The Lost Poem

They say journaling is therapeutic, so what the heck. And I haven’t managed to offend anyone yet.

I love driving. Especially new and unknown roads. Ever since I got my license I’ve been drawn to the road, and there’s nothing like a good road trip. In high school we found a book from a local author – actually an alum of our high school – about a road trip to the badlands. To a bunch of high schoolers, their simple trip seemed like the most exotic adventure one could go on. And we went on a few of our own trips, just not as far as the badlands. Three friends and I would go out on Saturday night just driving around, letting our parents know we were just going to a fast food joint. We neglected to tell them our favorite was in Red Wing, fifty miles from home.

My daughter got the bug from me, and loves driving. She has her podcasts and caffeine to keep her going. My wife isn’t as much of a driver, but she has her own toolkit, including music and conversation. Most people like to have music or something on the radio, but I actually like the silence. When we drive to our cabin “up north” I usually do the driving while the wife naps. I can’t hear podcasts well and don’t like wearing earbuds in the car. Music is okay, but choosing the right vibe for the moment can be a hassle. So often I’ll just drive to the hum of the road. There’s a lot going on in my brain, so that’s the conversation that I listen to as I look for obscure routes and alternate roads to keep things interesting.

I have driven to the cabin probably hundreds of times now. There are three primary routes you can take, and they’re all within about 15 minutes of each other. I’ve done them all and found a few in between. My parents had driven to the cabin so often that they not only knew which roads were the most efficient down to the minute, but they could also offer a review of pretty much every Dairy Queen between home and the cabin.

They’ve built a new fast highway that cuts right through everything and knocks most of the alternate routes on their butt. Which is a bummer, because I like the lettered country roads. Fast highways mean passing and watching your speed vs watching for speed traps. It means trucks and vacationers and seeing the same vehicles for hours at a time. A good county road means decent pavement, most slow drivers will turn off sooner than later, and best of all they provide a plethora of things to see and wonder about along the way.

But it doesn’t matter if it’s a new road or an old one, I always find interesting things to see, almost constantly.

One time on the way to the cabin as the kids claimed they were bored, I rattled off the last five interesting things I had seen. A spiral staircase to nowhere, the tin man from Wizard of Oz riding a tractor, a BMX motorcycle practicing jumps, and more that I can’t remember. So even though I’ve done the route a million times, it seems like there is always something interesting and/or new to experience along the way.

I’m also an active driver, meaning when I drive that’s all I’m doing. I’m hyper alert to other cars in my blind spots, seeing what cars far away are doing and how that might impact me, my speed, etc. I’m watching for speed traps, though I don’t see that many any more, which takes much of the fun out of speeding. I don’t speed much, but mostly go with the flow of traffic 5 over the limit. I’m also watching for animals. There are deer between here and there. They’re usually grazing at the side of the road, or just crossing. Generally they dart back into the trees when they see you, but more often than you would think they dart in front of you. I haven’t hit a deer yet, and don’t want to. So I have great “deer eyes” and it not only helps stay safe, but I’ve caught a number of interesting creatures as they disappear in the woods. Deer, of course, black bears, foxes, even a cougar with babies! So many birds – Bald Eagles, hawks, sandhill cranes, blue heron, and my favorite – red winged blackbirds.

So it all adds up to the fact that driving makes me happy, calms me, and it’s a bit of a therapy all on its own.

My mental state has been able to allow me to keep driving, but there have been times (especially during ECT) where I wasn’t allowed to drive. The kids were right, the back seat is so boring! For the most part though I still get to have my mindfulness time driving down the road seeing what there is to see.

And that’s the sad part. I see so many little moments of beauty or oddity on my drives. Maybe a fox peeking over the road looking like he wanted to cross but knew it just wasn’t a good idea. Or the bear cub that sprinted for the trees and climbed five feet up the closest tree to the road – not a good hiding spot, and I was waiting for an angry Momma bear to pop out at any moment. I’ve seen crazy vehicles of all kinds, people doing all manner of activities while they drive, and roadside attractions both new and old. We don’t stop, but I notice every historical marker and think to myself that next time we should take the time to stop and learn. Or it could just be a beautiful landscape lit by the golden sun at dusk. I really love these little moments of beauty.

But with my memory issues, now I see these things, appreciate them, and try hard to remember them. But most of them these days are gone by the time I hit the next town, lost to the static in my head. It took me a while to realize it was happening, and now when I’m driving along and I see something like bison in great herds, I love the moment, but also realize right then and there that it’s fleeting. I don’t get to keep it to remember, or share with someone later down the road. And it’ll be gone before I know it. And that makes me sad.

So now when I see something fun, interesting, sad, or curious as I’m driving, I have the same sense of pleasure for having the experience, but I also grieve that moment because I know it only exists in that moment. And after it’s passed, it’s truly gone. And I hate that I now have sadness in my journeys.

It was bad enough on one of my recent trips that I started writing a poem in my head about the experience of fleeting beauty and the loss as it fades from memory. It was a great poem. I don’t write poetry, really, but I felt this captured the concept so well. Over the course of that weekend I also came up with the perfect title for the poem. I can remember exactly where I was when I lost it, too. It was as if it was dust and the rain washed it away in front of my eyes. And I’ll grieve that, too.

Forgetting a poem about forgetting.

A simple plan, foiled.

Without reason or cause, this has been one of the worst weeks of my life. Just because things have been building for a while. You want to know what depression is like? Here’s a quick (not really) sample.

We’re not a Barcalounger family. We have a beautiful old craftsman house built in 1908, so we try and keep the mood of the place by staying away from the typical. When my wife was pregnant with our first, we bought a gliding rocking chair. It’s really quite nice. It’s stained wood and beautiful textiles, and really fits in with the hardwood floors quite nicely. Honestly, that’s where the snobbery ends with us – the house is dusty and lived in, not beautiful and clean. But we’re ok with that.

Somehow I ended up in the glider. After the babies were long grown and we settled into watching TV in the living room, it was just where I sat. I never intended for it to be “my chair” but it did. There’s a little table next to it, with my essentials. A phone charging stand, a coaster that looks like a tiny pallet I got at a horrible convention in Vegas, a few other things, and the most important pieces of art I own. A snow globe with the Edmund Fitzgerald, a small rock painted with a dog’s face on one side, and “Harvey” on the other. And finally, the most important and valuable thing I own: A small ceramic dog (named Harvey) with a small heart on the bottom of the right front foot. My daughter made it and it’s exquisite. She has a real talent for ceramics, and the fact that she made it from my drawing and did so well makes my heart swell and burst with love.

There’s often a set of earbuds, a mouse, maybe a facemask and some other stuff, but that’s about it. The arms of the chair are wide and long, so perfect for either a mouse or a drink. They’re worn but not too much. The cushions are flattening with age, and the chair itself it showing it’s age. It’s over 20 years old and well used. But it’s still beautiful. While there’s no overt rule, nobody usually sits in my chair besides the cats, and while I try and share it with them, they usually vacate when I sit on them.

Before depression cost me my job, I spend COVID on video meetings in that chair, trying not to rock, but sometimes just rocking anyway so the Zoom meeting participants could get motion sickness watching my background coming and going to and fro. It was my work place, but also my happy place.

It’s a comfortable chair, and I like the gliding part. it rocks every so slightly without making my seasick. Last year we cleaned the porch well enough to really organize it nicely, and my favorite spot became a rocking chair in the corner looking out on the street. I sat there and watched families walk by during the COVID lockdown, I sat there and watched unknown creepy cars glide slowly down the street during the days after the Minneapolis uprising. I sit there still and watch the world go by while I’m in my mental health purgatory. So I like to rock, maybe that’s my age or just some sort of comforting technique.

I told you it wasn’t a quick sample.

Last night and tonight I’ve been left to my own devices as everyone else in the family lives their lives. Yesterday I watched my favorite Luc Besson French action movies and escaped to being first a female assassin (Nikita) and then a quirky old man assassin (Leon / the Professional) and didn’t do my laundry.

Tonight somehow I managed to get my laundry in (it’s still there, waiting for the dryer. Let’s lower our expectations, folks, okay?) and settled in on the couch to watch a movie or three. Another Luc Besson, but this time with Robert DeNiro in a comedy that was kinda fun but stupid and a waste of time, which was perfect. When you’re depressed, wasting time is essential. Either a bad/good movie or doing yet another “paint by numbers” on your phone, which consists of tapping a lot and not thinking — or playing a video game. (My flavor? Terraria. Except instead of playing it I dig endless tunnels in a fantasy world. Just digging. Tunnels. Obsessively.)

I ended up defaulting back to one of my favorite “depression porn” movies: Girl, Interrupted. Other faves in the category? One Flew Over The Cuckoo’s Nest, Donnie Darko, It’s Actually a Funny Story, The Bridge, What Dreams May Come (shudderingly wonderful), Silver Lining’s Playbook, Cake (Rachel was never hotter) Melancholia, Requiem for a Dream – I could go on. I’ve seen Girl Interrupted a million times, and to be honest it’s my fantasy: You go a bit crazy, get sent to a sanitorium, are paired with an astonishingly compatible roommate in an institution which takes some getting used to. You spend time coming to terms with your issues while bonding with a zany collection of folks who are crazy yet really relatable. There’s a compassionate and genius therapist who really cuts through the nonsense and helps you come to terms with your shit. And of course there’s a really obnoxious yet charismatic character who you find to be a connected soul and you learn not just about them but about your self in the process. Sadly, someone dies, but in the end everyone learns their lessons about life, and move on. In the end you knew how to heal yourself all along, and you get the bravery to start over on the “outside” and everyone wishes you well. You walk or drive into the unknown distance and the credits roll. Happy Ending. Yeah. I know it’s not like that.

Except somewhere in there the chair began to squonk. It’s actually been doing this for a few weeks now, but I just haven’t been able to do anything about it. As a result, I’ve not been rocking, and that’s kinda been bothering me.

So nobody else was home and I had a moment (just a moment mind you) of inspiration and decided it was time to end the squonk . Here’s where the really hard part starts. Forget the crippling depression, the electro shock therapy, the beaming of magnetic rays into my head, the shaking hands and the going to sleep hoping to (there is no) God that you have a mysterious brain aneurism in the night and your family is rid of you and gets the insurance money. No, much harder than that.

A trip to the garage.

I checked the utility shelf in the kitchen hoping the WD-40 was in there, but it wasn’t. I knew it wouldn’t be. So I had to find some keys and head to the garage. Fine. I took the scooter keys, reminding myself that I wasn’t riding it enough and the obligations connected. I thought about going for a ride but I’d already settled into sad for the night and didn’t have the inspiration. I thought about how I wouldn’t ride it with my friends this weekend because it would be too much effort. But maybe next weekend.

Stepping outside I wondered if any of the neighbors could see me, and if they would wonder what I was doing. I didn’t really have any reason to be going anywhere. But nobody else was around. Turns out the garage was unlocked, but no matter. The WD-40 was right where I expected it and I grabbed it, turning back to the house. It was over 90 degrees and swampy hot. This morning when I went to the hospital (per diem) for my treatments it was swampy by I still wore a hoody like some kind of emo high schooler – the universal shield.

So I’m back in the house now and I have everything I need. So I go to the glider, carefully turn it on it’s back, and look for the squeaky bits. The axles, I guess you would call them, were covered in cat hair. I don’t think this chair has every been on it’s back, much less cleaned like this. So I went to the kitchen to find something to clear the cat hair. A kebob stick would do it. Couldn’t be bothered to find the wooden ones that I could throw away, so I grabbed a metal one. This brings with it a world of issues, of course. It’ll need washing, and someone may end up asking what I was using it for. And it wasn’t very good at the task. But eventually I cleaned everything out. Time for the WD-40. Happily it wasn’t empty (had it been, it would have been par for the course) and I sprayed the rocking bits, both at the point of rocking, and the connection points. I oiled the shit out of that chair. Of course, now we have oil leaking on the floor and on the chair. So I had to go get some kleenex, try and clean the floor and the chair as much as possible., and that’s that. Throw out all the kleenex and thank (there is no, still) God the trash bag isn’t full, so I don’t have to deal with that whole nightmare guilt. Finally, turn the chair back over and put the WD-40 in the kitchen – getting back out to the garage and everything involved is way too much for one day – and coming back to the chair.

So finally I can watch TV (and even later with the family) and get back to rocking in my chair. So I hit play on the movie and relax back into the evening.

Squeak. Squeak.

Squeak.

And there you have it. With more lubricant than a Texas whore the chair still makes noise. Everything I’ve done is for naught. Exhausting and frustrating and annoying, all to change the noise of the chair from a squonk to a squeak. A simple task, maybe 15 minutes, a non-optimal outcome. But the depression brain in my head told me a whole different story, and this simple failure was about as bad as it could get. After a week of Everything, this one little failure was just enough. It didn’t put me over the edge, it just reminded me. Reminded me that no matter the effort, it’s all just effort. And none of it is worth it. But it was one of the worse fails of my life. Just because it was this week – and this week sucked.

That’s depression. Rinse, repeat, enjoy.

rTMS, the first experience

This post is ridiculously late. I’m already past my halfway point in the treatments, but to be honest the depression has ripped my motivation out and replaced it with things like a “paint by number” app on my phone, or making endless tunnels in Terraria. Or just staring at walls. I’m zoning out a lot lately and finding my eyes stuck on a distant point, unfocused. Usually until they’re so dry they blink automatically, but sometimes that doesn’t even snap me out of it.

So the initial consult was a telemedicine call with what I call my “physical psychiatrist” – the one who hooked me up (literally) with ECT and now rTMS.

rTMS, or TMS is:

(repetitive) Transcranial Magnetic Stimulation is a noninvasive form of brain stimulation in which a changing magnetic field is used to cause electric current at a specific area of the brain through electromagnetic induction.

Wikipedia

It was (I think) shortly after my current episode kicked into high gear back in March or April. Wife and I chatted with the doctor, who I really like despite the number of times he’s electrocuted me. Since ECT took so long to really show benefit, and we’re not even sure it was the ECT – it might have been meds or simply passing time that got me out last time – we decided to go with TMS. I know last time they gave me the choice between ECT and TMS and I said “go big or go home” and went with ECT. It was going to take a bit of time to get on the schedule, so in the interim I was admitted to the partial hospitalization program to hopefully stabilize me, and after that the Day Treatment (Arts and Movement) to give me some structure to my days, as well as refresh my mindfulness learnings. Apparently last time my memory was so bad I couldn’t remember any of the previous days lessons, but they let me keep going just for the fun of it.

I didn’t have a lot of expectations except for the fact that one of the women in the Day Program in 2019 was doing TMS at the same time, and sometimes she would kind of drag herself into attendance, and someone else mentioned that TMS can really “take it out of you” on the day of treatment.

I did a ton of research, of course. Web pages and blog posts, YouTube videos and books. Pretty much everything agreed – no serious side effects, maybe some head pain during treatment, and in some cases, headaches afterward which could be treated with ibuprofen but they usually went away as you got used to the treatments. In rare cases where something wasn’t done right, there was a risk of seizure. My depression brain was hoping for the drama of that last one, but so far no luck. I did have a particularly bad day outside of TMS and during the treatment various limbs were flopping about here and there, but nothing so interesting that anyone noticed.

So the first appointment involved going to the TMS area and seeing my Doc. It was to calibrate the machine to my particular brain and give me my first treatment. The TMS department is near one of the main entrances to the hospital. I’d drive or ride my scooter, park in the ramp, and pop across the greenspace to the entrance. For more than half of my treatment weeks the ramp was being updated, so it was free. Which was nice. I never really like paying full price to park a tiny little scooter, so this kept me a little less grumpy.

Because of COVID, only a few entrances are open. When you come in you have to tell them why you’re there, and they give you a sticker with the date and where you’re going. They hand it to you and then tell you to use the hand sanitizer. At this point I just walk up and say “TMS” and they’re good to go. Sometimes I have to say it once or twice, but to be honest I’ve seen them write TMS, TMC, and a variety of other wrongness. If I’m there on time they get that sticker out quickly, and if I’m running a little late they need to do it in calligraphy with illustrations and an edition number and artist signature. I’m still waiting for them to recognize me and kick a sticker out without asking. Hasn’t happened yet. Guessing on my last day they will.

There is a waiting room that you breeze through, a subwaiting room (with lockers) that I haven’t had to wait in, and finally the TMS antechamber. The TMS room is like a recording studio, with desks and monitors on one side, and a room with two big dentist looking chairs, the TMS apparatus and two big screen TVs. On the TVs they have drone footage of beautiful locations and landscapes, or underwater scenes. Think a visual version of elevator music. For a normal treatment you just go in, get set up and they start the treatment.

Every week they give you a depression inventory and an anxiety inventory (if you’re there for both.) and I can’t remember what my scores were that first week, but they were pretty bad-ish. For every single treatment you get a standard hospital wristband, which they then cut off after the procedure and throw away. I get that it’s in case you have a seizure or heart attack or something and they have to wheel you off to parts unknown, but it feels silly when you’re just in and out in 45 minutes.

For the first treatment, they have to figure out where your brain is. They know where (in general) the motor activating part of your brain is, so they find that and then use brain orienteering to hike over to the part of the brain they want to stimulate:

Schematic representation of TMS coil location for the stimulation of... |  Download Scientific Diagram
I stole this image from somewhere. If you want it back, just ask.

They have you hold your hand up and then they start zapping your brain with very specific, high intensity magnetic waves. Depending on what twitches, they know where they are. They really wanted just my thumb to twitch. So when the pinky went, they moved a bit and then a different finger twitches, they move again and so forth until just the thumb twitches. They tells them exactly where they are along that line of motor control brain stuffs, and from there they can estimate the location of the target area. For future treatments they have it all recorded on the machine and you just have to be in the right spot for it to work. That was calibration, and it was relatively painless and pretty interesting.

I got my first treatment right after calibration. For a standard treatment they have you sit in one of the two chairs (I’m usually in the first, and the main difference is the height of the seat, so one you’re kind of slouching down a bit and another you’re sort of stretching up a bit. But nothing worth mentioning twice, they’re just different. To align you to the machine properly, they shine a weak laser at the right hand corner of your eye, from beside you. If it’s not quite lined up, they’ll tell you to scootch up or down a bit until it’s juuuust right. I’m fairly good at getting in the right spot on the first try, and I can see the light just out of the corner of my eye so I know if they’re going to say high or low.

Once I’m positioned they start with the left side, for depression. It’s a series of a dozen or so taps in rapid succession, followed by 10-15 seconds of rest, then do it again and again. This goes on for 18 minutes. The person administering the treatment will let the first set run and ask where on the pain scale it is. If it’s 6 or more they offer to reposition the tapper and that sometimes makes it feel better. If you’re tired, it tends to hurt more. The pain is in two parts, but pretty minimal. First, it feels like they’re tapping on your forehead with a blunt screwdriver. Second, there is a deep throbbing pain like someone is stabbing your brain with a magnetic hammer. Both are only felt when the tapping is happening and the moment it stops tapping, the pain is completely gone.

On the right side, for anxiety, it’s similar except instead of bursts, it’s one tap per second, and that hurts much much less. Another 18 minutes of that and you’re done. The problem is that it sounds like a metronome and the rhythm helps you get to sleep. Except you’re not supposed to sleep during treatment, so I struggle to stay awake. This might be why I’m tired afterward.

During the treatments I usually plug into my phone and listen to audiobooks. I’ve finished one already but forgot what book it was. I think it was a good one, so maybe I’ll listen to it again anew one of these days. I tried “Zen and the art of motorcycle maintenance” but found the main character a bit annoying. So I fell back on a favorite: Life on the Mississippi by Mark Twain. It’s like 40+ hours long, and just a lot of great stories about the river. And being Twain it’s funny, but not so funny that you laugh out loud and get out of alignment.

When you get out of alignment, something on the machine gets a clue that you moved, and it stops with a quiet beep. The attendant comes in, adjusts you and the machine, and they turns it back on. I know if you move a lot, it’ll pause, but I don’t move much at all, and the few times I’ve paused I was quite literally as still as a marble statue, so I’m not sure why it happens sometimes. I’ve seen other people who get pauses all the time and I’m totally going to judge them and say it’s all their fault.

That’s about it. The attendants are super nice, and make light chitchat as a distraction but given the questions they ask repeatedly, I have a feeling it’s an assessment, as well. If my score on the depression inventory is in the red, they ask the same questions the psychiatrist asks for safety, and then just little “what do you have planned for later” or “how was your morning” questions.

That’s about it. If you have questions, please ask!

Carrying On

I am in my third week of the Partial Hospitalization Program, and things are heading in the right direction. Due to at least one med change, the anxiety has become a much quieter yelling in my head. But it’s not constant, and much of the time the anxiety is tied to something that should cause anxiety. The experience for me is far more intense than it should be, but we’re getting somewhere.

I’ve been accepted to the day program, and I still have TMS to schedule, so I’m not sure what it looks like for going back to work, or what my routine will be like in a week or a month or a year. But it’ll happen when it happens and we’ll roll with the punches.

I feel like the anxiety is debilitating still, but it’s much patchier, and isn’t constant. I’m confident we can get it under control. Just saying (typing, whatever) that is a pretty big improvement. I’m much less hopeless and pessimistic.

I enjoy sitting on the porch, playing the concertina, and interacting with the folks on my care team and in my groups. It’s a full time job at the moment, and pretty exhausting. But manageable.

One of the things my wife wanted me to do is write out “reasons to keep living” or something like that. To be honest, I’ve always wanted to live, it’s just that sometimes it’s hard to know that through the fog. And the fog has been slowly clearing.

So what is the meaning of life? Because really, that’s the question, isn’t it? Besides 42 (which isn’t the meaning of life, it’s the “Answer to the Ultimate Question of Life, the Universe, and Everything” – so we’ll shelve that one.

For me, it’s a multi layered collection of thoughts and things. I would say it’s the things I’m grateful for, the things that bring me pleasure, and the things that I will be grateful for bringing me happiness in the future, or Anticipations. There’s a fair bit of crossover on these lists, but that makes sense in a goofy sort of way.

gratitude, my dudes

What am I grateful for? The things that bring me happiness and pleasure, but also the things that help me day to day, the support and the love of family and friends. While I am grateful for some tangible things, when I think about gratitude I think about people. Yes, I am grateful for a healthcare system that’s at least working for me, and for the privileges I enjoy, etc. But when it really really comes down to it, it’s people.

My wife, who has stood by me through thick and thin, but also pushed me to challenge some of my boundaries. She’s my cheerleader and the person whose hugs are the core of my family. I can’t imaging how hard this must be for her, and I hate that I have to lean on people I love for support. But I guess that’s what support is all about. And for her support and love, I’m grateful.

My two children who are so similar, so different, so much like me, and so little like me. I can honestly say they’re a huge part of the reason I am still alive today. I can’t imagine hurting them with anything I do, or with an absence of me. As I mentioned in a previous post, I don’t want to chop up my problems and give them to those who love me. I feel like their problems are similar to mine in ways that I can offer my guidance and support either because I’ve lived through the same problems, or because I’ve been in situations that have given me perspective. And the pride I feel when I see one of my kids doing something independent can’t be matched. Just seeing them function as adults who can make it in the world makes me happy and understand that we did some things right, and they’re going to be fine. And interesting. And smart. And creative. And fun.

My siblings are a part of my gratitude. I love them all, and their families. And because of COVID we’ve all actually come much closer to each other. We have a weekly zoom call just to catch up and chat, and we now have a call every other week to go through family photos and help the genealogists in the family clarify and understand just who and why and where the photos are. As the baby in the family sometimes I felt like I was being excluded or “protected” from some things, but as an adult I feel like these people are so important, and I want to connect with them as much as we can.

My care team is something really important to me, and invaluable. And it takes all of them. Psychiatrist (meds), Therapist (words), group (peers) and programs (PHP, day program etc.) have different parts to play in the whole healing structure of my mental health. And currently, I really like them all. Sometimes you get a therapist that you don’t click with, or a psychiatrist who doesn’t quite understand, etc. But right now I’ve got a great team in my corner. And I’m grateful.

The last thing is not a person, but another thing I’m grateful for is my relative health. My brain may be messed up, but I can walk, I can do all of the human functions successfully, and aside from some creaks and groans from a 50+ year old body, I’m really grateful for my abilities.

My pleasures? There are many of them, but I’d have to say it’s usually an experience. While I like getting “stuff”, it’s the experiences both with and without loved ones that really make up this list. And these are the things that can comfort me, or I can look forward to, or have fond memories of when I need to access something to pick me up.

Something I enjoy that isn’t surprising is driving. Whether it’s on a scooter, at the helm of a boat (no matter how small) or behind the wheel of our car, it’s all about driving. Someone once offered the idea that as humans we build up energies and the best way to deal with them is to be in a metal vehicle with rubber tires, and build up the miles. I don’t know if I believe that specifically, but I know that a long drive clears my head, gives me something interesting to see and participate in, and help me relax. I’m the one who drove to Iowa when I was in high school just to say I did it. Drove and drove and drove, got to the border and took a picture of the “Welcome to Iowa” sign, and turned around and drove home. One of my best trips, even if I got into a little trouble for it. I’m going to throw travel in here as well, but I think that’s pretty universal.

I need to add scooters to that mix above, as well. I can’t remember what got me started, but in 2000 or so I got my first little scooter. It was slow and plastic, but I rode that thing so often and so long, exploring the city and the countryside. It really was an immediate love. Since then I’ve traded up a few times, and every time it just expands my range and abilities. My best friends are the ones I’ve made scootering, and the most memorable trips tend to be the long rides we would take to another state or even country! It’s a bit like flying, but on something half the world thinks is super cool, and the other half of the world laughs at. That’s kinda my vibe.

My concertina. It’s Irish and it was mildly expensive, but it’s one of my treasured items for the pleasure it brings me. Being able to play music has been just a wonderful experience, and as I practice and get better bit by bit, it’s something that makes me feel, but also makes me proud. The fact that my son and I play and are working on playing together just takes it to another level. But when you can knock out a song you’ve memorized and you don’t make any mistakes – that’s bliss! Rare. But bliss. And I’m going to tack on “media” to this one. While it’s quite different, just consuming music and stories and songs brings me joy, especially if it’s something nobody else understands.

The cabin, and very specifically the boats. We have a nifty zoomy speedboat, and it’s nice to take it out and either fly across the water, or putt along with the family like it’s a pontoon boat. And I have two sailboats – not fancy, in fact one of them is a snark, which is one of the most common small sailboats found in the back of garages and barns. For a while there you could get a free one if you smoked enough cartons of cigarettes. The said would have a brand on it (Kool, Pepsi, etc.) and the cigarette connection is pretty funny if you think about the need for wind. But these little boats which get you wet guaranteed, and don’t move faster than a snails pace bring me hours of one of the best mindfulness exercises I’ve found. When you’re working your butt off trying to tack (turn around) or sail upwind, you can’t think of anything else. And when you’re coasting along in the peaceful moments, it’s hard not to just enjoy the sun, wind, water, and simple joy of sailing.

Finally, the old me. My memory, my abilities, and my outlook has changed so much in the last two years. Sometimes it’s for the better, sometimes it’s worse. But I’m trying to bring as many of my old “me” things forward with my new “me” world. Things like crafting and building electronics. Woodworking and photo collections. Homemade movies with the kids and working on any number of random and/or obscure hobbies. I can’t do some of them anymore, but some I can and enjoy bringing back up to speed in whatever way I can. An example is electronics. I may not be able to program them as well as I used to, and I usually get to an 80% completion point before seeing something else shiny and moving on, but I really do enjoy the feeling of success when something you build actually works.

Ketchup?

The intersection of things I enjoy and things that are in my future are my anticipations. Things to look forward to. To prepare for. To be excited about. Now, I’m going to throw in a disclaimer than all of the things that COVID has sidelined still apply. Going to concerts, festivals, movies, places somewhere else without worrying about viral transmission, etc. That’s all just assumed. But the following are specific or unique enough they warrant mentioning.

While I’m not looking forward to my daughter going off to college out of state, I’m very excited about what’s to come for her. The things she’ll learn and get into and experience are going to be surprising and interesting and sometimes odd. But it’ll be the beginning of the great adventure for her like it was for her brother when he went off to college. I’ll probably bawl like a baby (again) when we leave her there, but I know from my experience with my son that it’s not forever.

One of the logistical elements of her going off to school is that she wants to bring her car. So we’re going to roadtrip from the great Midwest to the east coast. Ideally her in her car and me in the truck so we can carry more things. And once she’s settled out there it’ll be up to me to drive home. While that may seem like a boring drive back across a country I just drove through, it’s guaranteed to be anything but boring. My son is 4.5 hours away at school but I have been able to stretch the drive home into 8 hours. So the idea of picking my way across the country solo is really exciting for me!

My sister lives in a tourist zone during the summer due to my brother-in-laws awesome job, but it’s a really nice tourist zone. We usually go to visit them once a year in the summer and it never fails to be fun and refreshing and wonderful family time. (Ok, 2019 wasn’t optimal, but I was going to be miserable anywhere, it was nice to be miserable there.) And we didn’t get to go in 2020, so we’re really looking forward to it. On top of all that, our daughter is going to live there for the summer and work one of the many summer jobs offered there, which will be a whole other adventure for her before going off to college. And she’ll get to spend quality time with my sister and he family.

I’m looking forward to Father’s Day – while one of my kids will be off to her summer job, it’s always a wonderful day full of my favorite things. Be it food, or activities (history!) or places to go, it never fails to be a great day.

On the health front I’m looking forward to TMS. Remember, the whole point of this blog is to share those experiences? I have no idea if it’ll work, or how well, but I’m, hopeful that it will. Both for depression and for anxiety. And my secret hope is that it’ll help with my memory and such, as it can sometimes help with some things like that, but no guarantee. But I’m still hoping.

I am slowly working on figuring out what my next career will be, and as I go further down that route, I get more and more excited at the prospects. It’s likely to be years before it becomes something I can do for a living, but I haven’t felt this excited about a vocation since I got that job at the record store in college.

As my son and I go down our roads with the concertina, we’re getting good enough that we might be able to play together. And given the joy playing music brings me, I can’t even imagine how cool it will be to play *with* him and figure out how we can make twice as much noise for the neighbors!

As I mentioned, sailing is a really great mindfulness activity, since you’re busing enough that you can’t really think about anything else. So I’m looking forward to doing that at the cabin and on the lakes in town here. It’s not easy, I’m not that great at it, and it takes a lot of work, but it really is satisfying.

And back to the scootering – I’m considering upgrading again. It would allow me to have a more dependable scoot, and go further and faster than I can now. I can even drive it up to the cabin without the fear that it’s going to just stop working on the side of the road! It’ll allow me to connect with my scooter friends again (and be able to keep up with them!) and enjoy things like the rally’s that bring so many scooterists together for fun and ridiculousness. And given the power, I can even take my wife or one of the kids with me on some of my scooting adventures. Or just ride. When my son was born he was very colicky and there was a lot of work. While my wife enjoyed a nap in the afternoon, my release was to get an hour or so on the scooter and just wander the cities with no intent, just exploring.


(too late!)

Finally, it’s all of these things and more that really help me remember what’s worth fighting for, who’s there to love me, and what’s coming up that will make for those lifelong memories and happinesses. While this post was really an exercise in just what makes my life so great, it really does help remind me to think outside of my moment, outside of my pain or hopelessness, and remember that there are so many people, places and things that are just waiting out there. Ready to make for the next great story, funny tale, special family memory or just a peaceful moment.

And after all, isn’t that what it’s all about?

PHP, Round 2

PHP, or Partial Hospitalization Program, is like inpatient treatment but you go home at the end of the day. Lasts from 10 to 15 days total usually. Due to COVID, it’s now virtual. Which is a shame because they had these awesome chairs:

Something like this, but better. Wide, comfy, and tall.

So it’s virtual, and the schedule is the same thing, check-in and group and lessons and such. The staff are all very nice, and some even welcomed me back. I didn’t have the heart to tell them I don’t remember any of them. I do miss getting to know my fellow PHP folk between sessions. That’s how I took up knitting last time!

No direct word on the short term disability, but the wife has checked in with work and they’re being super supportive and I don’t feel like I have a looming deadline of “PHP is over, back to work” any more. Which should help, but hasn’t yet.

No word on TMS yet, either, but there’s no rush and I am pretty sure I’m on the list. They’re just checking with insurance.

As for me, it’s been a hard week. Cabin last weekend and I was in the most idyllic place, calm and peaceful. Brain didn’t get the memo though, so I was rocking the anxiety hard, and when it went to sleep depression clocked in. Literally exhausting to be this wound up. It’s like you’re in school and have to read a paper you’ve written and it’s 90% of your grade. Except you didn’t write it. And you wore pants that don’t fit. And your bully is in the front row, right next to the classmate you’re crushing on.

That feeling. From the moment you wake up, to the moment you realize you’ve been falling asleep during this episode of Superstore. And as I said, if the anxiety quiets, you have depression to fall back on. And the internal monologue (not voices) is saying all sorts of things about how you’re a failure, and you’re a drain on those supporting you, and the ones that love you are just saying that to make you feel better. Garden variety nightmare stuff.

The depression is like an old friend. I can slide right into it, warm and secure in the knowledge that things can and likely will get worse. It’s the anxiety that puts the fight or flight instinct in you and then tells you to wander from the kitchen to the living room without telling you what you were meant to do there. And back again. I think I referred to it as “the screaming mimi’s” in a post forever ago. But I have memory issues, what do I know?

So I have my routine, and tasks that I need to plan and then carry out. It’s the simplest of existences, technically very calm. Almost Zen-like, I guess. Except for the Anxiety and Depression, of course. They never forget me, so I should never forget them.

A familiar rabbit hole

So last Monday it all came to a head. I had an appointment with my Psychiatrist followed immediately by an appointment with my therapist. Wife came to both to help out.

I had some pretty comprehensive notes so I wouldn’t forget anything. I had it broken into four sections: Physical, Work, Mental, and Suicidal Ideation.

Physical. Bunch of side effects from going on and off my latest meds, all per doctors orders. Also, the memory and cognitive issues.

Work. How it’s affected me and how my condition has affected it.

Mental. All the stuff in my head – both real and hyperbole. I had just spent some considerable time alone in my head and that didn’t help much.

Suicidal Ideation. Not to go into too much detail, but someone somewhere said something like “I don’t want to end my life, I just don’t want to live this way.” That really resonates, and sometimes it feels like “live this way” won’t ever change, and that’s what makes you want to give up. Here’s the suicide hotline, if you need it. I haven’t ever called it and don’t quite understand it. If I’m ready to go, I don’t get why there would be enough of my to call someone for help. That’s the whole point – you can’t imagine help or a solution. So why am I going to ruin my last moments cranking up my social anxiety having to call a stranger?

I was really honest. Possibly the most honest I’ve been with a psychiatrist, and definitely my wife. It was a wonderfully concise summary of the issues, but I wasn’t holding back, either. It was a little dark.

The general consensus was that I have a loving and supportive wife, and that’s what kept me out of the hospital. I hate having to put that on her, but appreciate it to the moon and back. So rather than checking into the “grippy sock hotel” I’m starting the partial hospitalization program again. Same place, same program, only this time it’s virtual. Which will be interesting. I really liked the neutral environment of the PHP in house last time. On my initial intake I asked if many people do the program more than once. The woman on the phone said “oh yes” with a bit of a chuckle. Not in a negative way, but in a “yeah, don’t worry about that, we got you.” sort of way.

We’re also going to loop back to my ECT doc, and see what he thinks we should do on the “electricity shot into your head” front. The ECT likely helped, but it wasn’t immediate or even quick to help. So we’ll talk about TMS.

Transcranial magnetic stimulation (TMS) is a noninvasive procedure that uses magnetic fields to stimulate nerve cells in the brain to improve symptoms of depression. TMS is typically used when other depression treatments haven’t been effective. This treatment for depression involves delivering repetitive magnetic pulses, so it’s called repetitive TMS or rTMS.

Much like ECT, the summary of the procedure involves phrases like “why [it] works isn’t completely understood” and “appears to impact” and “seems to ease” and of course “techniques may change as experts learn more” so it’s literally a magical magnetic medication for your malady. I’ll give it a shot and we’ll just see what happens.

And for the PHP and potentially some of the TMS, I’m taking a leave of absence (short term disability) from work. The clock started ticking at 4 weeks, and the fuse to this dynamite is all of my PTO. So I’ll be PTO bankrupt when I go back to work. RIP paid vacations. That said, if the short term disability comes through, that will help quite a bit on the financial hit of this whole thing. As I write this I’m all of 4 days in and the mere thought of work gives me a low grade panic attack. Which is pretty often. I’m hoping I start to forget about it at some point.

It’s not that I don’t like my job, the company, or the people. It’s my memory issues making me lose confidence that I’m doing it right, and the cognitive issues make the diagnostic/ part of the job a nightmare. And I don’t want to not do a good job, so the pressure hurts.

So yeah, we’re back to where we started, possibly on a faster timeline and spending less time lollygagging and going right into it all. It doesn’t make it feel any better (yet) but it’s something.

But apparently that’s enough of that

Let’s just say there should be a trigger warning on this post, and leave it at that.

On March 1st or so, work ramped up. New partnership, new technologies, surge of customers, and the fact that our COVID business had been going full bore since last spring. These things all led up to a record breaking case of anxiety, and in the quiet moments, depression. Back to square one, apparently.

My memory issues from the ECT and major depressive episode (referred to as “the event” from here on out) meant that while I was living in the moment, there was really a lot of forgetting about the moments before and after. 2019 is pretty much gone. I can recognize pictures of things I did back then, and remember some things, but so much of it is simply gone. People tell me stories about myself that I find interested or know that I would have enjoyed, but the memories just aren’t there anymore, even when jogged. As 2021 unfolds, I’m finding parts of 2020 have some holes in them, also.

I also feel like I can’t learn as well, and like so much just goes over my head. Forget programming, that skill is just gone. I played with Arduino this past year and it was a grueling, copy and paste heavy exercise. So it feels like the self taught skills I had that allowed me to be successful in the world aren’t able to help anymore.

And sometimes I get confused. I’ll be sitting in the living room and suddenly get a sense of not knowing where I am, and then in a handful of moments I’m back in the room and understanding. That’s a little distressing. I’ve been having “lost words” since the ECT where I’ll be talking and just not able to remember/access the word I need. Sometimes it’ll pop in, but most of the time I have to use the internal thesaurus, and do the best I can with the words I can find. I’ll also lose my train of thought or intended task. Right in the middle of a sentence everything resets and I have no idea what the original question was, or what I’ve been saying so far. As you can imagine, that’s tough in a business conversation with a customer.

So that all sucks. It’s required me to double my therapist appointments, we’re changing up my meds, I’m back on some of the more evil (but helpful) meds from 2019 that I really didn’t want to go back on.

I have a great care team, and I’m seeing my Psychiatrist, Therapist, and support group on the regular. The support group even has a text chain for instant access as needed.

But for the last month, the anxiety has ranged from low grade always-there in the pit of your stomach, all the way up to rolling panic attacks. When things are quiet, the depression rears it’s lazy head. I’ve dropped all hobbies except practicing concertina (mostly because I have weekly lessons and feel the need to practice) and I’ll play a little bit of simple video games. But I find myself just wandering around in them.

And the suicidal ideation. It’s tough to talk about because it’s been with me since before high school. Just a constant thought about it, sometimes just a tiny echo in the back of my brain, and others it’s at the forefront of my attention. For most of 2020 I didn’t even think about it. I could walk across a street and not think about the timing it would take to get in front of that bus, or I would refill my pill containers and not even consider which ones would get me a good overdose.

I think of it like this: The depression and anxiety are always there. Always have been.

Sometimes, it’s like this:

90% happy, a little anxiety in the background, a little depression hiding out somewhere.

Those are good times. Yes, there’s a bit of the brown and red in there but the vast majority of the time I’m happy go-lucky.

Other times, it’s like this:

That’s where the anxiety spikes. Gives me all the horrible it can, and it takes up so much more of my life than happy does.

This can go on for days or even weeks. Which usually leads to this:

The exhaustion of the anxiety collapses into depression. Which then takes over my motivation and happiness.

When the work anxiety started to grow, I got in touch with my care team and worked aggressively to stop the process. Worked with my employer to remove the afterhours / on-call stuff that was causing me the most anxiety, and focused really hard on my tools.

Unfortunately, that just wasn’t enough. I’m not back to square one, but I’ve been set back a huge amount. Just the everything: mood, motivation, exhaustion, increased memory and cognitive issues from stress of it, and also the suicidal ideation.

I tell people I’m safe, and generally I am. I understand that if I killed myself, it would be directly hurting my children and family. It would be like taking my problems, chopping them up, and then sharing them out to everyone who cares about me. I get that. And that’s my failsafe. But I still think about the bus, or the train, or which meds aren’t dangerous. If I feel like that’s not in place, I will do whatever I need to remain safe, beginning with communicating with my wife and therapist. (Still holding out for COVID, or a quick cancer, or a satellite falling out of the sky on me.)

The thing that makes this feel worse than “the event” is that I was doing so well for so long. I knew I hadn’t kicked it, but it felt like I had it under control. The ratio of good years vs. bad is not an impressive one, and that just reminds me of how chronic mental health issues can be. I feel like someone is going to suggest more ECT, or another run at partial (or even actual) hospitalization, and that scares the crap out of me given the repercussions on my job, my relationships with my family, my memory issues, and everything else. So I feel like I have more challenges, fewer options, and a pretty bad record of success.

But summer is coming and I can hear the birds out the window. Gotta stick to that moment when I can.

A year on, successfully

So it’s been about a year since I “turned the corner” and really started to improve. I spent the lockdown and following time doing really well – dancing in the kitchen, doing crafts, going to the cabin and really enjoying it, etc. Being mindful, focusing on the moment, using my tools, and the after effects of the ECT and the ongoing meds all came together to make things work! I was happy, with so little anxiety and depression that by year’s end my therapist and I had to discuss what to focus on, as my immediate issues had resolved. I completed a PHQ-9 with a score of zero, which I hadn’t seen in years – and just a year ago was pegging with a maximum score.

Happy, well, healthy, and quite stable. Despite the world.

Let’s run down what’s happened in the last year..

  • Global Pandemic
  • Ending ECT (due partially to COVID)
  • Ending DBT (due partially to COVID)The George Floyd event and subsequent uprising
  • Presidential Election
  • Attempted mugging/increased crime
  • Coup attempt
  • COVID-19 vaccines on the rise
  • A return to normalcy
  • A second career

Global Pandemic

So obviously, COVID-19 showed up and threw a wrench into everything – except for me. Getting locked down was an introvert’s dream. Even with a bunch of people in the same house, the ability to just work and not have to commute, do lunch, etc. really made it easier for me to focus on my mental health. I’ve always been fascinated by the 1917 Influenza pandemic, so this was actually an exciting time for me. And I really like working from home.

Ending ECT (due partially to COVID)

By the time of the lockdown, I was showing enough improvement that we were considering stopping ECT maintenance. Coincidentally, the ECT clinic was locked down and had to make changes to their process — so when they called to tell me that I let them know I was “good to go” and thanked them for all their help.

Ending DBT (due partially to COVID)

Again, DBT locked down with COVID, but after a few weeks they were going to go virtual with Zoom. Because I just wasn’t clicking with the group, and the stress of going was greater than the benefit I was getting out of it, I decided to hold off on rejoining. I would like to join a different group some time, but ideally that would be in person (post COVID) and closer to home. I need some urban peeps in my support groups, not just suburban folk.

The George Floyd event and subsequent uprising

We live a mile from where the initial George Floyd incident took place. As a result, we were front and center for a lot of the events of the city — the uprising, the riots, the curfew, everything. George Floyd square is close enough to walk to – and I find myself going there almost as if it’s a spiritual place, or a church of the mind. During the riots, the fires were close enough that it always smelled like smoke, and it was constant sirens and helicopters (some military). National Guard convoys motoring up Nicollet avenue is close and scary. Businesses were burned to the ground just a few short blocks away from us, and tensions were high. Most businesses in Minneapolis boarded windows, and there was evidence everywhere of what was happening.

Similar to the days following 9-11, things changed for a bit in the city. When the helicopters and sirens quieted down, the COVID lockdown and the city curfews made for some extremely quiet evenings and nights. I really enjoyed going out on the front step just before bed, and listening to the uncommon quiet of the city in the summer heat.

Throughout, I was following everything on the news, Unicorn Riot, reddit, etc. It was odd to hear explosions in the neighborhood and then hear them in a 15 second delay on CNN.

Presidential Election

When the election hit, things were still iffy in the city, but the national issues were bigger. We weren’t sure if the voting locations were going to have protests or even attacks. All summer we’d been hearing about domestic terrorists, and even seen some during the riots. So going to vote was actually a little scary. But turned out to be fine.

Mugging

After the riots, it felt like the police just disappeared. Muggings, carjackings, car theft, catalytic converter theft – they all went up quite a lot. On a walk in the neighborhood I joked that I would likely get mugged. And they tried. A car pulled up, a kid got out, put something in my back and told me not to move or he’d shoot. Long story short my Marine voice came out and in the end they went running off with looks of confusion and terror on their faces. I found it quite cathartic. But technically it was stressful, I suppose.

Coup attempt

Watching Washington DC and the coup attempt we were all thinking about the previous summer and the issues we’d seen here. And it’s safe to say we were all worried about how big the coup and related attacks would get.

COVID-19 vaccines on the rise

Vaccines finally got created, approved, and started to get shared. Family members work in essential roles, and got their vaccines quite early in the process. I got mine finally, and I still think it was because my psychiatrist flagged me for it. But it could have been one of many reasons. But one day in MyChart my care team notified me to make an appointment. I have to admit that my inherent passive suicidality was disappointed to get the vaccine, as it meant I was less likely to get COVID and die. Which would really be the best for everyone, in my mind.

A return to normalcy

Some places started opening up, and everyone talked about “getting back to normal” but it’s really going slowly. Every time someone says “normal” I get a slight wave of panic, as the lockdown and pandemic has been so good for me, keeping me home and focused and able to work with some reduced stresses. But it means the family is getting out more, and the house has some quiet moments.

A second career

Finally, I’m working on a skillset that might lead to a retirement career, or a side gig that could maybe even turn into something real with a few years work. Less of a stress point and more of an exciting opportunity.

No news is good news

Not much new to report. Back to work full time, only getting ECT treatments in maintenance mode – once every three weeks. Last one switched to Friday so my second day is on the weekend instead of having to take two days of work off.

Between the latest meds change and the ECT things are fairly stable. My mood is much improved, and I’m doing things like hobbies and getting out of the house on a regular basis. Granted, most of that is for therapy. I am taking a DBT course (Dialectical behavior therapy), weekly individual therapy sessions, and the Face-it men’s depression support group. Add the periodic ECT and I have a lot going on. But it’s all working together, and I’m looking forward to spring.

Work is hard. Both physically and mentally tiring, and I still feel I’m playing catch-up. As we get busier I’m sure it’ll get better, but I’m plugging away and time will make everything better. My care team was against just going full bore full time, but things are slow enough that I feel I’m being eased into it.