Inhale, Exhale

        Somehow, Monday morning found me again. My alarm went off, I rolled on my back and contemplated hitting the snooze button, but instead jumped out of my bed (between the memory foam and the bed risers, I have to jump out since I can’t touch the ground otherwise...) and started Monday. Tomorrow it will be a month since my surgery, 4 weeks of insanity between the slice n’ dice and my current state of affairs. 

My plan for today was to get back to yoga. I always find recovery difficult because you’re usually sore, if not in pain, and are largely unable to move around a whole lot. But I miss movement and feeling at peace with my body, so this morning was yoga time.

Last week had been my first week back to classes, and of course BU has a massive campus that I am traipsing around (thank goodness for the subway). It’s great to be back, I missed my friends and my classes, but I’m also huffing and puffing a bit as I trek to class and try to get through my day. I nevertheless would find myself, sometimes at 5 PM, already in my PJs camped out in my room watching ‘Lost’ or some version of ‘Criminal Minds’ on my computer. I’m admittedly exhausted, but I know I’ll win my stamina back... eventually.

I’ve said time and time again that I’m terrible at living in the ‘right here, right now’ moment. I’m so used to being five steps ahead (i.e. I have my grad schools picked out, I know the fellowship I want to have in 8 years) that it’s difficult for me to put on blinders and force myself just to deal with the everyday. I can’t be living waiting for an obstruction or a flare, if it happens, it will happen, and getting worked up about it now won’t stop or slow it down. 

Bottom line: I have hope. I am hopeful that I’ll be in classes versus the hospital this semester, I have hope that I’ll get back to running shortly, I have hope that things will be okay. I have hope because I have to, I have hope because it’s powerful.

I said this before, so I’ll quote myself, “Take a deep breath and get excited - you have the whole world is waiting for you”. 

- Jennie

Guest Post: Taylor's Story #4

Sometimes I feel like I am stumbling through my life. Unsure of where I’ve been and what it means, unsure of where I am, and unsure of where I am going – just stumbling from day to day. And for a while the idea of stumbling scared me. I am the girl with a plan. I own an annoyingly organized colour coordinated wall calendar that goes perfectly with my annoyingly organized colour coordinated day planner – I am not the girl who stumbles and falls. Or am I? 

I can with no doubt blame my obsessive need to plan on IBD – when my body started to spin out of control, I compensated by trying to tightly control my life. Within the last couple of months, I have been trying to live more spontaneously. Trying to let go of my obsessive need for my colour coordinated day planner and relaxing my mind that always runs a mile a minute. I can’t lie to you all and tell you I have ditched my constant need to organize, clean, and plan but I have tried to open my eyes and go with the flow. I’ve loosened my grip on the reins of my life and have taken the time to enjoy the little things we often forget about in the blur of everyday and this has made me profoundly content. 

So right now in this moment, I’ll say this: don’t worry if you’re stumbling because tripping over your feet is inevitable and controlling the fall is difficult. But while you stumble take the time to enjoy how beautiful life around you truly is. Even in the most difficult of times, the simple things can bring us the most joy. So appreciate the moments that bring a smile to your face, whether it’s finding a pull through spot in a packed parking lot, watching a baby giggle in their sleep, laughing till you cry, crying till you laugh, falling in love, finding your favorite movie randomly on TV, or enjoying the cool refreshing flip side of your pillow at 2am.

These, and many other small moments in time have the ability to scrunch your cheeks up in the most inviting and pleasant way humanly possible.

Life is tough, but it can be beautiful. So, even if your feet are planted securely on the ground, or you are like me and still stumbling about, remember to keep your head up, your eyes open and try and always find a reason to smile.


- Taylor

Reality Check

Sooner or later, reality has to sink in.

Being on holiday break and recovering from surgery was like being checked into the glass (I never played hockey, but it always looked painful) - by the time my head stopped spinning, I was being thrown back into the game. Just as I was on the up and up of recovery and deeply engrossed in rewatching favorite TV shows (hello LOST, I missed you), I was stuffing my things back in my purple duffel and boarded a plane back to Boston. 

I’ll admit it, I’m nervous. Not for classes or anything academic, but for any hospitalizations/medical challenges on the horizon, fearful that I’m going to sink into the medical world like an Italian cruise ship. Don’t get me wrong, I am hopeful, I am determined, I am all of these things, and still I am reluctant that I’ll be as healthy as my college peers.

In talking with a friend recently, we were talking about the “rushing to live” chronic illness syndrome. Never heard of that? That’s because I just made up the name. But think about it - you’ve probably felt this yourself or seen it in someone else, nevertheless there is a sense of urgency when you’re feeling well to live as much as you can in the time that you have. Many of us have jobs and volunteer positions and do tons of things. We are hungry to live. We are desperate to be our age and do everything we want. And so, when we’re healthy enough, we ‘rush to live’ to cram as much as we can in. We’re always looking over our shoulders to see what’s coming on the medical front, waiting for something to bite us in the bottom. 

Reality can suck. In the harsh light of day, being sick can feel like a prison sentence. But no one said that life is simple, that’s why we fight, that’s why we push forward, that’s why we rush to live - because we know that we can and that we will. As long as we move forward - even if the wind is blowing us backward - that’s when we can make our dreams a reality. 

- Jennie

Bruised

For Christmas, I got a bruise.

I spent the afternoon riding along the Florida highway, bumping up against the window, and lamely offering up my veins for IVs and bloodwork. In other words, I spent Christmas going to the hospital with an obstruction. And while the holiday holds little whatever for me since I celebrate Hanukkah, the chill of the hospital air conditioning was not something I had missed enough to appreciate it, and it became the beginning of my two week stay.

At first, my arm was swollen from an arterial stick, but slowly it turned into a rotten bruise on the outside of my elbow. Granted, I knew none of this, only that it throbbed and I didn’t understand why. It wasn’t until I was standing in the mirror, post-shower, 2 weeks later that I gave myself a look of disgust and bemusement at the purple and red bruise clamped on my arm. 

In more ways than one, and totally metaphorically, I feel like I’ve been put in a blender and shaken up and emerged fully bruised. If I - or the innocent people walking by me - didn’t know that I’d spent my time in the hospital recently, it would seem as though I was the latest victim in my latest TV obsession (‘Criminal Minds’) and that my bruises may be the result of something else entirely. But in truth, we all know they’re only from needles and blood thinners and incision sites etching up my abdomen.

And if I’m sounding bleak and exhausted and frustrated, it’s likely because I’m feeling all of those things at the current moment. There may be silver linings to every cloud, but then again sometimes it’s just a rain cloud and all it does it get you soaking wet.

In the hospital, I had refused to don the Johnny shirt that had been left on my bed. Up until the morning of my surgery when I had no other choice, I had lounged and slept in my own clothes, trying to remain my own self. But January 3rd rolled around against all odds, and I slipped into the Johnny and into my survival mode, trying to forget about what was going to happen in the coming hours and the pain I was simply waiting around for.

I cried, wiped at my face aimlessly, held on to my teddy bear, said good-bye to my family, and felt the push of the anesthetic as the ceiling began to spin and white noise build up in my ears. Then a second, a solid moment in time gone, and I was rolling around in my bed crying out for pain medication. I opened my eyes, saw the clock, and knew nothing good had come of it.

Only an hour or so had passed. If the surgery had gone as planned, it would have been a couple of hours. But I couldn’t attend to my broken heart and broken body at the same time, and tried to force myself to sleep. It was only my second surgery, but somehow the uneventfulness in the immediate aftermath frightened me. I wasn’t fixed, I was still a mystery.

In the time that’s passed in the last week, more helpful information has emerged and I fight to see the silver lining in my rain cloud of a holiday break. I still have to deal with the scars, the tiny x carved into my belly where a new stoma could have landed, the pain and my overwhelming inability to sleep. 

Then there’s the people that call on the phone to see how I am. And as much as I am truly grateful and appreciative of their concern and time, I feel as though I’ve become this crazy caricature of myself. I’m all for awareness and enlightenment, but when I become the local gossip of the ‘girl who’s always sick’, I’d rather crawl under my covers and not come out. I’m tired to reciting the same thing to each person that calls, tired of hearing my grandparents relay the same practiced script to their friends, tired of my medical life being as public as a celebrity’s twitter feed. Yes, I may be chronically ill, but that isn’t who I am and for once I’d prefer to talk about something other than my enigmatic bowels.

I have no great lesson to share or offer up, no polished moral to deliver. Only the bruises on my body tell the story I am sick of hearing, the purple splotches that will likely alarm the public and serve as reminders to the two weeks I lost to a hospital bed. 

Surgery hurts. IBD sucks. Bruises are tender - but they do heal. A bruised heart may take some more time than my sore arms and belly, but maybe if I hold it just gentle enough, I can hold the broken pieces together until I am strong enough to run forward with my life.

Bruised or not, broken or fixed, I am myself, and even if others forget that sometimes - I promise myself I never will.

Jennie