On Top of the World

Two and a half months ago, I was in a hospital bed weeping. Surgery hadn’t gone as planned and suddenly the horrific semester I had just overcome seemed to loom before me. My heart felt like it had been split open, my dream from the summer of going to Peru seemed torn apart. Life was unfair and overwhelming and painful.

But if there’s anything I’ve learned, if you wait a few minutes, take in a big breath, and remember who you are, things become a little more possible.

So now, as I sit here writing this, I will try my very best to relay the amazement, wonder, joy, and peace of my recent trip to Peru. Warning: there truly are no words, so whichever I find will not do it justice. 

First of all, the people were wonderful. There were ten of us including myself and the group was comfortable and hilarious, comforting and encouraging. We sang songs and joked and had serious times when we related stories of pain and discouragement. It was a group of people who had every reason to be bitter and angry and discontent with the world, but somehow there was so much joy.

We were broken in easily to the challenge that was steeped in front of us. After a couple of days of touring around Cusco, wrinkling noses at the cooked guinea pig, and grinning over adorable Peruvian children, we donned our backpacks (which seemed to get heavier everyday!) and took out our trekking poles. I’ve never been to South America before, but the sheer vastness of mountains and the glaciers standing triumphantly in the background, the laziness of the cows grazing in the fields, the rumbling of the river as it fell over itself - all of these sights and sounds I tried to commit to memory so I would never forget. It was, in a word, beautiful.

There are too many details to try to write down, too many things I will not be able to aptly describe. On the third - and hardest - day, we climbed to the peak (4200 m) to ‘Dead Woman’s Pass’. After climbing the ultimate StairMaster (thank you Incans), I climbed to the top of a big rock with a fellow young trekker. We looked down at the stairs, winding in the distance, saw the Incan irrigation chevrons carved into the landscape, and cheered for the trekkers behind us to make it to the top. There aren’t words - it was gorgeous and glorious and empowering and exciting. We sat there and breathed, inhaling and exhaling, unable to find words to articulate how our hearts were singing.

Even with the chilly nights wrapped in sleeping bags and the midnight journey to the bathroom tent with only a headlight, the trek came to an end way, way, way too fast. We reached the Sun Gate and took countless pictures, so proud of one another and the journey we had completed. I looked down at Machu Picchu, the postcard picture I had seen online so many times, and couldn’t mesh the real and surreal elements of the moment. I had made it. I was on the top of the world. And as happy and proud as I was, my heart ached that the trip was nearing an end and I would be leaving the people I had come to care about so dearly.

Besides crying as I left Peru, the most vivid memory I have at the end of the trip was the bus ride from the train back to Cusco. It was dark and everyone was tired and plugged into their iPods or falling asleep. The bus drove along, the lights of the surrounding towns twinkling. I was listening to my music, grinning at the joy of the occasional person who would break out into song or the laughter that would warm the bus. I closed my eyes so tight and promised to remember what it felt like to be there and wished the bus ride would last forever. If I close my eyes now and listen to my heartbeat I can still feel the sway of the bus and the hum of laughter and the peace that blanketed us all. 

It was the best experience of my life, though I wish I could say that more eloquently. I am so happy to have been healthy enough to go, but now sad that it is over. But I know that there will be new challenges, new mountains, and new friends.

And when I get nostalgic and wish I was back on the trail, hiking steps and laughing, I’ll look at my pictures and smile, and close my eyes and be back in the bus, happy and whole and healthy.

Jennie

Make a Wish

We make wishes on fallen eyelashes, on birthday candles, and shooting stars. Having recently watched Aladdin and The Wizard of Oz, it makes me wonder what I would wish for if I had a genie or a wizard.


The obvious wish: a cure for IBD. But no passive wish will take away the disease that has changed my life forever.


Today I participated in an ostomy visitor training program, so when someone has an ostomy surgery, I'm called to go and speak with them and hear their concerns. At the training, we each had to introduce ourselves and why we wanted to be a visitor. I expressed my belief that people with ostomies can do anything and everything and that once they believe it, they can do it. Having an ostomy is a severely traumatic experience, no matter how prepared you are for it. I was so relieved to have mine done and so happy for it, but it was terribly painful and it was frightening, I had to relearn how to walk, it felt like my entire abdomen had been ripped apart - because it had. I was the youngest in the training session by several decades, but we all shared an unspeakable and unbreakable bond - we are all bag people.


And so, my wish is not only to let new ostomates know that their lives will be amazing, but to let everyone know that an ostomy doesn't mean anything besides the fact that you poop in a bag. There are so many advantages to having an ostomy, and life after all, comes to those who live it.


Jennie

3 KM...

Any person sets goals for themselves, and I'm no different - my list of goals is continually being added to. Current state of my list of goals: get my BA in Psychology, get a PhD in Clinical Psychology, become a pediatric psychologist for chronically ill children, run a 5K, write a book - and oh yeah, go to Peru and climb Machu Picchu in March.


It's good to have goals - but sometimes it makes it more painful to have a laundry list of wants when my body insists on being broken. Having spent the last month in the hospital, it's difficult to try to incorporate reality into goals and dreams and make compromises. As the first post stated, I am incredibly stubborn and I find it impossible to delay my dreams to deal with my reality.


And I think that's in part why going to Peru is so important to me. The first time I found out about it, I was headed off to the ER with a partial bowel obstruction, but as soon as I saw the awareness trip opportunity, I was ready to head to Peru right there and then. The pain of the obstruction was diluted by the excitement of the trip, it was all I could think about, it was all I wanted to do. Achieving a goal is an amazing thing for anyone, but all the more meaningful when I live on time that isn't always my own.


I am so excited about the 3 KM that have been sponsored so far - step by step, KM by KM, I will get to Peru and check it off my list!


Jennie

A journey of 40 KM starts with one step...

Here is my original letter explaining this amazing and indescribable journey that my heart is set on! 
------

Dear Friends,

There are two very important things to know about me. First, I have Crohn’s Disease. Second, I am very stubborn. You may have never heard of Crohn’s Disease and may be wondering how being stubborn and having an illness are possibly related, but I will explain. 

There are many medical definitions of Crohn’s Disease that you can find online, but they cannot portray the accuracy of the physical and emotional devastation the disease can cause. Here is my medical story as concisely as possible: I was diagnosed with Crohn’s Disease (a chronic incurable autoimmune gastrointestinal disease that causes inflammation) after my 12^th birthday and spent years on drug therapies that ravaged my body in pursuit of remission. After continuously exhausting medical choices and spending vast amounts of my life in the hospital, I chose to undergo permanent ileostomy surgery last year right after my 19^th birthday. What does that all mean? It means that I have spent the last eight years of my life entrenched in the medical world and that I no longer have a large intestine and will always have an ostomy.

In some ways, having an ostomy is kind of like the ‘happily ever after’ ending in fairytales. It has given me unimaginable independence and freedom and I absolutely love it. But in other ways, it’s a short vacation. Crohn’s Disease can occur anywhere in the GI tract, and so within six months of my major surgery, inflammation was lining my small intestine. 

But before this appears to be a sappy, Oprah-worthy medical tale, let me explain why being stubborn is relevant. I had no choice in having Crohn’s Disease, but I do have a choice in how I live my life with Crohn’s. Being sick can make it hard to go to school, have a job, be with friends, travel, and fulfill my dreams – but just because something is challenging does not mean that it is impossible. When I decide that I want to do something, I make up my mind and nothing can stop me from following through – not even my disease. After finishing high school at Halifax West, I decided to go to school in America. As a dual citizen, it had been a longstanding dream of mine as far back as a primary student. People who didn’t know me urged me to stay home, they reasoned that I was sick and belonged with family. But I was determined and I packed up my life and moved to Boston to attend Boston University. I’ve been on the Dean’s List, I’ve been in the hospital, but I wouldn’t trade living my educational dream for a split second. As a Psychology major, it is my goal and full intention to be a pediatric psychologist for chronically ill children – a hole that is so needed in the pediatric medical system.

I once described to someone that living with Crohn’s was like having only one-colored pen. I could write a million different words, but they would all be shaded with my Crohn’s. But just because I have Crohn’s doesn’t mean that I am Crohn’s. I am a student, a writer, a babysitter, an amateur yogi, an aspiring runner, a jewelry maker, a volunteer, an advocate, and a hundred other words that won’t fit in this letter. As the chair of the Youth Advisory Council for the Crohn’s and Colitis Foundation of Canada, I take an active role in changing how people think about Crohn’s. I try my best to live by the wish I wrote when I was 13, “You hope to rise above your disease and excel”.

Crohn’s Disease is a form of Inflammatory Bowel Disease (IBD). IBD affects over 5 million people in the world, and over 200,000 Canadians – the highest rate per capita in the entire world, with the most prevalence in Nova Scotia. IBD costs the Canadian economy almost $2 billion a year. To me, IBD had cost me my childhood and my large intestine, but it has not taken my resolve to live and thrive.

When you’re confined to a hospital bed and have no energy to stand or even stay awake for the entire day, the idea of moving and being active is completely laughable and painful to comprehend. But as I fight day by day to have my life and succeed with my ostomy, being active brings an indescribable joy and freedom. In March of 2012, I will be joining a team of like-minded people to travel to Peru to climb Machu Picchu to ‘change attitude with altitude’. As part of the IDEAS’ (Intestinal Disease Education and Awareness Society) IBD Adventures, I will finally get a chance to travel across the world to literally rise above and excel. We will be hiking 40 km through the Inca Trail, on a physical journey and a medical one. You can learn more about the trip at http://ibdadventures.com/2011/08/04/machu-pichu-march-2012/. 

We all have intestines and we all go to the bathroom. There is a shame that is associated with intestinal diseases, but that is condemning and inaccurate and it is about time we came out of the metaphorical bathroom stall and did something about it. I want to raise $5,000 ($125 per km) for the Machu Picchu trip so that important research can be funded to find a cure in my lifetime. I would so deeply appreciate anything that you could give – be it a penny or words of encouragement. Donations can be made through the 'donation' button on this blog.

Just as my disease is chronic, so too is my resilience, stubbornness, and belief that I have a right to a beautiful life. I am 20 years old, and have a challenging but remarkable life ahead of me – and in March, a very, very large mountain.

Very best,

Jennie David