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 were other bad symptoms.  The pain for me was the big one.  It was a lot.  Some days it was like, aaah, that's a bad, like, sort of, you know, intestinal cramp, and 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 kinda 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.  It 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, some are with you forever, some you might die of, 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 and 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 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 in different people, different drugs work more or less well for different people.  Some people have to have their colons 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 bone.  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 it 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, or 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 for days.  I keep returning to wuthering, a rushing or raging that you're powerless to stop.  Emily Bronte described it as atmospheric tumult."  

This isn't quite it, but it's like, close enough to it that maybe we can make it it, 'cause 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.  One of the amazing things about a wuthering 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 that 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 started 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 wasn't in as much pain anymore, I was close to or all the way into what we call remission, and then when you are out of remission in 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 kinda 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 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 trying--I 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, but what's gone is the wuthering, 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.  The faster you can get to that point, 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's gonna be like.  You don't--you actually don't know.  If somebody could tell you that, that would 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, 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 place that actually meshes with like, observed reality.  Some days, your mind is going to 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.  You're gonna be overwhelmed with frustration and fear and anger, and that 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 just takes time to rebuild that.

John, if you couldn't tell, I'm 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 the--what's happening right now gener--just, you know, *gestures broadly*.  Like, first, we knew something was wrong, and we didn't know how serious it was, so we were trying to figure that out.  Then we understood that it was serious, we understood the problem better, but that also threw a bunch of unknowns in our face, and right now, it feels like we're in the part where you're just deluged with uncertainties and that makes the process of sort of like, imagining the future really hard and that creates inevitable stress and inevitable, this wayfinding process of like, overreaction, underreaction, 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, but 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 wuthering 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.