Alright. I’d like to share something with you guys.
The past week I’ve heard from several people who are having a really difficult time right now in terms of their illnesses. I’ve wracked my brain for the right words to comfort them and their friends, but what I’ve come up with is that there really isn’t anything I can say to make someone feel completely better about their situation. The only thing I can think to do is to try and make them feel like they aren’t alone.
Since I’m an obsessive journaler I decided to do some digging to see if I could find any inspiring words I had written during the past year in the days leading up to and following my diagnosis. What I ended up finding instead was a very honest look at my illness and what I went through… and while I wouldn’t label it “inspiring” per say, I am hopeful that if I give a tiny chronicle of what I was feeling in the order I was feeling it, some of you who are currently in the crux of your suffering might identify with my words and feel a little comforted. Just a little less alone.
So here goes:
Dec 4 2013– It feels like my body is rotting from the inside out. I want to live my life! I want to run and jump and I hate that I’m being held back from adventures. But even as I am physically weakened, I can feel my spirit growing stronger.
Dec 24 2013- I got home from the hospital and slept a whole night through for the first time in three days. I dreamed of a huge house where all of my friends lived and a giant courtyard with flowers exploding out of it. I dreamed that I could press my legs together like a mermaid and swim in and out of the trees. I dreamed of tall, marshy grasses that we had to walk through to reach the ocean. And now I am awake and all the parts of me feel mismatched.
Jan 11 2014- I am worried that I am letting my life pass me by. I hate being sick and being forced to sit out on the sidelines. And now my friends are out and I am in, too scared to leave the comforts of my bedroom in case something were to go wrong.
Jan 15 2014- Can’t get sick if I don’t eat.
Jan 19 2014- When I found out about my treatment I got so scared, and Abby spent probably an hour and a half watching videos of the procedure online with me. Durbin checks in on me every few days, and Hope is always willing to reschedule a fun time to lay around and watch movies with me. Kristen’s never shied away from any of my problems. My parents are working tirelessly to set up appointments with different doctors. But it’s up to me to go the rest of the way. I have to get healthy so I can start working on my future.
Feb 5 2014- Here’s the lonely thing about it: they rally around you at first. That first night you spend in the hospital freaks everyone out. Gets their attention. They call, text, check up on you. But then your appointments become scheduled. There aren’t anymore ambulances, just silent car rides with worried parents. You don’t flinch when they get the needles out anymore. Friends stop calling to see how you are. And stop bringing flowers. And once sitting around with you gets dull they decide to go out instead. They go on hikes, and see shows, and go to parties. You’ll watch movies from your bed where protagonists will go on hikes and see shows and go to parties. You will smile for your mother and take your temperature every ten minutes. You will starve yourself for a day so they can stick a camera down your throat. Everyone will want to know the color of your urine. You will be too tired to go out- you will be called lazy. It’s okay to feel too sick to go out with your friends, but it’s not okay to go to bed early instead of doing your homework. Your friends will stay in with you. The guilt will be worse than the loneliness. You will call yourself blessed. You will comfort your mother. You will try not to cry when she calls you to chat, but you will. She will cry when you hang up. You will not be in a play. You will not be in a short film. You will watch a lot of short films, your peers will call you lazy. You will thank your friends for their prayers. You will learn to say “it’s okay,” a thousand different ways. You will drive home for an appointment. You will drive back for class. You will not get to eat. You will drive home for surgery. You will sleep through the weekend. You will drive back for class. You will do your homework early so you can sleep through your evening fever. You will tell your mom you are fine and then you will cry in the bath. You will call your friend in the middle of the night and ask for a story- anything, something happy just to get your mind off of all of this. He will make you laugh. You will will cry tears of joy for it. He will hang up and go back to his healthy life. And then you will be alone. Repeat.
Feb 8 2014- Getting diagnosed means everything to me. It would absolutely change my life. It could separate my before from my after. A diagnosis would define the course of my life, validate my pain, and prove once and for all that I am not the cause of my suffering, but the solution. The fighter.
Feb 11 2014- Yesterday I got up early and drove with my mom to the hospital. I met with a surgeon- we scheduled two surgeries for Valentines Day. Then I went a couple floors down and sat in a room while they diagnosed me. I thought I would cry, but I didn’t. I smiled. A lot. I sat on the examining table and made big choices about my future. It was raining outside. I watched the drops fall eleven stories to the ground. The whole thing was surprisingly quiet.
Feb 17 2014- One week since my diagnosis. Three days since my last surgery. Here are the things I didn’t expect: The daily drudgery of illness. It’s not always dramatic hospital visits and vials of your own blood- much more often it is the clutter of bottles as prescriptions pile up on your desk. There’s an explicit loneliness to it- your friends will send their sympathies and your mother will hold your hand but nobody else feels what you do. They can only try to understand. You never get tired of flowers. You think you might, but they never lose their meaning. You do get tired- tired of the routine, of bathing four times a day, of eating when you’re scheduled to, of doing homework when your head is pounding. The world says sorry and pretends to give you a break, but things keep piling up while you rest your head so you know you have to get up quickly before they bury you. The hardest is the restlessness- the need for movement when it is all your body can do to stay still. Your body gets tired but your spirit never does. It screams to you while you lie in bed, “Get up, get up! This is dull, I want to move, I want to live!”
March 21 2014- It takes strength to be happy happy. It takes strength to take care of my body when I live away from my parents. It takes strength to deal with this thing that no one else my age is stuck dealing with.
April 27- I can’t start getting sick again. How will I be able to be what everyone needs?
And that’s the last entry I wrote that included something about my Crohn’s. Ominous, right? But see, it has a happy ending. My meds kicked in and I got better- stronger every day. I didn’t think about it too often. I had other more exciting things on my mind.
Of course, there’s an unhappy ending, too, if you want to look at it that way. The pain comes around again. That’s the nature of Crohn’s- it’s cyclical. I’m lucky not to be in the midst of a flare up right now. Often times I forget just how lucky, and it takes a glance through my old journal to remind me. I guess the moral of the story is to remember that the pain is temporary and there’s an end in sight, even if the respite is only temporary, too.
If you are going through something really terrible right now try and remind yourself that it won’t be bad forever. Our whole lives are cyclical, if you think about it- you find and lose people, you are in love and you are heartbroken, you are sick and you are okay.
At first that can seem really unfair, but it’s not, you know? If every feeling is only temporary then I want to feel as much as I can. I want to keep being sad and keep being happy. I want to keep getting worse and keep getting better. Again and again and again.
And even if you’re stuck on the downswing right now, it’s worth it. Really! Write it down. Stay hopeful. Watch a lot of Netflix. Things are going to change soon, I promise. Don’t you want to know what’s next?