In the past hours of the past day, I’ve been trying to think of how to say what I want to say. I’ve been trying to steal some beautiful, complex and truthful meaning from the air and bottle it into small black words on a white page. It’s hard. The challenge is figuring out how to take all of this feeling, which is such an abstract “thing,” and mold it like pink putty into a sculpture of something real. There are words stuck to back of my tongue. I can’t swallow them down the back of my throat with a giant gulp of crisply cool water and let them burn up in the stomach acid inside me. They’re so stuck that I can’t even scrape the back of my throat and spit them out either. I can’t cough them up like that green mucus that always follows a visit from the dreaded common cold. It’s a feeling difficult to describe. It’s not the heavy, dull lump that forces small streams of sorrow flooding from our eyes, clogs our voices and chokes out the words. It’s not the tingle of electric excitement that tickles our spines and spews sentences from us like lava from a volcano. I can’t ignore it or push it to the back of my mind. It’s this urge, these thoughts, and these feelings that are just stuck. I’m fidgeting with these words like that they’re that popcorn kernel that gets stuck in between your teeth that you spend half the movie trying to push out with your tongue.
The other struggle of my dilemma is where to say what I’m trying to say. Should I just whisper it to a stranger in passing and let it fade away? Should I post in 140 characters or less on Twitter? Should these feelings and thoughts even be words? Maybe an image would be better. Then, I could place some superficial filter over it, and everyone would like it. I could go through all the steps of making a film about it. I could write a script, not too long and not too short, rich with vivid, lively characters who are perfectly representative of the human condition. I could hold hours of auditions in search of the best-undiscovered talent and cast the roles with the greatest performers the world has ever seen. I could hire an editor to cut the fat and make it clear. I could submit it to Sundance and screen it in front of the top film critics. It could open to universal acclaim, and I could feel the warm tears of joy rush down my face. I could walk onto a black stage lit by the glow of the cinematic screen and stand in the spotlight. I could deliver the most moving, inspirational acceptance speech in front of a roaring crowd, and still, maybe no one would hear it.
Could is such a powerful word. It holds vast possibility deep and blues like an ocean sea. They say you’ll never know if you never try, but not knowing is so comforting because anything could happen. Could exists before failure, before things go wrong before things grow old and die. Could is stuck in time like the popcorn kernel between my teeth. The problem is if you live in the world of could, then you become stuck as well. You never fail, but you never try, and nothing ever changes. You never grow, you never learn, and never change. Writing these words feels like that. It feels like I’m stuck with these feelings in the world of could. I’m stuck with my words, and I’m cut off from reality. I’m looking through the glass at the world as it passes around me. I should be doing other things like replying to an email, working on some assignment, or I could be chasing some far off dream. Best of all, I could be sleeping. That’s the problem, or I guess it could be the problem if I weren’t trying to break through. I’m typing away on my laptop and with each word chipping away at the shatterproof glass keeping us separated. In the end, I’ll creep out of could through the cracks.
Where are my words even going anymore? I’m sure you weren’t expecting this when you clicked this link and decided to read it. Haven’t we all just decided that reading headlines is enough? Were you expecting some to read the history of the word word? Were you expecting some motivational life-coaching article? Maybe this article was supposed to change your life? Today was going to be the day that everything changed and to think it all started with a click on some dumb Internet article. Maybe you expected nothing at all? The truth is I just enjoy procrastination and playing with words. I had to break out of could and fall of the ledge of the known in the valley of the unknown. I have to try to say what I’m trying to say.
Two years ago, I was sucked into the world of could when I was diagnosed with Ulcerative Colitis. In the moment of my diagnosis, it seemed that everything that would be me became what could be me. All the sudden, I was the sick kid, and I didn’t know if I could do what I thought I would do. It was easy to let could fill my mind and consume me. Focusing on could quickly spiral out of control. Could I still be normal? Could I still go to school? CouldI die? You get the point. I’m not going to lie and pretend could still doesn’t something creep into my mind. Getting diagnosed with a chronic disease is unfair, painful, infuriating, traumatic, terrifying, shitty, and more. In the beginning, it felt like life was handing me that world’s worst bowl of feelings soup. Except even if I wanted to, I couldn’t even eat it because the noodles weren’t cutely shaped like letters of the alphabet, instead they were shaped like deadly spikes of despair. Oh yeah, and they weren’t even gluten-free so one taste would make my body hate me for the rest of the night.
There are times when I’ve wanted to cut out my colon and be done with this disease. There are times when I want to rip my colon out and grind it into a pulp of nothingness as punishment for making me feel so awful. There have been times when I’ve tried to punch my pain in the face. It would be so satisfying to feel my knuckles collide with pain’s smoky demotic face, but my hand always slides through his nauseating vapors. Hatred and anger at anything, whether a crooked villain or the cutest puppy, lead nowhere but only to more hate and anger. The same thing goes for abstract things like pain and life. But damn does it feel good to be angry at life’s injustice and pain’s cruelty. For a long time, I rolled and relished in my anger and pain like a pig in mud, but that’s the trouble. It felt good until I looked at myself and saw that I was covered in a muddy mixture of slime, sadness, and probably some shit.
It’s hard to realize that you’re bleeding out and fading away. It’s scary to realize you’re losing yourself physically and personally. I’ve watched myself throw up five times in a day. I’ve watched myself stop eating, and I’ve watched myself bleed. I’ve lost more than 30 pounds and seen myself become skin and bones. Maybe just skin, because the side effects of some medications I take make my face puff up, and give me moon face which is the sweetest name for an awful symptom. Plus, some medications “may increase the risk of osteoporosis” to quote these pill bottles I read.
Eventually, I reached a point where I got tired of losing myself. At this point, I had to make a decision. I could keep living in denial and in could’s world or I c̶o̶u̶l̶d̶ would need to change. Change is difficult. It meant giving up things I loved like coffee and fried food. It meant swallowing bitter pills that made me gag. It meant doing things I hated and things that I feared. Before my diagnosis, I was mortified of needles. Ulcerative Colitis quickly burnt that phobia out of me. In fact, my old roommate and I like to joke that I love needles. Now, I get IV infusions every other month, and I do it without even getting a big-boy lollipop.
I started to value my time and take advantage of every second. The truth is we’re all dying a little more with every second that passes, but that doesn’t mean that every second that passes can’t be the greatest second of our lives. In fact, this was the greatest second of my short life so far. For me, the key was seeing the important things and not worrying about the insignificant things. Things are going to go wrong, but that’s okay because things are also going to go right.
Today, I take joy both the bad and the good that comes with my disease. Without the pain, I wouldn’t know really how amazing health can feel. Without the frustrations, I wouldn’t know the triumphs. Now, I know I can’t have the joy without the sadness, and I accept both of them. With that in mind, I started to see who I wanted to be in my life. Today, I choose to take the scenic route even though it’s an extra five minutes back to my house. I sing at the top of my lungs like a banshee with all the windows down in the middle of rush-hour traffic because I can. I live to enjoy life and to make others happy because that’s what makes me happy.
I started reaching out to my community and doing what I loved. I realized that I didn’t have to be alone in my struggle, that I could share my story, and that I wasn’t ever alone. I’ve met the most thoughtful, caring, and inspirational people. They motivate me every day to do better and to be better. To do better to others whether that means simply holding a door or speeding hours volunteering at an animal shelter. To be better to myself by accepting my disease, but not letting it define who I am. I don’t regret my diagnosis anymore, because I know I am stronger than before. It has shown me I can do anything. Sometimes that means jumping off a mountain to hang glide, and sometimes it means covering myself in toilet paper for an awareness photo shoot.
Over the past two years, I’ve learned and grown so much. I’ve done things I never thought I would do. For once, I can honestly say I’m ready for whatever could happen in the future because it might rock or it might hurt, but I know it will be fun. New beginnings bring new opportunities for me to write a new chapter in my story and I can’t wait to turn the page. This year, I’m running my first half-marathon. I know my body will hate me, but with every step in those 13.1 miles, I’ll know I’m punching my pain in the face. I’ll know I’m fighting for everyone who fights in silence day in and day out. When I cross the finish line, I’ll know I’m crossing through all the coulds that have held me back.
I still don’t know what these words are trying to say. Recently, my story has gotten a lot of attention. Anytime anyone calls me an inspiration, it feels surreal because I remember the scared kid I was and that I could have stayed. It feels undeserved because I feel like I have so much more to give. It’s humbling because I hope it will inspire others to make a difference, to seize this life, and to fight. So I guess what these words are trying to say, if you’ve read this far, is thank you. Thank you for caring, for fighting this battle with me, and for supporting me. I would never have made this far without the help of so many others. I’ll see you at the finish line.
Note: Article originally published in The Coffeelicious on Medium in September 2017.