Life is Gross and Then You Die

I watch a lot of romantic comedies.

If Hugh Grant is in it, I’ve seen it. If it involves a funny but sweet montage, I’ve seen it six times. I’m looking forward to the release of Bridget Jones’s Baby the way adult fanboys look forward to the release of a new Star Wars film (which, coincidentally, I am also looking forward to. I can have layers, okay?)

That being said, I’ve seen a lot of (fictional) romances unfold. And I can tell you this–– at no point during the funny but sweet montage does the girl bowl over with a stomach ache. At no point while Colin Firth is eventually professing his undying love does Rene Zellweger have to pause their love story for a poorly timed emergency trip to the bathroom. When Harry and Sally are driving cross-country, they don’t have to make two dozen stops at questionable gas station bathrooms. Anne Hathaway doesn’t keep a travel Pepto Bismol in her purse.

So it’s come as an unpleasant surprise at age 24 to learn that I am not the star of my own romantic comedy. I’m just Sam.

And just Sam has Crohn’s disease, a chronic illness whose main side effects are a lot of gross things that you don’t mention in polite conversation. Chronic illness in general can be isolating, but you know what’s extra isolating? Talking about poop.

Everybody poops. Especially Max. 

I agree with the commercials and campaigns that say “Crohn’s is more than just a bathroom disease.” It is! It’s way more! It’s a host of other things, like extreme abdominal pain like you’ve never felt before, and anemia, and skin rashes, and arthritis, and eye problems, and a lot of other unpleasant things. But it’s also a bathroom thing, day in and day out, and I would be remiss to run a blog about Crohn’s disease and be afraid to talk about shit like this. The literal kind of shit.

So, at the risk of jeopardizing my chances of ever becoming a romantic comedy heroine, here’s the sitch: everybody poops. Even Beyonce, and heads of state. Even the super hot girl who works at your gym. Even your fancy aunt who doesn’t let people eat in the living room. People with Crohn’s happen to do it a lot. So much so, in fact, that I think if you can’t talk about and joke about it, you’d go insane. And since you’re already going to the bathroom like a dozen times a day, you don’t also have time to deal with being institutionalized.

All within the past year, I have done the following: collected my own poop, stored it IN MY FRIDGE next to my Kombucha, and then delivered it to the hospital to be examined. I have drank a gallon of liquid laxative and then had a camera shoved up my ass. I have started bleeding out my ass and then, because I lack tact, referred to it in conversation as my butt period. I have come dangerously close to shitting myself on pretty much every form of public transit in Chicago, and a few in other cities. I have had hemorrhoids. I have had the adult version of diaper rash. I have become intimately familiar with where you can find unlocked public bathrooms.

I’m lucky, because my best friends are disgusting human beings. They can talk about shit all day. They love to be gross. I recently had a cyst burst and they spent an undue amount of time asking me about it’s contents. The universe sent me the perfect human beings to be in my life if I was going to be living as the human iteration of the poop emoji. They never ask questions when we’re on a road trip and I need to pull over. Those are friends you need.

My body does a whole variety of fun and unspeakable things on a pretty much weekly basis. It gets seriously discouraging–– becoming afraid to eat because everything you eat makes you violently ill is not a good look, and it’s a situation I’m in regularly. It also gets seriously dangerous–– dehydration is no joke, folks. But it also gets seriously more manageable if you can joke about it. As with most bad things in life, if you can find a way to laugh at it, you win.

So I’m a little nervous to post this blog, because I’m still secretly hoping Zac Efron is going to come sweep me off my feet, and I’m not sure he (or any guy) is going to be interested in a girl who has told the whole internet about how much toilet paper she goes through. But I’m holding out hope that one day I will be the subject of my own rom com, and the dude won’t care if I have to pause our passionate kiss backed by a romantic overture because my stomach is rumbling in that dangerous way.

I feel like maybe Hugh Grant would understand.

Why Am I Not An Olympian (Or, Ramblings of a Crazy Person)

I found out about Kathleen Baker's Olympic silver medal at 3 AM.

I wasn't awake to watch her take on the 100m backstroke because I'm almost never awake past 9 PM anymore. And that's because Kathleen Baker and I share the same disease.

I found out when I woke up at 3 AM with some nightly steroid-induced insomnia. Because I have wonderful loved ones who are crazy supportive of me and my struggles with Crohn's, I checked my phone to see no fewer than four texts that all said something along the lines of: the girl who just won silver in the backstroke at the olympics has Crohn's!! *american flag emoji*

My first emotion at the news was excitement. Because that's awesome! Damn, good for this girl! I did the world's quickest Google search and saw all the headlines about Kathleen "overcoming her disease" to win an Olympic medal. I work in social media and PR, and it's exactly the awe-inspiring stuff people love to click on.

Now the only emotion I feel is a crazy amount of CONGRATS

But after my cursory glance at Google, I got a little sad and I couldn't put my finger on why. This was a fellow Crohn's patient succeeding in one of the biggest arenas in the world! And then I put voice to the thought that goes through my head whenever I see someone who's chronically ill achieving some crazy feat–– if they can do it, why can't I? What am I doing wrong?

Now let's speed past the logic part that says I'm not doing anything wrong, she just spent her entire life training for the Olympics and I didn't. Duh. The point is, sometimes when a sick person sees an ~inspirational tale~ of another sick person overcoming all odds to win an Oscar, or become an astronaut, or win an Olympic medal, they feel a little beat by their body. It's one thing to say "hey, I probably can't achieve greatness when my body barely wants me to achieve alive-ness." But it's harder to tell yourself that when you see someone surpassing those odds.

So rewind back to my Google anxiety hole–– I'm sitting here, berating myself for not being an Olympic medalist and also for not being healthy enough to do basic stuff like go to bars with my friends. I'm wondering if I'll ever be able to achieve the things I want to in life. Or, in a darker thought, if I'll ever be able to achieve anything of note.

I'm not an Olympian, but sometimes I DO hike a small incline just for the Instagram

But then I did some reading, which is an activity I recommend for anyone who thinks they know everything. I read this great article that not only made me cry–– it pointed out all the sacrifices Kathleen has had to make because of her Crohn's. You see, in my mind she was a super human, laughing at all of us mere mortals who were stuck in bed thanks to our symptoms. Now I know she's just like me–– I focus all of my energy on holding down my job, and doing the best work there that I can possibly do. She does the same thing, it just so happens that her job is being a badass freaking Olympian. 

It's a great reminder that when you're sick, you can still accomplish (almost) anything–– but you can't accomplish everything. I can write for a living, I just may not be able to like, run my own production company where I oversee 15 hit shows (like a certain Shonda Rhimes). Kathleen can swim in the Olympics, she just may not be able to compete in every single event she might like to. Maybe there's an alternate world out there where Crohn's doesn't exist and I'm the next Mindy Kaling and Kathleen has 25 gold medals.

But in this world, we're working with what we've got. And I think we're doing a pretty bang up job.

Repeat After Me: Being Sick is Not a Point of Failure

There’s no definitive cause to Crohn’s disease. Like a variety of other diseases from Ulcerative Colitis to Lupus to Alopecia, it’s a mysterious variety of factors that may or may not cause illness to develop in a patient. Suffice it to say–– it’s not the patient’s fault that they have these diseases.

I definitely didn’t ask for Crohn’s disease. I was just a high school junior, living my life, studying for the ACT, working at Applebee’s, and watching way too much Buffy The Vampire Slayer. I was just like all my friends, until my body decided that food wasn’t a thing it was going to put up with anymore. And just like that, I went from healthy 17-year-old to chronic illness patient for life. My intestines did not consult me about this.

And here’s the thing–– our society places a really high premium on being healthy. Which is great! It (hopefully) stops people from eating french fries for every meal, because who wouldn’t want to do that if health weren’t a factor? It keeps us exercising, and eating well, and all of those other good, Instagrammable things. We should definitely all be aware of the parts of our health that are within our control, like cholesterol levels and BMI, as much as we can. But what about the parts that are out of our control?

When we talk about health like it’s a personal success, the problem is that we all too often then talk about illness like it’s a personal failure. So many people pride themselves on not having to take pharmaceuticals, or on getting by on yoga and their unrelenting positivity. But that puts those of us who kind of need pills and infusions and fancy CT machines in a shitty spot.

I may not have hiked the Grand Canyon but I looked HELLA athletic sitting on the edge.

So even if you think Big Pharma is evil and ruining America, please try to keep that to yourself when talking to someone with a serious illness. Believe me, we don’t want to be on all these pills. We don’t want to be dependent on so many things to get by. But we are, and it’s not something we’ve chosen. Being sick is not a failing on our part, and doing what we have to do to get through it is also not open to judgement. Believing we as humans don’t “need” pills for health is a viewpoint that all too often comes from a place of privilege. Just because you personally don’t need medication to make it through the day does not mean others don’t.

So I’m not saying we should stop celebrating the healthy–– marathon runners are crazy wonderful mutants and they deserve those medals and the little “26.2” bumper stickers to put on their Jeeps. But just make sure that when you are going after your own health goals, or talking to someone else about theirs, that we aren’t all the same. For a normal person a health goal might be training for a triathlon. For someone with a chronic disease, a health goal might be a walk around the block or, if you’re me, some incredibly low-key yoga. All options are valid and great, and one is not better than the other.

So practice a little empathy next time you’re around the water cooler talking diets or exercise regimens. We can’t all climb Everest, but hopefully we can all make ourselves feel successful in one way or another.

I Kind of Need You to Stop Asking if I'm "Better"

It’s rare, in this wacky journey that is my chronic-illness-having, that I openly express frustration. That’s mainly because I don’t think it’s all that productive, and I have had productivity beaten into me for all of my honors student life. I’d much rather spend my time talking and commiserating with other cool, chronically ill people, or educating friends and family on what it’s like to have a sickness that isn’t going away. But some days, the frustrated part wins. It wins hard.

The frustrated part comes out when my steroids are giving me insomnia, and I only slept three hours a night this week. The frustrated part comes out when my hair starts falling out every time I touch it. The frustrated part comes out when I realize my meds have given me a weird hand tremor and suddenly I feel way more like someone’s great aunt than like a 24 year-old.

But socially, the frustrated part comes out when someone asks the question I’m constantly dreading: are you feeling better?

The reason I dread this question so actively is because there are no answers to it that will make the people in my life happy–– which is something I desperately want to do. I would love to tell you that yes, in fact, I have miraculously come out of this flare and it will probably never happen again and, as it turns out, I am healthy as a horse. Turns out, though, that would be as honest as telling you that I just met Beyonce and she asked me to model her new athleisure line. Which is to say it’s a big old lie, or just a dream I had once.

I’m not a total pessimist. Some days I am feeling better! And in the moment you ask, I just might be. But the problem is, I’m living in a really long flare. And when this flare ends, I’m not sure how long I’ll have until my health turns on me again. That’s the nature of chronic illness: unpredictability. I have good days and bad days. Honestly, it changes down to the minute. Last week I called my mom in the morning to tell her I was feeling better than I had in weeks and I was ready to take life on–– and by 6 PM, I was in so much abdominal pain I was crying on my bedroom floor, popping Norco like it was a pill in Ibiza. (Am I using that pop culture reference right? I haven’t been out in a while.)

So when you ask if I’m feeling better, I feel obligated to tell you yes, because it’s understood that it’s what you want to hear. If you have a chronically ill person in your life, I’m not saying you should assume they feel like shit all the time and not ask at all. But there are ways to talk about illness that come off as genuinely curious and helpful that don’t make the person in question feel bad for not feeling better. Great things to say include “Hey, just checking in to see how you’re feeling. Thinking about you,” or “Can I come over and watch Unbreakable Kimmy Schmidt with you until we both melt into the couch cushions?” Showing you care and are trying to get it will go a million and one miles to getting someone to open up to you about how they really feel–– which might not be better, but will be important to hear.

Love, Butterflies, and Ginger Ale.

There are certain things in life you don’t appreciate fully when you’re young. Like taking naps, or having a spring break. Or your relationship with your grandparents.

I was very close to my Gramma as a little kid–– she babysat us often, and I remember doing puzzles with her, or taking the bus to the mall (she never, ever drove), or watching soaps in her living room. I remember playing rummy with cards that had baby zoo animals on them, and that she always had snacks we liked at her apartment. I remember that she had a popcorn ceiling–– something I didn’t have a name for until many years later, but that I always just associated with Gramma’s house.

She liked butterflies, and anything made of pewter, and reading, and she really loved Taco Bell, which in retrospect is hilarious for its incongruity. And she was sick, pretty much always. Not in the alarming way most people’s grandparents are sick, where it signifies that death is coming–– the chronic kind, where most of my childhood was spent in the back of my mom’s van, chatting with her while we drove her to doctor’s appointments.

I was young when she developed dementia, and while she technically lived well into my college years, all of my viscerally happy memories of her are squeezed into my childhood. I was diagnosed with Crohn’s disease when I was 17, long after her mind was already fairly out of sorts. And now, at 24, when a flare has taken me into the territory of truly, chronically sick person, I find myself missing the relationship we could have had now that I am an adult.

When you’re sick, you seek out people who might best understand. It’s not anyone’s fault if they can’t understand–– in fact, it’s great news for your loved ones if they can’t fully understand. It means they’re healthy, which is all I want for the people in my life. But sometimes, when symptoms are bad and you need a commiserating ear, another chronically ill person is the best possible option. Especially when that person is family.

I know if my Gramma were around, we could sit around and watch TV, and I wouldn’t feel bad at all bitching to her about how my steroid taper is making my hips hurt so bad that I can’t sleep. She would probably tell me about her own joint pain, and messed up sleep schedule, and how getting from point A to point B leaves her winded. We would probably make a joke of it and drink some ginger ale and then she’d force me to take home a stuffed animal she had in her apartment.

But even though she’s not around, I feel like I can learn about living with sickness from her even in retrospect. While she definitely didn’t live life mistake-free, she did a lot of things I can take away for myself. She threw her energy into loving her grandkids. She made us feel special when I’m sure she wasn’t feeling that way herself. She read a lot, and tried to keep her mind up even when it was fighting against her–– the nurses in her assisted living facility had to repeatedly clean out her room because she was hoarding books, a fact about her last years that I love a lot.

So on days like today–– her birthday–– I will get my own struggles together and take away the things she would have wanted me to. And I will also drink a ginger ale in her honor.

TBH

It is 6:08 PM on a Friday night. In summer. In the third largest city in America.

I am sitting on my couch, listening to a relaxation playlist on Spotify while my cat kneads my stomach fat.

The excitement of my night will likely be what marinade I choose for the fresh salmon I bought on my way home from work, and what movie I choose on Netflix.

Such has been an accurate description of almost every Friday night I’ve had for the last 5 months.

The most exciting thing I did this weekend was read in the park

Sometimes, this is fine. Sometimes I relish in the slow and hazy schedule of not being able to have a real schedule. I tell myself that I am super zen about the whole thing and that I have accepted my current lot in life. That I’m cool with spending age 24, the so-called “prime of my life,” in a health-induced purgatory because “it is what it is.” Sometimes I mean it.

Sometimes, this is really not fine. This week, I had a good day. A day where for most of it, I pretty much forgot I was sick at all. I went grocery shopping, did some cooking, got my nails done, and went to a wonderful dinner with a group of my closest friends. I ate great food on a patio in the warm weather and told stories and laughed and read our horoscopes. I actually found myself thinking, as I walked home, “maybe I’m fine. Maybe this sickness is going away, and I’m being overly-cautious by passing on social plans for fear of making myself worse.”

The next day was one of the worst symptom days I’ve had in a long time. It felt personal–– like a jab from the universe, saying “you think you’re normal? You think you can do all the things a healthy person can do and not pay for it? You can’t. In case you’d forgotten.”

That night, I laid in bed trying and failing at sleep. I was under the assault of a bone-crushing fatigue that made it impossible to do anything but half-way watch Law & Order reruns and stare at my cat until he got unnerved and turned around.

Tuesday night, me being a normal human at dinner with friends

Sometimes, I have a wise thing to say. A piece of advice. Something I’ve learned from my illness. Something being sick has made me more aware of that I’m thankful for.

Other nights, like that one, or tonight, I don’t. I’m just mad, and sad, and sick. Usually I think I’m making my illness more palatable for the universe by adding a happy spin on the end. “My joints hurt so bad I can’t think–– but it’s fine, I’m really getting to catch up on my reading!” I rarely leave it at “Hey–– I feel like a pile of hot garbage today. That is all.” But I figure sometimes, it’s more honest to leave it at that. And if I truly want people to have awareness of what it’s like to live with a chronic illness, I should be honest, right? Sometimes you have a day that doesn’t end with a bright shiny spin of positivity, and that’s okay, too. Your life is not a PR angle, it’s just your life.

So in the spirit of honesty and not sugarcoating: Hey–– I feel like a pile of hot garbage today. That is all.

I Do Not Have As Many Hours in a Day as Beyonce.

Between #GirlBosses and side hustles and everything else Instagram and Khloe Kardashian is always telling us, it’s pretty clear that productivity is important nowadays.

And generally I think that is great! Encouraging people to do more and be more sounds like nothing but a good thing, right? Except it’s possible that it’s trapping us. Because when you place all your self worth in your productivity rather than your personality, or just your own human goodness, how do we live as people outside of our accomplishments?

Sure, you “have as many hours in a day as Beyonce.” But Beyonce has a trainer, and a team of nannies, and stylists who make her look awesome. Do not judge your personal value by your ability to keep up with Beyonce, please and thank you. You will go insane and spend a lot of money on bodysuits. But more importantly, maybe don’t judge your personal value by your ability to keep up with anyone. Whether it’s a co-worker or a sibling or a mommy blogger whose handmade cakes make you feel subpar, try not to sit around wondering why you can’t get as much done as them, or have their level of success. Everyone’s lives always seem really sunshiney on the outside, but it’s possible that on the inside, that mommy blogger is struggling to keep up just like you. At the very least, her kitchen is probably covered in organic flour.

I think I'm going to start measuring my productivity in delicious teas consumed, books read, and days spent in the park.

So what if we all just cut each other a break? What if we stopped glorifying the hustle? What if we instead started glorifying things like taking care of yourself, writing your sister a letter to make her smile, re-reading your favorite Harry Potter book in the sunshine, or just making it through the day? What if we placed value on the things that made us happy, rather than the things that made us appear outwardly valuable?

I’m guilty of obsessing over productivity. I’ve always liked a list, or something exciting to put on my resume, or just feeling at the end of the day like maybe I somehow was a little closer to my best Beyonce-like life. But being ill has put a lot into perspective, including what a true trap the rat race for productivity can become if you let it take over. I’m not saying we should all lay around and do whatever we want all the time–– the world would stop working and no one would be staffing Burger King to make me Mac and Cheetos. But what I am saying is not to beat yourself up if tonight, all you want to do is drink a glass of wine and watch Veep. The “hustle” will still be there in the morning.

And putting the onus of life on productivity is a dangerous mental trap for the chronically ill. I know that I can’t “do it all,” and that’s okay with me, but when I see people pushing for us all to constantly have some exciting new project or business plan, it’s exhausting. Some days it really is okay if all you did was get out of bed. This is true for everyone, but especially true for those with mental and physical illnesses. Try not to beat yourself up if your disease means that you aren’t “on track” with others. I try to set smaller hurdles of productivity that feel more realistic than taking on the world or getting a book published by next year–– things like meditating (almost) every day, cooking for myself, or organizing my bills.

It’s also important to remember that often, rest is productive. If your body is struggling, ignoring it in favor of powering on will burn you out and leave you in worse shape than before. As hard as it is to feel limited by a disease, it’s even harder to deal with a flare after ignoring signals from your body to slow down. So maybe redefine your notion of productivity: restful activities like coloring, watching a movie that makes you smile, or even taking a nap can be incredibly productive for someone trying to keep their health in check.

I guess what I’m trying to say is that human worth is not measured in productivity–– or at least, it shouldn’t be. It should be measured in things like friendship, and days where you felt genuinely content. It should be measured in how you make people feel, not just checking off boxes of what you think you’re supposed to accomplish. Once you get a team of nannies and assistants and personal shoppers, then you can redefine your productivity to include building an artisanal cheese empire.