Oh man. I feel like butthole today. Like if a butthole shit into another butthole, that’s how I feel. Aren’t you glad I provided you with that image? Yeah. You’re glad. I know you’re glad. I don’t like feeling like butthole. I try really hard to not feel like butthole, but sometimes it’s unavoidable.
It’s exhausting, always fighting off feelings of butthole. They don’t give you a handbook for how to live with chronic illness. When I was 17, right after the doctor diagnosed me with severe Ulcerative Colitis, I looked at him like “what the fuck does that mean?” and he said “well, you should still be able to live a normal life” and then they handed me a pamphlet describing that I have a bunch of ulcers in my intestine and I’m always going to have a bunch of ulcers in my intestine and it’s gonna suck pretty bad. Then they wheeled all 5’11” 110 pounds of my starved body out of there and into my mom’s car where I had to think about the doctor’s cryptic message.
I get it now. Basically what he meant was, “Well, this is gonna blow ass, but you can figure out how to make it blow less ass if you put your mind to it. It’s not going to kill you any time soon, so that’s good, but it’s going to be a challenge. Good luck!” This is weird for me, by the way, because I never really talk about this. Which is something I should probably change. I don’t know, I guess I’ve never wanted to sound like I’m complaining or using it as an excuse. I’m super against complaining. Probably my biggest pet peeve. Can’t stand it for the life of me.
That being said, I’m going to complain now. I’m kidding. Or am I? What? Who? Why? I guess I should clarify. I don’t like excessive or unnecessary complaining. It just doesn’t serve any beneficial purpose to anyone. Whatever, that’s not the point. The point is, nobody suffers alone. We all suffer to various degrees, so it’s probably a good idea to admit our suffering. That way, we can be like “hey, you suffer? Oh my god, that’s crazy. I also suffer! What should we do!?” I think it also helps to just get it out of my stupid head. If something is weighing on me and I don’t release it out of my face to someone or off my fingers onto a page, it just gets heavier.
So, yeah. If you’re dealing with a chronic illness, you know how exhausting it is. I mean there’s the illness itself, but the mental toll is just as derailing. It’s always there. Always in the back of your head. Every time I eat a meal, I have to think to myself, “is this going to be okay?” “How much will I pay for this later?” I have to plan every day around what I’m going to eat. It’s been eight years since I’ve been able to just enjoy a meal, free from any worry. It’s a constant process of paying attention to what foods put you in pain so you can avoid them in the future. Every meal is a major decision. You can never just eat.
The two things I have to pay the most attention to are diet and stress. High levels of stress can really mess me up for days, weeks, or months at a time. I probably struggle with this the most because I’m a very ambitious person, and if you’re going to be ambitious, you need to be able to tolerate risk and stress. It’s a constant battle between “how much is this going to fuck me up?” and “how much should I push myself?” I’ve also had an anxiety disorder since I was a teenager, so I’m particularly susceptible to high stress. It’s a gnarly cocktail.
The thing with anxiety though, is the more you expose yourself to the thing making you anxious, the better your anxiety gets. I think it’s important to ease into it, though. Jumping straight into the deep end only makes things worse. For example, if you have social anxiety and it’s really been digging at your brain hole lately, it’s probably best to go try and talk to one stranger in a place you visit often rather than going out to a bar with your friends. Baby steps. Baby. Steps.
What else did I want to bitch about? Oh god, trying to explain to people why you can’t do something.
“Hey let’s hit the bars tonight!”
“Tonight’s no good for me.”
I’ve had lots of conversations like that. I know you’re probably thinking, “why don’t you just explain what’s going on?” Trust me, it’s easier to just get called a pussy. Nobody wants to hear the rundown of you trying to explain what Ulcerative Colitis is and why it’s keeping you from going out to the bars tonight. Especially if you’re a guy. Obviously it’s not the same if it’s one of my really close friends. I mean, like I said, I don’t really talk about it, so even my close friends don’t really understand. They know it’s a thing I have, but they don’t really know what any of it means.
It’s a lonely battle, but it is what it is. I still think I kind of won the genetic lottery and I’m grateful to just be alive. Chronic illness definitely gives you perspective. It has made me grateful for every day, and especially grateful for the days I feel good. It’s a constant reminder that life is fragile and could end at any second, which is equal parts dark and invigorating. I don’t take anything for granted, that’s for sure. It has made me grow up quick. I’m thankful for everything it has taught me. Every once in a while I think “God damn it just go away!” but never for too long. It’s a lesson in acceptance. There’s no point in thinking about things being different, because they aren’t.
I wrote a poem about my experience that I’ve been encouraged to share. It’s called “The White.”
Back to life
two figures emerge from the white
a voice – maternal.
An utterance recoils raspy
the diagnosis proceeds
eyes beam upward, nothing but white.
A face develops
a giant over meager me
words washed away by Oceans’ relief.
The pain, the hunger, the suffering gone
content, alive, the nothing’s enough
the beautiful white begins to fade.
Eyes wide, I try to rise
mind lift me up
body drag me down.
As a helping hand reaches out
I laugh and smile,
then roll, roll away.