The Electric Needle ALS Test
I spent a decade getting down with a mysterious sickness, before a self-help book helped pull me out.
This is another personal one, I’m afraid. Bear with me.
The longer I go on with this project, the more I realise I can’t continue without telling this story. It’s the foundation for much of my interest in self-improvement, sparked by reading two self-help (or self-help-adjacent) books that worked. Plus, the last newsletter seemed to resonate with people, and I’m grateful to everyone who commented, emailed or sent messages.
These stories — the one I told last week, and this sequel — are a lot. They’re self-indulgent in the literal sense. And I’ve never told them to anyone, except in bits. If it’s weird to read, trust me, it’s much weirder to write knowing you’ll read it.
It’s a few days after the seizure and I’m lying on my back having a tooth pulled out.
It has not been a fun Christmas break. The reality of a serious health scare wasn’t made any easier by quitting a 14+ a day coffee habit cold-turkey. The resulting three-day caffeine withdrawal headache was compounded by a toothache, which grew to a degree of agony I couldn’t ignore. I suffered through a Work and Income appointment to get on the sickness benefit, and they gave me a voucher for an extraction. My tooth would have been fixable with a root canal, but neither I, my family, or apparently the Government has enough money for that.
I lie back in the chair, staring at that uncomfortably hot light, as the dentist lunges and levers at my molar. Despite being decayed to the core, it isn’t going easily. I hear bits of my jaw crack and splinter as a brawny arm and a pair of forceps blur in and out of my vision.
“Very deep root on this one,” the dentist comments, unnecessarily.
The morning after, I wake up with sore jaw and a high fever. A doctor’s visit ensues. He thinks it might be a bacterial infection from the tooth, and prescribes antibiotics.
My mum comes by to check on me, sees how upset and run-down I am, and prescribes St. Johns Wort. She also suggests I stay at her place for a few days to recuperate. It’s a good idea. I’ve been Googling what might have caused my seizure while I wait for the slow gears of the health system to turn and give me the diagnostic MRI and EEG I need to rule out anything sinister, and it’s been freaking me out. So I raid the local video rental place for a mixture of new and favourite DVDs and set myself a goal to curl up and do not much. Originally, I’d intended to help my stepdad out with some house-painting but I find myself strangely unable to do anything. Whatever I try, I find myself dizzy and panicking, terrified that another seizure is coming on.
I set up a TV nest and start making my way through the stack of videos. Feeling like I am being looked after seems to be making a difference. Perhaps I’ll be okay. Perhaps I am getting better.
But as I watch Dr Strangelove I start feeling really weird.
I wait, heart pounding, trembling, waiting for the world to spin and the ground to lunge up and hit me.
But it doesn’t.
I turn the movie off, tell Mum I’m not feeling well, lie down on a mattress in the spare room.
The weirdness doesn’t subside. It gets worse.
I feel my whole body buzzing, like electricity coursing through every limb. Something deep in me seems to seethe and hiss.
There’s a sudden jumping sensation under my skin, in one of my legs.
What the fuck? I didn’t imagine that.
Then, quick as thought, there is another one. Different leg. A squirming, liquid twitch.
Then my arm.
Then my leg.
I lie there, fully conscious, paralyzed by horror, as the muscles under my skin writhe like I am a bag full of worms.
I should have listened to Safety Sam, I think.
When I get back to Dad’s place, to the backyard tent my brothers and I currently call home, I get on Google. The awful writhing sensation has lessened from its first abrupt intensity but it’s still going on. It’s like when you’re tired and the muscles under your eye twitch, but everywhere, in every limb, all at once.
The muscle twitches are called “fasciculations,” Google tells me. So I search for something like “fasciculation seizure symptoms.”
I still remember the shock of raw nausea I felt when I saw what fasciculations were a symptom of.
There aren’t really any good diseases, but among them, amyotrophic lateral sclerosis (ALS) is one of the least good ones. Also known as Lou Gehrig’s disease, ALS is one of the most awful things that can happen to a person. It robs victims of the ability to walk, move, speak, and breathe, usually in that order, while cruelly leaving the mind completely intact. Stephen Hawking was the most well-known ALS patient, and (I learn, as I frantically read page after page) he was almost unique in living for decades with the disease. Most people who contract it die within a few years.
There are other things it could be, of course. Like multiple sclerosis. Also awful, but I figured I’ll settle for that if I have to.
Well, if I was going to die of diaphragm paralysis or pneumonia while my mind remains trapped in a paralyzed body, I’d best live life to the full. You fucker, get up, come on.
I get a job at a local electronics retailer to save up money while I wait to find out if I’ve gotten into a.) a journalism degree and b.) a paid job at the Waikato University student magazine. If I get both, I’ll move back to Hamilton and become the next Tom Wolfe. If I don’t, well, Kerikeri and discounted electronics will do fine until I’ve saved enough money to travel overseas.
I’ve gone to see the doctor again, several times in fact, but they say the twitches are probably nothing to worry about. (Inconveniently, they seem to vanish when I needed to show them to anyone, only to start up again as soon as I left the doctor’s office.) The doctor says I’m suffering from anxiety and depression, and gives me some pills for it.
I take my first dose of those pills the night before I start at my new electronics jockey job. Instead of sleeping, I have something like a six-hour waking nightmare.
In the morning, Dad unzips the tent. I haven’t had a wink of sleep. I’m terrified another seizure is on the way. Twitches run hot under my skin.
“Do you need a lift in to work?”
“I can’t go,” I say. “I haven’t had any sleep. I feel terrible. I’m twitching all over. I’m really worried something bad will happen again.”
“You’ve got to go,” he says. “You’ll be fine.”
I get up. Despite spending the entire day feeling like I am underwater, I make it through. I even keep the job. I never take the pills again, though.
Now, I wonder — if I had kept up the meds, would the next ten years have been different?
My mum takes me to my medical appointments. First is an electroencephalogram, or EEG. After a night of intentional sleep deprivation, they’ll stick electrodes all over my skull, put me in a chair, and pulse strobe lights into my eyes to try and provoke a seizure. At least sleep deprivation isn’t hard to achieve. My childhood terror of not getting enough sleep has returned with reinforcements, and I’ve been making every excuse to get to bed before ten, but it isn’t helping. If anything, my sleep is getting worse. A lot of nights I’m not sure if I’m getting any at all.
The twitches thrill through my limbs as I lie on the chair. The technician seems bored. “Can’t you see that on the machine?” I ask.
“The muscle twitches.”
“No, this just reads your brainwaves,” the technician says.
They strobe me with buzzing pulses of bright light. It makes strange, intricate, geometric patterns in my eyes. I am frightened and ask if it’s okay to shut them. The technician says this won’t make a difference.
I didn’t have a seizure, but the twitches seem to be working their way deeper. Sometimes an enormous muscle, like my calf or quad, will leap, with an almost audible thump.
I know something is horribly wrong. How could it not be?
When you can’t sleep properly, life becomes a series of disconnected events. My memories of this time are like reflections in broken glass. Splinters and shards, with sharp, jagged edges.
Back at the doctor’s. “I can’t sleep.”
A prescription for sleeping pills.
My dad’s wife, my stepmother, is furious. The backyard tent I am staying in with my brothers isn’t distance enough for her. Six young adults are staying here: her two children, my brothers and sister, me. Now my dad’s kids are no longer welcome.
To my father, an ultimatum; us or her. Now.
My dad, in tears. I hug him, tell him it’s not his fault. “It’s OK, we’ll go.”
I move into a caravan on a friend’s property.
When people ask me what’s up I try the phrase kicked out of home on for size.
The twitches are worse and keep me awake at night.
I try not to take too many sleeping pills, as I know they are addictive, but sometimes at 3 AM I can’t help myself.
I need some sleep, I reasoned, or how will I function?
I gain entry to the journalism degree, and get the job at the student magazine. I leave the riveting world of electronics retail and move back to Hamilton. My dad, scraping the bottom of his financial barrel, buys me a bike as a gift, as my driving status is still in doubt.
I stay with some Christian family friends for a bit, before they politely suggest I find a flat. In fact, they find one for me. I find myself living with a Christian vegan man of about 40, his 20-ish-year-old Christian vegan fiancee, their teenage Christian vegan friend who is like a frightened mouse and spends every waking second with the other two, like they’re all married to each other.
They hate my guts.
I hole up with my computer. I play a lot of videogames.
Eventually, they kick me out for making beef-flavoured two minute noodles in a Christian vegan pot.
The neurologist is kind but bored. He has the air of a man who has much bigger fish to fry.
“It’s good news,” he says. “Your EEG and your MRI have come up fine.”
“Does that mean I don’t have epilepsy?” I ask.
“We don’t think you do,” he says. “You can go back to driving. Back to normal.”
I don’t feel normal. “What about the twitches? Don’t they mean anything? Couldn’t they be” — I hesitate, scared to say the word — “ALS?”
He frowned. “ALS doesn’t present with seizures,” he says, shortly. “The fasciculations are probably benign. Anxiety probably makes them worse. Try not to worry about them.”
Still trying to live life to the full. A friend with an entrepreneurial flair has a great idea. “Hey, imagine outdoor equipment advertising flyers, but with articles alongside! I think this is honestly my best idea yet,” he says, in a series of text messages.
He’s invented the magazine. But it’s a good idea and I reckon there’s a gap in the market. What spare time I have from my day job at the student rag and my journalism course goes to the new magazine, which we call Intrepid.
My new flatmates are as chill as my old ones were uptight. They smoke up and watch Pink Floyd’s Dark Side Of The Moon. I now live in a converted bathroom with tin cans nailed over the floor to stop rats. Despite this, slugs still find a way inside. They crawl up the walls and eat my posters.
These flatmates love a party. They throw one about once a fortnight.
Journalism school. Teeline shorthand classes are at 8 AM. Core classes usually start later.
I don’t often make it to Teeline.
I’m at my computer, slugging through a news writing assignment, when it happens. My head buzzes, like my brain has licked a nine-volt battery. I look around frantically. Still conscious. No lost time. Microsoft Word cursor right where it was.
I get up, bolt to the bathroom. Sit on the toilet, pants on, waiting. Would something happen, like it had happened before?
A muscle twitches under my jaw.
I go back to class. Instead of the assignment, I Google “feeling like electric shock in brain.”
The results, as always, are dismaying.
My flatmates and I have moved into a new house, where they have discovered the wonderful world of pure methamphetamine. It’s increased their party frequency to about three times a week. The night before an exam, I am trying to sleep — failing, as usual — when there’s a crash of doors opening and screeches of laughter from downstairs. Another fucking party.
I lose it. Shirtless, I thunder downstairs and, snarling and swearing in a fury, scream about a dozen people out of the house.
I go back to bed, the place quiet now, but my arms and legs loud with the maddening, ceaseless twitches.
My friend has moved mountains and our magazine has real advertisers and revenue and we’re actually getting some good high-profile interviews. And I’m failing at it. Every time I sit down to write I start feeling sick.
Zap. Zap. Zap.
Twitch. Twitch. Twitch.
My flatmates are getting worse so I start sleeping at the office.
One day my friend walks in on me dozing on a bed made of couch cushions.
“You’ve got to stop doing this, man,” he says, shaking his head.
He takes over as editor. The magazine lasts at least another year.
Despite comprehensively failing Teeline shorthand, I manage to land an internship at a local newspaper. Each day the editor picks me up at 5 AM.
I drive all over the countryside, sniffing out stories about stone production at a local quarry, or a furore over ratepayer money being used for a local art gallery. Despite everything, it’s interesting. But the lack of sleep is wrecking me.
I write several stories a day, my brain buzzing insistently. It’s gone from a few times a week to once or more every hour.
I can’t get a job in journalism. I tell people it’s just a bad time in the industry, and it is, but the fact is I don’t try hard enough. The idea of irregular hours, lack of sleep, and and stress horrifies me.
I apply for lots of other jobs, but nothing works. So I turn my CV into a comic book as a stunt, and this — finally — gets me some calls.
I land a job doing copywriting for a local digital agency.
Things aren’t going well.
The job has turned into a kind of hell. My co-workers are quitting. With the business under pressure to account for every dollar, the job of time-keeping has been delegated to an anal-retentive programmer in the Auckland office who has embraced his new role with enthusiasm. He’s coded a time-sheet program from scratch that we all have to use.
I am now required to time-sheet my toilet breaks.
But I’m sick as fuck. I’m calling in ill constantly. Brain zaps are coming ever few minutes. Odd little black or blue blips, like transient asterisks, sometimes appear in my vision. I’m frequently overcome by an urge to sleep so strong I can’t resist it. There’s an armchair in a lounge set aside for client meetings and I sink into it and pass out for twenty minutes or more. One day, the horrible programmer from Auckland calls to harangue me about a time-sheet. I try to argue with him and instead of words, there’s a torrent of gibberish.
I slump across the desk.
Another doctor. My girlfriend comes with me as support.
“I’ll be honest: I am worried,” the doctor says. “I want you to go back to the specialist for more tests.”
My boss tells me me to take a leave of absence. I take a few weeks off and feel a bit better. I ask if I can come back to work part-time.
For this, I am fired.
The new EEG results are marginal enough that the neurologist says I should start on medication.
It makes me feel queasy and tired. I spend a lot of time in bed, sometimes entire days. My hair starts falling out, ahead of schedule. It’s one of the known side effects.
I have to bike everywhere. I start keeping a tally of all the weird shit drivers do to people on bikes. Drivers swear at me, swerve at me. On one memorable occasion someone throws lemons.
When we go further afield, my girlfriend has to drive us.
I’ve bused up to Auckland to visit the Armageddon Expo with a mate and, of course, I can’t sleep. This always happens. Whenever there’s an event on, I find myself awake all night.
Desperate, in the early morning hours, I search online. I find a positive review for a self-help book called The Effortless Sleep Method by Sasha Stephens. With nothing to lose but more sleep, I buy the book and read it on my phone.
Despite coming across as a bit woo for my jaded tastes — the book contains several credulous references to ghosts, for some reason — the central premise seems sound; the reason I’m not sleeping is because I’m worried about not sleeping. If I stop worrying about not sleeping, I’ll sleep.
A paradox. An obvious one, too. But for some reason the book comforts me. Perhaps it’s just the right kind of boring. After reading a few chapters, I have the best sleep I’ve had in years.
And once I’m home again, and I start following the advice in the book, it happens again. And again.
New jobs, new doctors, another MRI, new EEGs. I ride my bike to a new specialist appointment.
“We don’t think you’ve got epilepsy,” says the new neurologist. The EEG is a sensitive machine, and it turns out the one that gave me my marginal reading had been over-reporting the electrical activity in my head.
I can drive again. I celebrate by riding my bike to a skatepark and doing some mildly dangerous shit, stuff I haven’t dared to do for years.
But: the brain zaps, the muscle twitches, the visual disturbances, the dizzy spells. They never stop.
After trying and failing to get by as a freelance journalist, I’m about ready to give up on writing. I apply for a marketing job in Auckland and, to my massive surprise, I get an offer, on my birthday.
On the same day, the local newspaper calls and offers me a job as a feature writer. A high profile, travel, perks, more money than I’ve ever been offered in my life. My dream job.
I take the marketing job. My wife and I move to Auckland.
I’m much better than I was. Sleep isn’t the demon it used to be. But the twitches and brain zaps are still there and from time to time they flare up and drive me mad.
I get a new doctor who’s neither dismissive nor panicky. He’s calm and measured and he listens. His name is Sam.
He says: let’s get the tests done, then consider what else it might be.
He books me with a neurologist to do a deeply uncomfortable test. Here is how it works: the doctor inserts needles under your skin, all over your body, which are wired to a machine. The machine records the reactions of your muscles. Elsewhere, electrodes are placed to shock your muscles into action.
This is called electromyography, but I think of it as the Electric Needle ALS Test.
It is painful, but interesting. The machine buzzes and pips when I move my muscles, or when a twitch makes them jump.
The results come quickly and they are conclusive. Of course, I don’t have ALS, or anything like it.
In fact, I’m fine.
So what the fuck is going on?
The twitches are real. I’ve even managed to catch them on video a few times, as if to prove to myself that I’m not imagining them. But if there’s no underlying condition, what could be causing them?
One night, an old Simpsons episode gives me a clue.
“You see, class, my Lyme disease turned out to be psy-cho-somatic,” explains Miss Hoover to her class.
“Does that mean you’re crazy?” asks a child.
“No, that means she was faking it!” says another.
“No, actually, it was a little of both,” says Miss Hoover.
I laugh at the episode, like I’ve done many times before. It’s a brilliant gag. But now I wonder if there might be something more to it.
One day, reading a news site, a review catches my eye. It is for a book called It’s All In Your Head by a neurologist called Suzanne O'Sullivan.
The book is fascinating, and I read it in a couple of sittings. It’s a series of case histories of psychosomatic illness, all of which are harrowing, intense, and remarkable. It revealed something I’d never known about psychosomatic illness; it happens not because someone is faking for attention, but because some part of the person’s psyche — often something they are not consciously aware of — is literally making them sick. It is mental illness made physical. The more intense effects can include blindness, fatigue, weakness, pins and needles, numbness. Even (I realise with a shock and a brief feeling of dizziness) seizures. Psychosomatic illness, it turns out, is real. What’s more, it affects huge swathes of people, and there is a persistent lack of understanding about it from both doctors and patients. Patients often react in fury at the suggestion that their illness might be, as the title of the book puts it, all in their head. And yet, when all other avenues are exhausted, it often is.
More than ten years after the seizure, after the twitches started their maddening, endless race around my limbs, I wonder: could this be what is happening to me?
I call my doctor, Sam, and he refers me to a different kind of specialist.
It’s more than five years later, five years since that referral, after I first picked up the phone in a break room at work and (hands shaking, twitches buzzing from head to toe) called a therapist — a former GP who now specialised in what are sometimes called mind-body illnesses. Five years of therapy have helped tremendously. I now know what was happening to me, and whose fault it was.
It was Safety Sam all along.
When it comes to the workings of the mind, we almost always find ourselves dealing in metaphors. Stories, it turns out, can both create and unpack trauma. So while I don’t think this story is literally true (I don’t think actual cartoon kids with pith helmets are living in my head) the metaphor works for me, and it gels well enough with much of what we know about the mind.
My story is that when my world fell apart with the loss of my faith and health all at once, an old part of my mind — a member of a kind of internal committee — tried to take charge. If you’ve seen the Pixar film Inside Out, you’ll know what I’m talking about.1
Our brains sort of work in layers, each layer coming online as we grow and get older. When I read Safety Sam and his comic-strip stories about the need for sleep as a child, it sunk in deep. That obsessive worry became part of me, and my ideas about health, safety, and sleep were frozen in time.
Now that part of me was awake and active, without my conscious mind having the slightest idea. It was like a little child lost in a mall, with all the tumultuous business and confusion of adult life going on around it. Despite being confused, and frightened, this brave kid knew he had a job to do: make me look after myself. Cut off from the higher levels of the brain that are capable of executive function and reflective thought, Safety Sam did the only thing he knew how.
He got into the control room and started mashing the keyboards.
Down with the sickness
I’ve been writing for a few hours now and I need to wrap this up from tiredness as much as anything. If you got this far, thanks again for sticking around. Perhaps you’d enjoy some smooth jazz tunes as a chaser?
It’s my hope that anyone who has suffered the extremely real and often dramatically delibitating effects of psychosomatic illness will find a bit of help here, because it’s still not something that’s openly talked about. But it’s very common. In fact, mind-body interactions are everyday stuff. Bodily reactions like blushing2 and breaking into a panicky sweat happen all the time, yet they're entirely based on things in your head. Brains and bodies are not seperate in the way that we tend to believe, and I’m happy to do what I can to lift the stigma.3
Thanks for reading. This newsletter is free, so if you liked it, please share it with someone who you think might get something useful out of it.
Any questions, just hit me up in the comments. I’ll try and answer all I can.
If you haven’t seen it, watch it. With caution. It’s like getting ten years of therapy in a single hit. It’s also very funny.
Perhaps from reading a cringeworthy, oversharing story in an online newsletter.
All that said, if you have symptoms that are bothering you, please don’t automatically assume they’re all in your head! I am not a doctor, so talk to someone who is.