 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. The 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 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 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 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 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 going to 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 and 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 uh, 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 going to 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 Uh 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 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 one of the amazing things about a withering 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 every day 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 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 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 going to 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 going to get much worse And I'm I try to be clear about that with the people in my life And I can expect pain and sometimes it's going to be manageable and sometimes it's not But 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 the 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 going to be Like you don't you actually don't know if 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 you wouldn't believe them I I mean, I know that I couldn't your mind's going to be searching for ways to make the story make sense So it's going to 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 going to find ways to believe that everything is actually the same and that this whole thing Is a lie other days you're going to swing exactly in the other direction and you're going to 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 but 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 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 just you know gestures broadly like first we knew something was wrong But we didn't know how serious it was so we're 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 Dayloosed with uncertainties and that makes the process of sort of like imagining the future Really hard and that creates inevitable stress and inevitable This this wayfinding 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, 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 going to be something we do together Like this isn't going to be the same for everybody. It's going to 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