good morning John so I want to talk
about something I've never talked about
on the channel before and it's kind of a
biggie so I went ahead and asked on the
community tab if it was okay if I did an
extra long video that's more than four
minutes and the resounding answer was
yes back in 2003 or 2004 I started to
feel a lot of pain in my intestinal area
and it just kept getting worse and there
are other bad symptoms pain for me was
the big one it was a lot some days it
was like ah that's a bad like sort of
you know intestinal cramping some days
it was like there's a cactus in me in me
it kind of ramped up slowly and in the
way of a slow ramp I kind of maybe put
off going to the doctor a little too
long but I finally did I went to the
doctor and they had no idea what was
wrong with me could have been a
bacterial overgrowth or maybe an allergy
to something maybe an autoimmune
disorder maybe colon cancer those things
range really widely in severity some can
be taken care of in a month and you
never have to think about it again
somewhere with you forever some you
might die out and this was a really bad
time not just because of the uncertainty
but also because I was experiencing a
lot of bad symptoms I was losing weight
I knew there was something serious wrong
during the months I was undiagnosed I
spent a lot of time feeling like I was
probably just fine it was gonna get
better on its own and I spent a lot of
time feeling like this was very very bad
and then eventually I got my first
colonoscopy and I was diagnosed with
ulcerative colitis which is an
autoimmune disorder where your immune
cells attack the lining of your colon
your large intestine which is the colon
those are the same thing
it's then forms ulcers which are painful
and it does not do its job well which is
to reabsorb water so you go to the
bathroom a lot sometimes when you least
expect it that's pretty bad it makes it
hard to be a normal person also it
really dramatically increases your
chances of getting colon cancer which is
also bad the thing is like this
diagnosis didn't say like okay now we
know what your future looks like it was
just one piece of information and
ulcerative colitis expresses very
different and different people different
drugs work more or less well for
different people some people have to
have their clothes removed pretty
immediately some people can live their
whole lives with their colon still
inside of their body so basically
I had this one new piece of information
but it opened up all of these other
questions so there wasn't anything
certain except I knew one thing which is
that my future definitely was not going
to be what I had imagined it would be
when I was a kid I was both active and
not particularly coordinated so I broke
a number of bones and I got to know the
feeling of what it's like when you break
a but first there's the actual feeling
which sometimes you're not sure but
sometimes you are and then there's
another feeling there's a sudden
realization especially after the third
or fourth broken bone when you've been
through this before that your life is
not gonna be the same anymore and there
is no way to reacquire that sameness
this is a very particular feeling and I
had a first with broken bones but I have
had it a lot since it might be having a
relationship fall apart or that moment
right before you hit the car that's in
front of you maybe it's a diagnosis for
you or for a loved one it's such a
specific feeling this moment where you
suddenly realize that you don't know
what the future holds anymore and the
story you've been quietly silently
telling yourself about what the future
is going to be like that story just
falls apart it's not there anymore
it doesn't get replaced with something
it's just gone I wanted to know what
this feeling is called because it seems
so specific that there should be a name
for it I've experienced it a bunch of
times I could not find a word for this
in English
I wrote to Susie Dent who is my favorite
game show linguist and she actually
wrote me back on Twitter and here's what
she said I've been wondering similar
four days I keep returning to withering
a rushing or raging that you're
powerless to stop Emily Bronte described
it as an atmospheric tumult this isn't
quite it but it's like close enough to
it that maybe we can make it it because
there isn't a word for it I'm also open
to other suggestions in the comments
I've described it as best I can but I
would love for there to be a word what
are the amazing things about a with a
ring is that the these moments when you
realize that like your expectations
aren't going to be met are often the
first time you realize you even had
these expectations like I didn't realize
I had an expectation that I would always
be able to eat popcorn or that I would
always have a colon inside of me now of
course many years later the reality that
I might someday have to have my colon
removed is a normal everyday thought to
me it was not then the expectation
shifted and I have a new normal but that
did not happen quickly when I first was
diagnosed with ulcerative colitis I
didn't really know anything about it and
we also didn't know like me and my
doctor didn't know how I was going to
respond to medications and first we
start out with the stuff that's been
around the longest that is least likely
to work but has the fewest side-effects
and I actually responded really well to
it I started to gain weight I I wasn't
in as much pain anymore I was close to
or all the way into what we call
remission and then when you were out of
remission and ulcerative colitis speak
you're having a flare-up but anyway this
was my first time into remission after
having my initial flare and I started to
think okay maybe I don't actually have
ulcerative colitis like I feel kind of
fine now maybe the doctor was wrong
about this maybe I don't have to reshape
my entire imagining of what my life is
gonna be like I didn't want the new
reality to be real so I was looking for
reasons why it wasn't right so I went
off my medicine and I immediately went
right into a flare that was worse than
it ever had been and it took me a really
long time to get that back under control
again now this process of like taking
the disease really seriously and like
understanding that this is something
that I'm gonna have to live with and
that I have a new normal now and then
reverting to this you know gut level
hope that maybe it isn't real that kept
going on for like a surprisingly long
time I made mistakes along the way I
wasn't always careful about my health
sometimes I ate things that I knew might
give me a flare-up and sometimes they
did and now more than 15 years later I I
have been popcorn abstinent for over a
decade and there are things about my
life that are different i structure my
life around my disease a little bit and
I know that there's a possibility that
like things are gonna get much worse and
I'm try to be clear about that with the
people in my life and I can expect pain
and
sometimes it's gonna be manageable and
sometimes it's not what's gone is the
withering that that emptiness ahead that
my previous conception of the future
used to inhabit and all of the
irrationality and the chaos that comes
along with not having anything in that
space anymore I've had this disease for
over 15 years and now I know what I'm
doing with it I understand my life
better I it's part of my imagining of my
future faster you can get to that point
it the better but but like you can't
just do it it can't just happen first
because it takes a long time to just
understand what the future is gonna be
like you don't you actually don't know
somebody could tell you that that'd be
one thing but they can't because it's
different for different people and we
don't actually know but second because
even if somebody could tell you what
normal is like now yeah you wouldn't
believe them I I mean I know that I
couldn't your mind's gonna be searching
for ways to make the story make sense so
it's gonna be like swinging around
wildly from one extreme to the other
trying to find like the the place that
that actually meshes with like observed
reality some days your mind is gonna
find ways to believe that everything is
actually the same and that this whole
thing is a lie other days you're gonna
swing exactly in the other direction and
you're gonna be overwhelmed with
frustration and fear and anger that's
swinging back and forth isn't like a
symptom it's a strategy this is how we
find where normal is it's like if the
ground suddenly started moving
underneath you like you'd have to
balance and like move from one direction
to the other to find find some stability
you might even need to like drop to one
knee right but then when the ground
stops moving you'll rise this process is
stressful
it's cognitively taxing you might be
more susceptible to addiction or to
negative or unproductive thoughts I know
that is the case for me but eventually
there is a stability there there is a
new version of reality that you can
place yourself into it it just takes
time to rebuild that John if you
couldn't tell
talking about this today and I've been
thinking about it a lot because it feels
like the process of getting diagnosed
and coming to terms with
a chronic illness feels somewhat similar
to that's what's happening right now
Janet just you know gestures broad like
first we knew something was wrong we
didn't know how serious it was so we're
trying to figure that out and we
understood that it was serious we
understood the problem better but that
also through a bunch of unknowns in our
face right now it feels like we're in
the part where you're just Dale oozed
with uncertainties and that makes the
process of sort of like imagining the
future really hard and that creates in
inevitable stress and inevitable this
this wave finding process of like
overreaction under reaction and not
being sure whether you're doing either
at any given moment but eventually we do
get to a new normal there will be a
stability out there even when reality
reaches some kind of stable state it's
gonna take us each individually and
collectively a long time to sort of
figure out exactly what that is to
actually understand it and we're gonna
rock back and forth and we're gonna have
moments where we think this isn't a big
deal and moments when we are blissfully
free of it and moments when we are
crushed by it and it's gonna suck but we
will catch ourselves and we will rise
because that's what we do and at least
this time it's gonna be something we do
together like this isn't gonna be the
same for everybody it's gonna be much
worse for some people than for others
but we can go through it together in a
way that we can't with most withering
times and we can also learn from each
other so here's what I learned from my
disruption first I needed to not believe
my gut feelings and I needed to believe
my doctor I needed to do things to
create stability in my life that helped
me imagine the future better I needed to
find routines that were livable and
enjoyable inside of my new normal and I
needed to rely on other people and
accept their help when I needed it I
needed to let myself be weak in the
moments when I couldn't be strong and I
needed to let myself be strong in the
moments when I could I hope those
learnings are useful to me in the coming
months but even more I hope they are
useful to other people John I'll see you
on Tuesday