a Scarlet D

Rather than 50,000 words, I’m going with a summary before the content:

• Still feel broken, like crap. Slow and thick in the mind and body
• Getting the booster vaccine today, so tomorrow might suck
• IOP is frustrating me with it’s endless clichés and soothing voices
• I have that sadness in my chest that makes it hard to take a full breath
• Anxiety is floating around back there somewhere but depression has a great seat in the bus. SI is still sulking in the back, but she keeps winking at me.

It’s not all bad though.

• I’m trying quite hard
• Also putting a lot of time into my freelancing, but with little traction
• No interesting updates on the VNS insurance coverage. Rejections followed by appeals
• Ever pressing onward
• Ketamine is still weekly, still trying to find that place that itches that spot in my brain and makes me existentially frightened and satisfied at the same time

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But the real point of this post is the new med I’m beginning. I’m starting my Emsam patches Friday. It’s an MAOI and new acronym to add to the list.

Monoamine oxidase inhibitors (MAOIs) and reversible monoamine oxidase inhibitors (RIMAs) are a type of antidepressant drugs given for the treatment of depression. They are good at treating atypical depression, Parkinson’s disease, anxiety disorders, social phobia and have also shown to help people to stop smoking tobacco.

As MAOIs drugs can be fatal if someone takes too much, they are usually only ever given when other antidepressant drugs have failed. Some newer drugs such as selegiline and moclobemide have proven to be safer than the older MAOIs and are prescribed by physicians in the first instance.

-From Simple English Wikipedia

Because it’s a patch and a low dose, I don’t have to follow the dietary restrictions. Yet. They read like a menu of my favorite foods. I also had to flush the Prozac from my system for five weeks, so it’s been quite a while since anything changed or inspired me for a solution.

There is also a long list of potentially strong side effects. Some, most, or none of them may apply. But that makes me a bit nervous and excited to be trying an old school, powerful hammer of a drug. Maybe this one will make a difference. It makes me feel giddy like I’m on a scary rollercoaster. But this time it’s fun instead of horrifying.

With my booster and it’s potential after effects, plus Ketamine on Friday, and adjusting to the MAOI – it could make for an interesting weekend.

In the meantime I’ll be watching Moulin Rouge, and by the time I get to El Tango De Roxanne, things will be just that little bit better.

^{* I just found out there is an online encyclopedia for puns. Oh my.}

Another wonderful prompt from my therapist. I really need to post all of them.

What is the biggest lie that you consistently tell yourself?  Why do you continue to do this?

My depression is the lying.

I continue to do this because I believe both lies.

Today’s post is going to be a shit sandwich. Fun, good stuff on the outside, crap in the middle.

I found an ancient Ande’s mint today and it was the first one I thought didn’t taste like nostalgia and happiness. It kept chasing me. I think it was haunted. When I disturbed it in it’s tomb, the back of my snack cupboard, I kicked off the minor but tasty curse.

I have a snack cupboard. I chide the kids for having food in their rooms, or for marking their names on food in big back letters, since it’s pretty much “everyone’s” food, unless they bought it themselves. Which in later years, they have. Battles can be lost if you keep the big picture on the War. So this is my bunker.

When we’re at the grocery store and I’m randomly dropping smokehouse almonds, bags of Andes mints, or a package of traditionally flavored Oreos in the cart, those are my treats. Back in the day, the kids would holler for this or that and we’d throw “we have that at home” at them while cackling internally.

When we get home I grab all of my precious snacks and put them up in a high cupboard. Wife is short, and the kids used to be. So it wasn’t a hiding place, it was an inaccessible place. After years though treats pile up, get pushed to the back, and get hidden under containers of Oats that are I-have-no-idea how many years old now.

On the master “To Do” list one of the tasks is “clean out the snack cupboard” and today I found myself confused, standing in the kitchen waiting for a thought or purpose in life to swing back around into my brain. I thought I might as well hit the snack cupboard. The “Everything Bagel” rice crisps and a bunch of other health intended items went right in the trash. All of them were opened with hope and abandoned with a taste that wasn’t hopeful.

I tidied up the snacks that remained, and found one lone Ande’s mint. They’re a weak spot for me, as they taste just like Fanny Farmer mint chocolate combination bars. Just went to find a helpful illustration to steal, and found out Fanny Farmer got bought out by Fanny Mae, and now the perfect treat is associated with student loans. They had a “bar” that was chocolate with a layer of light green chocolate on top, and tasted like Ande’s mints do now. Only 1000 times better. They came in fancy foil wrappings. The Fanny Farmer shops were always bright and clean and full of chocolate. Buying something that wasn’t chocolate was like going to the salad bar instead of taking the all you can eat steak option at Fogo.

My aunt would take us there when we visited her downtown. She was very hip. Called her apartment a “pad” back when that was actually a thing, and tells great stories of the political unrest in Chicago in the late 60’s. In the 70’s she had a variety of jobs while getting hired for her profession here in town. One of the jobs was to hand out chocolate samples at convenience stores. Also, she lived next to a convenience store, so every time we visited her, it was time to load up on the candy and pop! No matter how old that aunt and uncle get, they’ll always be the cool ones. She would buy us one thing at Fanny Farmer, usually, and it felt a bit like the scenes early on in Willy Wonka, with the candy shop.

So now I get Ande’s mints (please sponsor me, Ande’s Mints!) and it remembers me of those times. And they taste good. I ration them out, for the most part. And I don’t often share them. The package sucks though, as you’re pretty much all in once you open it. Invariably one or two sneak out and you have to deal with them later. Well, this one was old. Like, so old it seemed like it would call it’s first apartment a “pad.”

The mint jumped out of the cupboard, onto the counter, and down to the floor. It didn’t fall, it jumped. Like it knew the jig was up and it wanted to escape or just get it over with. As I’m bending down to capture it, the tea boxes on the other side of the cupboard see their opportunity and decide to go for it while my back was turned. I grabbed one of them, but it back up, and another jumped out. I finally contained them and closed the doors solidly, but couldn’t help but feel like something, or someone, was telling me it was time to finish off the little mint. It was the curse!

I ate the mint, and while it wasn’t as sharp as they usually are, it was still a good thing. And I got to check off “clean the snack cupboard” from the task list today. Little victories.

Today is not one of the good days. It’s one of the bad days prophesized by everyone on my care team. I wouldn’t even say it’s interesting enough to be called a “one step back” day, it’s just a hard day. It’s cold outside, though I did get some porch time. It seemed gray out before the sun set an hour too soon, not that I went out to find out. I haven’t slept properly in a couple days, and that’s always bad for the mental health. So I’ve decided not to write anything or give any of my feelings validity today, because of the exhaustion and where they’ll put me, mentally. Then a 250 word post turns into 1500. Oops.

I’ve had a headache, which doesn’t help. I think the last time I was this tired I was in the hospital. We’re changing up my sleep meds and it’s not going well, but “it’s a process” so I’ll suck it up for another night to see if things settle down. I don’t think they will. So today – and this week – feel like writeoffs. But they aren’t.

I am still broken. I feel like I have a broken leg, got my ambulance ride, a cast, and sent home with a pillow. Now it’s the inconvenient state of healing. Only I’m not sure I got any salve? We’re waiting for meds and regimens to kick in, which is the professional depressive’s worst activity. We just get to sit in whatever we have at the time and “use our tools” to deal with situational issues. These are the days when there is no trauma, no drama, and nothing to be able to complain about. “Same” is how you answer when someone asks how you’re doing. I’m not flat, I’m not deep in the hole, but it’s all there, and reminding me that some of us are just a head cold or broken toe away from falling back into the pit. My perspective is still pretty bright though.

It’s the kind of day that you don’t need support. You want support. But you have nothing you need specifically. And to be honest, you really don’t want support, because that involves putting the human face on and being thankful. It’s the kind of day that’s actually boring. You’re not getting worse, you’re not getting better, and the Anxiety and Depression personalities must be taking a day off, because it’s actually a bit lonely without them making noise in the head. They’re there, somewhere. I don’t miss Suicidal Ideation, though I may think of her from time to time, remembering the good times.

But I cleaned out the snack cupboard. And have started and am dedicated to completing one basket of laundry. And I did some cross stitching during program this morning, and played a bit of Animal Crossing as a mindfulness activity. I ate lunch (2+ meals a day, remember, regardless of how you feel) and made a bologna and cheese sandwich. So it’s good to notice the things I got done, and the time I didn’t spend in bed or on the couch. Also, I remembered the awe inspiring, actually spiritually beautiful moon last night.

I guess it wasn’t so much a shit sandwich post, it was more of a cheese sandwich post.

That’s a term from the old days of “weblogs” when people would write a post about having a cheese sandwich for lunch. Isn’t it great that Internet content has evolved to much since 2004? https://ask.metafilter.com/5587/I-ate-a-cheese-sandwich

It’s Halloween weekend. I’m writing this Sunday night, the night of the trick or treaters.

Friday

Friday was an off day, meaning no program in the morning and no appointments. Which is actually a rarity. I got up late-ish. Vertigo at a 4/10, sometimes rising to 7/10. Mind blurry in the morning but clearing by afternoon. Attitude was bright, but felt like I was moving through mud. Exhausted by the time I got downstairs. Had a few goals for the day but thought I might tidy up the chair and area I frequent in the living room. I took everything off my table, and the piles of books off the radiator and put it all on the dining room table. Sorting it was easy, but I thought I could go further. So I opened the Drawer Of My Stuff in the sideboard and sorted all of that onto the table. Then I went to the cabinet underneath the drawer. Then the bookcases full of craft and electronics stuff in the front hall.

By the time I had it all sorted I’d done organizing for three major areas of the main floor of the house. Wasn’t even on my to-do list, but huge progress in the de-chaosing of my life. I went through everything once it was sorted and threw out almost half of it all.

I put much of it away in the places it had come from, but in an organized manner. Found places for everything else and ended up with two small piles to go up to my office. And a very full trash bag. Wife was happy to see the piles of sorted stuff, but was shocked to see it all put away within an hour! So that was productive. And exhausting.

Showered again, starting exhausted and making me more so. Wife says she can guess fairly well how my day is going by the length of my showers. Bad days mean zoning out under the warm water, or like that day – when I forgot to wash everything but my arms. Figured out something was wrong before I got out, and had to start all over again because I couldn’t remember what I had missed. And then spent some more time zoned out, staring at the shampoo bottles.

By this point I was toast. So I spent some time at the tv working on the laptop.

Wife was going biking with the neighbor but the neighbor’s tire was flat. So they decided to go check out some Halloween decorations at a few houses in town that had been mentioned on social media. We would drive to one, then walk a mile and a half to see more, then walk back. By the time we had finished the first half I was pretty tired. Could feel my tremor in my legs, felt them buckle once. Was actually sweating on the way back, and had to call upon my Marine Corps stubbornness to make it back to the car. But I made it. Guess how I felt afterwards. Exhausted.

By the time we got home my body was buzzing, like after a hard workout. My vertigo and balance get worse when I’m tired or stressed, and it was getting rough by this point. After a quick dinner we needed to go to the grocery store. I wasn’t sure I’d be able to do that after all of the activity of the day, but it was a short list and I rallied. I use the cart as a walker and seldom go far from it if I can help it.

Saturday

We were having a casual, low impact gathering of friends Saturday night. I woke as I had Friday. Thick, wobbly, the usual exhaustion, and body sore from the previous day. But we had to decorate and clean before the party, so it was a full day of going up and down stairs, in and out of the house, etc. By the time we went out on errands to get some stuff for my costume, we were both running on fumes.

The party was good. A fair number of people showed up, and I drank almost a whole six pack of beer. (Just kidding, it was 0.0% alcohol beer, but really tastes good. A proper IPA.)

I put on my human face for the party, but began quite tired and shaky. Stood around a lot because if I sat down I might have fallen asleep. After a particularly anxiety producing chat with a party guest (no, it wasn’t you) I retreated to my office in the attic. Just time to sit, recompose, and enjoy a piece of pumpkin bar.

By the time I rejoined the party I was wondering how I was going to keep going for hours more. But I did have some great conversations with friends and that helped keep my mind off things. I took a PRN to help with the anxiety.

When I do socialize I feel very self conscious about my memory, missing words, and I absolutely know that there are little glitches in the conversations when I say something that doesn’t make sense because I’m muddled or didn’t hear something right. I can see it on their faces. And that’s a lot of work that adds to the ever present exhaustion.

By the time the night was over, I was too. But I was glad I wasn’t drunk, as that would have thrown me directly into the “pit.” My knees ached and my spine felt like it was about to disintegrate.

Sunday

Slept ridiculously late, woke feeling the way I had for the last two days, and then some. Most off my day was sitting on my laptop trying to figure out how to make a table of contents in WordPress. Again, felt bright but just totally broken physically. And there was a new wrinkle. I felt like I was going to burst out crying all day. Needless to say that was odd and a little disturbing.

The accumulation of the weekend was showing. Walking was hard with my shaking legs, standing up the the vertigo into overdrive and I couldn’t remember a thought for more than a minute. Much time was spent working out what I was doing. I won’t say I was hiding it all from Wife, but she had enough going on that I didn’t want to complain. I felt fundamentally broken. Physically and mentally. But most of my frustration is from wanting to do things but not feeling able to. Which is good, I guess. Wanting to do things, that is. We talk about my getting a job for the holidays and I have no idea how I could do that at this point. Too much wears me thin, and I always feel like I’m a moment from The Bad Anxiety.

The trick or treaters came as expected and Wife was a saint in handling it all. This is one of the nights I hate the most, as it is often a succession of strangers coming to our door. But she knows that and let me veg out. We watched a good scary movie to round out the night, and now I’m breaking one of my own rules by being on my phone and thinking past 11. Now midnight.

I think I figured out why Mondays are tough for me. An enjoyable but hard weekend. Unfortunately most days are like this and it’s frustrating to always feel like I’m using my last energy to do something. Something so far from normal.

I’m going to write up something more complete about how the Ketamine has been going. In short – well. I am going once a week now, but when I was going three times a week I saw a noticeable improvement in mood. As I said, more on that later. The tl;dr of this post is that sometimes Ketamine can be quite intense, for better or worse. And while I was worried the experiences were becoming weaker, I was wrong.

I want to share my experience today. Again, mostly for my own recollection. May just sound like a weird trip to you.

I’ve been having trouble sleeping, so we increased my sleep med. I slept deep last night, full of dreams. Nothing worth interpreting, just dreams. But that meant going into today’s treatment I was a little wobbly. I expected it to be a good trip, and prepared some of my favorite music for it: Beth Gibbons performing Henryk Górecki’s Symphony No. 3 (Symphony Of Sorrowful Songs), with the Polish National Radio Symphony Orchestra.

As soon as I was injected I felt like this was going to be intense. It came on much more suddenly than ever. I was seeing some of the usual imagery. The muted colors of tan, off white, marbled faded yellow. This was familiar and comfortable territory. But rather than settling in, I sped past it. Past the glaciers the cliffs, the tunnels, corduroy waterfalls and the massive vaults I’ve spent so much time learning about.

I lost complete contact with my surroundings and personal space. Body was gone. And everything started folding in on itself, in a dark triangular shape. A phrase kept going through my head. Just one. It was simply a thought. But then everything became that thought. Everything around me became that thought. And then I was gone. Stuck in a loop of a single thought that was this triangle folding in on itself in a black void. And I thought about when I would come down, when this would stop. But then I realized it wasn’t going to stop. And I didn’t really exist. It was just the thought and noise going into itself eternally. I knew there was nothing else in the universe – in reality. That I was going to feel and hear this forever, no end of time, no beginning. Alone because there had never been anyone else. And that disturbed me.

I fought it, but it kept going. I tried to give in and fall into it, but that just made it darker. And I knew that trying to move was pointless, as I was only the thought and had no body to move. And I became afraid. I didn’t want to be eternal like this, and I was slowly becoming the thought myself. Just over and over. A feeling of something that made you think of a feeling of something, the same.

I kept fighting it, but it went on so long I couldn’t keep track of time. I’d been able to feel the blood pressure cuff constrict every fifteen minutes on previous trips, and no matter how far gone I was, I could at least understand where I was in the hour I’d be there. Often at the thirty minute mark I would start coming back slowly. By quarter to, I was still seeing things unusually, but was on the home stretch.

This time I didn’t have any of those milestones, and knew that because I wasn’t feeling them, I was out of time. Eventually the thought was a feeling, one of resignation, other times shame. It was like it was taking all of the feelings of the human experience and explaining that they were all the same thing. And it didn’t get brighter, but I understood that I was in my context, the clinic. But all of it was one thought.

I could look around, see Wife, sometimes see Nurse. But they too were the thought. At one point I felt like I was having a conversation with Wife, but everything I saw, that she said, and obviously everything I said was that same universal thought. So I was still trapped. I was trying to move, but when I put my arms down on the chair’s arms, they would become the thought.

Eventually I felt like I was having an actual conversation with Wife, but the content was all the thought. After what felt like forever we were using other phrases and words, but I was still interpreting them as the thought. Finally, things were making a bit more sense, and I was able to ask (outside the one thought) if this was real, or if it wasn’t happening anymore. I don’t remember. Wife had tried recording me when she saw things start to get weird, but the recording didn’t take. I don’t know that I would have wanted to hear that audio.

By the time I regained enough of my senses and context to talk to Wife about it, I was coming down very quickly. I may have asked how long I had been, Wife reported that I was at the halfway half hour mark. And I was clearing up very well and very fast. We talked about what I experienced, but she also said that some ketamine therapies involve actual therapy after the high. So she asked if I wanted to talk about anything. It was a really good opportunity to explain in more detail how I’d been feeling in the last few weeks, and share how good or bad it had been going. I talked about two steps backward, one step forward. But she guided me through my memory and pointed out all of the progresses, and that the setbacks were expected.

It was raining by then, and a gray day had becoming a cold, dingy, gray day. But I valued the discussion, and valued the experience of being the only thing in existence. Not in a vain “I am everything” way but a humbling realization of how big our world and the human experience actually is.

Hours later it’s still clear in my mind and makes me feel cold and alone. But something draws me back to it and hopes I see it again. I enjoy the disassociation from the therapy, and would not consider today as a “bad trip” but it wasn’t as lovely as any before. Happy to be home, though.

My therapist and I have decided that she will give me a writing prompt once a week, and we’ll use that as a starting point on certain topics. I may share some of them here. This prompt was:

When a public figure dies, it can sometimes feel like a personal loss to us. Describe your experience(s) with this and your thoughts on why it happens

When I was in high school and struggling for the first time with my own definition of who I was, Eric introduced me to Spalding Gray’s work.  Eric was my friend who was the best read and most cultured, he himself a playwright with some young success.  He would throw gasoline on the fuel of our pretentious media consumption.  When we found a movie that was obscure, strange, incomprehensible, or made a heavy impression on us, we would likely call it an “Eric movie.”

Being the 1980’s we were newly in love with Jonathan Demme’s work.  Jonathan’s latest movie was Swimming To Cambodia, a Spalding Gray monologue. The idea of a movie simply about a man on a stage talking was not initially interesting.  He would sit at a desk and talk about a bit part he had in a major motion picture.  That’s all.  That is when I learned what a monologist was.  And that was when I learned that one line in a movie can be spun into 90 minutes of story.  I didn’t know it at the time, but that’s what I wanted to do.

I have since read all of Spalding’s books, seen all of his filmed monologues, and spent hours reading about him on the web.  He had a history of not being normal.  And that’s what he would use to create his works.  Telling stories of youthful indiscretions or the trials and tribulations of the entertainment industry, he would make these bizarre stories feel familiar.  At least to me.  I have always wanted to be a New Yorker, and I suppose more than that I always wanted to be a New Yorker just like Spalding Gray.  

He had issues.  Dealing with depression throughout his life, as well as a horrible accident in 2001 that began his ultimate decline.  He was a passenger in a car that got hit by a small truck, in Ireland.  His injuries were severe, and the recovery took months and months.  At the time I was a young father dealing with a child we had no idea how to help.  This was also the beginning of my formal depression treatment.  

I was so far away from my younger self, the one who wanted to live in New York.  I was completely disconnected from art.  Reading wasn’t an option in my busy life, and movies and TV were for decompressing with the wife.  For a long time I forgot about Spalding Gray.

When he died in 2004 I read it online in the news.  I read that he had committed suicide and that only bolstered my connection to him.  By 2004 my depression was starting to gain steam after years of simply being an annoyance.  By then I had two children, both very young.  Everyone tells me I was a great dad, but most of my childrens lives growing up are a gray cloud to me now.  I can look at pictures and remember, but if I try to think of the year 2004 it’s just a hazy mess.

Spalding Gray was a neurotic genius.  Much of his content was autobiographical in a way that made him very vulnerable.  And told the stories of his own problems in the mental health arena.  Many of them were parts of his personality and didn’t require treatment, per se.  But others were depression, anxiety, or OCD related.  Very entertaining, but in retrospect very telling and sad.

He died when he jumped off the Staten Island Ferry.  He had many attempts before that, but this one was a bit different.  No note, no forewarning, just sudden and sad.  I thought about him out there in the dark and cold weather of mid January.  When I think about it I feel so alone and cold and insignificant in the shape of the universe.  And it jars me to think that he could have felt the very same way in those final moments.

While he was missing, before they had discovered his body, everyone had to go about their daily work.  There was a family birthday.  Friends came and went, visiting and consoling his wife.  Telling her this was just like him, and he’d be back before they knew it – likely with a very long and interesting tale to tell.  An article talked about the eerie normalcy of the house during that time, and it reminds me of my concept of “future ghosts.”  Those things that happen even though you or others feel like the world has ended.  Even in grief, the car needs filling up or the bills must be paid.  Or the memories that feel like they take place in a different life.  During the before.

On January 11, 2004, Gray was declared missing. The night before his disappearance, he had taken his children to see Tim Burton’s film Big Fish. It ends with the line, “A man tells a story over and over so many times he becomes the story. In that way, he is immortal.” Gray’s widow, Kathie Russo, said after he disappeared, “You know, Spalding cried after he saw that movie. I just think it gave him permission. I think it gave him permission to die.”[2]

Big Fish is one of my favorite movies, and the meaning is not lost on me.  When I tell my own stories that seem incredible, or don’t match what the external “me” represents, I enjoy the communication but worry people won’t believe them or that one day they will be gone, I will be gone.  For Spalding it may have been an upsetting release, that permission to die.  For me it makes me cry for a different reason.  It’s the final telling of the stories, but the guests who attend at the end of the movie validate them.  They make you understand that your own story can be told so many times, and it can be interpreted in many ways.  It can seem either so boring or so incredible as to be unbelievable.

I am sad that we won’t have any new Spalding Gray books or monologues.  And that it reminds me so much of myself.  But it also inspires me to keep telling my story and keep writing.  That we all have unique gifts, and we can all use our stories to help, amuse, entertain or even just relate.  Recently I have been given an opportunity to try and tell my stories in their own unique way, and that excites me.  I suppose I will even live through some new stories in the meantime.

In order to read the semicolon posts in order,

–> click this link right here <–

I am writing this anonymously, so if you know me on social media, please don’t link me to it. However, you are more than welcome to post the link to the introduction (same as above) as much as you like. In fact I would appreciate it. Again, part of purpose is to share my experiences with those who need it, or those who want to understand it.

Thank you.

The plan was:

• A PHP, remote from that same hospital  (on the intake call before starting I was answering the nurse’s questions before she finished asking them, I was so familiar with the system)
• Structure my days before the PHP starts, so I don’t just sleep and watch movies
• Follow that with a day program (fewer hours/ fewer days per week)
• Continue with the TRD clinic
• Ketamine treatments
• Continue to apply for the VNS
• Work with my regular therapist on identity, grief, and suicidality.  Because the referral never called me back.  And my therapist knows me really well.
• Continue with my MD, who will get suggestions from my extended care team
• Work on finding couples therapy for communication
• Live “the good life” with self discipline and compassion

I have described things in the past tense, especially from “before” but it isn’t really the past tense.  It’s all still there.  But there is a glimmer of hope, challenges to come, and a future I can think of. 

I’ll take it.

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