as frightened about the second treatment, though I still fear the needle and there are sure to be other side-effects. All told, I’m worn out but hopeful.

I am getting Electroconvulsive Therapy (ECT)

I am being scheduled for ECT at the end of March or thereabouts. I am terrified but a little hopeful.

It might help friends, family and other readers to understand my choice to undertake ECT if I share my PROs and CONs list.

The CONs are very serious.

I’ll need to take six or seven weeks of sick leave from work. That’s because there will be about 20 treatments in total, three times a week; and then I’ll need about two weeks to recover from the whole series. There will also be a major disruption to our family life and to Anita’s work. The procedure has minor side effects like nausea and headaches. It has the major side effect of short-term memory loss during the entire length of the treatment regime. I likely won’t remember in the afternoon conversations that I had in the morning, that kind of thing. I might forget whole days. And ECT carries more serious risks such heart attack from the electric shock, broken bones or teeth if the anti-seizure drugs don’t entirely work and I go into major convulsions, and possibly death from the anesthetic. Also, occasionally patients have long term memory loss – if that happened, it would end my career. Speaking of anesthetic, I will be given an intravenous general every time. This for a person who has a phobia about needles: I’m genuinely as afraid of that as I am of the electric shocks.

Adding to the CONs, the specialist estimated only a 40-50% chance of a “clinically significant reduction in my symptoms”. This is a far cry from the 80% probability of remission that I had been led to expect from informal research. And the improvement, if it occurs, may be temporary.

The PROs are almost all “mights”. A significant improvement in my symptoms might get me back to working fully; able to travel; and interested again in things like food, novels, movies, etc. It might allow me to get off some of my medications, which in turn might take away various nasty side effects. As an example, my left hand sometimes shakes badly, to the point that I can only type with my right hand. I think the tremors are due to one of my meds. It might at the very least halt the continuing decline in my mental health. (Many times I’ve thought: “This can’t possibly get worse. What would worse be like?” Then it got worse, e.g., when agoraphobia struck.)

Maybe the most daunting CON of all is the potential for a total loss of hope going forward: ECT is basically my last resort, so that if it fails, I’m out of options. I have pretty much exhausted the possibilities for medications. I’ve been on 20 or so over the years. I’ve done lots of therapy, including Dialectical Behavioral Therapy, which has been the main topic of this blog. Yet my Bipolar continues to worsen. Being out of additional treatment options would be horrendous. I don’t see how I can continue in my career if I don’t improve. Nor go on fishing trips, nor function as a husband and father, nor…

Maybe the biggest PRO is that, if I do the procedure, I won’t wonder “What if?”

In short, the choice is between uncertainty and fear on the one hand and hope for the return of my most valued activities on the other. Scared as I am – and I have been literally shaking with fright today – I am choosing hope.