What My Stroke Taught Me | Hacker News Reader

What My Stroke Taught Me

nautil.us

114 pointsdnetesn30 comments

This is a beautiful piece.

I was bedridden at one time and deathly ill. During that time, The Grim Reaper often sat and wordlessly conversed with me. One day, he dramatically departed. With that, I knew I would live.

It has never mattered to me if he was "real" or a hallucination, the product of fever, drugs and sickness. His departure marked an important turning point: The death watch was over.

My brain is different than it was before those months. My perceptions of the world and thought patterns were permanently altered. I am more visual or image oriented, less word oriented.

I find pieces like this particularly meaningful.

It's been really hard seeing my dad after he had a stroke. Someone who used to be so physically active, now seems so fragile when he walks. The hardest part for him is how drastically his life changed. One day he was working and had a career he enjoyed, the next day he would never be able to work again in that field in his former capacity (medicine). It has shown me how resilient people are, because even though there is a perceptible lag in his speech, he is still there as he always was.

How tragic. Does he work with a speech language pathologist? I understand they can help meaningfully improve communication abilities in stroke patients.

Depends on the stroke. Some people fully recover, some people are left with permanent deficits despite therapy, some die.

One thing i was always amazed by was how flexible the brain is when it comes to recovery. I saw stroke patience recover speech, although the neurons for it where partially gone on the x-rays.

Do they do brain x-rays? I thought that'd be an MRI.

They probably meant MRI, but yes, they do CT scans of brains, and this: https://en.m.wikipedia.org/wiki/Angiography

Oh yes - didn't even realize CT scans are using x-rays...I somehow associated the name with that kind of stuff they used to do 20+ years ago when you broke a bone.

My recent experiences were all CTs, MRIs & ultrasounds.

He goes to physical therapy during the week, because he had to pretty much relearn almost everything. The doctors told us, considering how bad the stroke was, it's amazing where he is at. A testament to my dad, I think the one part he enjoys is the improvement. He has this set of tasks he's been given to do each day, and he goes after them like it's a workout. Since he can't really do the things he once enjoyed (at least at the previous level of intensity), he finds new things to focus on. He was a big hiker and bike rider, and I know he misses all of that now.

"even though there is a perceptible lag in his speech, he is still there as he always was"

Wonderful to hear, given the possible spectrum of outcomes. May your father recover further.

Having a stroke is not a whole lot of fun.

There were two things. First, is the absolute helplessness and your forced infantilism. The bathroom is probably the most dangerous room in the house for you (you're not allowed anywhere close to the kitchen) and depending on your symptoms, you're not able to situate yourself on the toilet or wipe yourself properly. Having somebody else wipe your ass when you're an adult is not going to appear on the highlight reel of your life. Neither is shitting yourself because you couldn't get your pants off quickly enough before you had to go to the bathroom.

The second thing is the cost. The purported cost of a stroke is about 500k, and that's the negotiated cost when you have good medical insurance, and they pay for a private room and therapy. I don't want to think about what happens when you're indigent and forced to deal with Medicare. I don't know if you just get warehoused in a shared room and flipped a couple of times a day to prevent bedsores.

Guys, get that blood pressure checked regularly, and if it's high, do something about it.

All strokes are different. The author makes hers sound like the silencing of the default mode network [1]. That's something meditators strive for.

[1] https://en.wikipedia.org/wiki/Default_mode_network

I'm off to do some googling on this, but if you happen to know of any particularly good articles or anything else (keywords, etc) that might help I would appreciate it!

re: bathroom --- what about Japanese-style auto-clean, auto-dry toilets?

I took care of someone who had a stroke and even pulling up and pulling down pants to go to the bathroom was nearly impossible.

Maybe he was on the more severe end of the stroke spectrum I don't know.

There's also cheap retrofit bidets on the market ("Biffy" is one.) The Japanese Toto toilets, however, are great.

The way they're set up is not very useful. First, the ones I've used either have a wireless control panel mounted somewhere you have to flip down a little panel to use, or little controls attached to the seat, which require that you turn your body and operate the controls with one hand. Depending on how you're impaired, if the hand you need to control the toilet is not functioning, you're kind of hosed.

Second, if you have any mental impairment, are you really going to go through menus with small icons to control the temperature and pressure of a stream of water directed to your nether parts?

Finally, the auto-clean/auto-dry toilets still generally require one last wipe to clean up. Think about it this way, if you're baking a cake, and if you smear frosting on your arm, are you just going to rinse your arm with water and call it day, or are you going to rinse it and then wipe the area dry with a towel?

> you're kind of hosed.

That's the whole idea!

You are very fortunate that those are the two things. All strokes are different and many can fundamentally alter speech, vision, movement, comprehension, personality, the ability to swallow, you name it.

Checking blood pressure is good advice, but worth noting that strokes can happen to anyone in perfect health, for example AVMs and many aneurysms (like in this article).

> Guys, get that blood pressure checked regularly, and if it's high, do something about it.

heart diseases are silent killers. i had high blood pressure (my whole family has it + weight problems) for a long time and never realized.

after going to the doctor, getting diagnosed and treating it, my life is a lot better. go to a cardiologist and get checked even if you think you are 100%!

My father was living on his own (around 65 years old) and suffered through what we discovered was a combination of 8-9 mini-strokes. What's worse is that his doctor did not notice, and they went untreated for over a year. He's now living with someone that is taking care of him full time, but his speech/motor functions are permanently damaged, and as someone said below, the best description of his life is "forced infantilism."

He's now been diagnosed with Parkinson's as well, which I've read can be caused by strokes.

Two years ago I had an active/involved father that played golf 3 days/week. Now I hardly recognize him. It's traumatic.

While it may be difficult for you, if your father's perception of the situation is similar to that of the author's, maybe it's not so traumatic after all, in a big picture sense.

I've done a lot of meditation work over the years. I started with simple stillness and visualization exercises, and progressed to moving meditations. Eventually I started doing sophisticated chakra work and could manipulate emotion at will. I find it very easy to call up a state of profound mental calm if I ever want one, one came to me as I was reading the piece, like putting on an old glove.

I can see how it's easy for someone who spent much of their lives dealing with chatter could fetishize calm once they've gotten a taste of it, but like being pervasively, effusively happy / calm / cheerful all the time, (another thing I've done) it eventually gets old.

Chatter is how the mind works. Staying completely in the present all the time means you're just not exercising the part of your brain that learns. I can turn it off if I want to. But I don't. I liken it to being a dog.

Dogs, and other animals, are excessively present. They don't have intellectual thoughts because they are biologically incapable of them. They're incapable of even having awareness that intellectualism even exists.

Being aphasic is basically erasing a part of you that makes you human. Worse, you don't even have the awareness that you lost it. With our travails and struggles comes our humanity, whitewashing over our mental chatter or our emotions relegates you to a baser existence. You're "happier," but you haven't really evolved to be better in any way.

Yours is a point of view I've rarely heard. It's quite inspiring. I suppose I'm encouraged that you've reduced 'chatter' and its avoidance to something that can be managed.

I'd say it's nice to have a 'baseline' that you can operate off of. Life has never for me been so stressful and worrisome that I needed to regress back to a base point where I feel perfectly at ease with all outcomes, honestly more basic stuff like threat modeling at an intellectual level has been more than sufficient.

I'm not going to say that all my meditation has been useless, but there's definitely a diminishing point of returns there where you need increasing amounts of refinement before you can really distinguish differences. Stoicism is really "good enough" for most purposes.

It's like buying $500 whiskey when you can't even tell the difference between $100 whiskey and $200 whiskey, they both taste smooth. Meditation techniques take time and effort to perfect just like anything else, and eventually you start needing more time to move the needle. At some point you just want to get back to the world and accomplish things.

https://www.ted.com/talks/jill_bolte_taylor_s_powerful_strok...

I started taking an SSRI a few years ago. The sense of peace and calm that I spent a lot of time and energy trying to cultivate before is there all the time now, and with virtually no side effects.

Why would anybody keep their passport in a safety deposit box?

That was a really fascinating perspective, becoming so infantile and less of a constant conscious that cares about anything, yet emerging from that state over years and having the recollection of it and the comparisons to a more relatable form of humanity.

The comments on the article point out the differences between emotional vs intellectual intelligence.

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