Quick Update

I had one of the worst weeks of my life last week, but things are looking up! I’ve added to my maladies: Extreme dizziness/vertigo, muscle weakness, easily exhausted, and I’m unsteady on my feet. But even with all of that (which I’m hoping is temporary) I haven’t felt this good in a very very long time. I still have a long uphill climb, and I’ve been assured it’ll be a “two steps forward, one step back” journey, but I have some optimism now and that’s been the biggest help. One of the things I’ve really been leaning on is writing, and have many pages of journal entries that I’m going to work into epic posts here. It’s going to be a long read but hopefully informative and interesting. Stay Tuned!

Ketamine and VNS, the ugly details

Likely part 1 of many

Some logistical updates. I have a feeling this will be a regular type of post, as there are so many moving parts to the two main therapies.

Still no word on what’s between Ketamine and VNS. The notes on my visit mention the possibilities of an Emsam patch, which is an MAOI in, well, patch form.

Ketamine

So apparently BlueCross/BlueShield, who have been quite helpful and payful thus far, will not pay for Ketamine. I feel like if you had a party and refused to pay for the drugs people wouldn’t respect you. Just saying. It’s not like Brad from down the block is asking for the Ketamine, it’s an actual doctor who is going to apply it in a healthful way to try and make people not want to die.

So we’ll be paying out of pocket for the Ketamine. We may have to sell one of the cars, as it is going to cost $24 every month. I’m thinking Brad down the block can’t get it for that cheap! And no, you can’t pay $48 and get extra. Sorry.

Here’s the order of operations, not delayed by any insurance approval:

First…
I’ll get the first Nasal dose in the mail, and the care team is going to trust me not to sell it on Lake street or just snuffle it down as soon as it arrives. Which is fine, since doing either of those things would likely invalidate my discount Ketamine. And $25 doesn’t buy much these days, beyond 3 poorly-thought-out domain names or almost a lightning cable for an iPhone.

My first appointment is before the end of this month. So it’s not tomorrow but not December, I suppose. I’ll bring the nasal dose in and they’ll administer it. After that, they check vitals every 15 minutes and ask me how my trip is going. I’m leaning towards listening to Moby or the Chemical Brothers. Or Crystal Method! As long as I don’t jump out a window and start self harming with the window glass, like Helen Hunt did in the 1982 made for TV movie about the dangers of drug use, “Desperate Lives” – don’t worry, her brother Doug McKeon is there to tackle her back into the broken glass.

Yes, the one with Dr Joyce Brothers. Duh.

If that goes well I come back every Monday, Wednesday and Friday for a period of time that eludes me. I think it’s a couple weeks then down to maintenance once a week or something. Each appointment will be an hour “in the chair,” a polite way of saying show up on time. Can’t drive until the next day, or “a good night’s sleep” – so you literally have to sleep it off. Just like the old days! (I wouldn’t know, actually.) So the dear wife will have to be my chauffeur again. Not as bad as the ECT though. For some people, there are no real effects, for others it’s a bit of a disassociation. I think I already mentioned that though. They keep you around for that hour to make sure you’re good to go and not sue them for falling over later.

So it sounds like October could be a fun month for me.

VNS

The ease and cheapness of the Ketamine will be offset by the process and time frame of the VNS. I was told Livanova, the vendor, would be calling me to coordinate. They’re the makers of Symmetry™, which has been shown to significantly improve lives. (Direct quote from their web site.) I’m not really mocking them (much), as they have some great information on the site, as well as a picture of what I might start calling the “peacemaker” – because it’s like a pacemaker but brings you peace. I should maybe market that to them and see if we can get a campaign going.

Imagine two quarters next to each other

If you watch the video, fully the last third of the video is a legal text scroll — read it though, it has some fun side effects. They seem to stress that the most common side effect is infection, so yeah. Awesome!

What’s that? It all seems way too easy? Well..

Later that day…

Had a call with a representative from Livanova, the makers of Symmetry™, which has been shown to significantly improve lives. She was very nice and had a ton of information for me. Things like:

  • The device was FDA Approved in 2005
  • It’s about the size of two quarters next to each other, and as thick as two quarters
  • 7 out of 10 users significantly improve their depression (I think she meant it would get lesser, not better)
  • 4 out of 10 users have complete remission (so those odds are actually better than initially expected, though could be vendor padded.)
  • I will continue my depression meds while on the device
  • Installation is done under general anesthesia, takes about an hour, and is an outpatient procedure
  • It can take anywhere from 1-6 months to really get all of this going on, if there are no delays in insurance approval (see below)

From there, it’s just a matter of waiting. For some people it’s immediately useful, others it can take up to a year to really show benefit. But who cares, I’ll be a cyborg!

More Later that day..

I got the first email from my friendly representative at Livanova, the makers of Symmetry™, which has been shown to significantly improve lives. She sent me some bureaucracy to work on, and let me know that usually BlueCross/Blue Shield denies VNS. (sad clown noise) But they’re used to going through all levels of appeal and eventually go to external review. Approvals have not been 100%. Which will delay the timeframe, of course, but I am ?? [*] by the knowledge that it’s the vendor driving the approval. Since they get money if it’s approved, they’re the best capitalists for the job!

* Another word I couldn’t find. Not even going to come up with something funny. Deal with it.

So one is going to happen, the other not sure. And BCBS apparently isn’t in the business of making sad people not want to die. Yay money and USA and stuff. Pretty sure if I was in Denmark I would have a professional assigned to live with me and make me better 24×7, or allow for the “care team euthanasia” concept. Oh well.

Treatment Resistant Depression

So I guess it’s official. I have treatment resistant depression (TRD). Today I finished the third and final intake to the MHealth/Fairview Treatment Resistant Depression Clinic. More about that later in the post. You’ve never known me to take the direct or short route, why start now?

Treatment-resistant depression (TRD) is defined as major depressive disorder (MDD) in adults who have not responded to at least two different antidepressant treatments in the current moderate to severe depressive episode. Treatment resistance occurs commonly in up to 30% of the treated MDD patient population

— the internet

Last Friday I started another Partial Hospitalization Program (PHP) with a different organization. My previous care team referred me to it, as well as the TRD clinic. I’m not saying they gave up on me, but I did finish my almost complete consumption of their full menu. (PHP, IOT, ECT, TMS, CBT, etc.)

We scheduled it as a “just in case” because I was finishing my intensive outpatient therapy (IOT) and then going on a 10 day trip that was both fun and (happy) sad and stressful. I wasn’t doing very well before the trip but knew I could rally for it, and not going would have been far worse for me. That said, about halfway through I broke completely and became my sister’s most boring houseguest. Eternally grateful and thankful to her for the Zen-like spa feel of her home and hospitality.

I forgot the word “hospitality” and thought I’d try and work through it. Ended up zoning out and staring at a tree for a couple minutes wondering if catatonia involves “not being there” or if it was just zoning out. This happens to me a dozen or more times each day. Being tired doesn’t help. It’s only for a few minutes or even seconds, but sometimes I lose 10 minutes. According to Wikipedia:

Retarded/Withdrawn Catatonia: This form of catatonia is characterized by decreased response to external stimuli, immobility or inhibited movement, mutism, staring, posturing, and negativism. Patients may sit or stand in the same position for hours, may hold odd positions, and may resist movement of their extremities.

— Wikipedia

So yeah, just zoning out I guess. But it isn’t any less frustrating to be stuck with no movement when your brain is still going.

It was good we had the “just in case” plan in place, as I’ve leaned into the depression with a fervor since coming home.

It’s a bit different than the other PHPs I’ve done. There is a great deal more education on mindfulness, yoga, setting boundaries — whatever it is, they’re going to cover it. Also, I suspect I’ve caught another suburban therapy. I did DBT a while back and it was in the actual suburbs and I didn’t click with any of the people there or leading the group. My time spent with the hospital five minutes from home, in the city, has been great though. Just the right mix of extreme and/or kooky patients, tough-as-nails-but-still-quite-nice facilitators, and just a few tissue-bearing therapists. This PHP, however, the people are really nice, but so far none of them come close to the dumpster fire that my problems are looking like. Also, the facilitators could all be nuns for the way they speak in calming tones and use extremely generic examples when talking about therapies. (“If your friend borrowed money from you, and didn’t pay you back, the next time they ask to borrow money what might you set? Anyone? Anyone? Boundaries. So if you said no, you would be setting a good boundary.”)

But underneath it all I can sense that they know what they’re doing. My check-in yesterday was rather dour, so the not-nun-in-charge gave me a call to see how I was doing. It was a very pleasant call (for her) but I knew she was calling for a safety check, as during the conversation she asked all the right questions and coaxed all the right answers out of me. They’ve also made it clear, like any good PHP would, that if you’re late for (virtual) group, they’re going to politely call your [*] person-who-gets-alarming-and-or-bad-news-from-the-care-team. If that person isn’t reachable, they’ll call the second person on that list, with a bit more seriousness. And finally, if they can’t get that other person, they call 911 and send the police to your house. So they can make sure you’re not dead. I guess that means they can just break into your house. Bummer. I only know all of this because in my last IOT someone had that happen to them accidentally and we were all able to laugh about it later, but none of us were ever late for group from then on.

[*] zoned again looking for the word, can’t find it, going with a joke instead.

So I’m in this PHP for three weeks and then Lord knows what. I am a professional depressive at this point, so it’ll have to be something. Or of course I could get better, but see post title for my optimism. I know I need to have a good attitude and give effort and work and try, etc. But those abilities are not home right now, if you’d like to leave a message, please hang up and try again much, much later.

Treatment Resistant Depression Clinic Intake

I was going to just use TRD from the first spelling out of the phrase Treatment Resistant Depression, but it didn’t make for a great subheading, so I typed it out. Oddly enough it takes just as long to type and is just as awkward as when I say it out loud. Not only do I have to remember the words, but say them in the right order. That takes at least 30% of my CPU, so everything gets all herky-jerky for a moment.

I was referred by my Psychiatrist, whom I love and trust almost completely. She thought the UofM could maybe hook me up with some next-level stuff, including studies that have better access to new meds and treatments than she has. She’ll still be my primary, but the TRD clinic will guide changes to my meds as needed. It’s actually a nice plan, and makes me feel more comfortable with any future med changes.

Because they need to know everything they can about me, I decided right away that I was going completely filter-less. Depression gives you masks to wear to hide how you’re feeling, and it gives you all sorts of tricks to make it look like you’re a normal human being. Most care team members are too smart for that, so you can’t use those. But you can use filters. This would be omitting information, answering vaguely enough to not be a lie but maybe not be the truth, implying things you know they will infer wrong, and of course just flat out lying at times. I use them very carefully, though. I do want my care team to help me, but it’s all about content, context, and audience. If I’m talking to my regular (GP) doctor, I may sugar coat things just a little bit because some of the information I could give her would cause her to potentially overreact strongly in some cases. Consider suicidal ideation(SI). Passive SI is just wishing you weren’t here. Like you don’t want to die, you just don’t want to feel like you do now. Or maybe even thinking through what suicide would entail and cause. But no plan, no intent. (That’s the phrase I use when I took the PHQ-9 and I get 26 out of 27 points in my weekly TMS check-ins. It’s the magical (legally required?) phrase that lets me off the hook for answering question number nine with a “3 – nearly every day”) So there would be times where my GP isn’t used to certain attitudes and would make notes that use the phrase “extremely high risk.” (True story!)

The intake process has three steps:

(1) Social Worker
Video call with a nice lady who essentially just started from zero and went through my whole history. She had my medical records and had studied them, but wanted to get her own full picture. Given the nature of the questions she asked, and how she asked them I really do think she spent some time reading the many notes in my chart. I’ve read them and it took a long time, and I didn’t even have to absorb the information. She asked questions here and there, and the questions were clear, specific, and showed her level of knowledge not just of me, but what I’ve been through. I could feel the questions sliding past me as I’ve heard some of them a million times. Ope, there goes the question to rule out schizophrenia. And there’s the OCD tip-off. Ooh, that’s a new way to screen for bipolar!

She was brutally frank with me and I was brutally frank with her. I did get a proper shocked expression and further questioning on one question, which both scared and satisfied me. I get callous enough about all of this stuff, and I deal with it so much, that sometimes I say things and forget how awful they are. And to shock this woman who had clearly been around the block a great many times, was a surprise. Aside: When I first went looking for psychiatrists, I found a great one. In my intake with her (many years ago now) she actually misted up and needed a tissue. That didn’t seem like something she did very often. As it happens she had to refer me on, as she had a conflict of interest. But she was so nice. I also have grown so accustomed to this I know when I’ll get a PHQ-9 and a GAD or just a PHQ-9. Sometimes I have to remind them. Also, I like to count the number of hand sanitizer dispensers there are in the waiting room. It’s usually a single digit, but I’m waiting for the 10 pump office!

We took the whole hour to go over everything, and I don’t even think I had any “Oh I forgot to mention that” moments afterward. It gave me hope that they really knew what they were doing.

(2) Med review
Video call with a psychiatrist with a focus on pharmacology and also holistic healing. We were going to go from my first meds in 2001 all the way up to today on the med history, and we actually went further back than that, come to think of it. Now, I have memory issues. You know that. So I was wondering how I was going to be at all helpful given the fact that she has my chart and probably knows more about my med history than I do today. She had a “funny” name that I couldn’t quite figure the origin culture, but it was very clear to me very quickly that she was German. (And I remembered the first name from German class in high school!) Accent and everything. And you know what? I realized I wanted the detail and precision of someone from Germany analyzing my meds. So that was really cool. I go into any intake hoping that the person isn’t mean or gruff or dismissive. And they absolutely rarely are. (I’m looking at you, my first GP who had a habit of scoffing at my ailments.) She was very direct and to the point. In fact, she chastised me for things like any alcohol consumption, or not practicing good sleep hygiene. And I not only felt guilty, but wanted to change my ways to garner her approval! We walked past her office today but she wasn’t in it. Felt like going past my Honors English teachers classroom the day after I failed to turn in an important paper.

We discussed things as well as I could remember, and she guided me through the history nicely. It was once again both scary and fascinating to recount the number of meds I’ve been on that didn’t do a darn thing. Except a few which separately and combined made me a sleepy zombie, gave me my salt-shaker efficiency tremor, a bunch of side effects I don’t even want to talk about, the one that helped me gain 20 pounds in a month, and the one lately that I don’t mind — which has an appetite suppressant. Those 20 pounds are long gone, and I feel that’s just a bit of Pharma Karma.

By the time we were done, I felt a bit chastised but had the same ring of hope as from the first call. They really might know what they’re talking about!

(2.5) Let’s talk about the present

Monday was one of my worst days yet. Only to be unseated by Tuesday. So today the depression and anxiety thought they would continue the party, and both pitched in to help. My tremor was going full earthquake in hand(s) and legs (when I go down stairs I feel it, it doesn’t help going down stairs, BTW). Anxiety really stepped up and I had the full body shivering like I was cold – hadn’t had that since March, so a real throwback. And because I was going out into public, I needed to shower. I think I’ve explained how onerous that is. Depression wasn’t letting Anxiety run the party, so I had that going on in the background. Hard to get out of bed. Also, I had an early 8:45 call (for a professional depressive that’s early) with the PHPs Psychiatrist. Part of a partial hospitalization is regular and frequent med reviews and changes. I was worried she was going to offer another med on top of the layers of history I already had not working for me, so I was stressed out about that too. Someone at some point in the intake had mentioned the possibility of a mood stabilizer. And I was ready with a great argument about how I only had one mood and it didn’t need stabilizing. But it turned out to be more of a meet and greet and status update and check-in. She was very nice, and seemed competent. So I was your basic ball of nerves on top of hopelessness. An annoying cocktail to say the least.

(3) Psychiatrist, aka Real doctor (this was today)

I was meeting with the first male care team member I’d had in at least more than a decade. I remembered my past experiences with men who shrink heads, and started to get a little nervous. On top of the day’s feelings. Again: Dismissive? Condescending? Gruff? (I forgot to worry about “too young”) While I was working on that nervousness I heard a familiar yet unidentified sound. It was like a series of clicks, then nothing for a bit, then more. Yeah, turns out I was sitting next to a TMS room, and that was someone getting their left lobe magnetized. I will always remember that pattern.

After the nurse did my blood pressure and vitals, as she was leaving I thanked her for not asking how I was, as that’s another phrase I’m learning to hate. I always want to say “Do you want OK, or do you want the detailed list of problems?” She laughed and said she’d try to remember that.

As it happens, my psychiatrist is Dr. Guillaume Secretan (played by Stephen Mangen) from the hit BBC comedy, Green Wing. In the show he’s a bit cavalier, but a stunning doctor behind that mask of humor he always uses. Ok, mine wasn’t like that, but he looked like him! And while he was younger than me, he wasn’t that young, and I got a sense of professional competence from him.

We had the usual Q&A, and he admitted to (actually) studying my history, but just wanted to know how I was doing, “what brought you here today” and what did I expect to get out of the program. He was asking very specific questions that sounded like screening questions, but were very different than the usual phrasings. Which was kinda cool. I’ve been through enough and read enough online (I’m an expert because I read an article on Facebook) that I usually know what they’re talking about when they start to explain things. A couple times he said “but you probably already know this” and he was right. It was a classy touch. He knows his patients have been in the business for some time now.

I mentioned being filter-less with him, and even dropped a “no pressure, but you’re my last hope” on him and he handled it well. We talked for a good while about how I was feeling, how I felt about it, the depth of different issues, etc. Popping in with (again) very insightful questions that made me feel heard and understood. All on track to be 3/3 on the intake hope score. I talked more openly with him than anyone yet. I know that’s a tough phrase to hear for some of you, but everyone up until him got a mask or a filter. Everyone. It was a good conversation and I’m not going into detail. But it felt like a conversation about my malady, not one sided or the usual situation where I explain everything knowing full well I’ll have to explain some of it again next time. He was taking good notes.


And then we got to solutions. I didn’t think I was going to go in and get a magic pill that would cure me in an hour. So much for 3/3 on the intake hope score. Given my regular care team’s response to the request, I didn’t think he would go for “euthanasia by my care team” since they couldn’t fix me. Nor was he open to a medically induced coma until I was better, so I could skip the hard part. I know we talked about me wanting to detox off all my meds and start over, but don’t remember his response. I don’t know if it was an option as either in or outpatient, but he didn’t laugh at that one.

As we talked about options I have to admit I slowly began to check out a bit. It was that realization of how much I have in front of me yet, and I wasn’t handling that well.

The first thing he offered was ECT, but said he understood my reluctance due to the memory and cognition thing. He said if my response had been all gung ho and positive about it he would have made that the recommendation. It’s still on the table. The next thing he mentioned was a longer term solution, Vagus nerve stimulation. (VNS from now on) This involves the placement of a doohickey under the skin and a wire leading to the Vagus nerve near/in/under(?) the brain. I had read about it, but not much as it’s pretty new and really on the extreme end of therapies. It’s a simple concept:

The vagus is the tenth cranial nerve and arises from the medulla; it carries both afferent and efferent fibers. The afferent vagal fibers connect to the nucleus of the solitary tract which in turn projects connections to other locations in the central nervous system. VNS mechanisms include an anti-inflammatory effect, as well as changes in monoamines.

— actual wikipedia

It’s got one of the coolest possible side effects – “trouble talking” – which I think my wife might enjoy. Also, no spelling checker is comfortable with the word Vagus.

The last word is really the only one that I knew, and that I knew was important. It’s the brain process that Monoamine oxidase inhibitors (MAOIs) address. We had also talked about MAOIs, which is a whole class of drug I’ve never tried, mostly because they’re really old and some of them verge on barbaric. From what I know, VNS does what those drugs do, but much, much, MUCH more thoroughly.

Here is a ridiculously cool page about VNS with pictures and stuff.

Downside to VNS is that the process for approval, then intake, consultations with the neurosurgeon who does the procedure, and getting one booked can take a Very Long Time. So that’s a great long term strategy, but I reiterated that a year was too long. Also, it can take up to a year to actually start working. So that’s 2023 or so. If it works. Efficacy is 40-50%.

He had some short term options already queued up in the interim. The one we settled on was Ketamine. Whenever I tell someone (Facebook experts like me) that I have depression the response is usually “Oh! You should try Ketamine!” — like you can just go buy some and bang! you’re cured. I know it’s in the news a lot, and everyone seems to have a friend of a relative who had it and it was totally like night and day (every therapy has a testimonial that says that from someone, which I’m sure is true, but never for me..) Also, there are different variations, some FDA approved and some not. There’s IV administration or muscle injection or nasal spray. So many different factors and insurance unknowns that it’s not really “one” therapy that anyone can use. In fact part of the reason I was referred to the TRD clinic was because they had the best access to it, with studies and such, since they’re a university affiliated team.

Many people know about Ketamine as a drug of choice back in the rave days to today. It’s a highly controlled substance, so even if you get the nasal spray, they’re going to be doing the spraying in your nasal. Professionally, it induces dissociative anesthesia, a trance-like state providing pain relief, sedation, and amnesia. I’m already planning the playlist for the administration sessions. It’s not always a trip for everyone, but just in case, they keep you around after they administer it. Not sure if they have a proper rave chill out room, or what. I’m a little excited to let my doctor get me high.

Again, Ketamine needs insurance jockeying, appointment availability, etc. So while it’s a quick fix, it’s not tomorrow or next week. Hang in there.

So to make a long story short (too late!), Ketamine in the somewhat short term, and a Cyborg implant poking the brain for the long term. Maybe more TMS or ECT between the two, just for fun.

Me

Oh and of course, both VNS and Ketamine come with the “we don’t really know how it works, or why it works, but hey! It seems to!” Most therapies are not to get rid of depression, but to get it to a state in which you can live with it, and maybe go into remission but don’t hold your breath. It’s usually something like “for 50% of the people who try it, they get up to 40% reduction in depressive symptoms.” In that example, that’s a 50/50 chance you’ll feel less than half better. Science. What they’re looking to do is to hopefully pull me back from a 26/27 severe depression score to something more manageable like a 15/27, which is “moderately severe depression.” Just typing that made me 2% more depressed.

During the hour, he had been looking at his phone on the sly (I think we both knew it wasn’t very sly) and I started to get worried he was looking to get a status on the guys in white jackets – you know, the ones with the big net and a straightjacket — because clearly he was thinking I needed to be put away where all the silverware is plastic sporks and you have to turn it in at the end of the meal, also known as “the grippy sock hotel” because that’s all you can wear on your feet. But apparently he was just checking to see if the Jaguar dealer had this years model in for him yet or something.

When we wrapped up I told him about my lovehate for Hang In There, and he looked me straight in the eyes and deadpanned. “Well, then, hang in there.” That right there made me like him all the more. He walked me out and I was sure he was about to lead me by grabbing my arm until the white jackets appeared and put me in the loony wagon. Seriously, I spend a lot of time holding my breath about that after talking to people. But they weren’t there, and I didn’t have a copay, so I just wandered out. It was a lot to take in.

I sat in my car in the parking lot for a very long time just thinking. For some reason it felt like I’d been given the news that I had a terminal disease. I know that’s a bit melodramatic, but it’s how I felt. It’s a special kind of sadness reserved for those times when there just isn’t an easy answer.

And then I went and had a Whopper, because trying to start an eating disorder makes you hungry.

Hang in there!

Three words I am growing to hate more than any other. While I understand the intent behind them, what I hear is:

  • You’re all done with me for now
  • It’s likely that what you’ve (care team) done for me left me wanting more help
  • You’re going to go on (happily) with your life for the next two weeks or month or whatever arbitrary “check back in with me” timeframe is
  • I’m going to wait and feel like this until then. The whole time.

rTMS, the last experience

That’s a wrap. I’ve completed my last round of rTMS.

I reread my first post on TMS and the first paragraph is pretty rough, but it’s also still pretty accurate. Today I nearly aced the depression inventory (not in a good way) and my tremor has blown into a full body quake at times. It’s like shivering with anxiety. The staring into space actually hurts when my eyes dry out. I do realize I just came back from a long and exhausting trip, so I’m working on self care too.

I mentioned that I got a visitors badge every day at the hospital, and I just said “TMS” and they write it and hand it to me, then I use the required hand sanitizer. Which is prodigious. I used to slowly walk the 20 feet to the door so I could rub it all in/off, but in the end I usually just opened the door handle with disinfectant still all over my hands. I figured I was helping them sanitize the door. No charge. I also mentioned that I figured they would know me on sight and write my badge without my saying “TMS” but that it would probably happen on the last day. And I kid you not. It was the last day. I’ve done the math and over the last few months I’ve had 144,000 pulses of magnetic energy tapped into my head.

tldr:
Anxiety somewhat better, depression worse.

Bit more info:

Diagnosis: (still) Major Depressive Disorder, severe, recurrent episode without psychotic features
This means it’s pretty bad since they used the words “Major” and “severe” and it keeps coming back.
But I don’t have the psychotic features, which would be delusions, hallucinations, or both.

Depression Symptoms: depressed mood, sadness, anhedonia, fatigue, feelings of worthlessness/guilt, difficulty concentrating, hopelessness and suicidal ideation

The PHQ-9 is a depression inventory and rating system. The GAD7 is the same but for anxiety. I take both before pretty much every appointment with my Psychiatrists, so I’m pretty good at them. Just meaning I know how to take them, obviously.

My score on the PHQ9 for depression went up one point between starting and ending TMS. I wonder if that messes with their outcome statistics, since I got worse not better. On the GAD7 for anxiety, I’m down 6 points, which is an ok improvement. I think that takes me from severe to moderate. Anxiety is a lot more unpredictable than depression, as it comes and goes and varies in intensity. So it’s hard to inventory well.

Highlights from the official notes in my chart:

  • He reports some noticeable improvement in anxiety, but no appreciable difference in depression
  • Presents with appropriate and depressed affect
  • He did not experience side effects with TMS
  • He may be a candidate for future ECT treatments, as he had a better depression response to that, but he also had significant side effects with the ECT treatments
  • It is possible that he may notice further improvements in depression after finishing with TMS, and if that is the case he may be a candidate for TMS treatments again in the future
  • Overall, patient has not achieved greater than 50% improvement in depressive symptoms, throughout TMS series, as indicated in rating scales (that’s the diagnostic goal, at best cut the depression in half)

I have a feeling the little improvement I got in the anxiety is about as much as I will get. I don’t really want to get more memory issues, nor do I want to put my wife through the pain and hassle of getting me to and from ECT. Though I really enjoyed the peanut butter and jelly sandwiches she would bring me in the afternoon when I finally came out of the anesthetic haze.

I am currently between programs, having done a PHP and an IOT and now I’m starting another PHP on Friday with a different organization, just to mix it up. Also going through a lengthy intake process to get into a Treatment Resistant Depression clinic, and from what I’ve seen so far they really know their stuff.

Much like COVID, what we thought would be a few weeks has strung itself out into months. It was the anxiety that put me in this hole, it’s the depression that’s holding my head under water.

This is apparently the logo for the current episode of depression. Drew it in program.

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?