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Catch and Release

A Scarlet DLeave a comment

Yet another post about memory. Some redundant points, possibly. But they’re today’s points just as they were last week or month’s points. And you get movie reviews.

Big Fish

The movie Big Fish used to make me cry. It’s been a while since I’ve cried, though, even when watching that movie. To me the saddest part of the movie is that this person is known for such a great imagination and so many tales. In the end he was loved by all but some of those who loved him the most saw him as a teller of tall tales and nothing else. I can identify with that. Many times in my life I’ve gone on the road less travelled. Or I’ve experienced interesting things. Or even just daily routines that I can write into a grand adventure. I enjoy writing, I enjoy telling stories, and I enjoy having a remarkable spark or angle in those stories.

But I work very hard to be able to tell a great story without lying. My years as a college dropout, my years in the Marine Corps, even my career years working with technology have all contributed to the very large bucket of anecdotes from which I pull when I want to tell a story. Most of them are interesting enough to me that they don’t need embellishment. And when I tell a story that actually happened, I want it to be true so I work hard to make it true. But I often feel like I’m not always believed, that these yarns are my blowing a small situation into a large situation.

So at the end of Big Fish, we see who shows up for this man’s funeral, and without spoiling too much the people who come to the funeral from far and wide are many of the people in the stories. Some of them are exactly as we were shown. Some are normal people, some are a bit more unique. And even more aren’t exactly as they were in the stories, but lie just a few inches from reality. And finally his son and others see that he didn’t make up all the stories of his life. And that he will be remembered for those stories, not just by those he told them to, but also by the actual people in the narrative. This hits me very hard, wanting to be remembered for good things, and for a long time. I am not wont to invent something amazing or write the next Great American Novel. So I would like for the memories of me be for the stories I tell of my life, if my life isn’t memorable enough on it’s own.

So that’s the joy of memory and growing older and passing on memories to others. Not to mention living your life with the ability to use memories to look back and feel the good and bad that has happened in your life.

Little Fish

Not at all as famous or well known, is a movie called Little Fish. A few actors you’ve heard of, most you haven’t. It held a 100% on Rotten Tomatoes in the weeks after it came out, which is no small feat. The pre-COVID plot has to do with a virus hitting the world which makes the victim forget. At first little things, but as it progresses, even the memories of those you love, or are married to, or related to simply drift out of your memory. Many people are left caring for their partners just as a couple would support each other if one of them had Alzheimer’s. The protagonists are a young couple, not so young that they’re crazy 20somethings, but not so old that they have started slowing down. They both have a great, wicked sense of humor, and he is a photographer, constantly taking pictures.

It’s a great COVID-like parallel in that it affects the world but not like a nuclear bomb. A slow, strong, invasive impact. But I watched this couple do their best, use the tools they could to keep his memory intact. The patience she showed was spectacular, and like any human, there were times she was short on patience. But always calmed, connected with him, and did her best to help him be at peace, even while his memory falters.

It’s something I see in my wife. Many of the interactions between the main couple remind me of many of the experiences my wife and I have had recently with my memory. The movie focused on those little interactions, and that’s part of what makes it special. It’s extremely personal, without being too much of anything.

Dory, the Blue Tang

In the last few months, thanks to some moderately intensive physical therapies and a generous cocktail of prescriptions, I have been having memory issues. I’ve gone through something like this before a couple years ago, but it all seemed somehow elastic. I had things to forget, and things to remember. There wasn’t a system to it, it was fairly random.

My current memory issues have been a bit harder. A week or two ago we went to visit some relatives on my wife’s side of the family. I had never met them before, and it was in a suburb very close to my childhood home. We met them and had a nice meal, apparently their coffee was just amazing, and they told us so many family stories. The meeting was on a weekend after one of my physical therapies, so it should have been fine. But it was a week after that someone in my family mentioned the visit. I had no memory of it. Not the people, not the house, not the location, not even the amazing coffee. All gone, like it had never happened, not like I knew it and forgot it, it simply wasn’t there. Even with some memory exercises and discussions about the details, today it is still just a blurry, far away memory.

The assumption is that I’ll be fine, eventually. What strikes me about Little Fish is how well it showed people ignoring, covering up, or facing their missing memories. Some as simple as not remembering a small detail, others as large as a touring musician forgetting how to play an instrument. It’s the look in his wife’s eyes when she asks the typical questions as a test for him. “What is her name? How old is she? What is her favorite color?” She was clear enough, kind enough, but the look in her eyes betrayed the fact that she was worried about, counting on, and sad about the inevitable disconnect between two people. I have seen my wife look at me with eyes asking a normal question but pleading with her look, or even just how she sees me when I’m struggling.

The one that got away

Last night we went to our neighbor’s house and had a few drinks with them and another couple they know from college. We were interested in talking to them about some shared experiences we had with raising a unique child. And just laughing with everyone about the interesting ways being empty nesters has changed our lives. It was nice.

I was tired. It had been a long day, and this was actually a bit more social than I was used to. It was nice to be there, but I like talking, and had a few difficult moments. I would be telling a story, or talking about our experience and perspective with raising children, when out of nowhere it all just went away. That’s what it feels like. Almost as if you have a script or talking notes in front of you all the time, and at some point it disappears. You’re just sitting there and everyone is looking at you expectantly, waiting for the next funny quip or even just the end of an unfinished sentence. But you don’t even have an idea what you were talking about, much less where you were in the story. Sometimes you can fake it, other times you own up to it. But that’s exactly what happened, at least twice. And those are moments that make me feel like absolutely nothing. More.

My wife usually sees it as it’s happening so there’s no fooling her. She helps me as she can, reminding me when I ask. But every time she does, I am grateful and guilty. I can only think of everything she has been through, and how much could be coming down the road. Which sends me just a bit further down my road.

The Point?

That was a long winded way to recommend both Big Fish and Little Fish, and maybe hints that Finding Nemo might be worth a watch. Big Fish is a movie that may make you cry with it’s happy ending. Little Fish gives you a sense of the challenges of memory loss. And could give you a view into some of my own issues.

Who was I?

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  • I was middle aged, lightly active and physically average.
  • Which is to say, I could walk five miles around a local lake without any difficulty.
  • Quick to kid, always ready with a joke or a pun.
  • Mind like a steel trap – able to remember the smallest details, people, places and things.
  • Self taught, learning a new profession and trying to grow independent business.
  • Quick with technology, able to suss the functionality behind a new technology, often very quickly.

You know how your dad knows how to do all that? How he can walk you through that task or experience? I was able to do that. And I was quite proud to be able to help my family.

I’ve since had a full run of acute bilateral ECT, three times a week for four weeks. I’m also getting weekly ketamine experiences. I’ve done the ECT before, and in the past found it affected my memory, making it hard to remember things during the acute month. I had TMS with little to no memory impact. I’ve also had countless hours of talk therapy, group therapy at least weekly, and regular appointments with my psychiatrist to discuss physical options. These include a VNS device, MAOI patches, etc. This makes remembering anything tricky. I need to be on point with my note taking abilities, to avoid forgetting something straight away.

In the past, I was able to roll with the punches, just take memory issues in stride. For the most part, this experience has been much the same. Until one day a couple weeks ago in which something changed. Maybe not changed, but became estranged to me. There are times where I have to figure out if I know what’s going on, or am I learning something again? I was okay being in a situation in which I knew I either had to do some catching up, or maybe using memory aids to keep going with a task. I think what happened was that I started having more of these situations, and had to experience the re-discovery of what’s going on – and it was happening more often than not, or at least enough times that it became a normal part of my routine. So it wasn’t an odd happenstance, it was a regular situation to be in.

As a result, things are just generally a little fucked up. I no longer know everything. I am no longer able to just try something out and figure out how and where do it well. I can’t just drive somewhere. I need to drop the destination on my phone and be led that way. Even in a route where I know where I’m going and/or each part of the journey reveals the next leg of the trip – even those routes will provide me with times in which I don’t know where I am, or which direction to head. And actually, I need the track saved so I can look back and understand where and when I have gone before.

Today

I find myself beginning to tell a tale I know well. Or express an opinion. But mid statement, I hear the energy drop out of my voice, and the confidence disappear. I finish what I was saying sheepishly if I can remember what it was. I find myself in situations where I’m not sure why I came to be in that place, or don’t know who or what is going on. I don’t remember people, places, or things. I’m quite good at vague generalizations to cover for these situations, and I use those tools quite often. The simple locations of buttons or controllers for something in the car, or a technology item in the house. I can see it and understand the functionality, but have to rediscover the utility.

I’m still trying to figure out how to highlight these situations, or explain that I don’t remember how to do something I know was used to be able to do, or explain to someone that I know that I’ve forgotten their name or role in my life.

I have begun to employ different tactics and tools to compensate for my failings. If it’s anything I can get support on my phone, I’m all over it. Google maps, or Facebook information, or even my “sent” mail and saved items, and some bookmarks. I transitioned to a professional password/security system a couple years ago, so remembering passwords isn’t an issue. But many of the things I used to use to verify my information, or travel distances and times in order to estimate arrival times. Complementary tools.

What do I expect to have completely lost? Anything during the acute timeframe/month is fair game, I suppose. Or specific appointments – I can use MyChart online to plan for and reconcile my upcoming activities. If it’s important, I work hard to take notes so even forgetting can be worked with. I’d love for all memories to come back, but hope at least the more unique adventures can be retained – or even just have enough information on it that I can recreate the memory in my mind.

There’s really no upside. Or is there? I suppose I can chalk up anything forgotten, and attribute it to the ECT. It’s also making me approach some situations differently. I need to be more open minded, flexible in my tactics and ready to change plans on short notice. My wife is much more attuned to my flaws and foibles. That’s extremely helpful. But there’s no living my life as I used to, not for a while. I’m not sure this time I’ll be able to go back completely to the “old me.”

Finally, in trying to keep in mind simple wins and accomplishments.. In the past week or so I:

  • Drove to Iowa /w Wife to get child
  • Finished a 1000 piece puzzle
  • Continued work on a cross-stitch project

So I am still capable, just in a very different style and in more of a reactionary way. Though I am concerned about the issues, I can also see little things getting better or easier with time passing. And technically I can enjoy things more than once.

But every time I find something missing, that adds just a bit of fuel to the depression fire. I’m hoping it will happen less and less and eventually I’ll forget about the forgetting…

Driving to Distraction

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I haven’t been driving, because I’ve been in the acute portion of ECT. That is, until last week. This week I switch to maintenance ECT once a week. And we’re gently re-introducing driving for me.

Our eldest child is a senior in college in Iowa. And she does not drive, so in the past I’ve driven down there, picked her up and driven her back to Minnesota. At the end of the spring break or holiday or whatever it is at that time, we reverse the procedure. Point being I get a ton of driving time, which I love — and I tend to take wandering, meandering detours just for fun.

Since I’ve been finishing up the 3x weekly ECT sessions, I’ve not been driving. The sessions have left me exhausted, disoriented, and have been erasing certain memories. There have been many times where the wife is driving and I’ll have no idea where we are. I’ve just forgotten whole parts of the cities. So that’s why we’ve been cautious. On this trip, however, we eased into it. Wife drove out of the cities, and at the first gas stop we traded places and I took a shift driving.

Parts about driving that are actually hard:

First of all, understanding where I am. If I have the phone guiding me, that’s fine. But modifying the directions or destinations, etc. is well out of my control. This used to be something I managed to do quite well before. For now, though, making any changes require pulling over to do so. The phone is still confusing and takes some serious thinking to be able to figure it out. And I’m doubly no good with distractions. Generally if I have to take focus away from one task to look at another both tasks lost quality.

The physics of driving are fairly simple, but for the first hour or so I felt like I had to work really hard to keep in my lane, not cross over any of the lines. As the day went on I relaxed and could “feel” where I was more clearly. The physics of speed came into play, as well. The phone can clue me in to the actual speed limit and show me my own speed right next to it. So the trick was to get to the right speed, and then set cruise control during the long straight bits. Add in the extra detail of being over the speed limit by X mph, what’s appropriate, what’s too fast, where the speed traps are, etc.

Finally, working the “all around” mechanism of driving, all of the above combined into one ball of driving and being able to spend the right amount of attention on the specific skill that needs it. So it’s a bit more exhausting, always trying to figure out what happens next and how that happens. Even the buttons to open and close and lock doors, or the Bluetooth connection to be able to play something simple and calming in the background, they’re all memories I need to re-make.

Political Elements:

What went wrong that could prevent me from driving? Nothing, so far. The personally imposed driving restrictions are more closely tied to the ECT sessions. During the acute (3 sessions 3x weekly) sessions, it’s overtly stated that I should not drive. But now that we’re starting the “maintenance” ECT sessions, how does that impact my restrictions? What could go wrong? Well obviously if I’m under an influence (ECT, Ketamine, Anesthesia) I shouldn’t be driving. But those days between? This week we went to Iowa to get the oldest child. Normally I would do it, but this time Wife and I both went. I got behind the wheel after a petrol stop, so I could ease myself back into driving on the long and boring straight roads. That went fine. I will say, though, that the learning curve is pretty good, but it’s there.

Openness and honesty is important here. I’m trying to build up trust in my ability to drive. Just how much detail to I have to divulge to the wife? How much does she sense – in fact what does she sense or observe that I don’t even know? Do I need to exclaim at every headspin? Call out any missteps I take trying to put on proper shoes? Do I need to equate all of my emotional hardships? Or can we just suck it up and get back to driving? Somewhere in the middle, I guess, so I can keep Wife informed, but not be too noisy about every little ache and pain.

I enjoy driving alone, and that is sometimes very therapeutic for me. How much truth can I bend to make that happen? I don’t think I need to bend any facts or sugar coat anything. Everything thus far indicates that this slow re-introduction and my driving in the last few days have been useful for reorienting me, and hopefully opening me up to driving anyone.

The future of driving:

Where does this leave us? Unknown. There are a lot of moving objects. Getting the VNS installed, frequency and duration of both Ketamine and ECT, the maoi patches and whatever else I get into this summer. These things will have to keep us re-evaluating my driving abilities and permissions at least all spring.

In the back of my mind an occasional thought pops up before being promptly forgotten: How will this affect my summer scooter riding?

Into new territory

A Scarlet D1 Comment

Something has changed in the last few days. This no longer feels like “depression, that old friend” but something less under my control. Scarier, more lonely, no end in sight. I spend much of my time trying to figure out what’s happening or what’s real or not. During Ketamine, I no longer track what’s really happening to me, simply go from moment to moment trying to understand. Is this me? I can feel everything changing, but is it returning me to normal or taking me further from normal? Nothing feels real. I never feel that return to my natural state, everything is a different world.

I feel like I’m just repeating myself, complaining about my days rather than explaining them. So I will attempt to organize this post a bit better. Honestly this is all for my own recollection.

Sleep

Not sleeping well at night, always sleepy during the day. I lay awake with my restless legs at night. If it’s a day with an appointment, I wake up in time. If it’s a free day I hope to sleep late but rarely do. And I carry the exhaustion through my daylight hours, regardless of how busy I am. By the time I go to bed, it has converted itself into restlessness and we repeat the whole thing.

Eating

No appetite, although I could drink milk and hot cocoa til the cows come home. Next to me right now I have a fresh can of pop and a container of Pringles, my favorites. But I know they’re just going to sit there, unopened. I have the intention of eating but just can’t make it happen. I can’t say I mind the weight loss.

Drinking

I haven’t been drinking for many months now – I used to know how long. It no longer feels like a personal challenge to see how many months I can go without drinking. Now it feels like something I’ll never do again. But lately I’ve occasionally had the feeling that I really wanted to drink, and drink heavily. I think it’s just the desire to get out of my head, to escape for just a bit. But I’ve come this far, no sense breaking the streak now.

Control

I feel like I’m not in control of things anymore. Like I used to have coping mechanisms but I’ve forgotten them all, or they don’t work. I feel like it’s no longer something I am experiencing and capable of handling, but now it’s something happening to me. No expectations of what or when, or that I’ll remember any of this. The loss of control, as well as the inability to retain the experiences really shakes me. A large part of my identity is my ability to know what’s going on, have valuable insights, remember everything so well, and be able to navigate life in a reasonable manner. But that’s not as much so anymore.

Process

The ECT is as it always has been. Answer some routine questions, get to the procedure room. Have the daily small talk about which scooter t-shirt I’m wearing today. Tolerate a little sharp poke or two in my hand or arm, and then before you know it the smell of saline makes the room roll over my head. Next thing I know I’m getting my juice and…

Here is where I sit for a few minutes and try and remember the name of the treat they give us when we wake up. I can taste it, feel the texture of it in my mouth, but to know its name is apparently too much. Blueberry something.

Muffin, I guess.

Impact on others

Wife is having to do a lot more to support me, to shore me up and have my hugs. We have friends and neighbors giving me rides to the hospital, then Wife comes and picks me up when I’m done. I used to enjoy talking about myself, almost bragging about whatever is happening. Now I feel self conscious. I feel embarrassed that I am having to rely on these people who care about it, knowing I can’t do anything to repay them. I feel I have an inability to show appreciation for or repay their kindness.

Creativity

My men’s group commented on and complimented my ability to write. I don’t feel like I’m writing anymore, I feel like I’m just writing my complaints and posting them to the dark loneliness of the Internet. It may be useful to read some day and look back. I know there were other things I intended to write about – general stories of my life – but I can’t remember what or when. It’s possible I have an outline somewhere, and I may be able to get back to it again some day. But right now I feel like my creative source is all gone. But my original intent of writing to convey what it’s like to be in my head seems long gone. It feels less like art and more self indulgence. It feels less like sharing my experience for others to benefit from, and more just confused and muddled ramblings.

Safety

I still feel safe. I don’t have any intentions or plans to hurt myself. I do indeed feel lost, as if I don’t know who I am or where I am going anymore. If I were to be struck down by lightening, catch a horrible disease and die, or simply have a random heart attack and drop dead I would be surprised. But there would be a feeling of relief in there somewhere. I feel I would be more useful, less of a drain on family and friends, if I were to pass away naturally.

So when I read about potential side effects from a med, or medical concerns for someone my age, it’s often with hopefulness. But I don’t feel competent enough to harm myself. I don’t have confidence I could find a way that would be efficient, that wouldn’t cause more pain than I already have, and that wouldn’t damage my family. I feel when I’ve had major depressive episodes before, it’s wrapped up by now. That my confidence is not great that this is going to clear up some day soon and I’ll get on with what’s left of my life. It feels like uncharted territory, and it’s hard to imagine things clearing up and carrying on.

Confusion

I have trouble even writing these posts, because I can’t remember the point I wanted to make. Regardless of the specific memories, I carry the feelings. Feeling lost, confused, unsure, and mistaken. I can’t tell what I’m forgetting, and rarely recall something that’s nagging at me. Thank God my wife is by my side. She is my memory now, and reminds me of all of the things I’ve forgotten. My life is in her hands now. Nothing seems real.

I will try to read these posts before making new entries, hopefully to keep the repetition down. Until then, thank you for listening.

At Sea

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Everything I said last week, but double.

Between the ECT and the Ketamine I’m constantly bouncing between confusions. Today during Ketamine as soon as it started to hit I was completely lost. I had no idea what was real, what my purpose was, or when the ketamine ended and reality began again. It was not as much fun as it has been in the past.

In fact, this week I’ve been lost at sea every day all day long. I can’t remember many things, including important events — Wife and I went to the University to meet the neurosurgeon who will implant my VNS, and set the dates for the procedures. I don’t remember a bit of it though. According to the calendar, April 5th is the date on which I will get the VNS implanted. And a couple weeks later it’ll be activated. But it’s on the calendar!

No appetite, trouble sleeping, hard to get comfortable and always confused about what’s going on. That’s not very comfortable for me. But in theory I’ll forget all of this when the ECT ends, so I guess it’s just pain for me at the moment. Needless to say I’m not allowed to drive — can’t blame them!

Through all of these appointments and virtual meetings and such, I feel less and less like I am holding it together. I’m taking notes when I can, but really it’s as if I’m passing through a temporary moment constantly. And my score on the PHQ-9 was the highest I’ve ever had in my life – 26 – one point short of max’d out. I am still safe, yet. But still worried about how far I’ve come, or gone.

Lost

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That’s probably the best description of how I feel.

The ECT has me confused, hard to follow a train of thought, and scattered. Today I don’t feel like I can do anything. Anything electronic has me drifting off within minutes. My phone, which is normally like an extra limb, is confusing. I’m having trouble finding icons, remembering how to start applications, and forgetting why I was going to use it in the first place.

I have a credit card expiring this month so I have nearly a dozen accounts I need to update the new credit card info — I honestly don’t know how I am going to be able to do that.

No appetite, haven’t slept the past few nights, and I’m exhausted. Headache but can’t take any pain meds this close to the anesthesia.

So here I sit in the darkening afternoon light, waiting for something to happen. Dreading something to happen, given my low energy and motivation. Tomorrow I have an appointment with my psychiatrist, a ketamine injection, and an initial consult with a neurosurgeon about implanting the VNS device.

I’ve been in some difficult spots in the past, but this feels like something completely different. Everything seems foreign. Difficult. Someone else’s life. It really makes me wonder how I’m going to survive this.

Bottoming Out

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This week has been one of the toughest. Ever.

First, the MAOI – the patch isn’t really helping, so we’re likely going to go over to the oral form, which includes the dietary limitations. This includes items with high tyramine. No, I hadn’t heard of it before either. Things included on the no fly list:

  • Aged, cured, pickled, or smoked meats (such as chorizo, sausage, corned beef, salami, and pepperoni)
  • Pickled or smoked fish
  • Some aged and matured cheese (such as cheddar, gouda, and parmesan)
  • Fermented soybean products (such as miso, tofu, soybean curd, and tempeh)
  • Fermented or pickled foods (such as sauerkraut, kimchi, caviar, pickles, and kombucha)
  • Fermented bread, like sourdough
  • Breads with aged cheeses and processed meats
  • Tap beer
  • Any food that has gone bad, or is overripe

With the exception of the last item, this is a list of some of the foods I love the most. It reads a bit like a shopping list.

I have begun ECT (electroconvulsive therapy) again. Three days a week. Monday was only at 30% and it was hard to handle for the rest of the day. Tuesday was ketamine, so I was trashed after that afternoon visit. And Wednesday was at 60% (we’ll end up at 100% eventually) and I felt every bit of it afterward. My memory went from goldfish level to rock. Thoughts that used to come to me long enough to note them or take them on are now fleeting. Leaving me with a feeling of loss, confusion, concern that it was important, and sadness. I’m confused about things I thought were second nature. I can’t remember which pocket I usually use to keep my phone. My appetite has gone completely south, nothing sounds good and more often than not tasted like cardboard once I try it. And a deep sadness has settled in, knowing I’m not at full strength and I have weeks of this to go.

The ECT process is the same as before, with the exception of the waiting. Last time they had a tiny waiting room (10 chairs?) that had to fit the patients in line, plus their family or friend helper. It was fairly loud, though part of that was the 24×7 home improvement shows. Wife hated Mondays because that’s when the new batch came in, and you could feel the anxiety rolling off of them in waves. I just remember feeling like I was with my people. Now the waiting area is down by the TMS area, and there is a nice huge waiting area with comfy couches. The old waiting room as turned into the “wake up” room where they wheel you after you’re awake but before you have any idea who, where, or what you are. And we still get mini blueberry muffins and juice. Which is nice. So the whole process is easier, more comfortable, and well done. Also, there is still the pre-procedure interview to check that you haven’t taken certain meds, take your vitals, and do a quick check in on your mental state. In the old waiting room you would do this in front of the whole crowd, including the “are you safe” questions. Now they have a proper exam room and it feels more professional.

On the mixed bag side: The external review for my VNS (vagus nerve stimulator) has finally approved it, and things are now moving. Have an appointment next week for the surgical consultation with a neurosurgeon, and it sounds like COVID hasn’t gotten in the way of operations at the University, where this will be done.

Again, the VNS has a surgery to implant a little box the size of a matchbox just below my clavicle. They’ll also attach a wire to my Vagus Nerve. After two or a few weeks of healing, I’ll go back to my doc at the treatment resistant depression clinic. He will activate the device and program it for my introduction. An example would be every five minutes the box sends a 30 second impulse to the Vagus Nerve. Forever. No immediate results, it could take weeks if I’m lucky, but more likely months or a year to see benefit. So the VNS update is good news but intimidating and scary.

After much discussion, we have moved the consultation with the Mayo clinic out a month. Not sure if I mentioned it before, but I wanted a different perspective, with their unique patient engagement. Also, my grandfather was a (chief) neurosurgeon there, and my mother was Nurse Ratched the head nurse of the locked psych ware there in the 50’s. (I’m sure she was very nice and not sadistic.) But given the way ECT has done a number on me this week we’re going to wait until I’m a bit more lucid.

It’s a turmoil of therapies and appointments right now. If we keep it up, it’s going to suck. If we stop it’ll suck and I won’t have a method for improvement. But it’s hard nonetheless, and Wife and I are both feeling the strain.

I know the ECT will stabilize, and everything is going as planned. But yesterday I began questioning whether I was actually going to survive this major depressive episode. And that I’m not in control at all. Those are unsettling thoughts. (Yes, I’m safe, and I’m well supported)

Back to ECT

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A week from Monday I will be restarting electroconvulsive therapy, or ECT.

It’ll be unilateral this time, which is supposed to keep memory loss lower. That’s how we started last time but went to bilateral because it just wasn’t working. Unilateral means just on one side of the head, bilateral is both sides, which is more effective. I’m not ruling out the possibility that we’ll go to bilateral again.

I’m still processing the reality of it, but this time around it’s got me thinking about what I’m going into. I’m wondering if these moments or days will be erased. Will I lose this month of my daughter being home from college? How will this affect my existing memory issues? How will COVID affect there whole process?

We’re running out of things to try, and this seemed to work a bit last time, so here we are. I’ve recently stopped caring, so I’m just going along with my care team’s recommendations. Not caring actually makes everything a little easier, but certainly not better. I think I swore I wouldn’t go back to ECT, but those were different days.

I will be making an effort to blog more during this series.

Lost in my happy place, but not in a good way

A Scarlet D1 Comment

COVID. Yay. Always something new and horrible happening with the pandemic. This is a short (I think I’m lying about “short”) piece about my experience getting a booster, and how my cognitive, memory, and physical stuff got in the way.

I needed the booster shot, and spent a bit of time looking for a location that could do it soon, not in a month. I found that the state (I think?) had a vaccine and testing site set up at a really big mall near us. Got a same day appointment and headed out.

Now, this is a mall I have spent many years shopping, or rather wandering, and it’s a guilty pleasure to just wanted in the plastic and stone environment. I like to people watch, see what stores are new, see how the mall evolves over time. It’s been around for many decades, and like any other mall it goes through different renovations that change it in interesting ways, but always remains the same underneath.

Because of my experience there I know it like the back of my hand. Where certain shops are, which “moods” the different parts of the mall exhibit, and what’s the best way to get from point A to point B, even during black Friday level crowds. I even know the secret Easter eggs hidden here and there, and how much of the behind the scenes logistics work. I always know how I’m oriented in the mall, and which way it north, etc.

But on that day, it all went a bit sideways. I waited the requisite 15 or 30 minutes after the shot, can’t remember how long it was. Didn’t feel off in any way and thought I’d get a coffee and go through the mall for some winter exercise and maybe even holiday shopping.

Right away the sheer volume of stimulation got to me. My vertigo kicked in as expected, and I felt light headed, dizzy, panicky, etc. Just your standard anxiety attack. Not a panic attack, but a good dose of anxiety and fight or flight. It was bad enough that I was going over scenarios in my head if I fell or passed out. Could I sneak out without drawing attention, or would someone call 911 and complicate things? I get tired quickly, and that wasn’t helping. But the thing that kicked me hard in the stomach was that I was getting lost. I would occasionally have the “wait, where am I and how did I get here?” or the “Ok, I don’t think I’ve ever been here before” feelings, knowing full well that before the latest episode(s) I could have navigated in my sleep. I got “actual lost” and had to use a directory, but even after looking things up I was frustrated by not remembering the things along the journey. This used to be my happy place, somewhere to walk and clear my mind while getting my commercial marketing fix. But all I wanted to do was get my coffee and get out of there.

Less upsetting: One of my secret tricks is that the Big & Nicely furnished corporate bookstore has a Starbucks branded coffee shop. But you can pay for your books there, and it often has a much shorter line than the serpentine lines at the main store cashiers. While waiting for my coffee I saw two seemingly normal ladies chatting, not quietly. But they weren’t talking about boring suburban things, they were going on and on about the illuminati, and some other pretty deep conspiracy theories. I guess you never know by looking.

By the time I got to the car I was pretty shaken up. I didn’t cry, because I apparently can’t, but felt on the verge of a bit of a breakdown. I texted my sister something innocuous but maybe indicating I could use a pep talk. I can’t remember what it was, but she called me right away as I sat in my car in the parking ramp. I talked about the experience and how it bothered me, but mostly we just chatted. That always helps.

And I did have a “booster hangover” but it mixed in with all of the other crap I have going on, so it wasn’t too terrible the next day.

More Ketamine Experiences

A Scarlet DLeave a comment

I struggle with knowing how much to share and how much to keep to myself when it comes to the ketamine “trips.” I don’t want to sound like someone babbling about their acid trips or some burned out drug fiend. I understand that it’s very difficult to describe these things, and to the reader it sounds like disjointed, confusing, odd stuff. But I do want to share some of those things, regardless.

I am continuing a weekly ketamine session, and they go pretty much as expected. Blood Pressure, then an injection. Within a very few minutes I am feeling it and disassociate sometimes as expected and sometimes more intensely.

I wrote previously about the first really, *really*, intense session, in which I felt as though I was in an infinite loop. Nothing else, no universe, no me, no space, just that loop. When I am there I am overwhelmed but the simplicity of it brings me comfort, and any anxiety I get is from knowing I’ll come out of it, that it won’t last forever.

In the chair, in reality, apparently I am experiencing different emotions. I have had sessions where I have sworn, sometimes loudly, often with an air of being upset about what is happening “in there.” The other week I manifested a bit more physically, twisting around in the chair and looking extremely uncomfortable. I was given an ice pack to ground myself, and I threw it against the window. They put a weighted blanket on me to ground me, and it just ended up pissing me off. What I remember is that it was complicating things, pulling me out of the simplicity, and that was upsetting me.

From the look of concern on Wife’s face when I came back out of it, I’m guessing it was pretty scary. I trust her completely, but felt like they weren’t totally telling me how bad it was. When talking later with her, she was relieved to hear that the experience I had inside did not match what they were seeing. Next time I want video. 🙂

My therapist had a bit more concerning thought – and that was if I acted up too much, it’s possible I would need to be restrained, and that would be pretty traumatizing. This has been a bit of fun and amusing to hear about my acting up, but realizing it could get me strapped down or worse – checked into inpatient – bothers me a bit.

The intensity could be a from a variety of things. First, I have been fasting before appointments, as that is the recommendation typically for Ketamine therapies. Much like some rTMS providers put you in a soft helmet for rTMS, others simply have a unit placed on the forehead. Yes, the fasting is taking advice from the Internet. I know how wise that is or isn’t.

I am also recently on a higher dose by 30 or 50 percent, can’t remember – but it’s a bit of a jump. So that could have something to do with it. But oddly enough it started ramping up when I *stopped* listening to music. I’ve been doing Gorecki’s 3rd for so long that I knew where I was in the hour based on the musical movement. It also felt like it guided me in the same path every time. One week I forgot my earbuds and went without music at all. The difference was quick and strong. I remember the texture of my jeans standing out and beginning a beautiful journey through tans and yellows before dropping me deep in the disassociation. So I think I prefer without music at this point.

The other interesting thing that’s happened a couple times now are the ketamine tears. Sometimes I know when it’s happening, sometimes I know it happened when I “come back” because I can feel it in my eyes. It’s not crying, it’s just as if my eyes fill with tears. When I’ve known it was happening it didn’t seem like weeping, but more of an intense sadness that almost breaks the surface tension of tears but never quite gets there. And as usual it makes me wonder what’s really happening during my sessions. Interesting more than upsetting.