Skip to content

The Sudden Obliteration of Expectation

2020-03-20 · letter vlog · Hank · 11:00 · watch on YouTube

Topic: Health (also: Personal life, Philosophy & meaning) · mode: Personal essay · tags: timely hook, heavy topic

Retelling his ulcerative colitis diagnosis, Hank describes the sudden feeling that the story you told yourself about the future is gone, argues that swinging between denial and fear is a strategy for finding a new normal, and says the pandemic feels similar: it will take time, but we will reach stability together.

What is said

The parts of the video and what is said in each (★ — how much it matters to the video).

00:00:00 — Permission for a long video; Hank's 2003-04 symptoms, uncertain diagnoses and ulcerative colitis diagnosis

  • ★ Hank asked on the Community tab whether he could make a video longer than four minutes, and the resounding answer was yes. — 00:00:00 · Four-minute rule
  • ★★★ Around 2003 or 2004 Hank began feeling worsening intestinal pain and other bad symptoms, the pain being the big one. (hedged) — 00:00:00
  • ★★ Hank put off the doctor a little too long; the doctors had no idea what was wrong: perhaps bacterial overgrowth, an allergy, an autoimmune disorder or colon cancer, ranging widely in severity. — 00:00:29
  • ★★ While undiagnosed and losing weight, Hank swung between feeling he was probably fine and feeling it was very bad. — 00:00:58
  • ★★★ After his first colonoscopy Hank was diagnosed with ulcerative colitis. — 00:00:58
  • ★★ Hank explains ulcerative colitis: immune cells attack the colon lining, which ulcerates and reabsorbs water poorly, and it greatly raises the risk of colon cancer. — 00:00:58

00:02:02 — The feeling when the imagined future falls apart: broken bones, no English word, Susie Dent's reply, discovering expectations you had

  • ★★ Hank says ulcerative colitis expresses very differently in different people: drugs vary in effect, some need their colons removed quickly, others keep them for life. — 00:02:02
  • ★★★ The diagnosis settled nothing except one thing: Hank's future was definitely not going to be what he had imagined. — 00:02:02
  • ★★ As an active, uncoordinated kid Hank broke several bones and learned the sudden realization that life will not be the same and that sameness cannot be regained. — 00:02:02
  • ★★ Hank says the same feeling can come with a relationship falling apart, the moment before a car crash, or a diagnosis for you or a loved one. — 00:02:50
  • ★★★ Hank describes the feeling: the story you have silently told yourself about the future falls apart and is simply gone, not replaced by anything. — 00:03:19
  • ★★ Hank could find no English word for the feeling, so he wrote to Susie Dent, his favorite game show linguist, who replied on Twitter. — 00:03:19 · Twitter
  • ★★ Susie Dent replied that she had been wondering about it for days and kept returning to 'wuthering', a rushing or raging you are powerless to stop, which Emily Brontë described as an atmospheric tumult. — 00:03:51
  • ★★ Hank says the suggested description isn't quite it but is close enough that maybe it can become the word, since there isn't one. (hedged) — 00:03:59
  • ★★ Hank invites other suggestions for a word for the feeling in the comments. — 00:03:59
  • ★★★ Hank says the moment you realize your expectations won't be met is often the first time you realize you had them, like expecting always to eat popcorn or keep his colon. — 00:03:59

00:04:33 — Remission, going off medicine and a worse flare; mistakes; 15 years later, a new normal without popcorn

  • ★★ Many years later, the possibility of someday needing his colon removed is a normal everyday thought for Hank; the new normal came, but not quickly. — 00:04:33
  • ★★★ Responding well to the oldest, mildest medicine and nearing remission, Hank decided he might not have the disease, went off his medicine and fell into his worst flare yet. — 00:04:33
  • ★★ Hank says he didn't want the new reality to be real, so he looked for reasons it wasn't. — 00:05:17
  • ★★ For a surprisingly long time Hank swung between taking the disease seriously and gut-level hope it wasn't real, and sometimes ate things he knew might cause a flare. — 00:05:55
  • ★★ More than 15 years on, Hank has been popcorn abstinent for over a decade and structures his life around his disease a little. (playful) — 00:06:25
  • ★★ Hank knows things may get much worse, tries to be clear about that with people in his life, and expects pain, sometimes manageable and sometimes not. — 00:06:25

00:06:54 — Reaching a new normal takes time; the mind's swinging between extremes is a strategy, not a symptom

  • ★★★ After over 15 years Hank knows what he is doing with the disease and it is part of his imagined future; the faster one gets there, the better. — 00:06:54
  • ★★★ Hank says you cannot rush it: the new future takes long to understand, no one can tell you what it will be, and you wouldn't believe them if they could. — 00:06:54

  • ★★★ Hank says the mind swings between believing nothing has changed and being overwhelmed by frustration, fear and anger, and that this swinging is not a symptom but a strategy for finding normal. — 00:07:44

    “that swinging back and forth isn't like a symptom. It's a strategy.”

  • ★★ Like balancing on moving ground, one may drop to a knee and then rise; the process is stressful and taxing and may make people more susceptible to addiction or negative thoughts. (hedged) — 00:08:13

00:08:42 — The pandemic is like coming to terms with a chronic illness: we will reach stability together; Hank's lessons

  • ★★★ Hank says getting diagnosed and coming to terms with a chronic illness feels similar to what is happening now: first something wrong, then a better-understood problem, now a deluge of uncertainties. — 00:08:42 · COVID-19 pandemic
  • ★★ The uncertainty makes imagining the future hard, bringing inevitable stress and swinging between overreaction and underreaction. — 00:09:27
  • ★★★ Hank says we will eventually reach a new normal and stability, though it will take each of us and all of us a long time to understand it. — 00:09:27
  • ★★★ Hank says it will suck, but we will catch ourselves and rise because that's what we do, and this time we will do it together. — 00:09:52
  • ★★ It will be much worse for some people than others, but we can go through it together and learn from each other. — 00:09:52
  • ★★★ Hank's first lesson from his illness: he needed not to believe his gut feelings but to believe his doctor. — 00:09:52
  • ★★★ Hank also needed livable routines, to rely on others and accept help, and to let himself be weak when he couldn't be strong and strong when he could. — 00:10:37

In the description and comments

  • ★ In a comment Hank calls a viewer's name for the feeling, 'untethering', very good, and grants the feeling is a kind or component of grief. — creator comment
  • ★ The description recommends an article by Aaron Carroll on how to handle the coronavirus as very good. — video description · COVID-19 pandemic

Threads in this video

Where the stories that moved here went next

Mentioned

Central: COVID-19 pandemic · ulcerative colitis (concept)

Also: People: Emily Brontë · Susie Dent

Organizations: Twitter

Rituals: Four-minute rule

Concepts: autoimmune disease · Chronic condition · colonoscopy · colorectal cancer · lexical gap

Products: YouTube Community tab

Only in the description or credits: Aaron Carroll

Also centred on ulcerative colitis (concept): Health Care Reform: The Hank Factor · The 1200% Increase in my Prescription Drug Costs · Your Illness is Not Your Fault · How to Get a Colonoscopy

Later videos replying to this one