November 8

I live my life around stories. Writing them. Editing them. Promoting them. Reading them.

Stories strengthen us. They provide a means for escaping reality and a model for coping with reality. They center around conflict, an event or series of events that upend the characters’ world and test them in some way. Stories have morals. They have endings.

November 8th was a turning point in this country's story. This is a story that would be better kept as words on a page, yet we have no choice but to live it. Perhaps scariest of all is the fact that it’s difficult to find a moral in the events of that day. It's difficult to predict at all how this story will end, let alone envision any type of ending other than a grim one.

Now we're the players, and this is our test. Not only the empowerment of a man who is regression incarnate, a man who promotes inequality across all platforms, be they race, gender, sexuality, religion, or nationality. It’s also the ignorance, hatred, and fear that fuel his supporters and put him in power.

If we’re to find comfort in anything, I suppose it’s the fact that stories don’t start at the end. They start at the beginning and progress scene by scene, chapter by chapter. We must do our best not to become complacent in the chapters to come. We must be both characters and authors. We must do our best to influence this story as it unfolds.

I’ve always considered myself a writer. We must all be writers now. 

Chronic

I woke up early this morning. Dressed for success. Texted with coworkers who were apprehensive about coming into the office today, because of the explosion on Saturday that happened only an avenue away from our office. Our office, which is in a historic, iconic building. We were literally discussing the likelihood of being bombed. The world we live in.

But never mind that, because today was my day. My stomach hurt when I woke up, but never mind. I've been very stressed at work lately, and today that was going to change. I had big plans to slay the day. Knock out some assistant things in the morning. Edit this afternoon. After work, the book club I organized for my coworkers was going to have its first meeting. Then I was going to crash the end of my brother's band practice and attempt to play the drums, something I've always wanted to try.

At noon, I realized this day was not going to go according to plan.

I was on the floor in a private bathroom in my building. For an hour. "It's happening," I told my dad over the phone, struggling to speak because when my stomach gets like this and my body feels like it's suffocating because the air is too hot, too hot, it's difficult to say anything at all. "I can feel it coming. God."

And then I threw up. In the bathroom at work, in a bag on the car ride home, in a trashcan in my room.

This is what it is to have a chronic illness. You try so very, very hard to not let it control your life. And often (in my case), if you're lucky, you succeed. But there are days when no matter how much it infuriates you, your illness will win.

I wrote the below almost exactly a year ago today. It's not very well written. More a collection of thoughts and lists and ranting -- but I'm not going to rewrite it into something better. This is what it is to have a chronic illness. The things you write a year ago will still be true today. It will never go away.

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Sept. 14, 2015

I hate finger pricks. Every child does. The one bright spot is that you only have to endure them once a year. That's the deal. One prick, and then the tiny, evil needle and the creepy tube that sucks up your blood are out of your life.

At my eighth annual checkup, this was the plan. Get in, get out.

I remember the finger prick. I remember the look of concern that my pediatrician, who was also my mother's best friend, wore for the remainder of the visit. I remember everything felt very serious. I remember the recommendation that I go to the hospital for further testing. I remember my mom calling my dad on the drive over. I remember being confused.

The rest is a blur.

I was diagnosed with Crohn's Disease when I was eight years old. There, I said it. Which is significant, because I almost never do.

I wrote that line and then reread it. Over. And over. Every single time, I felt a pinch in my chest. A little stab of discomfort. Because it has been a part of my life for most of my life, and I am still not comfortable saying it. It is impossible for me to read that phrase and not react mentally and physically.

I hate the word disease. I hate it. I hate it. I could explain why. I could also tell you to try standing in front of a mirror and looking yourself in the eye and telling yourself that you have a disease, you are diseased, and I think that would probably tell you everything you need to know.

I grew up utterly confident in the belief that telling people would only lead to awkwardness and unhappiness. My brain has been telling me this for so long that it has just become a part of me. I don't want to make excuses for shortcomings. I don't want to be "the sick one." I don't want my illness to define me in other people's eyes. I don't want it to define me.

The thing about having an invisible, chronic illness is that, eventually, you get used to it. But sometimes someone will unintentionally remind you that you're different. That your normal is someone else's sick. And in those moments, it grates on you.

For me, when I am having what is called a flare-up (a period of very active disease), having a chronic illness means that my normal energy level is a healthy person's low.

It means that a friend will tell me we have to walk a few blocks to the subway entrance, and I ask her how many, and she tells me six, followed by a critical, "Is that too much for you?" And I say no, I was just curious, but really I am on the tail end of a one-hour period of keeping my face completely blank while feeling like my stomach is going to explode, it must explode, because it my intestines are inflamed and too full of trapped gas. And I am tired.

It means that one second I will feel fine and the next I'll feel the urge to go to the bathroom, and then it's if I don't get to a bathroom in 20 seconds, I will literally shit my pants.

It means that every time I step outside, it is a risk. Because where are the bathrooms?

It means that I get a lot of stomach aches.

It means I sometimes can't stand up straight because my stomach hurts too much. Someone may walk into my office and see me standing at my desk, shuffling some papers and smiling, when a moment before I was bent over in pain but righted myself when I heard them coming.

It means I'll be playing Heads Up with a few friends and have to retreat to my bedroom for a moment and lie down on the bed because my stomach is in agony.

It means that I become severely anemic. The normal hematocrit range for a woman is, according to google, 34.9% to 44.5%, and my doctor told me I was at 5% and he doesn't understand how I can say that I'm fine, how I'm not lying on the ground from exhaustion instead of going to work at normal hours every single day.

It means that I accept this news and tell my mom not to worry as I talk to her over the phone, only to have a panic attack at the end of the day because I think that my body is going to spontaneously fail.

It means that sometimes I don't want to eat.

It means that I have put off eating before, even when hungry, because I am afraid of the pain that I know will immediately follow and stay with me the rest of the day.

It means that I have a lot of gas. And no, it never stops being embarrassing.

It means that I have to sit across from an attractive Irish nurse and discuss my bathroom habits with him while trying not to die from mortification. Frequency. Consistency. Any blood or mucus?

It means that I want kids, but I am also afraid to have kids, because I am afraid of passing this on to them.

It means that I constantly feel guilty for costing my parents so much money. I cannot even fathom. And it doesn't matter how much they tell me that that's ridiculous, because even when I say that I agree, I will never stop thinking it.

It means that I spend a lot of time comforting the healthy people around me.

It means that I have friends who are afraid of needles, and I genuinely sympathize but also can't identify, because at this point I am almost immune.

It means that, during an overnight hospital visit at maybe nine or ten years old, I had nurses stab me thirteen times with needles, trying to find a vein, before my dad kicked them out at four in the morning and said that no one could bother me until I had had two hours of sleep.

It means that I spent a lot of time in hospitals.

It means that I have had surgeries. That I get colonoscopies, even though I'm not a middle-aged man. That a friend jokingly compares me to an old man one day, and her comment stays with me for days.

It means that, if I'm in excellent health, I can go six months without seeing a doctor.

It means that I have tried a lot of medicines. It means that throughout most of college, I had to give myself shots in my stomach once a month. It means that I requested a single room rather than a double during my study abroad experience because of my health and then pretended to everyone that it was luck. It was easy, really. I have gotten so damn good at lying.

It means that I make myself worse from stress. I literally make myself sick.

It means that many people who know me will be surprised to see me write this. It means that I will probably never post this.

It means that I will spend the weekend at the house of one of my best friends in the world, and I can sense her confusion, because she hasn't ever really seen me when I'm having a flare and she doesn't understand. She doesn't understand why I admit to her that going to a bathroom-less island for two hours is risky for me. So I revert to silence, because it's easier.

It means that I genuinely do not begrudge any healthy person his or her good health.

It means that, if I had the option of choosing who in my family had to have Crohn's, whether it was me or one of my parents or my brother, I would choose myself instantly every time. I have thought about this a lot. I'm not sure why.

It means that I am constantly aware that many people have it much, much worse, and I am grateful to only have what I have.

It means that I am not writing this to complain. I am not writing this to garner sympathy. I am writing this because I have kept it hidden for so long, and I'm not sure I want to anymore.

It means that I'm trying to convince myself it's okay to share.

I am trying to convince myself that it's okay.


-----

What would I add to this now, returning to it a year later?

I guess I would add how depressed I've felt the past few months, how I've struggled with the feeling that my body is trying to kill me. How I've scheduled my first ever therapy session because for weeks now I have felt that if I just stopped for 30 seconds to think, I would cry. Every time.

I would also add that on the first day of my Canada trip this summer, I was violently ill. My stomach was in agony. I vomited at least twelve times. I shivered uncontrollably. I faded in and out of consciousness. I can honestly say that I felt like I was going to die.

The next day, I climbed a mountain.

On Fear

Fear is a tricky beast.

Fear of the unknown. Fear of the undesirable known. Fear of not achieving your dreams. Fear of failure. Fear of a future you can't control. Fear of the dark.

Fear warps our perspective on things. It's like living in a fishbowl. Every threat around us seems magnified—the size of the giants looking in, the sound they make when they get close enough to tap on the glass and force their presence upon us. And we, we're each trapped in our own glass cages, powerless to escape the demons knocking on our door.

Fear is a powerful influence in our lives. In part, of course, because it’s instinctual. Fear keeps animals alive. In that sense, fear can be a good thing. It empowers us to make life-saving decisions. Run away. Hide until the predator's out of sight. But fear also limits us. It enables us to flee from pursuers but it prevents us from pursuing many things, often the things we want most.

I've felt a lot of fear lately. Fear that I won't accomplish my dreams. Fear that I'm spending too much time doing what I don’t want to be doing. Fear that our country, indeed our world, is headed in a bad direction. Fear of a government unwilling to act. Fear that my body won’t get its shit together. Fear of being alone.

People are always looking for ways to eliminate fear. Nonhuman animals obey their fear; humans regard it as a challenge that must be overcome.

Enter courage.

Whereas fear is a fairly universal feeling, courage manifests in a multitude of ways for different people. Its forms are infinite. It could mean voicing one's opinion in a crowded room or opening up to one particular person. Crossing a wobbly bridge or stepping into the ocean at high-tide. Starting a new job. Leaving a job. Facing a frightening procedure. Squashing a bug. Sampling a strange-looking food.

Often, we equate fearlessness with bravery. However, I believe that the braver ones aren't those who manage to eliminate fear, but rather those who feel their fear and act in spite of it. Alongside it.

Perhaps instead of trying to figure out how to get rid of fear, we should be thinking about how to work with it. Fear is not always bad. It's not always an obstacle. Fear is a tool. It lets us know when something important is on the line. It provides us with opportunity upon opportunity to prove ourselves. To be brave. Even if that bravery seems insignificant to outsiders, it feels amazing to those wielding it every time.

Without fear, we swim in circles with no change in the pattern. With fear, we have a challenge to swim out and meet.

And that, I'd say, is a gift.

New Beginnings

It's been almost a year and a half since I wrote my last blog post. Well, that's not entirely true. I've written a couple of posts since then. I just haven't been ready to share them.

Still, it's been a while, and now I find myself wondering how to pick it back up. There have been plenty of things I wanted to write about. But all of those things were things that I didn't want to post online. Generally, I'm not the kind of person who posts sad things, or angry things, or things that are too real. I post things that will make me - and in theory, others - smile or laugh.

So, time to restart. A new beginning.* Which, I think, I will make the subject of this post.

Picture an old-fashioned wooden caravan. It's painted your favorite colors. Fill it with the things you love. Let them peek through barred windows and press against the door. Maybe go crazy and add some gold trim. Hey, we all have to live a little on the wild side sometimes.

Now push it over a hill. It starts slow, just tipped off balance, over the edge. As it descends, it picks up speed until it's flying, flying down with no sign of stopping.

You want to bring it back to the top, but before you can drag it back up the hill, you have to stop it. Stop it and turn it around. You won't have immediate success. The cart will resist you; by now it's gathered a ton of momentum. It may hurt a little. But you have to start somewhere and work at it. That's what a new beginning does for you. Stops the current trajectory. Gives you a chance to change things, to work towards something better.

A couple of weeks ago, I turned twenty-four. A lot of people I know hate birthdays. They find them depressing, or irrelevant. They prefer to ignore them all-together. I am not one of those people. For me, birthdays are the best, and I want to explain why.

For one thing, it's an entire day in which I get to celebrate me. That sounds self-centered, but let me frame it another way. We spend a lot of time celebrating things outside of ourselves: religious holidays, friends' successes, the enactment of a progressive new law. How many times a year do we really just stop and celebrate... ourselves?

Celebrating yourself is so, so important. It's easy to get bogged down in the negatives. Hell, that's what I've done more frequently than I would like. (I'm looking at you, fourteen-month blog silence.) And sometimes, that's okay. It's okay to feel a bit shit. We all have our own pain and are entitled to feel it, an idea that merits an entirely separate post, maybe even two.

Recognizing the positives can help drag you out of the trenches. Birthdays are a nice, annual reminder to do so. Happy birthday. We're so glad you exist. You are actually pretty great.

The other reason I love birthdays is the opportunity they present to set new goals for myself. New year. New goals. New beginning. There's something very therapeutic in setting goals. Goals give you purpose. They are, if you think about it, little pockets of hope. Spots of light that color your future. If you have a goal, you have something that you want to achieve. Something that will make you happier. A better future to look forward to.

That's why beginnings are so important. Though they can be overwhelming, they're also inspiring.

So, here's to feeling inspired. To pushing the caravan through the weeds, through the mud, up the hill, even if it gets a little messy at times. Come at me, 24. I've got big plans for you.

*Is "new beginning" a redundant phrase?