Cloudflare's Brilliant Co-founder Lee Holloway Battles FrontoTemporal Degeneration (FTD)

One thing remains constant: "the love."

Lee Holloway coded cybersecurity firm Cloudflare into being. His wife, Kristin Holloway, witnessed his devastating decline from FrontoTemporal Degeneration (FTD), and made the necessary interventions to save his life. She now sits of the board of the Association for FrontoTemporal Degeneration (AFTD) to bring help, hope and support to those impacted by FTD.

FTD is the most common dementia for people under 60.

It brings progressive changes in behavior, personality, language, and/or movement. Mutations of the C9orf72 gene is the most common gene causing hereditary FTD, ALS and ALS with FTD. The C9orf72 gene mutation produces an expansion of an area of the gene consisting of six nucleotides, called a hexanucleotide repeat of GGGGCC. Carriers of this gene expansion can have hundreds to thousands of repeats of the hexanucleotide compared to 30 or less in someone without C9orf72-related ALS or FTD. A small number of rare genes have been shown to have a role in inherited ALS with frontotemporal degeneration. These are VCP, SQSTMI, UBQLN2 and CHMP2B.

Unlike ALS, which gained high public awareness through the viral #ALSIceBucketChallenge on social media back in 2014 and raised USD220 million globally, leading to the discovery of a new gene which contributes to ALS, FTD is still relatively unknown and very difficult to diagnose. Today, there are no disease-modifying treatments, and there is no way to prevent or cure FTD. On average, even receiving a diagnosis takes 3.6 years.

Lee’s life story is captured by Sandra Upson in WIRED:

In Cloudflare's early years, Lee Holloway had been the resident genius, the guy who could focus for hours, code pouring from his fingertips while death metal blasted in his headphones. He was the master architect whose vision had guided what began as a literal sketch on a napkin into a tech giant with some 1,200 employees and 83,000 paying customers. He laid the groundwork for a system that now handles more than 10 percent of all internet requests and blocks billions of cyberthreats per day. Much of the architecture he dreamed up is still in place.

Upson recounts Lee’s childhood years growing up in Silicon Valley and having a father who worked in Apple exposed Lee to the latest technologies of his time, and plenty of videogames:

As a gamer, [Lee] was legendary among his friends for being able to read a complex situation, rapidly adjust strategies, and win match after match. And it wasn't just videogames. His childhood friend Justin Powell remembers Lee strolling into a middle school chess club tournament cold. He wasn't a member of the club, but he won the tournament anyway. 

What defines “the self”? Upson delves into the epistemology of the self here:

In the 17th century, John Locke pinned selfhood on memory, using recollections as the thread connecting a person's past with their present. … Memory, after all, is how most of us register our continued existence. But memory is unreliable. Writing in the 1970s, renowned philosopher Derek Parfit recast Locke's idea to argue that personhood emerges from a more complex view of psychological connectedness across time. He suggested that a host of mental phenomena—memories, intentions, beliefs, and so on—forge chains that bind us to our past selves. A person today has many of the same psychological states as that person a day ago. Yesterday's human enjoys similar overlap with an individual of two days prior. Each memory or belief is a chain that stretches back through time, holding a person together in the face of inevitable flux.

[S]omeone is “himself” because countless mental artifacts stay firm from one day to the next, anchoring that person's character over time. It's a less crisp definition than the old idea of a soul, offering no firm threshold where selfhood breaks down. It doesn't pinpoint, for example, how many psychological chains you can lose before you stop being yourself. Neuroscience also offers only a partial answer to the question of what makes you you.

Neural networks encode our mental artifacts, which together form the foundation of behavior. But not always. Mess with the biological Jell-O in just the right ways and the structure of the self reveals its fragility.

Lee's personality had been consistent for decades—until it wasn't.

Lee’s first wife and girlfriend from undergrad, Alexandra, whom he married in 2008, noticed his first signs of decline:

In 2011, she started noticing that Lee was growing distant and forming some odd new habits. He spent a lot more time asleep, for one. After long workdays, she recalls, he'd walk in the door, take off his shoes, and immediately pass out on the floor. Their cat sometimes curled up and napped on his chest. His son, not yet 2, would clamber over him, trying and failing to rouse him to play.

In 2012, Alexandra told him she was taking an internship at NASA, and she was planning to take their son with her. She says his response was to calmly ask her to file for divorce before she left. “I was crushed. I said, ‘Maybe it doesn't have to be that way,’ ” she recalls. “He said, ‘No, no, it does.’ ”

When Lee told Prince and Zatlyn (his co-founders and friends) about his divorce, they both expressed their shock and gave their condolences, but Lee seemed to barely acknowledge the change. Prince and Zatlyn found his behavior tremendously odd. Still, they could rationalize it away. Relationships end for many reasons. Alexandra and Lee had married young, and both had worked long hours; perhaps they had grown apart. Besides, Lee was thriving at the company, so they didn't press.

But some years before the IPO in 2019, his behavior began to change. He lost interest in his projects and coworkers. He stopped paying attention in meetings. His colleagues noticed he was growing increasingly rigid and belligerent, resisting others' ideas, and ignoring their feedback.

Some of his colleagues were surprised when Lee separated from his first wife and soon after paired up with a coworker (his current wife, Kristin). They figured his enormous success and wealth must have gone to his head. 

Lee and Kristin started a whirlwind romance, after he complimented her on a blog post she wrote in her communications role at Cloudflare.

In May 2014, Kristin quit Cloudflare, and the next day she and Lee left for a vacation in Italy. They got engaged in Rome. At work, Lee was still the star engineer.

At the end of the summer of 2014, Lee took on a project that earned Cloudflare its first bout of internet fame: The company would help websites become encrypted for free. (It was not yet standard for company websites to be encrypted.) Lee agreed to build the necessary software by the end of September. As the date approached, Prince asked for updates, but Lee blew him off. Then, on the day before the new system was supposed to go live, he pulled his hoodie down low on his head, put on his headphones, and sat down to bang out the code.

It was a Sunday, but the office was packed with people writing up the pending announcement or delivering coffee and food. Lee's coding, though, was the main event. “And he is typing, typing, and I don't think anyone dared to interrupt,” says John Graham-Cumming, then an engineer and now Cloudflare's chief technology officer. “His hoodie is on, he's in the zone, he's doing brain surgery on this thing.”

Then, late in the night, Lee stood up. He announced that he'd finished, and he wandered away. “It was like, bzhzhzhzh, type-type-type, ‘I'm done!’” Graham-Cumming says.

The other engineers immediately started reviewing his code. By the morning, the debugging process began for real. The gambit worked, and all of their existing customers suddenly got encryption. It was a proud moment. Says Graham-Cumming: “The size of the encrypted web doubled overnight.”

After a heart surgery in January 2015, Lee’s mental health never seemed to recover.

In June they got married, in Hawaii, in front of a crowd of friends and family. Kristin noticed that he seemed subdued. It was as if someone had washed the color out of his personality. Prince noticed too but chalked it up to a slow recovery from the surgery. Lee also slept all the time and took months of leave from work.

Not long after, Lee and Kristin took a trip to Europe, spending a few days in France, just as Lee and Alexandra had years earlier. Kristin had never been to Paris, and she was excited to explore the city. She ended up doing that on her own, while Lee again spent days asleep in their hotel room. “This is so weird,” Kristin remembers thinking. On their trip to Italy, he'd been eager to jump out of bed and visit museums and cafés, and walk around. She was puzzled, but between his migraines and his heart issue, there was always an explanation at hand.

At the office, Lee was becoming impossible to work with. He would lash out at people, and then in meetings he would zone out, openly playing games on his phone. During one meeting, Prince texted him: “Are you playing a game? People are noticing.” Then: “Not a great leadership signal.”

Between Kristin and Lee’s co-founders, they showed him so much love, acceptance and patience despite their bewilderment at his erratic, disengaged behavior. They kept giving him a chance.

Lee’s co-founders put him on an official performance-improvement plan, and when nothing seemed to work, they finally let him go in 2016.

“[Lee] kind of just said, yup, that sounds about right,” Prince says. They threw him a going-away party that July. Prince thanked him in a speech with tears streaming down his cheeks. Lee stood beside him with a beer in hand, a thin smile on his face.

Now that he wasn't working, Lee napped constantly. Kristin was seven months pregnant, and they agreed that after the baby's birth, Lee would be a stay-at-home dad, at least until he figured out what to do next. In the meantime, they would live off their savings and Kristin's salary from a new job at an ad tech firm.

Things got from bad to worse in the Holloway home. Lee was a distant parent, showing complete lack of interest in their newborn son. Kristin kept pressing for Lee to see a counselor with her, and threatened to leave him if he didn’t, and so he agreed to go with her. At the counselor’s office, Kristin cried about how Lee doesn’t care about their newborn baby. Lee just sat there, blank-faced the entire time.

In mid-March of 2017, Kristin and Lee went to a neurologist to get the results of his MRI. Black voids pocked his frontal lobe, areas where brain tissue had gone dead.

Lee appeared to have a textbook case of frontotemporal dementia—known by the shorthand FTD—specifically, the behavioral variant of that disease. It targets a network of brain regions sometimes described as underpinning one's sense of self. As the pathological process advanced, it was carving a different person out of Lee's raw substance. [A]s a man in his thirties, Lee was unusually young to be afflicted.

Regardless of cause, the prognosis is grim. There's no treatment. Lee's doctors warned that his symptoms would grow worse, and that over time he would likely stop talking, become immobile, and struggle to swallow, until eventually an infection or injury would likely turn fatal.

Lee received his death sentence with pure calm. While his family cried beside him, he complimented a doctor for having a nice wedding ring.

FTD is difficult to diagnose, and is easily misdiagnosed. From being labelled as a midlife crisis, to burnout, to being a distant parent and life partner, patients can spend years being routed through HR departments, therapists, counselors as a result of misdiagnosis. By the time an MRI is done, it would have been too late.

Eventually, many FTD patients end up as apathetic as Lee, the light of their personhood dimmed to a pale flicker. Apathy also leads to incontinence, as patients lose the desire to take even basic care of themselves.

In the months after Lee's diagnosis, Kristin spent as much time with her husband as she could. His decline had been steady so far, and she realized he would only slip further away. They spent the summer of 2017 going on long walks together. They took family trips. She found herself scrutinizing every interaction: Was that his last joke? His last laugh? His last hug? 

Lee was quickly becoming unmanageable. He often tried to leave the house. His parents eventually added an alarm that chimed loudly whenever the front door opened. They hid his shoes. He'd hunt for them, and if he found them he'd lace up and bolt out the door.

Conversations soon became impossible. Lee started chattering in repetitive, unceasing loops. He would tell Kristin: “We met at Cloudflare. We got engaged in Rome. We got married in Maui, Hawaii.” He repeated it hundreds of times a day. Then the loops got shorter, more cryptic. He spoke fewer sentences, instead muttering sequences of numbers or letters.

Lee would troop aimlessly from room to room with empty eyes. At intervals, he'd sit down in the living room, turn on the TV, and flip through the channels, never watching any one thing for more than a minute. Then he'd wander off again, all the while whispering numbers: 1 2 3 4 5 6 7. 1 2 3 4 5 6 7.

As we sat in the family's living room, Kathy (Lee’s mother) described caring for her son, even as he grew increasingly distant. She misses the warmth in their daily interactions. “He used to come give me a hug and say, ‘I love you, Mom,’ ” she says. “No more.”

Kristin has spent many hours in therapy working through her grief and her feelings of guilt over deciding to live apart from Lee. She says she has felt alone in their relationship for years, and she's determined to give her son a relatively normal childhood.

Alexandra, Lee's first wife, wonders whether her marriage fell apart because of the disease or their incompatibility.

The Cloudflare IPO in September 2019 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. She bought a 5,000-square-foot house on an acre of California's Central Coast, a spot they chose in the hope that his father, Rendon, could walk with him along the shore. She worked with a landscape architect to tailor the outdoor space to Lee's needs. There are zigzagging paths on which Lee can roam and a fence to keep him safely inside. Nontoxic plants only. No nut or fruit trees allowed; those could be choking hazards once he develops difficulty swallowing, as his doctors anticipate he will.

Lee and his parents have moved there, and he has full-time care assistance too. Kristin shipped some of the furniture they'd bought together to make the house feel more familiar to him, and she blanketed a wall in family photos. She, Alexandra, and their sons visit occasionally.

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.”

Real love never ends. It just changes as we change. 1 Corinthians 13:4-8 states:

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.

Love never fails.” 

As caregivers to loved ones, we should always take care to show ourselves the same kind of love we would show others. We need to be patient with ourselves. Kind to ourselves. Suspend self-judgment, envy and comparison in our minds. We need to learn to honor ourselves. Not to beat ourselves up too much when things don’t go our way. To always stay true to ourselves. To always have faith in God, and in others. Because love never fails us, even if our bodies have.

In 2019, Kristin and the Holloway family established The Holloway Fund for Help and Hope at AFTD. Donations to this fund will be designated 50 percent to AFTD’s support programs and 50 percent to research. Kristin adds:

"Further, given Lee's contributions to the world of technology, it is critical that our fund also focus on supporting cutting-edge research and advancement in FTD treatment so that we can work towards a day when no one has to fear an FTD diagnosis."

Kristin transformed her love for Lee from that of a romantic partner and wife, to caregiver and FTD advocate, as her husband continues to decline. It is a kind of love that serves others, that approximates a transformative quality of agape love. I see parts of myself in Kristin’s story, the part of me that loves, the part of me that grieves for the loss of love, and my hope for a love that is transformative and life-giving to others.

May Lee and Kristin’s story teach us a beautiful lesson about love and mental health in entrepreneurship. I’ll end with a quote from C.S. Lewis:

"The fashion of this world passes away. The very name of nature implies the transitory. Natural loves can hope for eternity only is so far as they have allowed themselves to be taken into the eternity of Charity; have at least allowed the process to begin here on earth, before the night comes when no man can work. And the process will always involve a kind of death. There is no escape. In my love for wife or friend the only eternal element is the transforming presence of Love Himself.”

For God is love.

Stay blessed, my friends.