I forgot to add this to the last post, but it’s a bit of an update on my neck scar from the VNS. Both scars are fading nicely, and the chest scar is really getting light. My neck is a little bit redder, but I’m guessing that’s from collars and everything else that abuses it. Assuming it’ll come along eventually.
I do find that driving long distances the seatbelt hits my chest device square on, and the belt also runs right along the neck scar. They’re not so much as tender anymore, but over a couple hours it starts to be uncomfortable. So I’m resorted to either adjusting position, which is not easy, or not using the strap. It ends up feeling like the old days, when all you had was a lap belt and mom smoked in the car.
Some of my inner electronics
What’s interesting though is that you can see and feel some of the electronics. The connector is a small bit of wire which is wrapped around the Vagus nerve. It’s then doubled back upon itself and run to the device implanted just below my collarbone. The nerve connection is a little lump at this point and not only can you see it (not a zit) but you can feel it. Which is a little odd feeling.
There is something called Twiddler’s Syndrome, which is when a patient fiddles with their implant (pacemakers have this issue also) enough that the fiddling causes something to not work right anymore. It could be a lead coming off, a wire wearing through something, etc. So I’m being careful not to mess with it much. It’s a pretty rare syndrome, but my anxiety is quite aware and mindful of the issue.
You can also see the wire leading from the connection to the device. That one is a bit more subtle, but there regardless. At rest you really don’t see it at all.
As far as the scar is concerned, I don’t think about it much anymore. It’s the beginning of summer, which means t-shirts instead of collars and sweaters, so it’s out in the open. I don’t think people notice it much, and if they do they’re not saying anything. Because it’s not scary looking like in the beginning, I don’t try to hide it or anything. Although if someone asks and the timing it right, I’m going to say I got it in a knife fight. And you should see the other guy!
Saw my psychiatrist at the Treatment Resistant Depression clinic and he turned my VNS up from .25 to .5 — and this time I can feel it.
I want to mention here that everyone’s experience with a VNS can be different, and any negatives I mention here are how I’m feeling it. It’s not how you’re necessarily going to feel it.
The device fires every five minutes for thirty seconds. When you get it turned up, the side effects might be more pronounced, but ideally you get used to it. In my case, we took a long roadtrip a couple days after we turned it up, and I felt it every single time while I was driving. In normal daily routine, I felt it a lot in the first week or so. That constant prodding didn’t help my anxiety and by the end of those early days I was exhausted. Now, a few weeks along I don’t feel it every time. Often I’ll feel it a little bit, but it’s subtle. But I still feel it a good bit of the time. Depends on how distracted I am. When it’s quiet I feel it pretty much every time still, but it’s less “annoying” than it’s been. So I’m confident I’ll have backgrounded it by the time we turn it up again in a couple weeks.
That said, I have had to use my magnet a bit. A reed switch in the chest part is activated by the magnet, which tells the device to chill out for a minute. After which it starts up again. The roadtrip was for a family event, and I got to see many of my siblings and their families. My wife’s family fills time by talking logistics about whatever they’re going to do next. Or already did. My family fills time with stories. Stories about interesting things we’ve learned, or experiences we’ve had, or most often about our family growing up. So rather than wait 30 seconds if the device was firing (and lose my turn in a discussion), I needed to use the magnet every five minutes at times. Other times I just kept my trap shut and my memory issues erased whatever thought I was going to share, problem solved.
The sensations listed below make it feel like I’m talking right after getting the wind knocked out of me. Not as bad as that obviously, but makes me not want to talk at those moments. One of the concerns was that it would alter my voice (robot voice) but so far I still sound mostly the same. Just a bit softer and a bit like I’m out of breath.
My five C’s, The Sensations
Pool Cue
When it fires, it feels a bit like someone is gently but definitely poking me in the neck with a pool cue. Not sharp, but solid and specific.
Cough
Occasionally I’ll have a cough like when you have a frog in your throat or it’s just a little dry. Doesn’t last long, usually right at the beginning, and it doesn’t persist. It’s like an on off switch. So if I’m having that little cough and I use the magnet to temporarily stop it, the cough stops immediately.
Choke
Imagine having two throats. Your normal one, and another little one on the left side that’s just like a miniature throat. Well when the fob fires, it feels like the little throat is being choked. Still breathe just fine, can eat, etc. But that phantom throat is being squeezed. Hard one to describe.
Cardiac
I haven’t tracked it perfectly, but I have a feeling that I can feel the fob before it fires, with what feels a bit like chest pain, but nothing heart attacky. During the firing I can absolutely feel some chest pain discomfort or compression. But again, more annoying than harmful.
Clamp/compressed
Finally, imagine having a clamp placed on your chest. One side of the clamp is over your left lung in the front, and the other end of the clamp is on your back. And it’s tightened gently but while you’ve breathed out a good lungful of air. So when you try to take a breath it feels like a very small person is standing on your chest. You can still breathe, but taking a full, deep breath is a bit of a challenge.
Mental
So far I don’t know that I’ve seen any improvement. But again, 1-12 months to see any payback. But the constant reminder that we’ve resorted to implanting a tiny little shock machine in my chest can be a little depressing. Rather, fuel for the depression fire.
It’s hard to tell what kind of progress I’m making or how I’m improving. Is it the season, the meds, the ketamine, the DBT (more on that next post), the support of my family, the VNS, the ever changing biology of my body, etc. So I can’t speak to effectiveness just yet, sorry.
I’m traveling. It’s the same trip I took last fall just before my suicide attempt, just in the other direction. It has given me so much to think about from the past nine months. Hospitalization. Semicolon. A second round of electroconvulsive therapy. Ketamine therapy. Surgical implant of a Vagus Nerve Stimulator. Hours of therapy. So many meds and the good and bad that they do.
Bright flashes of forgetting what’s hurting inside me. Long stretches of being mired in those feelings and that despair. So many things I’ve forgotten, and others I’ll never be able to forget. The support my wife gives me with so much love I can’t find any adjectives strong enough to describe it.
When I’m in travel mode I am on a mission and follow a schedule, getting to the right places at the right time and acting and looking like just another passenger. I’m good at it, but when things get quiet I can stop, breathe, and remember myself. 3,000 miles this month so far either driving or being driven. When I got here I was so tired. It was the numb yet also painful tired you feel that shuts everything else down until you sleep. But standing in a train station on a fresh air break, waiting to reboard I fell to my thoughts. It was a difficult time, and I have now decided that I can’t be that tired anymore. It’s the same reason I stopped drinking. The effect is a horrible one, and it pushes me toward unsafe.
I had a perfect night of sleep, and spent the day with my daughter. The evening with my brother, his wife and her parents as well as my toddler-niece. I was social. We are a family of stories, and I told many of my own, making people laugh and smile. I’ve trimmed down a bit, I’m trying to dress well. Fashionably, even. If I can’t feel good I want to look good. But when you peel back the tinfoil on the dish you find the hot mess that’s my mind just beneath the surface.
When I see someone after a long time, they say I’m looking so great, my demeanor and animation show how well I’m doing. For those who know what’s happened in the last year they think how much I’ve improved. I’ll never know what to say to those comments. Because some things have changed, but it’s still pretty bad in here.
It is very nice to see family I don’t get to see often, and to spend time with my daughter. The trip is something I’ve looked forward to for a long time, and it is going well in many respects.
(Gonna start with a quick apology for not writing in a while. My writing machine is not working well these days. Also, I’m just out of a Ketamine appointment so if there are misspellings or things that don’t make sense, I will refund the money you spent reading my posts..)
A million years ago, give or take a million years, my psychiatrist at the University of Minnesota Treatment Resistant Depression clinic mentioned a VNS. A VNS is a vagal nerve stimulator, and I think I’ve covered enough of it in the blog that I might not have to explain again. The tl;dr is that it’s a little thing the size of a car key fob, and then implant it in my chest. For me, just on the left, an inch or so down from the collarbone. It’s also a wire that goes from the fob to my Vagus nerve. It’s a special (expensive) wire, and it wraps around the nerve so the fob can give 30 seconds of an electrical impulse every five minutes. Scar on chest, scar on neck, but they’re not so bad.
To prepare for the surgery I was given a nice list of things to do. Now, I’ve never had surgery before so I’m assuming this is typical. I had to buy expensive pre=surgery soap, and after a complete shower, had to apply said soap to myself and then wait a minute before rinsing it off. You know how sometimes you’re in the shower and you have to get out for a second or go to the other end of the bathtub for something, and you’re totally soaked, but in open air? Yeah, that was pretty much the deal, except I was covered in an eerily non-sticky or bubbly soap.
That night, I had to fast from 8pm on, skip my meds, and take that first shower. The next morning, rinse and repeat – literally. The one thing the two showers had in common was the fact that they were both in the dark. I was due at the hospital at 5:45 or something, so I had to get up at 4:30 to get ready. Waking up that early isn’t so bad when you haven’t really slept the night before, though. At least we know my evening meds are helping me sleep. When I get to take them.
One thing I did know about surgery is that there’s an awful lot of sitting around the house while you’re recovering. So I made a trip to the grocery and stocked up on comfort food and snacks. I still have a lot of them. Eating hasn’t really been something I’ve been doing very well lately. I make a good show of it, though. It’s not as bad as in this video, but I think about Cassie a lot:
Day of procedure we got up at zero dark thirty and made out way to the University. The ramp we parked in didn’t have great access to the hospital, so we got to wander around in the light drizzle. But when we got to the right place, it was an instant intake machine. Go here, get checked in, go here and get your wristband, wait here and someone will take you to your room. Very little waiting and the only time I got grumpy is when the lady at the second checkpoint called me by my last name. I’m surname deficient, so it happens a lot. But it pisses me off every time it does.
I was taken back to my “little room” – three walls and curtain. Comfy though. Bed, chair, nineteen computers, etc. I was given the requisite gown to put on, but it was easy to do and covered me from every angle. No cold butt and back. I met everyone on the care team, from resident to anesthetist to neurosurgeon himself. Answered a million questions, some of them the same. And gave my birthday about 20 times. That’s not unusual though. I was given a plastic bin to put my personal effects in, it was efficient and handy.
One of the things that came up in my many interviews was that I am a normal, boring, uncomplicated patient. None of the comorbidities that could complicate things, no history of many different maladies. But I hoped that would make everything go so much smoother. I had lost hope that my surgical team would screw up and I’d die on the table, but I’m working on that with my therapist. When the anesthetist came in to put my IV in, he had quite a bit of trouble finding a good vein. When the chief anesthetist came in to ask some more of the same questions, he said that I was the most anesthetized patient he’d met. And he was old, with gray beard and everything, so he’d seen a ton of patients. Given the face that I had dozens of ECT sessions, and each one they put me under, I’d say yeah, I have some experience there. In the end they did have to get the lasers out to find a vein.
I was finally ready and got on the bed, ready to stare at a variety of ceilings. We headed down a couple hallways and into the surgical theater. I don’t know what I was expecting, but it was quite light, spacious, and had an impressive display of devices and `s. I was in there for maybe 30 seconds before they said they were going to put me under. No mention of potential pain. In the ECT sessions, they’d say they were putting me under and that I might feel some heat/pain in my arm. And sometimes I would. But not for this serious surgery. In fact they said it and I woke up after the procedure. Really bummed, as one of my favorite parts of anesthesia is when your eyes roll back and you feel a flipping kind of feeling before going out.
While I was out, they made an incision in my chest and placed the key fob of despair in my chest. Then they made an incision in my neck, sorted out my Vagus nerve and prepared to attach the wire. The post procedure notes said I had a “very large Vagus nerve.” So I’ve got that going for me. Somehow they missed a vain, it was hiding behind the very large nerve. So there was a tiny bit of bleeding and they found it and fixed it. Wire from neck to chest and then they turned on the device, so make sure it’s working. And it did. So they turned it off. More about that later.
When I woke up back in my little room, I was a little groggy, but not that bad. Within a minute or two I felt really clear. I could see the chest incision at least, and it was gnarly. All red and swollen and covered in surface glue. Once the glue wears off and the incision chills out a bit, it eventually fades into a scar that you don’t notice anymore. We’ll see about the scar on the neck though.
Turns out there were actually dissolving stitches inside me and the incision was glued shut and covered in the protective surface glue. Felt like rubber cement. The wounds hurt as much as you would expect, but honestly not that much. I mean, the first couple days they hurt like I’d been cut open and poked and prodded. But at no point was I curled up on the floor screaming and moaning at the pain.
That was just me though. My curtain was open, so I could see the nurses station and a couple other “little rooms” in the unit. They brought a man in who was moaning and groaning and deep-sighing so much it was a little alarming. He calmed down eventually but never stopped wanting to get up out of bed and go somewhere. In stark contrast, there was another older gentleman who was in the bed, but sitting up a bit. He had a dedicated nurse, so I assumed something might be wrong or complicated. A bit later when I was able to hear him better, it turns out he was talking recipes with the nurse. Go figure.
They wanted me out of bed and into the Immensely Comfortable Hospital Patient Chair as soon as I could, to help clear any remaining fog. But I was wide awake. They let me get dressed and then the wife came in. We had a chatty nurse for discharge and at some point I asked if, after I healed, I would be able to play the piano. I admit it was about as dry a delivery as they come. But she said only if I could play before. So joke defeated, but that’s ok. I regretted not asking the doctors and such. I may be devastatingly depressed, but I can throw bad jokes out any time.
Here’s a picture of me in the chair. I figure the mask anonymizes it enough, and I really don’t care if it doesn’t. So that works out.
Awake and awaiting a wheelchair ride out of the hospital
Sent home with antibiotics and opioid medication. I asked the wife to be incharge of the Oxy. The last time I’d had some on an autumn evening on the porch didn’t work out quite like I wanted/expected. I did sleep a ton, but within a day or two I was up and able to go downstairs (slowly) and do something besides lay in bed.
So what’s happened since?
First, the scars. Healing nicely, glue came off after a week or so, which helped. All of the drawing they did near my incisions had been sealed in with the glue, so just getting those to go away also helped. I think I’m more than a month out and they look so much better. Just little pink lines and some persistent swelling on the neck scar, but that’s going down bit by bit. Right after I got out and the scars were pretty gnarly, I would wear a winter scarf (it was still snowing, after all) so I wouldn’t scare small children or put anyone off their dinner.
After two weeks we went to my psychiatrist at the treatment resistant depression clinic. I keep specifying that because I have enough psychiatrists in my life that I need to clarify these things. Anyway, he’s a really good doctor, nice guy, and is an exact clone of Stephen Mangan.
He handed me a wand – like a giant tv remote with a big circle bit at the end. I held the circle bit over the fob of despair in my chest, and he activated it. He started at .25ma and I’ll go back to him every couple weeks to get it turned up to .5, then .75 and finally 1ma. I couldn’t feel anything while he was firing it, so he turned it up to .5 for a moment to let me feel that stimulation. Ideally I’ll just get used to it as it happens. It felt like someone was standing on my chest. But not in a bad way. It also felt like there was some electiricity being zapped into my neck, but just a tiny bit. It also had a sensation that is extremely hard to describe. Like there was a collection of (like 8) stiff wires and they were all not so much as painful, but felt. Like I said, hard to describe. But no voice modulation, didn’t sound like a robot or like I was talking into a fan. There are, as usual, a long list of possible side effects, but that was the one I was most concerned about.
For those times when I feel it firing and it’s problematic, I have some rare earth magnets that I can place over the fob location in my chest, and a reed switch is pulled which prevents the device from firing. So if my speech is affected at some point and I need to give a speech or record something, I can turn it off for those times. Carrying the magnet 24×7 is recommended, but this device is also used to epileptics to control siezures. With theirs they can activate it so it fires at will, or
BTW, that psychiatrist is an apparent clone of Stephen Mangan, sans accent: (also, I don’t think he’s a cad like the character.)
Going in and out of stores is fine, Target didn’t beep at me as I entered or left. I do wonder how the TSA will deal with the little electronic device I’m carrying.
I also wonder when it’s firing. It’s 30 seconds every five minutes. There are 1440 minutes in a day. Divide that by five since it’s only happening every five minutes – that gives 288 times a day that it fires. Multiply by 30 for the duration, and you get 8640 seconds. Divide that by 60 for a number of minutes and I get 144. Divide again by 60 to see how many hours that is, and I get 2.4 — so for two and a half hours every day I’m getting these shocks. But I can’t feel them, so that’s ok I guess.
While I would love it if I had an app to go with it, I understand the battery life would suck, and I’d need an operation every month to recharge. As it stands, the device can last up to four years on the single charge it has.
I can’t remember the last time I felt this physically horrible, excepting legendary hangovers of the past. Perpetually awake, the insomnia just drags me through the night. Occasionally sleeping, only to awaken – wide awake for who knows how long. And then I wake up bright and early. Despite my near-legendary ability to sleep in and get back to sleep whenever I want, when I wake up I am awake for good. With tension, headache, and pressurized psyche.
Monoamine oxidase inhibitors (MAOIs) were the first type of antidepressant developed. They’re effective, but they’ve generally been replaced by antidepressants that are safer and cause fewer side effects.
WebMD, I think
It’s the nuclear option of depression meds. There are so many side effects, bad interactions with so many meds, and a restrictive diet that reads like my shopping list for a weekend with the wife out of town. Hot Dogs, bacon, many cheeses, bologna, sauerkraut, pickles, caffeine, alcohol, and so on. They’re not completely off the menu, but if I eat the wrong food, or too much of one of the possibly-wrong foods, or just a randomly bad food, my blood pressure could go all the way up. And then I have some seriously horrible pain and problems. In the meantime, if the food doesn’t get me, I enjoy low blood pressure. Like, actually too low. Which brings lightheadedness, dizziness, confusion, dry mouth, and such. Not to mention the possibility of Serotonin Syndrome. But that’s all just a sample of the litany of complication that is an MAOI.
I was already rocking the dizziness and a world of other junk, but this latest med has brought insomnia, a tension in my neck and shoulders that I haven’t felt in years, headaches, nausea, and some complicated “side effects that might just be in my head.”
Regardless, I feel wound up. I need to remember to take the deep breaths. My stomach is a knot. I’m waiting for the next thing. Could be nothing, could be passing out, could be many things. I’m sure I’ll relax a bit as time goes by and I don’t actually keel over. Until then, I feel awful, on a path to hopefully feeling mentally better. Despite the insomnia, I’m wide awake half the day, then drowsy fatigued until mid evening when insomnia jitters kick in. Sleep, energy, and appetite may improve with 2 weeks. Mood, depression, anhedonia may need up to 6-8 weeks to fully improve. That sucks.
In other news.. I’ve had my last session of ECT last week and I don’t think I’ll miss it. I love going under the anesthesia, and getting a great noontime nap. But not the confusion, memories being erased or dizziness, etc. I had my second to last Ketamine session, I think. That I will miss. But I have to admit the last two sessions were.. weird.
And finally, in a week and a half I get a mental pacemaker installed. That could take up to a year to see benefit.
It’s always good to end on a high note, or a funny note. Leave them smiling. Sorry, not this time. My mood is still not great – just more jittery – which doesn’t make things better. When I’m depressed, all of the many many things we do through our days are grueling. But if I hit a roadblock – Hit my head on a cabinet, spill food, pick up my phone and not know why – there’s an internal meltdown. And if I could, I would allow that internal meltdown to use the dangerously loud voice, to kick something hard, to put my fist through a wall. But I can’t do those things, so they just kind of sneak into the depression and make it all seem worse.
And then there’s the suicidal ideation. They ask me how it is and I prefer not to give a solid answer. It’s .. different. I’m safe. No plan, no intent. But you know what? I have hope. Hope that the surgery goes wrong. Hope the meds clash and cause me to drop dead in an instant. Hope that I’ll go away and I won’t hurt any more. But I guess the point there is that I’m hoping for fate to do something to me. I’m not thinking about how I could do it myself. That’s an improvement, right?
I have filters for everyone. Back to the classic “how are you” question – that’s a great example of the filters. A friend asks? I’m ok. Doctor? I give a bit more detail. Therapist? She gets pretty much everything, just one tiny step up from my wife. Whom I love and sometimes will hold back on the really painful stuff because I don’t want to hurt her. And yet I know how bad that sounds.
My therapist, who I “see” on Thursdays, got a really long answer to how I am. She asked some interesting questions this week, though of course I can’t remember them. But after I talked about My Morbid Hope (good band name) she started asking some very subtle, very well covered questions. I talked about how I had just started the MAOI, etc. And finally she asked me point blank about whether I had any plans or intentions. And through all of this, she’s never called me out to see if I had a plan, or if I was considering acting on it. Which I wasn’t. I figure so much is messed up with meds and therapies, I’m taking time off from thinking about how I can die. But I’m keeping an eye out for nature.
I have a bunch of things going on. Depression, some anxiety, med side effects like dizziness, GI issues, memory issues, and seasonal allergies on top of it all.
The depression gets in the way of everything. If I have even the slightest little moment of “less bad” the depressive elements like fatigue, lack of motivation, self doubt and lack of optimism all get it in way of something good shining through.
An example: Showering and thinking about yesterday. It wasn’t a horrible day, and I was trying to process the whole day and figure out how all of the auditioning I did and the walk in the evening, and even the time on the porch all fed into the overall soup that is my soul. While those were all good things, my depression is a rock star at punching holes in things. None of the auditions were fruitful (anyone need a voice actor?), the walk was tiring – but actually the problem was seeing everything for the first time and not being able to remember familiar things. And the time on the porch? It’s currently gray, cold, rainy, and will be for some time now. And then there was forgetting for a moment that my dad died 25+ years ago. It was just a bit of a flicker, but that sucked *hard*.
I also have an upcoming trip on my mind, one in very much looking forward to, but I’m wrestling with the logistics of train travel. Apparently ticket prices are “market” prices and just go up with time. So I’m getting further and further from my goal as each day goes by. But I’m working to not think about all of that and hope it works itself out.
I was asked about my SI, and didn’t know how to answer. It’s been a part of my constant running narrative for so long it’s difficult to measure.
So it’s a bit of a fight to keep everything in perspective, and hard to figure out how I’m doing with all of that conflict going on in my head.
But I did have those few good moments, and I did see the future for a bit there. So when I’m asked how I’m doing (which is already a hard question to answer) today’s answer was “weird.”. Best I can do.
Yet another post about memory. Some redundant points, possibly. But they’re today’s points just as they were last week or month’s points. And you get movie reviews.
Big Fish
The movie Big Fish used to make me cry. It’s been a while since I’ve cried, though, even when watching that movie. To me the saddest part of the movie is that this person is known for such a great imagination and so many tales. In the end he was loved by all but some of those who loved him the most saw him as a teller of tall tales and nothing else. I can identify with that. Many times in my life I’ve gone on the road less travelled. Or I’ve experienced interesting things. Or even just daily routines that I can write into a grand adventure. I enjoy writing, I enjoy telling stories, and I enjoy having a remarkable spark or angle in those stories.
But I work very hard to be able to tell a great story without lying. My years as a college dropout, my years in the Marine Corps, even my career years working with technology have all contributed to the very large bucket of anecdotes from which I pull when I want to tell a story. Most of them are interesting enough to me that they don’t need embellishment. And when I tell a story that actually happened, I want it to be true so I work hard to make it true. But I often feel like I’m not always believed, that these yarns are my blowing a small situation into a large situation.
So at the end of Big Fish, we see who shows up for this man’s funeral, and without spoiling too much the people who come to the funeral from far and wide are many of the people in the stories. Some of them are exactly as we were shown. Some are normal people, some are a bit more unique. And even more aren’t exactly as they were in the stories, but lie just a few inches from reality. And finally his son and others see that he didn’t make up all the stories of his life. And that he will be remembered for those stories, not just by those he told them to, but also by the actual people in the narrative. This hits me very hard, wanting to be remembered for good things, and for a long time. I am not wont to invent something amazing or write the next Great American Novel. So I would like for the memories of me be for the stories I tell of my life, if my life isn’t memorable enough on it’s own.
So that’s the joy of memory and growing older and passing on memories to others. Not to mention living your life with the ability to use memories to look back and feel the good and bad that has happened in your life.
Little Fish
Not at all as famous or well known, is a movie called Little Fish. A few actors you’ve heard of, most you haven’t. It held a 100% on Rotten Tomatoes in the weeks after it came out, which is no small feat. The pre-COVID plot has to do with a virus hitting the world which makes the victim forget. At first little things, but as it progresses, even the memories of those you love, or are married to, or related to simply drift out of your memory. Many people are left caring for their partners just as a couple would support each other if one of them had Alzheimer’s. The protagonists are a young couple, not so young that they’re crazy 20somethings, but not so old that they have started slowing down. They both have a great, wicked sense of humor, and he is a photographer, constantly taking pictures.
It’s a great COVID-like parallel in that it affects the world but not like a nuclear bomb. A slow, strong, invasive impact. But I watched this couple do their best, use the tools they could to keep his memory intact. The patience she showed was spectacular, and like any human, there were times she was short on patience. But always calmed, connected with him, and did her best to help him be at peace, even while his memory falters.
It’s something I see in my wife. Many of the interactions between the main couple remind me of many of the experiences my wife and I have had recently with my memory. The movie focused on those little interactions, and that’s part of what makes it special. It’s extremely personal, without being too much of anything.
Dory, the Blue Tang
In the last few months, thanks to some moderately intensive physical therapies and a generous cocktail of prescriptions, I have been having memory issues. I’ve gone through something like this before a couple years ago, but it all seemed somehow elastic. I had things to forget, and things to remember. There wasn’t a system to it, it was fairly random.
My current memory issues have been a bit harder. A week or two ago we went to visit some relatives on my wife’s side of the family. I had never met them before, and it was in a suburb very close to my childhood home. We met them and had a nice meal, apparently their coffee was just amazing, and they told us so many family stories. The meeting was on a weekend after one of my physical therapies, so it should have been fine. But it was a week after that someone in my family mentioned the visit. I had no memory of it. Not the people, not the house, not the location, not even the amazing coffee. All gone, like it had never happened, not like I knew it and forgot it, it simply wasn’t there. Even with some memory exercises and discussions about the details, today it is still just a blurry, far away memory.
The assumption is that I’ll be fine, eventually. What strikes me about Little Fish is how well it showed people ignoring, covering up, or facing their missing memories. Some as simple as not remembering a small detail, others as large as a touring musician forgetting how to play an instrument. It’s the look in his wife’s eyes when she asks the typical questions as a test for him. “What is her name? How old is she? What is her favorite color?” She was clear enough, kind enough, but the look in her eyes betrayed the fact that she was worried about, counting on, and sad about the inevitable disconnect between two people. I have seen my wife look at me with eyes asking a normal question but pleading with her look, or even just how she sees me when I’m struggling.
The one that got away
Last night we went to our neighbor’s house and had a few drinks with them and another couple they know from college. We were interested in talking to them about some shared experiences we had with raising a unique child. And just laughing with everyone about the interesting ways being empty nesters has changed our lives. It was nice.
I was tired. It had been a long day, and this was actually a bit more social than I was used to. It was nice to be there, but I like talking, and had a few difficult moments. I would be telling a story, or talking about our experience and perspective with raising children, when out of nowhere it all just went away. That’s what it feels like. Almost as if you have a script or talking notes in front of you all the time, and at some point it disappears. You’re just sitting there and everyone is looking at you expectantly, waiting for the next funny quip or even just the end of an unfinished sentence. But you don’t even have an idea what you were talking about, much less where you were in the story. Sometimes you can fake it, other times you own up to it. But that’s exactly what happened, at least twice. And those are moments that make me feel like absolutely nothing. More.
My wife usually sees it as it’s happening so there’s no fooling her. She helps me as she can, reminding me when I ask. But every time she does, I am grateful and guilty. I can only think of everything she has been through, and how much could be coming down the road. Which sends me just a bit further down my road.
The Point?
That was a long winded way to recommend both Big Fish and Little Fish, and maybe hints that Finding Nemo might be worth a watch. Big Fish is a movie that may make you cry with it’s happy ending. Little Fish gives you a sense of the challenges of memory loss. And could give you a view into some of my own issues.
I was middle aged, lightly active and physically average.
Which is to say, I could walk five miles around a local lake without any difficulty.
Quick to kid, always ready with a joke or a pun.
Mind like a steel trap – able to remember the smallest details, people, places and things.
Self taught, learning a new profession and trying to grow independent business.
Quick with technology, able to suss the functionality behind a new technology, often very quickly.
You know how your dad knows how to do all that? How he can walk you through that task or experience? I was able to do that. And I was quite proud to be able to help my family.
I’ve since had a full run of acute bilateral ECT, three times a week for four weeks. I’m also getting weekly ketamine experiences. I’ve done the ECT before, and in the past found it affected my memory, making it hard to remember things during the acute month. I had TMS with little to no memory impact. I’ve also had countless hours of talk therapy, group therapy at least weekly, and regular appointments with my psychiatrist to discuss physical options. These include a VNS device, MAOI patches, etc. This makes remembering anything tricky. I need to be on point with my note taking abilities, to avoid forgetting something straight away.
In the past, I was able to roll with the punches, just take memory issues in stride. For the most part, this experience has been much the same. Until one day a couple weeks ago in which something changed. Maybe not changed, but became estranged to me. There are times where I have to figure out if I know what’s going on, or am I learning something again? I was okay being in a situation in which I knew I either had to do some catching up, or maybe using memory aids to keep going with a task. I think what happened was that I started having more of these situations, and had to experience the re-discovery of what’s going on – and it was happening more often than not, or at least enough times that it became a normal part of my routine. So it wasn’t an odd happenstance, it was a regular situation to be in.
As a result, things are just generally a little fucked up. I no longer know everything. I am no longer able to just try something out and figure out how and where do it well. I can’t just drive somewhere. I need to drop the destination on my phone and be led that way. Even in a route where I know where I’m going and/or each part of the journey reveals the next leg of the trip – even those routes will provide me with times in which I don’t know where I am, or which direction to head. And actually, I need the track saved so I can look back and understand where and when I have gone before.
Today
I find myself beginning to tell a tale I know well. Or express an opinion. But mid statement, I hear the energy drop out of my voice, and the confidence disappear. I finish what I was saying sheepishly if I can remember what it was. I find myself in situations where I’m not sure why I came to be in that place, or don’t know who or what is going on. I don’t remember people, places, or things. I’m quite good at vague generalizations to cover for these situations, and I use those tools quite often. The simple locations of buttons or controllers for something in the car, or a technology item in the house. I can see it and understand the functionality, but have to rediscover the utility.
I’m still trying to figure out how to highlight these situations, or explain that I don’t remember how to do something I know was used to be able to do, or explain to someone that I know that I’ve forgotten their name or role in my life.
I have begun to employ different tactics and tools to compensate for my failings. If it’s anything I can get support on my phone, I’m all over it. Google maps, or Facebook information, or even my “sent” mail and saved items, and some bookmarks. I transitioned to a professional password/security system a couple years ago, so remembering passwords isn’t an issue. But many of the things I used to use to verify my information, or travel distances and times in order to estimate arrival times. Complementary tools.
What do I expect to have completely lost? Anything during the acute timeframe/month is fair game, I suppose. Or specific appointments – I can use MyChart online to plan for and reconcile my upcoming activities. If it’s important, I work hard to take notes so even forgetting can be worked with. I’d love for all memories to come back, but hope at least the more unique adventures can be retained – or even just have enough information on it that I can recreate the memory in my mind.
There’s really no upside. Or is there? I suppose I can chalk up anything forgotten, and attribute it to the ECT. It’s also making me approach some situations differently. I need to be more open minded, flexible in my tactics and ready to change plans on short notice. My wife is much more attuned to my flaws and foibles. That’s extremely helpful. But there’s no living my life as I used to, not for a while. I’m not sure this time I’ll be able to go back completely to the “old me.”
Finally, in trying to keep in mind simple wins and accomplishments.. In the past week or so I:
Drove to Iowa /w Wife to get child
Finished a 1000 piece puzzle
Continued work on a cross-stitch project
So I am still capable, just in a very different style and in more of a reactionary way. Though I am concerned about the issues, I can also see little things getting better or easier with time passing. And technically I can enjoy things more than once.
But every time I find something missing, that adds just a bit of fuel to the depression fire. I’m hoping it will happen less and less and eventually I’ll forget about the forgetting…
I haven’t been driving, because I’ve been in the acute portion of ECT. That is, until last week. This week I switch to maintenance ECT once a week. And we’re gently re-introducing driving for me.
Our eldest child is a senior in college in Iowa. And she does not drive, so in the past I’ve driven down there, picked her up and driven her back to Minnesota. At the end of the spring break or holiday or whatever it is at that time, we reverse the procedure. Point being I get a ton of driving time, which I love — and I tend to take wandering, meandering detours just for fun.
Since I’ve been finishing up the 3x weekly ECT sessions, I’ve not been driving. The sessions have left me exhausted, disoriented, and have been erasing certain memories. There have been many times where the wife is driving and I’ll have no idea where we are. I’ve just forgotten whole parts of the cities. So that’s why we’ve been cautious. On this trip, however, we eased into it. Wife drove out of the cities, and at the first gas stop we traded places and I took a shift driving.
Parts about driving that are actually hard:
First of all, understanding where I am. If I have the phone guiding me, that’s fine. But modifying the directions or destinations, etc. is well out of my control. This used to be something I managed to do quite well before. For now, though, making any changes require pulling over to do so. The phone is still confusing and takes some serious thinking to be able to figure it out. And I’m doubly no good with distractions. Generally if I have to take focus away from one task to look at another both tasks lost quality.
The physics of driving are fairly simple, but for the first hour or so I felt like I had to work really hard to keep in my lane, not cross over any of the lines. As the day went on I relaxed and could “feel” where I was more clearly. The physics of speed came into play, as well. The phone can clue me in to the actual speed limit and show me my own speed right next to it. So the trick was to get to the right speed, and then set cruise control during the long straight bits. Add in the extra detail of being over the speed limit by X mph, what’s appropriate, what’s too fast, where the speed traps are, etc.
Finally, working the “all around” mechanism of driving, all of the above combined into one ball of driving and being able to spend the right amount of attention on the specific skill that needs it. So it’s a bit more exhausting, always trying to figure out what happens next and how that happens. Even the buttons to open and close and lock doors, or the Bluetooth connection to be able to play something simple and calming in the background, they’re all memories I need to re-make.
Political Elements:
What went wrong that could prevent me from driving? Nothing, so far. The personally imposed driving restrictions are more closely tied to the ECT sessions. During the acute (3 sessions 3x weekly) sessions, it’s overtly stated that I should not drive. But now that we’re starting the “maintenance” ECT sessions, how does that impact my restrictions? What could go wrong? Well obviously if I’m under an influence (ECT, Ketamine, Anesthesia) I shouldn’t be driving. But those days between? This week we went to Iowa to get the oldest child. Normally I would do it, but this time Wife and I both went. I got behind the wheel after a petrol stop, so I could ease myself back into driving on the long and boring straight roads. That went fine. I will say, though, that the learning curve is pretty good, but it’s there.
Openness and honesty is important here. I’m trying to build up trust in my ability to drive. Just how much detail to I have to divulge to the wife? How much does she sense – in fact what does she sense or observe that I don’t even know? Do I need to exclaim at every headspin? Call out any missteps I take trying to put on proper shoes? Do I need to equate all of my emotional hardships? Or can we just suck it up and get back to driving? Somewhere in the middle, I guess, so I can keep Wife informed, but not be too noisy about every little ache and pain.
I enjoy driving alone, and that is sometimes very therapeutic for me. How much truth can I bend to make that happen? I don’t think I need to bend any facts or sugar coat anything. Everything thus far indicates that this slow re-introduction and my driving in the last few days have been useful for reorienting me, and hopefully opening me up to driving anyone.
The future of driving:
Where does this leave us? Unknown. There are a lot of moving objects. Getting the VNS installed, frequency and duration of both Ketamine and ECT, the maoi patches and whatever else I get into this summer. These things will have to keep us re-evaluating my driving abilities and permissions at least all spring.
In the back of my mind an occasional thought pops up before being promptly forgotten: How will this affect my summer scooter riding?
Something has changed in the last few days. This no longer feels like “depression, that old friend” but something less under my control. Scarier, more lonely, no end in sight. I spend much of my time trying to figure out what’s happening or what’s real or not. During Ketamine, I no longer track what’s really happening to me, simply go from moment to moment trying to understand. Is this me? I can feel everything changing, but is it returning me to normal or taking me further from normal? Nothing feels real. I never feel that return to my natural state, everything is a different world.
I feel like I’m just repeating myself, complaining about my days rather than explaining them. So I will attempt to organize this post a bit better. Honestly this is all for my own recollection.
Sleep
Not sleeping well at night, always sleepy during the day. I lay awake with my restless legs at night. If it’s a day with an appointment, I wake up in time. If it’s a free day I hope to sleep late but rarely do. And I carry the exhaustion through my daylight hours, regardless of how busy I am. By the time I go to bed, it has converted itself into restlessness and we repeat the whole thing.
Eating
No appetite, although I could drink milk and hot cocoa til the cows come home. Next to me right now I have a fresh can of pop and a container of Pringles, my favorites. But I know they’re just going to sit there, unopened. I have the intention of eating but just can’t make it happen. I can’t say I mind the weight loss.
Drinking
I haven’t been drinking for many months now – I used to know how long. It no longer feels like a personal challenge to see how many months I can go without drinking. Now it feels like something I’ll never do again. But lately I’ve occasionally had the feeling that I really wanted to drink, and drink heavily. I think it’s just the desire to get out of my head, to escape for just a bit. But I’ve come this far, no sense breaking the streak now.
Control
I feel like I’m not in control of things anymore. Like I used to have coping mechanisms but I’ve forgotten them all, or they don’t work. I feel like it’s no longer something I am experiencing and capable of handling, but now it’s something happening to me. No expectations of what or when, or that I’ll remember any of this. The loss of control, as well as the inability to retain the experiences really shakes me. A large part of my identity is my ability to know what’s going on, have valuable insights, remember everything so well, and be able to navigate life in a reasonable manner. But that’s not as much so anymore.
Process
The ECT is as it always has been. Answer some routine questions, get to the procedure room. Have the daily small talk about which scooter t-shirt I’m wearing today. Tolerate a little sharp poke or two in my hand or arm, and then before you know it the smell of saline makes the room roll over my head. Next thing I know I’m getting my juice and…
Here is where I sit for a few minutes and try and remember the name of the treat they give us when we wake up. I can taste it, feel the texture of it in my mouth, but to know its name is apparently too much. Blueberry something.
Muffin, I guess.
Impact on others
Wife is having to do a lot more to support me, to shore me up and have my hugs. We have friends and neighbors giving me rides to the hospital, then Wife comes and picks me up when I’m done. I used to enjoy talking about myself, almost bragging about whatever is happening. Now I feel self conscious. I feel embarrassed that I am having to rely on these people who care about it, knowing I can’t do anything to repay them. I feel I have an inability to show appreciation for or repay their kindness.
Creativity
My men’s group commented on and complimented my ability to write. I don’t feel like I’m writing anymore, I feel like I’m just writing my complaints and posting them to the dark loneliness of the Internet. It may be useful to read some day and look back. I know there were other things I intended to write about – general stories of my life – but I can’t remember what or when. It’s possible I have an outline somewhere, and I may be able to get back to it again some day. But right now I feel like my creative source is all gone. But my original intent of writing to convey what it’s like to be in my head seems long gone. It feels less like art and more self indulgence. It feels less like sharing my experience for others to benefit from, and more just confused and muddled ramblings.
Safety
I still feel safe. I don’t have any intentions or plans to hurt myself. I do indeed feel lost, as if I don’t know who I am or where I am going anymore. If I were to be struck down by lightening, catch a horrible disease and die, or simply have a random heart attack and drop dead I would be surprised. But there would be a feeling of relief in there somewhere. I feel I would be more useful, less of a drain on family and friends, if I were to pass away naturally.
So when I read about potential side effects from a med, or medical concerns for someone my age, it’s often with hopefulness. But I don’t feel competent enough to harm myself. I don’t have confidence I could find a way that would be efficient, that wouldn’t cause more pain than I already have, and that wouldn’t damage my family. I feel when I’ve had major depressive episodes before, it’s wrapped up by now. That my confidence is not great that this is going to clear up some day soon and I’ll get on with what’s left of my life. It feels like uncharted territory, and it’s hard to imagine things clearing up and carrying on.
Confusion
I have trouble even writing these posts, because I can’t remember the point I wanted to make. Regardless of the specific memories, I carry the feelings. Feeling lost, confused, unsure, and mistaken. I can’t tell what I’m forgetting, and rarely recall something that’s nagging at me. Thank God my wife is by my side. She is my memory now, and reminds me of all of the things I’ve forgotten. My life is in her hands now. Nothing seems real.
I will try to read these posts before making new entries, hopefully to keep the repetition down. Until then, thank you for listening.
a Scarlet D 