The Devastating Decline of a Brilliant Young Coder

April 15, 2020 3:07 PM

"It is the most common form of dementia. Still, as a man in his thirties, Lee was unusually young to be afflicted." Lee Holloway cofounded Cloudflare but is now almost completely lost to frontotemporal dementia. Single-link Wired feature by Sandra Upson.
posted by secretseasons (24 comments total)

Oh god, that was a hard read. A nightmare.
posted by lazaruslong at 3:37 PM on April 15, 2020 [10 favorites]

Dear god.
posted by Homo neanderthalensis at 3:41 PM on April 15, 2020 [8 favorites]

Through a lot of this story it was hard for me to distinguish between what was pathological and what is unfortunately socially normalized sexist behavior (particularly among young men in tech). Example below:

He and Alexandra now had an infant son. During the first few months of the baby's life, Lee and Alexandra still made time to play videogames together. Alexandra remembers cracking up when Lee co-opted a nursing pillow to support his neck while he sat at his computer. Several of his old friends came over once a week to play the board game version of Game of Thrones or the multiplayer videogame Team Fortress 2. Alexandra focused on childcare, but she made sure the players had food. “I was doing it for him,” she says.
posted by splitpeasoup at 3:42 PM on April 15, 2020 [14 favorites]

Hard to read, but for me compassionate and truthful accounts of slow onset dementia are valuable, because they help to reinforce my personal experience with close family members as a shared experience. Thanks for putting this up for people to read.

Pre-emptive request that may be unnecessary - please refrain from obituary style "." posts for those in decline but still alive. This man is still present in some way, and we can mourn when appropriate.
posted by q*ben at 3:42 PM on April 15, 2020 [9 favorites]

JFC.

Fuck this world and biology's blind cruelty. As the article so wryly put it "Most FTD patients aren't so fortunate, if you can call it that, to wind down their lives on a personalized estate with a staff dedicated to keeping them safe and calm. "

Whatever your views are on loss of autonomy, pain and end-of-life decisions, get your advance directive sorted and share the information with your doctor and loved ones.
posted by lalochezia at 4:18 PM on April 15, 2020 [5 favorites]

In January 2019, Kristin was driving in a grocery store parking lot when her phone rang. She glimpsed the screen and froze. Lee was calling. There on the screen was his face, an old photo from when they had just started dating. She hadn't seen the photo in almost two years—it had been that long since he had called her.

She answered, and the words tumbled out of her. “Baby, I love you so much, I miss you,” she cried. “Are you OK? Do you need anything?” He didn't say anything, but she could hear his breathing on the other end.

well shit there goes my not crying today streak, goddamn
posted by taquito sunrise at 4:25 PM on April 15, 2020 [5 favorites]

This hits close to home for me too. It was a compulsive terrible read for me.

The juxtaposition with the IPO, the decline of a genius, the artsy broken up photos, the final "I love you"... it felt sensationalized and the manipulation pushed me away but I "had" to read to the end.

But I guess the balance of capitalizing on someone's tragedies, and making the public aware is something that journalism has to deal with. I hope it makes people more aware and compassionate of degenerative brain disease.
posted by haemanu at 4:36 PM on April 15, 2020 [4 favorites]

my mother passed away from FTD.

It's awful -
posted by djseafood at 4:52 PM on April 15, 2020 [10 favorites]

> “We met at Cloudflare. We got engaged in Rome. We got married in Maui, Hawaii.”
:[
posted by Ogre Lawless at 5:06 PM on April 15, 2020 [4 favorites]

The Cloudflare IPO in September raised $525 million. Lee, as one of the founders, suddenly became a whole lot richer. With his financial future now secure, Kristin set in motion the plan for his long-term care.

It isn't that often that someone who needs the money gets it AND has someone who loves them to use it appropriately. It seems like the only way to be properly looked after if you need it is to have already been a computer genius.
posted by bleep at 5:37 PM on April 15, 2020 [8 favorites]

my mother passed away from FTD.

It's awful -

Can confirm, my father did too. He had the aphasia version, so it affected his speech and not his behavior, for which I suppose I am thankful. As the one doctor in the story said, it’s not the dementia that kills, it’s the injury or illness that result. In my dad’s case, his inability to swallow easily caused him to choke while alone one day, and he never regained consciousness.

WBUR ran a nice (and sad) story few years ago about my sister’s experience with my dad and the voicemails he would leave us all every day.
posted by schoolgirl report at 6:23 PM on April 15, 2020 [20 favorites]

"In the 17th century, John Locke pinned selfhood on memory", "someone is “himself” because countless mental artifacts stay firm from one day to the next, anchoring that person's character over time."

Oh look, this horrifying garbage again.

"We met at Cloudflare. We got engaged in Rome. We got married in Maui, Hawaii.”

And

"when Lee saw the two of them arrive, “he always ran to his bedroom and grabbed his suitcase.” He would say, “I want to go back to San Francisco.”"

And

"He'd search YouTube for “Cloudflare,” “Kristin Holloway,” or his favorite bands and watch snippets of their music videos."

And "Some months ago, Lee sent Kristin a series of text messages. In them were photos she'd shared with him earlier: she and their son on Halloween, a trip to the park, Christmastime. At the end, he'd typed the words: “the love.”"

He's a person! He is himself! His disease means that he is losing the ability to process and interact with the world he lives in, not that he's becoming less of a human being. Those are not the same things!

To start out the article with ancient ablist blathering and then fill it up with examples of a person trying desperately to hold onto what he loves while his body betrays him is vile.
posted by Ahniya at 7:55 PM on April 15, 2020 [12 favorites]

To find this "vile" rather than a terrifying story of the horrors of dementia seems rather an axe-grinding take. As someone with a family history, and as someone getting older and older every day, I just can't see this as "vile".
posted by Windopaene at 10:21 PM on April 15, 2020 [30 favorites]

I think the author was confused about how to frame the article, the frame they chose de-humanizes the person being written about, and those issues combined felt like a slap in the face that I was not expecting from something linked on Mefi. YMMV.
posted by Ahniya at 10:51 PM on April 15, 2020 [1 favorite]

One of my mothers had this. We watched her mind transform and break down. Eventually, she lost her ability to speak and then to move. But her body maintained all its vital functions and she lived for 16 years after diagnosis. I was 23 when it all started, 25 when her needs were too great for me to care for her at home, and 38 when I buried her. It was a long nightmare. I can’t read the article but I couldn’t not read the post.
posted by Salamandrous at 11:00 PM on April 15, 2020 [12 favorites]

He's a person! He is himself! His disease means that he is losing the ability to process and interact with the world he lives in, not that he's becoming less of a human being. Those are not the same things!


FTD is not one of those diseases that traps someone in their body. It's a complete erosion of your mind. At some point there will be no more "him".
posted by benzenedream at 11:31 PM on April 15, 2020 [23 favorites]

Having had the unfortunate experience of burying several family members thanks to the complications of several different degenerative diseases, seen close friends afflicted with schizophrenia, other dissociative disorders, and personality-altering TBIs and as someone whose experience of aging has primarily revolved around memory, this article hit way too close to home.

It's one of those things that is likely to change your entire conception of individuality and what makes a person that person rather than some other person. It can be scary and traumatic for all involved, even when the disease doesn't manifest as increasingly frequent bouts of spittle-flecked rage, as it all too often has in my experience.
posted by wierdo at 12:37 AM on April 16, 2020 [4 favorites]

Lots of biographical reading before you get to the part about his illness. He had heart surgery and never recovered, which may have apparently caused the progression of a degenerative brain disease. It was remarkable to me how similar some of his early symptoms were to other kinds of mental illness. I'm not drawing any conclusions necessarily, but the fact that the symptoms of a major depression and the symptoms of your brain dying are initially pretty similar, that's alarming, or possibly insightful if I knew more about these things.

I feel a little weird commenting on the details of this guy's extremely personal experience with a disease, while he's still here and alive. I guess his family must have been okay being interviewed and everything, but still. If ever anything horrible happens to me, I hope I'm not famous enough for someone to write an article about it. and I would really really hope that there were no details about intimate personal moments between me and my caretakers, or the specific ways in which i can no longer function as a person.
posted by mammal at 1:09 AM on April 16, 2020 [5 favorites]

This hits terribly close to home - my father's unmanaged bipolar/CPTSD combined with some stresses degenerated into something very much like this just under a year ago. Except it went on top of hypomanic streaks and so much anger. It's like he lost his ability to care about everyone but the pets, he's convinced the entire family is plotting against him, and when we get in contact with him he keeps declaring that it's every man for himself now (which included abandoning the previously diligent care of his housebound nearly-nonagenarian mother). I had issues with him before, but I knew that while he was a self-absorbed git, I could count on him to help me, walk me home at night, call me from shops when he spotted something I might need. It physically hurts to talk to him now, because this is no longer the dad who taught me to shoot hoops and rollerskate.

In his case, it's not loss of expression - it's a distinct loss/change of personality into a complete stranger.
posted by I claim sanctuary at 7:04 AM on April 16, 2020 [4 favorites]

so so sad, and irreconcilable, really ..at the end of the day watching people become not themselves is just something one can never make sense of and the witnessing of it ..you can't really shake it, ever. I'm so sorry for your ambiguous loss and what you've gone through, mefites that commented above, Lee's family, et al..

The part for me that was of most interest was the open chest surgery that seemed to be a turning point. I have a close relative who has had similar symptoms (to those Lee experienced immediately following the surgery) and am completely floored by the way this possible outcome (not full on FTD, necessarily, but what's often called "post perfusion syndrome" or colloquially, "pump head") is not discussed by surgeons prior to surgery and possible risk factors for it are not assessed in the run up to surgery, while all sorts of other risk factors are examined. I imagine in their minds they view the surgeries as non-elective, but in fact in my loved one's case there was a closed-chest option and so our task was to weigh variables and decide which procedure was best. This was a variable I considered, a bit, but not one that a single medical professional explicitly told us to weigh. I try to focus on ways it could be worse, and isn't.. the person I knew/know is not the same as the day before the surgery and never will be.. I'm thankful that she is sometimes more herself, that if things are deteriorating still, it's not rapid, but .. there aren't many other witnesses in her life who see this, and I see it and it's ..a lot to look at.

I'll add - if anyone needs someone to commiserate with about this sort of thing, feel free to memail me. It is so difficult and hard to witness alone.
posted by elgee at 8:54 AM on April 16, 2020 [9 favorites]

Re: the heart surgery - "pumphead"after open heart surgery is well established if not we'll understood. My assumption is the heart treatment caused a dip in cognition which exposed the underlying FTD slide. He then recovered from the heart surgery enough to maintain relationships until the FTD slide left him in the same state.
posted by benzenedream at 10:09 AM on April 16, 2020 [2 favorites]

I guess his family must have been okay being interviewed and everything, but still. If ever anything horrible happens to me, I hope I'm not famous enough for someone to write an article about it. and I would really really hope that there were no details about intimate personal moments between me and my caretakers, or the specific ways in which i can no longer function as a person.

I get that. On the other hand, the more information and stories people have about this kind of thing, the more they know they're not alone and may find more ways to cope.

My father suffered vascular dementia and memory loss, died in January this year after about 2.5 years of decline. It was brutal, particularly for his wife who provided care for him until she couldn't anymore and he moved into a memory care facility. She passed away before he did, but I don't think she ever felt like she did enough (she did) or knew how many other people went through similar trauma and needed to admit that that kind of long-term care is too much for a spouse.

All that to say: Should I face a similar fate, please feel free to share whatever details that might help others face this. I'll certainly be beyond caring at that point, but even if I could, if doing so would comfort even one person whose loved one is being lost to dementia, it would be worth it to me.

As others have said, I have had much time to ponder what my father's disease says about the construction of self and what makes me "me" and what's just things my body does.
posted by jzb at 10:40 AM on April 16, 2020 [8 favorites]

His disease means that he is losing the ability to process and interact with the world he lives in, not that he's becoming less of a human being.

The framing isn't that he is becoming non-human, it's a question of WHICH person he is after so much change. It is perfectly valid to acknowledge that a person 30 years ago may not be the same person they are today - that is the concept of change. These diseases accelerate that change in often tragic and disastrous fashion. That doesn't mean that the sufferers are no longer 'people', and nothing in this article implies that.
posted by FatherDagon at 10:47 AM on April 16, 2020 [6 favorites]

All that to say: Should I face a similar fate, please feel free to share whatever details that might help others face this. I'll certainly be beyond caring at that point, but even if I could, if doing so would comfort even one person whose loved one is being lost to dementia, it would be worth it to me.

Yeah, this.
posted by uberchet at 12:47 PM on April 16, 2020 [1 favorite]