Adventures in brain damage

Right, I’ve got a story to tell you.  It’s got everything: visions, near death experiences, poetry, needles, and bucketloads of unreasonable luck.  A word of warning though (well, two): it’s rather long, and kinda intense.  I’ve pretty much decimated it already and there’s only so much I’m willing to cut, and to quote my favorite English teacher: “if you can’t say it in 4,000 words and 11 pictures, it’s probably not worth saying”.

First, don’t worry, I’m not dying.  At least, not any faster than the rest of you. As far as I know. That’s not a challenge, call off the hounds.

So, it all started when I stepped out of the shower with a raging hangover…

Back in 2010, I’d crashed at my friends’ house after a very late and boozy night.  I was toweling off my legs. Suddenly, I felt a tingling sensation in my feet and a flushing climbing up my legs, like my skin was crawling, joining a rising feeling in my torso and creeping up into my head.  It made me think of vertigo, but I didn’t actually feel dizzy.  I chose to sit down anyway.

You know the movie screen in your brain? Where old memories play back? Well, suddenly, what seemed to be forgotten yet intensely familiar memories started playing unbidden, as if my brain had found a dusty old box marked “Childhood Mementos” and pulled out all the polaroids and toys inside, with all the happy brain chemicals that implies. Dopamine times Santa Claus raised to the power of a bag of only-correctly-colored M&Ms.

After several seconds of this, these visions just… faded away.  But as they did, so did my memory of them.  All of my memory of them, just… evaporated.  I cannot describe how uncomfortable, how violating it feels to have a freshly recovered memory be stripped away from you as you struggle desperately to hold onto it.  As I sat there wondering what the fuck just happened, the tingling and skin crawling just faded away too.  No blackout, no loss of consciousness or place, no disconnection with reality… but there was a hole in a corner of my short term memory where those middle 5 seconds were ripped away and it left me with a deep anxiety and depression that would last for days.

Since then, I’ve had probably 200 to 300 of these, maybe more.  I called them “spells”.

You’re probably thinking I went straight to a doctor, right?  Heh, have you met me?  a) I was hungover as shit, and b) I was 30, so invincible.  Nothing to worry about!  I had more of them, but I wasn’t that bothered.  Once, I even stood on one leg for the duration, just to prove that I wasn’t actually dizzy.  Then, during one spell, I must have noticed something unusual about the vision: instead of just seeing the usual stuff, I saw something impossible.  Maybe I was flying?  Whatever it was, I realized: these must be dreams!

Now I had a working theory: they’re dreams I had while I was blacked out drunk, and that’s why I don’t remember them normally, but they come back briefly when I have blackout-type stimuli.  Now I had a theory, and it was totally benign, so I had no reason to go see a doctor!  This was Lucky Break #1.  Yes, really.

Fast-forward to 2013: something felt off, and I decided to leave my job in LA.  It was the best company and team I ever worked for, but things weren’t clicking for me the way they used to. I gave a year’s notice, then left and went traveling (you might have heard).

I had a savings and a plan: learn new kinds of coding, then make apps and games for enough income to keep going!

My plan failed, miserably.

I turned out to be really bad at learning new kinds of coding, and it freaked me out.  Learning was always what I was good at!  I kept on traveling, living off my dwindling savings, drinking away my worries, telling myself that it was just a misunderstanding.  Surely I hadn’t been like this at work, a freeloader, skating along in the shadow of my colleagues all this time!  But when I took on contracts back in the US, it just confirmed what I suspected: I was bad at coding now.  I couldn’t pick it up the way I used to.  It matched my experience volunteering on the ships: every time I went back aboard, I had to start “learning the ropes” all over again (that’s where that saying comes from).

This was getting scary.  I was drinking a lot now… every time I had my first drink, the demons in my brain would start to shut up, and I felt a little bit more human again, so I kept going.  It was like I was drowning, and the drinks helped me float.  If you drank with me while I was traveling, you probably saw this in action.  Sorry for all the tequila.

Now it’s 2020, and a part-time contract is going full-time just in time for the pandemic.  Six months was all it took to send me to a doctor about those spells.  Well, that and the new symptom.  See, at some point in there, I realized that right in the middle of these spells, I lose the ability to recognize written words.

“What?” you say?  Just that!  Say I read a sign that says “Thank you for not smoking”.  When I get to the middle of one of these spells with the mind’s eye playing its show, if I look at that sign I don’t see those letters anymore.  Instead, I see different letters, random ones, a jumble.  Something like “Jqtnz asj tzp sde rjsqmpi”.  For you nerds, it’s like your eyeballs forgot to turn off ROT13.  Then, a few seconds later when I look again, it’s back to normal.

Clearly something was wrong.  I gathered all of the data I’d accumulated, all of the detailed analogies I’d crafted about my spells, and took them to UCSF on Oct 05, 2020.  I met my first neurologist there and spilled my guts, giving her the whole sordid tale of my spells.

She replied that I’d given her a textbook-perfect description of a left temporal lobe mini-seizure.

I had epilepsy. A weak, localized, focal version of it.   My ears started ringing.  The seizures had likely damaged my memory recall, she explained, and probably my ability to form new memories.     I think.    The room got smaller.    It was easy to dismiss, she went on.   Maybe?    I don’t remember.    I think I stopped hearing what she said for a while.    My heart was pounding.

I wasn’t crazy.

There really was something wrong with me.  There was a reason for all of it.  My spells were actually seizures.  My brain really was damaged.  My memory really was getting worse.

I was so relieved.

I wasn’t crazy!

She ordered more scans to dive deeper into the status of my temporal lobe and hippocampus (which makes new memories).  In the meantime, she prescribed an exploratory dose of a common anti-epileptic drug called Lamictal (lamotrigine), which then tried to kill me.

I was planning to continue traveling, so I made sure to ask her all the pertinent questions like “what if I was at sea and lost all my medication overboard, for example?”  She said I’d be fine, as I might just get more seizures for a little while, and mine aren’t the dangerous sort.  This was Lucky Break #2 – I had happened to ask about stopping lamotrigine cold-turkey.  And she said it would be absolutely fine if I sailed and worked on the rig and she’d even be happy to write a letter clearing me to work aloft at sea!

Two weeks later I was preparing to go to UCSF for my next MRI.  I had developed a fever, but a Covid test came back negative and I had no other symptoms.  The morning of the MRI, the nurse said if the test was negative, I could go in for the scan.  It was 7am and I was standing in line outside UCSF.  My fever was above 103F / 39.4C (oral).  I was sweating buckets and feeling like shit.  My phone rang: it was UCSF Radiology telling me “never mind, if you have a fever, don’t come in after all”.  So I staggered home and let my friend talk me into going to urgent care.  She might have saved my life.  The nurse practitioner couldn’t legally tell me to stop taking the lamotrigine, apparently, but she did tell me to stop increasing the dose and call the neurologist.  I knew reaching her would take days, but remembered Lucky Break #2 (where I found out I could quit it safely), and decided to send her a note and stop the medication on my own.

The next morning, my fever was 104.6F / 40.3C (oral) and I had a full-body rash.

My friend was freaking out.  The phone rang: it was a nurse from the neurologist’s office responding to my message.  When he heard, he absolutely REFUSED to get off the phone until I promised to go straight to the emergency room.  I’ve never been to the hospital for myself, much less the ER, and this was October 2020 — the height of a pandemic!  But I acquiesced.  Instead of an ambulance, I walked 10 blocks to the nearest ER (uphill! both ways!) and checked in.  After suffering 4 hours in the non-Covid waiting room, they took me in and started an IV and ice packs and arguing over what the hell was wrong with me and how likely I was to die in the next few hours.

After many hours of back and forth, they finally decided on a diagnosis of “Drug Reaction with Eosinophilia and Systemic Symptoms”, or DRESS Syndrome.  Syndromes are different from diseases in that you can’t test for them, directly.  Instead, they have a checklist: you have to answer yes to at least a certain number of questions in order to “pass”.  In the case of DRESS Syndrome, I had to “earn” at least 5 of the shittiest points in my life to get to a place where they’d stop arguing with each other and admit me to the damn hospital.  The main things I remember them saying are that:

1.  It’s a sort of allergic reaction that attacks one of your organs.
2.  It’s fatal 10% of the time.

The good news was that in my case, it happened to attack my liver.  That’s actually the least likely organ target to kill me.  The bad news is that I’d beaten the hell out of my liver over the years, and it does a lot of important things, so recovery wouldn’t be fast or easy.

First, they had to get the fever down.  Because my liver was in the middle of its own personal Vietnam, it couldn’t handle any acetaminophen (paracetamol).  So what did they give me?  That’s right!  Icepacks!  Specifically, 4 icepacks: one under each armpit, one under the small of my back, and one in my crotch.  Everywhere you don’t want one for exactly the reason you don’t want one there, for 24 hours a day, 4 days straight.  Every time they melted, a nurse was on hand with fresh ones, like she was auditioning for a role in one of Faust’s summer bargains.

I slept maybe 9 hours over 5 days.  Nobody knew I was there except my friend, since I could just have one visitor and she was the one who brought me in.  After the first evening’s drama, it was clear I would survive and so there was no point worrying anyone.  I just had to wait for my fever to drop and my liver numbers to come into line.

… Which, after my fever broke on day 4, they did, and significantly faster than the doctors anticipated.  A hepatologist (liver doc) came in and physically reached into my mid-torso like a Kali priest, grabbed the edge of my liver, squeezed it, grimaced, and mumbled “It’s not quite as bad as I expected…”  It turns out that thanks to Lucky Break #2, by taking myself off the lamotrigine when I did, I saved myself quite a lot of misery in the hospital, and possibly my life, as the DRESS could have attacked my brain or heart instead and those are pretty much always fatal.

Remember that MRI I missed?  When I finally got it done, it showed clear edema (swelling) in my left hippocampus. This explained the memory formation problems.  You know there’s edema apparently if it’s glowing white; in this case, you can see the difference between the left and right ones. Usually edema there means permanent damage. However, I wasn’t on anti-seizure meds at the time, so it’s possible that bad electrical activity was causing it instead.  If it’s not glowing on my next MRI, that means there’s a chance it might actually heal a bit.

That wasn’t all the scans found, however.  They found a bunch of plaques, some of which we knew about from an old MRI, but a bunch more that we didn’t.  The docs ordered some more tests: an SSEP to shoot low-powered lasers into my eyes and test the precise results with electrodes on my head, and a spinal tap to collect cerebrospinal fluid (CSF) and compare it to my blood.  If you know where this is going, shh!  Don’t spoil it for the other kids.

The SSEP process was uneventful, but it found optic neuritis in my left eye.  That meant something in my body attacked the nerves between my eye and brain.  Big red flag.  Thankfully, my actual vision is unaffected so far.

The spinal tap… well, if you’ve had an epidural, it’s a similar procedure.  The resident told me he’d done “more than 10 and fewer than 100”, which should have tipped me off that I was probably #11.  He had me lay on my side and numbed the injection site.  I learned our spinal columns stop around 75% of the way down, and that’s why they go in just below that for things like this, so they can’t accidentally stab anything too important.  The resident stuck the needle in and at first, it wasn’t a problem.  But while there’s no spinal column nearby, there are still nerve tendrils snaking out to their respective extremities.

A shock went down my right leg, like a car battery was briefly hooked up to my toe.  I almost flew off the table, but thankfully it was controlled enough not to swing the needle around and cause a chain reaction.  And then it happened again, except to my right testicle.  Twice.  I was trying to commit this resident’s eyes and name to memory for future vengeance purposes until I recalled, with a mumbled curse, how rather awful I am at that sort of thing now.

You know, when I bought the domain name fuzzymemories.net and named the blog, I had no idea about any of this.  I’m pretty sure this is my version of what Dante referred to as a contrapasso, or “ironic hell”: to live a life of adventure, then be unable to remember any of it.

My verbal memory is comically the worst, though.  A neuropsychologist gave me a 2 hour cognitive exam to see what still worked.  When he got to the verbal memory part, he slowly listed 20 words in a row to see how many I could repeat to him.

I gave him back 3.

He then repeated the same 20 words, slowly.  I gave him back 4, not including any of the first 3.

He repeated those 20 words yet again.  I gave him another 4, I think maybe including a couple of the first 7, entirely on accident.

I got top marks for most of the test, and rock bottom for verbal memory/learning.  The phrase “in one ear and out the other” has a deep meaning for me now.  If you give me a phone number and don’t wait for me to write down each number, you might as well be giving me a cup of sugar by throwing it at me.

The lab results came back: the CSF from my spine had WAY more immune system activity than my blood serum did.  This was another big red flag. Combined with my optic neuritis and the lesions they found in my brain and spine, the doctors decided I had multiple sclerosis, despite having almost entirely no symptoms. They gave me a choice of 5 immunosuppressants to keep my immune system at bay and hopefully prevent any more symptoms from appearing.

I wasn’t eager to go on any immunosuppressants, so I set that choice aside and returned to the question of my next anti-epileptic drug. I was now allergic to roughly half of the options, so the next safest one on the list was Keppra, which came with the common side effect of “depression”. If you know me, you know I’ve got a history of vulnerability to depression. I didn’t like it, but the doc thought this was the best bet, so I set up a web app to collect and graph data on my mood and function so we’d have something objective. It’s hard to use your brain to to judge how your brain is being affected on a day-to-day basis. Good thing I did, too, as the depression came on hard and fast. Once I showed the doc the data after 10 miserable days, she took me off it and my brain chemicals flipped to “euphoric” for a day or two.

Instead, we switched me to Topamax (topiramate). This drug has a few good side-effects, including it’s an anti-depressant that actually works, and a bad one: brain fog. That aspect makes my day job that much harder, where trying to focus on a task feels like you’re simultaneously herding snakes: you can get it all done, but 10x slower and you’re absolutely spent by the end of the day. As my epilepsy medication options went, though, it’s still the cream of the crap. That just left the MS treatment to figure out.

The first immunosuppressant option was a daily self-injection.  After Dr. Ballshock-McUndercount, I was un-enthused by frequent needles.  There were daily pill options, but I chose an infusion, where I’d go in every 4 weeks and get hooked up to an IV for a few hours.  This particular option though, called Tysabri, was special: it doesn’t actually shut down your whole immune system. It leaves it entirely intact, simply preventing it from crossing the blood-brain barrier.  That means I got the Covid vaccine and booster and I’ll get all the follow-ups and they’ll work just the same for me as anyone else.  However, brain or spine infections like meningitis could easily kill me.  Those are super rare, of course, but so was DRESS syndrome — like “1 in 1000” to “1 in 10000” odds.

In fact, there’s one special virus that I have to worry about: the John Cunningham Virus. It’s estimated to infect 40-90% of humans, depending on the source, but somehow I don’t have it yet. If I did, I wouldn’t be allowed to take Tysabri at all.  Lucky Break #3.  Most of us get it as kids.  It’s generally innocuous, and often asymptomatic.  After you get it, it hangs out forever in your brain, among other places.  You’ll (almost certainly) never communicate it to anyone else, and it won’t make you sick again either.  That is, unless you’re on Tysabri.

If you’re on this drug, and you have the JC virus, there’s a small (but not tiny) chance you could get Progressive Multifocal Leukoencephalopathy (PML), a brain infection that often kills you in a few weeks or else leaves you profoundly disabled for life, like getting super-advanced MS over a matter of weeks.  Let’s just say that the risk of this is about 100 times higher than getting DRESS Syndrome.

Soooooooo I have to get checked for this virus every 6 months and avoid children for the rest of my life.  I don’t particularly like the little germ factories, so I’m fine with this (is that Lucky Break #4?).  If/when I go positive, they’ll take me off Tysabri and put me on one of the shittier immunosuppressants, and I’ll have zero immune system for the rest of my life. I’m extremely fortunate (Lucky Break #3) that somehow I avoided this virus for the last 40 years.  You see?  I told you it was a story about luck!

Except… it means I have to check in to the USA every 4 weeks.  The drug is carefully controlled, due to the risk of PML, and fantastically expensive.  I was surprised when the drug company offered me 100% financial aid coverage in combination with my insurance.

“Wait, how much does this cost per infusion, then?”
“Lemme check… $20,000.”

I quickly realized I couldn’t live the adventure travel life anymore.  The best I could do was an out-and-back over 3 or so weeks, and that would get expensive, fast.  I was stuck. While the pandemic had closed the door, the infusion had locked it.

While I was going through a box of items I’d sent home to myself during my travels, I found a card a shipmate gave me after we transited the Panama Canal. Of course I had no memory of it, so it was a complete surprise to see one of my favorite poems, Invictus, by William Ernest Henley, inside. As I read each line, I sank to the floor in tears. The words had not changed, but their meaning to me had, entirely. I decided to frame it and put it up next to my desk.  It reminds me to focus on the future.

Today, my memory recall isn’t what it used to be, and I find that forming new ones is a bit like building sand castles too close to the waterline.  It makes learning difficult – things don’t “stick” the way they used to.  It was like this most of the last decade, slowly getting worse every year.

I was a boiled frog.  I noticed it, but I didn’t recognize it.

I spent the year between finding this out and writing this post living in a very dark place, blaming myself for mistakes made, asking myself “what if”. But it was just part of the process.

Recently, I finally came to realize that if I had gone to the doctor at the beginning, if I had learned about these conditions, I probably would never have had any of these adventures. Remember Lucky Break #1? Where I convinced myself it was just a weird drinking glitch? That let me suffer enough damage to separate myself from my job and start traveling, and enabled everything that followed. For one thing, it’s pretty likely I would have never been a bosun’s mate on those ships if I’d known about the epilepsy. Professional crew I’ve sailed with have confirmed this. But the reality is that if I’d gone to a doctor, it’s very likely I would have never traveled at all, and that would have kept me from 10 times as many adventures as sailing, and meeting so many amazing friends all over the world.

I would have missed out on 6+ years of discovering the life I loved.

If I had to go back and do it all over again, with full knowledge of what it would cost me, I would make the same exact choice. And I’m finally 100% OK with that and everything that implies.

Now it’s all about what the future holds, and I’ve decided I’m going to travel again. And in fact, I already have, with a 2 week tour around the UK that will be the subject of a future blog post.

“What happened to the 4 week limit?” Rules are made to be broken! For example: the US isn’t the only country that prescribes Tysabri. The UK does as well, at least (and it’s 10x cheaper there). The UK is a much easier and cheaper place to stage 4 week adventure trips from than the US.  An awesome UK paramedic friend has even found me a UK neurologist willing to “second” my US prescription, so “all” I need is to arrange to get it paid for there outside the NHS. Or maybe I could decline treatment for a few months a year, or even altogether when I’m older!  I have options.  And that’s entirely discounting medical advances, too.

Basically, I’m not done writing blogs.

If you see me again, you might notice that I don’t seem to remember a lot of our anecdotes, our shared history. Hell, there’s a chance I might not even remember your name. Trust me, I feel awful about it. At this point, people in my life collectively remember more about my life than I do. And an unfortunate reality is that most of the memories that have stuck around are the bad ones. But I’m lucky enough to have kept a daily journal of my 6 years of solid travel, and I have tons of photos to go with them, and every time I meet a friend they inevitably reacquaint me with happy times that just temporarily slipped away, allowing me to enjoy them all over again for (almost) the first time. Who else gets to say that?

I’ll give Mr. Henley the last word.