Worth it: Wrigleyville during Game 5

Worth it: Wrigleyville during Game 5

It’s nice that today is Halloween because the dark circles under my eyes make me look like I belong to the legion of the undead. That’s convenient. It’s not often that looking as over-tired as I helps my desired look.

Man, am I tired. Yesterday was Game 5 of the World Series, and even though there was no way we were going to get tickets, my parents and I wanted to be in the crowd when the Cubs won their first World Series game at Wrigley Field in 71 years. Our original plan was to go to Game 3 on Friday, but after their win at Cleveland in Game 2, we decided it would be better to go on Sunday when they could win it all…except then they lost. Twice. Painfully.

When I woke up Sunday morning, I wondered if my dad would want to go still. Saturday’s was a frustrating and emotional loss. To be honest, I wasn’t sure if I wanted to go. Would it be worth the physical aftermath to stand outside or in an excessively loud bar for the evening while the Cubs lost? But not going would be like saying “yeah, they’re not going to win. The series is over. See you guys in the spring.” And that’s just too defeatist for me.

So even though we were still smarting from Games 3 and 4, we decided to hope for Game 5. That hope came so much more easily once we were surrounded by other fans on the shuttle from free parking to Wrigleyville. (People paid crazy amounts to park, but Wrigley has a free shuttle lot for night and weekend games. Don’t be the guy who shells out too much and has to sit in traffic for hours.) Spontaneous outbursts of “Let’s go, Cubbies!” are great for increasing optimism.

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There’s something about standing in line for thirty minutes to use the one-stalled bathroom at a Taco Bell that isn’t so awful when it’s the Taco Bell across the street from Wrigley Field and everyone in line is as excited as you are. Camaraderie.That’s the spirit of Wrigleyville; everyone is there to be excited, to believe, together.

As game time neared, we looked for some place to eat that didn’t have a cover charge. The downside to World Series excitement is that it suddenly costs upwards of $200 just to enter establishments within a block radius of the field. But luck was on my side and Homerun Inn, one of the few pizza places that don’t use garlic or onion in their sauce (which means I can eat it), was free of cover charge and full of giant TVs. We were seated and eating by first pitch, when the chorus of “LET”S GO, CUBBIES” clap clap clapclapclap was more than loud enough to drown out the speaker system.

The difference between watching the game at your local bar and watching the game in Wrigleyville (assuming Wrigleyville isn’t local for you), is that no one is having irrelevant conversations. No one is talking about work or tomorrow’s plans or that thing Brian did at that party one time. Everyone is here for the game. There is only the game. And good plays are worthy of ecstatic outbursts, neutral moments deserve encouraging applause, and tense times are for hushed prayer.

It’s hard to sit at a table and calmly eat pizza when you’re team is in the World Series. I ate way too fast, like if I didn’t finish my food quickly enough the players would lose momentum. When I looked around, almost no one was eating as usual. It’s difficult to hold pizza when you might suddenly have to jump up and high five the person next to you. One of my favorite moments of the night was when a tiny kid, maybe five years old, walking back to his grown ups stopped to high five everyone at our table. The unexpectedness of a kiddo popping up so late in a loud, crowded place coupled with his quiet joy delighted me.

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Watching TVs in store fronts

After the 7th inning, we left the restaurant to get back to the Addison and Clark. But it was nerve wracking to leave the comfort of eight screens (and warmth and seats). We checked every store front we passed for visible TVs and walked/ran towards the next window of light when there wasn’t one. A small group congregated outside of Sportsclips, which was hosting a private party of bros and the pope (thanks, Halloween), to watch the 8th through GO CUBS GO written in giant blue letters. This crowd was less physically enthusiastic than the last but more jokester, and there were plenty of nervous chuckles passed around, especially when the guys from inside opened the door to vape.

“The pope’s rooting for us. We got this.”

“Does the pope vape too?”

At the middle of the 8th, we took off again, joining the hundreds-strong crowd in front of the marquee. If there’s a fault with Wrigley Field, it’s that there is no outside screen visible from the street. If you’ve got eagle vision, you could probably make out the live feed screens levels above, I could see the pitch, but not the ball or the count. But it didn’t really matter. The crowd inside made it easy to distinguish a strike or a ball. And that final pitch!

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The sound was beautiful. The crowd instantly grew several feet as hands went up, W flags whipped through the air, and CUBS WIN lit up the marquee. Confetti flew. Camera crews congratulated themselves on their great timing. My dad jumped into the background of an interview. My mom pretended not to know him. I sang as loud as I could.

And now I’m exhausted, but in a good kind of way. It’s worth a day or two of recovery to feel the electricity of a World Series game played (and WON!!) at Wrigley. Even though I’ve barely moved today, at least I’m flying the W.

Baseball and Bad Ideas

Baseball and Bad Ideas

The Cubs are in the World Series. This is a time for extraordinary feats, for crying manly tears, for breaking curses. Real life is pretty much an inspirational sports movie right about now.

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Because of this, because emotions are high, because the atmosphere in Illinois is practically sizzling with long over-due satisfaction, I am going to do the unthinkable. I am going to join the crowds outside Wrigley Field this weekend. I am going to walk long distances, stand for hours, be cold, maybe drink something stronger than a Cherry Sprite, and I am going to ride that adrenaline like it’s a mechanical bull and I am a drunk guy trying to prove myself.

About an hour after I called my dad and asked if he’d like to stand with me outside Wrigley while our favorite team in all the world played in the World Series, I started to think maybe that is a stupid idea. It was 7 pm on a day when I hadn’t done much of anything, but I was already in bed, exhausted and having a hard time focusing on an essay that I needed to write. I finally decided to put it away until the morning because I was clearly over-done. I don’t go out, I thought, even on regular nights, because it’s too exhausting and the recovery time isn’t worth it. This will be like 20 times worse.

And then I thought, to get to Chicago on Friday I will have to make the 2 hour drive home from school after my classes–that always wears me out. I’ll have to take medicine for the migraine that will form during the drive, like usual. And then I will have to get in another car to make another drive which will probably take longer, because everyone in the world will be migrating to Clark and Addison.

That thing called “post-extertional malaise“–that thing that makes me disproportionately more tired with everything I do–is real and terrifying. It’s mean. It is an old-school school teacher waiting with a wooden ruler to slap my knuckles every time I mess up. And sometimes when I don’t, just for fun. But it’s worse than that, too, because if I make it really mad, it can mess up my life. Exhaustion can start as a snowball and turn into an avalanche. But so far, I’ve bounced back well enough.

I’ve stayed up all night before. I worked an entire 10 day movie shoot from 4 pm to 6 am this summer. But I did sleep from 6 am to 4 pm…and I cheated and napped a bunch of times. And I slept a solid 48 hours afterwards. I won’t be able to sleep all day before staying up all night this weekend–I’ll have to power through. And I won’t have time to recover afterwards. I have to get right back to school and be able to function in my classes.

What shoes should I wear? This is a serious question because if my feet hurt, or if they’re slightly too heavy, or if I am in anyway noticeably uncomfortable, I’ll feel disproportionately worse and my recovery time will multiply. I need to be warm enough and light enough and comfortable enough that I only have to deal with the physical ramifications of walking too far and standing too long and staying up way too late.

Should I exercise this week? I feel better overall when I move around and stretch out, but it can make me excessively tired if I’m not in the perfect condition to handle it. So I’ll skip that for now. If I do too much or in anyway wear myself out before Friday, the snowball of exhaustion will get too big to stop and cascade down the mountain side until it crushes a sweet Swiss village with it’s icy fury. (Or something less dramatic.)

So I sat in my bed, too tired to motivate myself to change out of my jeans or take out my contacts, and worried that I was having a moment that is best described with a line from a movie–a “you think you can do these things but you just can’t, Nemo” moment. These are moments when I over-reach, when I am fully convinced that I can do something that even a little bit of thought would reveal to be absolutely beyond my capability.

But this year I have done so many things that I shouldn’t have been able to do. Like that movie shoot, for instance. That was not at all a smart decision. If I hadn’t gotten the amount of sleep I did, or if it had lasted one day longer, or if I had pushed myself to stand up more, or if the boxes I carried had been heavier, or if the wind blew a little harder–if anything had been a little more difficult, I could have jeopardized my overall health permanently.

Oddly, thankfully, I was feeling more Nemo than Marlin when I made my summer plans. Because the experience was unforgettable. I’ve never been in a World Series crowd before (for obvious reasons) but I imagine that will be pretty unforgettable, too. So I’m going to plan my clothes, and my nap times, and my activities for the rest of the week, and a hundred thousand tiny decisions around this one night.

Maybe my legs will hurt. Maybe my head will pound. Maybe I will sit down in the middle of the cold street and cry. Maybe my heart will do that thing that it does when I’ve hit my breaking point–it feels like it falls over inside my chest cavity. I don’t know what that’s about. Whatever. The point is: maybe I shouldn’t be able to do this, but maybe anything is possible. Maybe I’ll feel fine.

The Cubs just won the pennant, so I’ve got to try.

(If my dad decides he doesn’t want to go, please disregard all inspirational feelings. Thank you.)

25 is coming

In a few weeks, I’ll be 25. I’m trying to not be one of those people who freak out about this birthday because they’re already anticipating freaking out about 30, which is a premature over-reaction to 50, which is a reminder that someday you might turn 70 (and you hope you do, but a tiny part of you thinks “dang, that’s so old”), until you reach the root of your fears which is the realization that you’re going to die.

Happy birthday to me.

We take stock of our lives on our birthdays. Have we hit the milestones appropriate or expected for this age? What plans do we have for this new year on Earth? Was the last year a good one? Are we happy/fulfilled/successful/purposeful/stressed out of our minds?

I don’t feel like I’m mature enough to be 25. I’ve never paid for utilities. My favorite foods are still french toast and mac & cheese. I haven’t graduated yet. I literally would not survive without my parents’ support. I can do my own laundry and air up a flat tire, so that’s a point in my favor.

24 was one of the hardest and best years of my life. I hit a lot of unexpected, non-traditional milestones. But birthdays are weird for me because they not only mark another year of life, but they mark another year of chronic illness.

I wish they didn’t. I wish I could separate the two in my mind. I wish birthdays could just be a celebration of still being alive. But it’s the same with New Year’s and the anniversary of the infection that started it all. They’re marks on the calendar reminding me every year how far removed I am from HEALTH and that I may never get back to it again. If I was healthy, 25 would look different, and I would have to switch out a few things on that list of reasons I’m not mature enough.

When I hear people say things like “so grateful to be healthy #blessed” on their Instagram posts after a natural disaster or a story of a disabled person doing anything has made them feel guilty for complaining about their lives, I want to roll my eyes. But I shouldn’t. Because to them that’s the base level of gratitude for existence. Healthy is our humble, non-greedy desire. When you don’t want to ask for too much, you ask for health.

What do people say when they’re expecting and some asks what they hope the baby is? HEALTHY. They hope the baby is healthy. I hope the baby is healthy. We all hope the baby is healthy. But sometimes, many times, the baby isn’t healthy. Or it starts off healthy but it gets an infection and then it counts its birthdays in terms of years alive (25) and years sick (12.5).

So my dilemma on my birthday is that base level of gratitude. I do not have my health. As I write this, I am in bed debating whether the pain in my head is enough to warrant taking more medicine, or if I am capable of powering through because I don’t want to be loopy for an interview later. I have been at this for 12.5 years. 13 birthdays. Over half of my life. I am planning my future without the presence of HEALTH, but also with the bold gamble that I will continue to manage and maybe make some more slight (incredible) improvements.

On this birthday, I will not be healthy. If I am fortunate enough to get 45 more birthdays, I may not be healthy for any of those either. That’s life, kid. C’est la vie. I am still grateful for so much. My base level gratitude starts at breathing. I am breathing. I am here. I am living and that’s kind of amazing in itself. So cheers to 25 years of breathing. I’m grateful for all of them.

About Today

Sometimes I wake up with pain in my face and forehead like my skull is contracting. The running joke in my family is that an alien life-form in gestating in my brain and I’m experiencing Braxton Hicks contractions. It’ll pass. (Until the day the infant alien bursts forth.) Anyway, I woke up to false alien baby labor this morning.

The best thing to do on days like this is to stay in bed and watch some tv. Maybe take a shower or a bath at some point, since water always feels good. But no pressure. Just take it easy. Give my poor head a break because it’s clearly going through something.

I don’t do what is best, though, because I am determined. I force myself out of bed. I make to do lists–multiple lists of things I have to get done today–or else. Never mind that I can barely get through writing the list. I stare into space trying to think of the word for those little sticks with the soft ends that clean your ears…what are those things? I know I know this. What’s the….?

When I look down at my phone it’s been fifteen minutes, I’ve written three items, and I have no idea what those stupid cardboard fluffy sticks are called but I know I need to buy some of them. The two other items on my list are read everything on each syllabus for my classes and write every paper due this semester. Not really, but it might as well be that unnecessarily ambitious.

Going to the store like this is a bad idea. I’ve done it before. I survived. But it’s not a pleasant experience. I am Dory and I can’t remember that important thing. I make a plan in my head; go to toiletries, then grocery, then leave. But I forget it as soon as I’m in amongst the people and noise and choices. So many choices. Why are there four different kinds of sticks with cottony stuff? That’s too many. And my skull starts to constrict in a wave of pain and I don’t care about Q-tips. Ah, Q-tips! They’re called Q-tips. Anyway, I don’t want Q-tips. I don’t want to be in the store. I want to go home and climb into bed. Why am I out of bed anyway? Whose idiotic idea was this?

“Do you need any help?” a shelf stocker asks me, which is unusual because the staff in this store are not particularly helpful generally. But the stocker seems amused by me. That’s when I realize I have been in this aisle for twenty minutes. Twenty minutes looking at Q-tips. So I left the store without buying anything.

My bookbag in the front seat reminds me that I’m supposed to get stuff done today, but it’s not going to happen. I know that now. My determination is broken. So I drive home mad. I’m mad at myself for not being able to pick between four kinds of Q-tips. Or finish a simple to-do list. Or work on an actually important assignment. Or write a blog post about having a chronic illness.

I’m mad at myself for not being able to manage better, even though this is the only one day and I’ve gone a couple weeks without wasting an entire day in bed. I’m mad that any day is wasted. I’m trying to make up time here! I have to use every day. I have to finish to-do lists.

But by the time I get into bed, I’m too exhausted and my pillows are too comfy for me to be mad anymore. I’m pretty sure the alien baby has changed positions because now my skull is threatening to split open at my temple. So I can’t think about a paper or write a post or remember to eat today.

Tomorrow I won’t be mad at myself for today. I’ll be a little frustrated by the additional work I have to do. And embarrassed about that whole Q-tip fiasco. But I won’t be mad. Because a bad day is a bad day. I’ve been through bad weeks and bad months and bad years. I came out the other side of a bad decade.

Bad days are days I don’t get back. That’s true and it sucks. Nothing gets done (except parts of this blog post). I don’t see my friends or make new connections. Occasionally I miss deadlines and the type A side of me dies a thousand deaths in agony. But mostly the world goes round and I binge an entire series on Netflix (only actually watching some of the episodes because the light from laptop screens is refracted evil). And right now, in a moment of rational clarity, I know bad days are not my fault. I can’t control them. I avoid my triggers, but they’ll happen anyway. So what’s the point of being mad at me? It’s just mean. I’m trying my best here.

I know I won’t remember this revelation the next time I wake up feeling like my cranium is being squeezed from the outside while stretching on the inside. I’ll worry I’m going to waste a whole day again. I’ll convince myself that everything needs to be done and it has to be done today. So next time, all I have to do is read this post, try not to roll my eyes–which will hurt like hell–and surrender. It’s just one day.

Sweating Through It: Talking about Chronic Illness with Someone New

The worst thing about making new friends is explaining my life. It starts early with simple questions like “How many classes are you taking?” I can see the confusion when my answers don’t line up with expectations. Subconsciously, my potential friend has a vision of me already formed–not the specifics, but a general outline. And in that general outline, I am healthy. I hate the moment that vision goes away. I hate that I have to explain it away.

“Wait. So like, what do you do? I mean, if you’re only part time and you don’t work?”

I don’t know how to answer that question. Still. After dozens of attempts, I’m not sure I’ve ever answered in a way that makes any sense. Probably because I still don’t know what I do with my time. Rest? Stare into space? Worry about answering that question? Eventually, I give them the whole run-down, the “chronic fatigue syndrome/life story” starter conversation. Sick at 12. Bunch of doctors. Tutors at home. Not enough research. No treatment. No cure. Yada yada. That whole spiel.

Honestly, I still sweat through that first conversation. I try to treat it as nonchalantly as I can. I’m simply relaying information because someone asked a question. But it doesn’t feel that easy. And I worry that it’s heavy. I feel like they asked about the weather outside and I told them about the worst storm in local history–surprising, confusing, and unnecessarily depressing.  It’s difficult to tell when to get into the details and when to just smile and let them wonder.

Yesterday, I stopped a few of my fellow students outside the football stadium to ask them questions about tailgating for a piece in the yearbook. Coincidentally, two of those students were from small towns near mine, and wanted to chat about the local community college and who I knew from high school. Except I don’t know people from high school. Because I, you know, didn’t go. Maybe I should just say I was home-schooled; it’s less confusing and doesn’t generally invite follow-up questions. But I’m do this thing with my life where I try to be honest, to the best of my ability. So I make things awkward with strangers on principle.

“Wait. What does that mean, you didn’t go to high school?”

“Uh, well, do you want my whole life story? That was the simple answer.”

“Yeah, give us your life story, because the simple answer is confusing.”

So I didn’t give them the whole scripted explanation, but I told them I got sick. Somehow that always feels personal. It’s an event in my life. I was born. I did things. I went places. I got sick. It shouldn’t be hard to say. It shouldn’t feel like a secret. I’m not confessing. But I sweat like I’m confessing when I say “I have chronic fatigue syndrome.”

I fear dismissive reactions. It’s disheartening to have to convince someone that my condition is actually a big deal. I’m scared that people don’t think it is. I’m scared they suspect I’m just weak. That fear will make you sweat. But most people don’t react that way. Most people are nice and try to understand. So why am I ashamed? Why do I feel like I’m admitting a personal failing?

I don’t want to let go of that vision a potential friend might have of me, the general outline in which I am healthy. I like that image. It’s not even mine, but I don’t want to change it. I want to seem that way for as long as possible. I want to be that for real. But I’m not that. And if I want to have conversations in which I talk about my life, I have to talk about being sick. It touches every part of my life. It is my life.

That first conversation may always be an anxious occasion for me. I may never be comfortable ripping a hole through a person’s outline assumptions of a healthy me. But that first conversation is only one, and in my experience, it’s usually not the last one. The next conversation–when my potential friend (or maybe actual friend, at this point) feels comfortable enough to ask me questions, to get to know what my life is really like–is usually better. And the ones after that–when they get your dark jokes and know your migraine triggers almost as well as you do–are sometimes, maybe even mostly, good. You won’t know who is capable of those good conversations unless you wade through that first one.

The best part about making new friends is obviously the people themselves. And I want more people. People who can get it, if I explain it a little bit first, are ones I want around. So I keep having that first conversation, even with strangers I’m just trying to interview for the yearbook. Maybe the more I do it, the easier it will be. Hopefully, someday it won’t feel like a confession, but more like a statement of fact or even revealing something fascinating about me. Until then, I’ll sweat through it.