Blip

When I was leaving school for the summer last year, I distinctly remembering feeling more beautiful than I had ever. Not in some vain/external way, but as I looked in the mirror, I just felt whole and complete and like everything was right. And mostly, I feel that way all the time - I don’t blink at my ostomy, I expect it on my belly.

And for a long time - until last night - I thought that I was fighting a stigma. And that was heavy enough, let alone what I discovered last night. 

The scene goes as follows: I had just left my evening class, and was waiting for the subway when I heard my name and turned to see my professor from that class behind me. Of course we started talking and I asked him a question. It’s my creative writing class, and for my final submission, I’m writing a story about a girl with an ostomy (a story I’ve been wanting to write for a while). I asked if I should tell the class about what it is, to which he quickly said no, I countered that I didn’t want to spend time in the story explaining the medical technicalities. We boarded the subway, continuing to talk, and I could tell by his kind, albeit blank, stare that the poor man had no idea what I was talking about. “Do you know what an ostomy is?” I asked gently. He grinned, “No.” 

Ah, the weight of the world! We seemed to be tasked with educating and fighting a stigma. I explained it to him, quietly hoping that the bystanders on the subway might be listening and getting educated too, and there were certain keywords that got a visceral reaction out of him, i.e. ‘intestine’, ‘no colon’. I was happy to explain it, but felt deflated at his ignorance. 

Today the lull in understanding and insecurity deepened slightly. First, I was sitting in class next to a guy friend when my ostomy decided to sing a bit (aka make random, gurgling noises) and I could see his head swivel in my direction. Oh dear, I thought. He didn’t ask what it was, nor did I lend an explanation - suddenly unsure that ‘Oh, it’s just my ostomy’ would be a meaningless statement. Secondly, I was helping out with a group on campus and I really needed to empty my bag, I could feel it ballooning under my leggings. I was sure that others could tell and tried to hold my hands in front of myself, just in case. 

It was the same when I had Crohn’s. There were times when I didn’t need to tell those around me - when I was feeling well - and then times when I was sick and running to the bathroom fifty times a day when an explanation was needed. The line between knowing and ignorance, telling and silence, hope and despair sometimes seem blurry and unmarked.

At the end of the day - I don’t care what others think. I love my ostomy, I love my body, and I wouldn’t change it for the world. But I’m also 20 years old and in college and I fumble with the idea of how to tell a guy - or anyone for that matter - about my ostomy without being too detailed. I know it depends on who it is, what the context is, what our history is, etc and so forth, but still - the question bounces around in my mind. 

A blip is just a blip, a bag is just a bag, and life, well, all we can do is live it.

- Jennie

New Normal

“The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails” – William A. Ward

I’ve been thinking a lot about the idea of “new normal”. 

As humans we are creatures of habit. We like to wake up and know that we can rely on constants. Knowing certain places will be safe, specific people will be there, various routines will be performed, that our bodies will be vessels that help us rather than hinder us, and at the most basic level simply knowing that we can rely on things we’ve always known to be reliable. 

The reality is, is that the only constant that we can rely on is change, and the only thing that we can really expect is the unexpected. So if the normal that you have been accustomed to becomes interrupted and your life feels uprooted because everything you have come to know is unstable – try not to think of it as abnormal, try and think of it as new normal.

Having unpredictable bowels leaves you in periods of stability sometimes and instability others and this re-adjustment of new normal might just become a constant in your life. The day I was diagnosed, March 12th, was the start of a new normal for me. Finding out I had a disease I would carry with me throughout the entirety of my life was a scary thing. Questions raced through my mind: Would I be able to finish university? Would I be able to be a normal university student? Would I enjoy food again? Would I be able to have a normal relationship? Would I be able to live my everyday life happily? Would I still be able to play sports? Would I be able to travel? Would I be able to enjoy social engagements again? These and about a million other questions bombarded my brain. I can tell you the answer to all of these questions is yes. I have been and will continue to be able to do all of those things. The way I go about it might not be considered normal to the people around me, but it has become normal to me – a new normal.

So re-evaluate the winds and adjust the sails if need be. The changes that have come about don’t need to disorient the direction in which you were headed. You might have to endure a longer journey or a more trying trail to get where you’re going, but you’ll still get there. 

Change is tough, but you are too.


- Taylor

So Far So Good

It seems nearly impossible to me that it’s virtually the end of February. Give me a couple of weeks and I’ll be headed home for spring break, and then a week after that, I’ll be off to Peru. And all of this makes me think, so far so good.

I hesitate to compare the present with the past - but the comparison begs to be made. Last semester was a matter of surviving, amongst constant obstructions and weekly hospital visits. Being pulled from class to brood in a hospital bed was disconcerting: I would wake up unsure if I was in my dorm room or a hospital room, I was endlessly frustrated and yearned to simply sit in a classroom and take notes. It doesn’t seem like the most glamorous of dreams, but perhaps all of my dreams are mostly ordinary things. 

I take a certain pleasure and excitement as I head to class and learn. It is too overwhelming to recognize that I haven’t missed a class this semester, save for coming back a week late after my surgery. I’ve been able to see my friends, even make friends, go for runs, go to the gym, and eat (and enjoy it!). What a difference a semester can make.

But before I take all of the credit, let me remind myself that I wouldn’t be here without my parents, my friends, or the doctors and surgeons who listened to me and stood by my side. For me, it underlines the importance of fighting for being heard - even if it’s an ongoing battle - and believing in myself and what my body was feeling. 

It’s days like these when everything seems possible, when the road stretched before me looks so exciting that I cannot wait to run down it. I can only hope for the same for everyone else.

Jennie

Listen Up!

Do you ever feel like you’re in a sound-proof screaming at the top of your lungs?

Over the years, I’ve often felt this way in medical settings. Be it at an appointment, or in a hospital bed, sometimes it feels like no one is listening to me. When I’m stuck in the hospital and woken up at some terribly early hour only to be judged and pigeonholed by a team of doctors who likely don’t know my middle name or anything worthy about me, I shut up and sit there and ignore them.

Now, that’s all fine and dandy, except for the fact that they’re the ones holding the prescription pads and the ones ordering the tests - in other words, the ones who are in immediate charge of my medical future. Doctors preach being involved in your care, writing things down, making your own decision, and yet most doctors I’ve encountered maintain their preconceived notion of me, no matter how much I fight against it and demand to be my own person. 

At the end of the day, I am responsible for my health. I am responsible for being heard, even if I have to run down the hall screaming and be chased by security (this hasn’t happened but I wouldn’t put it past myself). The other day I visited a good friend in the hospital. It was bizarre walking the halls as a visitor and not a patient, an experience I haven’t had in months upon months, and make my way to her room amidst the crowd of doctors and nurses. Her Mom and her recounted the frustrating stories of one doctor saying one thing and another saying something different, of feeling up to their eyeballs in opinions. How is someone possibly supposed to make a sound decision? We are often given selective information, like breadcrumbs down a certain path, and rarely have the amount of time and support to make the decision that best coincides with our bodies and our beliefs. 

Sometimes, in the middle of the night, or right before I swing myself from my bed in the morning, I unearth a medical memory. Often they’re painful ones, ones where I butted heads with doctors and had to fight - sometimes when I won, and sometimes when I suffered a loss. But at the end of the day, I made it through, scars and all, mostly in one piece. 

There are certain things I know about my life - I will always love Grey’s Anatomy (hello Patrick Dempsey), bananas will always be a staple in my diet, I will always lip-sync to music as I run (attractive, yes), and I will never stop speaking up for myself. 

You have a voice. I have a voice. And together, we are loud and we are powerful and we will be heard.

Jennie

Rock Bottom

“Rock bottom became the solid foundation on which I rebuilt my life” – J.K. Rowling

Rock bottom – I think everybody has been there, and I am not talking about the city where Spongebob-Squareapants lives; I am talking about the breaking point, where physically and emotionally you are shattered. You feel like prey being hunted on by a vicious black cloud that always seems to have higher ground; and every corner you turn during this hunt seems to hide another scary monster that is waiting to jump out at you when you are most vulnerable. 

I have hit different levels of rock bottom along the way and each one for me still stands out vividly in my mind. The first face to face encounter I had with this low of lows stands out more prominently. It was the first moment when my sunny disposition, positive attitude, and keen ability to regulate my emotions could not mask the pain I was feeling. It was a Saturday night and about two days before my very first hospitalization. I sat hunched over sobbing in agony, with my hands wrapped tightly around my abdomen perched on the porcelain throne I had become all too familiar with; every bone in my skeleton of a body ached as I vomited into the garbage can. I had been in this position before and I knew it wasn’t good. In the midst of my very own Groundhog Day episode the bathroom door swung open and I looked up to find my mom and good friend staring at me with deep concern in their faces and tension in their bodies, as they made sure I was okay. I wasn’t okay, I was at rock bottom. I felt broken and unfixable. I had lost control of my body physically, lost control of myself emotionally and was devastated when I saw how much pain I was causing the people I loved as they were forced to watch me spiral downwards uncontrollably. I saw absolutely no silver lining in the hurricane storm hovering over me, and my heart was breaking as the image of health, and youth drifted farther and farther out of my reach.

There I sat on the cold, hard surface of rock bottom.

I can still remember how easily the tears flowed during this time, and how I couldn’t shake the dull ache in the pit of my stomach. These weren’t tears and belly aches caused by the pain of IBD, but rather an ache caused by the belief that it wasn’t going to get better; that this was going to be my life. As much as doubt flooded through my mind in that moment of defeat, over time things began to get better – more stable. 

I’ll leave you with a quote from the movie Blow that I believe to sum up the highs and lows of pain and happiness, it goes like such, “when you're up, it's never as good as it seems, and when you're down, you never think you'll be up again” – but life’s a cycle and these ups and downs are inevitable. This doesn’t make it easier each time you feel the tears start to flow and that dull ache in your stomach begin, but what it does is give you is comfort that eventually you will be up again. It might not be tomorrow, or the next day and you might have to fight for it – but it will happen, and when it does I promise 
you’ll be stronger because of it.


- Taylor

Reality vs. Perception

Recently I’ve seen lots of post-surgery scenes on TV shows. The scene goes as follows: the family sits by the bed, teary eyed, the patient slows stirs, then wakes up and smiles and life goes on.

Now wait a moment, is it just me or is this a total lie? For myself, even for colonoscopies (when I had a colon) that I had under general, I wake up violently. According to some article I read years ago, younger people tend to wake up ‘more violently’ than older people. For me, as soon as I’m consciousness, I’m thrashing about, whining and demanding pain medication as the pain from surgery begins to overwhelm my nervous system. After my surgeries, I wake up in the recovery room alone, and then am eventually wheeled to see my family. 

I don’t think you ever get used to pain. I get it can become familiar, expected even: the way you can wake up in the morning and anticipate the pain. But you don’t develop tolerance to intense pain. But you do have to survive it.

Clearly there is a difference between the reality of living with an illness and the portrayal of it on television. So how do we change the message? For better or for worse, medical dramas have immense power in influencing what the public thinks or knows about certain diseases. For example, when watching ‘Grey’s Anatomy’ last week, one doctor asked if another could assist her on a proctocolectomy. I smiled, I knew what it was since it was my first surgery. I wondered, did anyone else know that word? They know Alzheimer’s, they recognize chemo and transplant terminology. And that’s important - we need awareness about so many diseases. I can get disheartened when I’m constantly reminded of how far we have to go to achieve our missions of awareness and a cure.

But then again, think how far we’ve come.

Jennie 

Accidents, Preparation, and “Friday”

After successfully putting it off for over two weeks, I finally bit the bullet today and did two loads of laundry. This had gone from a ‘running out of undies’ situation to ‘must clean poop-stained bedding’. If you’re confused, let me back up:

There’s little more to thinking ‘uh oh....’ in the middle of the night than waking up at 3 AM feeling wet and warm where your clean ostomy bag is supposed to be. Better yet, looking down and see the spreading stain of the output soaking my pajama buttons, jumping from bed and examining the bed sheets as well. And then, of course, tending to the small issue of cleaning myself up. The days of bed-wetting are a long forgotten memory - the only thing I can call to mind is being 5 or 6 and crying after an accident, totally embarrassed and disoriented in the hours of the early morning. I’m sure I will have great patience in cleaning up my future children post-accidents after my continuous experience (this week alone) of washing up and donning fresh clothes before hopping back in my (cleaned) bed. But accidents are better than no accidents - aka having a lot of output is always better than no output, or, as Shrek says, “it’s better out than in I always say”.

And that’s fine and dandy when I’m at home with my army of ostomy supplies, but it’s another story when I’m sitting in a classroom. Thankfully, I’ve always toted around a small bag of supplies with me, that came in incredible handiness this week. Preparation, preparation, preparation - the key to life. From slapping on a new bag to ripping a leaking one off, the skin around my stoma is raw and red and I cringe each time I peel it back, having found another leak. Every time I feel the stoma move, I think, is this an accident? It’s a total mind game, I try to ‘keep calm and carry on’ (or ‘yoga on’ or whatever the other variations my Dad sends me in an email). I no longer feel the embarrassment of a childhood-past, my attitude is so what, everyone poops, I just do it differently and more conveniently if you ask me. Last year when I was babysitting, the two girls were joking about someone they know who’s a baby and were saying that she probably pooped in her pants, and found this extremely entertaining. Then they turned to ask me, in between laughs, “Do you poop in your pants?” I had to grin and say no. Because an accident for me isn’t the same as it is for little kids being potty-trained. It may be inconvenient and annoying, but c’est la vie.

Finally, a daily reminder of the importance of laughing. At the end of my class this morning, after a quiz and a blur of a whole week, my professor held up his hands and asked if we wanted to see another music video (he always shows one at the beginning of class). We agreed, and he put up this video (click me to see it!) of Stephen Colbert singing Rebecca Black’s “Friday”. It was funny and everyone was laughing and it just made me think, even though the week had been filled with accidents, it had also been filled with good friends and good food and good times. 

After all, an accident is only a quick divergence or distraction on a path - but it’s being on the path that’s important to begin with. Trip gracefully, and make it part of the dance.

Jennie