This must be what it feels like to be buried alive.
That’s what Kate Allatt thought to herself after she awoke from her coma locked in a completely paralyzed body. She was living an Edgar Allen Poe entombment nightmare without even the ability to scream.
After my awakening — when my mom told me that I had been in a coma for six weeks and had nearly died — the first word I tried to say (but couldn’t because I had a tracheostomy) was, “Seriously?” Though I was frustrated that I had to mouth words … and put up with all the wrong guesses, that annoyance was but a dream to the frozen from head to toe, 39-year-old British mum.
While my mom was there to witness my awakening, no one realized Kate was conscious for three terrifying and lonely weeks. Kate’s husband Mark, doctors, and nurses spoke over her as if she weren’t even there. She thought that was rude considering she could hear every word they said.
Hello, I’m right here!
After a doctor violated standard stroke protocol by dismissing Kate’s “worst ever” headache as a simple migraine, she suffered a massive brainstem stroke. When strokes occur in the brainstem, they can leave patients in a uniquely nightmarish, locked-in state. They’re totally aware, yet without any means to communicate that they are conscious. Typically, the only muscles they can control are their eyes and/or eyelids.
While Kate and I both experienced forms of covert cognition, there’s a world of difference between my vegetative partial awareness and locked-in syndrome. Though much of what was going on around me leaked into my coma-dream, reality simply entered the mental mix, as I incorporated it into my fantasy realm. People who are locked in are as conscious as you or I (except in the morning, in which case they would run mental circles around me).
For three weeks, Kate emotions alternated between fear that her plug would be pulled and wishing that she would die. The latter emotion never lasted long, though, because her maternal instincts were too strong. How could she wish to leave her three children behind?
Kate’s best friend finally sensed that her reactions were too closely synchronized to what was being said at her bedside to be coincidental. And Mark confirmed it when he asked:
Kate can you understand what I’m saying? Blink twice if you can.
She blinked twice. Mark broke out in a huge, goofy grin and ran to get a nurse.
Kate’s tight-knit — and very supportive — group of friends put together an alphabet board so she could blink out simple requests. The effort quickly exhausted her, but Kate has an exceptional inner drive.
Allatt wasn’t able to speak for months. Since her doctors were certain that she would never walk or speak again, Kate had never been given speech therapy.
There are many convergences in our recovery experiences, but almost as many mirror opposites. Indeed, in Kate’s memoir Running Free, she says,
For me running and activity were more important than speech.
That’s why she chose to have a “trachi” — as medical personnel call a tracheostomy tube in the UK — (it’s trach in the US) surgically inserted instead of the extremely uncomfortable endotracheal tube that had been jammed down her throat. (I can personally attest to the choking discomfort and constant drooling she suffered.)
Apparently, there’s a risk of voice damage from the tracheostomy. I wouldn’t have known because I didn’t have a choice in the decision when mine was put in.
At any rate, I would’ve made the opposite trade-off, had it been possible. Hell, even now I’m experiencing a rough, scratchy voice due to my latest, if prosaic, diagnosis: gastric reflux disease. I’m supposed to avoid talking as much as possible. At least, that’s the theory.
In practice, not so much.
After Allatt followed me on Twitter, I turned around and researched her story. Indeed, as I read Running Free — which is surprisingly funny and well worth checking out — it struck me that there were many such instances in our experiences were mirror opposites of each other’s.
Or perhaps I’m simply Bizarro Kate Allatt.
Before her stroke, Kate was a hyperfit runner intensively training for a charity climb up Mount Kilimanjaro’s most difficult face to celebrate her 40th birthday. Instead, she wound up surmounting an even steeper climb.
Though overtraining may have been what triggered her brainstem stroke, Kate believes that her fitness is the main reason why she recovered so much better than most patients with locked-in syndrome. That may well be true, as far as it goes.
But then how to account for my extraordinary — and very unlikely — recovery? I was a slug who never exercised, even though I knew I could be stronger if I did. (After my lungs were damaged when I was 11, I became extremely deconditioned.)
We both far exceeded the odds in our recoveries, a fraction of the top one percent. Yet in my case, I was about as far from a peak physical specimen as possible.
Yes, Kate wouldn’t have gotten nearly as far as has if she hadn’t pushed herself as hard as she did. Absolutely. [Usually, locked-in patients regain at most a slight amount of movement and remain mute for the rest of their lives.] But there is an X-factor beyond anyone’s control.
In the end, you have to admit that there’s an element of dumb luck involved.
One Neat Trick for Locked-In Syndrome and Persistent Vegetative State Recovery
Kate and I do, however, share a personality trait. She credits her “bloodymindedness.” Being a Yank, I would phrase it as my stubbornness and determination. But whatever you call it, these are simply forms of what psychologists call resilience. It’s the difference between people who are crushed by far less than Kate and I went through and those who say, “Don’t tell me I’ll never be able to do that!”
I was never told that, but for Kate, her recovery was a constant fight to push against barriers placed by doctors and therapists who expected her to be dependant the rest of her life.
As she put it in her TEDx talk, referring to the early weeks of her recovery:
Their plans for me were simply written off and sent to a nursing home, dribbling in a corner somewhere in a wheelchair.
At no point in Running Free does Kate wallow in self-pity. Even better for us secularists, she never mentions God. At all.
Indeed, though I don’t think Allatt is an atheist, she more than once makes a point of saying that the only time the family attended church was for the Christmas festivities, a Dore village tradition. And you’ll be glad to know that Kate, too, refuses to call her recovery a miracle.
As Kate relates in her memoir, after she walked, unaided, into the office of the hospital’s consultant neurologist for her first check-up after her return home, this tense exchange ensued:
You are a miracle! You must have had divine intervention, he said.
It’s called bloody hard work, I told him. It annoyed me that he was devaluing all the hard effort I had put in to reach the point I had.
Tell it, sister!
Our remarkable recoveries — which neither of us attribute to God — have driven us both to activism for the covertly aware. For Kate, however, that has taken a typically more active route.
I’ve been passively writing about my experience, raising awareness about covert awareness. Meanwhile, Kate started a charity to lobby and inform about strokes in people 40 and under. After all, if that doctor hadn’t dismissed her headache because she was “too young to have stroke,” she might have avoided locked-in syndrome entirely.
But more personally, she’s been working as a mentor and cheering section for locked-in patients. And in another convergence, Allatt has been expressing her stroke and healthcare activism by writing for Huffington Post UK and The Guardian.
Yet, where our activism truly merges is a mutual interest in Dr. Adrian Owen‘s portable, covert awareness-detecting, EEG machine. Potentially, it could not only be used for cognition testing, but also as a means of communication for the locked-in.
If or when the device enters general use, it will usher in a revolution for the twenty percent of consciousness disorder patients who are secretly “in there.” And in the process, it will unlock the world of the locked-in.
Previous Posts in This Covert Awareness Series:
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