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

Ready, Set...

There are few moments in life when there is a defined start and finish line. There are fewer moments when someone turns and asks, "Are you ready?" But perhaps more importantly, there are the fewest moments when you know when you’re ready.

I’ve been thinking a lot about my early IBD years. The moment I understood what having Crohn’s meant - what being chronically ill really meant for me and my family - it felt like my heart has dissolved into my belly and like I was falling backwards and upside down. It was like that feeling you get when you’re so angry or scared or confused or anxious that you can’t move or breath or think. When time simultaneously stretches out before you endlessly and disappears from beneath you.

I was not ready for my diagnosis. I was not ready for the life I was forced to lead. I was bitter and angry and felt too old for my 12 year old body. It is an eerie feeling to be at war with your body, when you cannot trust it to function as it should. All of this stands in such direct contrast to how I feel now. When I saw my GI a week or so ago, I broke into a smile and tried to put into words the joy of running. I’m not a good runner - I will not win the Boston Marathon or anything important - but I love it. I love moving and being free from the pain that plagued my body for so long.

And I know it’s not over. I know there’s a big, scary flare waiting around the corner, lurking until I least expect it, I know there’s likely another surgical board with my name on it. So I can’t put blinders on and walk away from my diagnosis - I keep myself in the IBD world to help others be as ready for their lives and the challenges ahead as they can possibly be.

Life happens so quickly. Before you know it you’ll wake up and it’s next week. Especially with a body that marches to its own rhythm, it’s a beautiful skill to be able to appreciate each little moment for what it is. I remember the first time I came off Prednisone when I was 14 and taking the dog for a walk and literally crying at the bright August sun and the little flowers. They were just so beautiful and I couldn’t believe I hadn’t understood them before.

So lately, as I run, lip-syncing to ‘Call Me Maybe’ or some other ridiculously catchy pop song, I can’t help but feel an infectious spirit of happiness wrap itself around me. I close my eyes and imagine being on the plane to Peru, then being amongst IBDers, then being atop Machu Picchu. I dream of looking down at the ancient Incan city, bronzing in the sun, shoulder to shoulder with other people who passionately believe that there will be a cure for IBD and that IBDers can do anything they put their minds to. The thought sends chills down my spine and makes me wonder if this is all real.

And then I remember it is. I am ready to run, ready to raise awareness, ready to hike, ready to ‘change attitude with altitude’.

I’m ready to live.

Jennie

Diagnos-aversary

“People are pretty much alike. It's only that our differences are more susceptible to definition than our similarities”
- Linda Ellerbee

Happy Diagnos-aversary to me!

Yeah, so I totally just made up that word, and I am not 100% sure that it’s something one is supposed to celebrate. Regardless, two years ago today I was rolled out of my very first colonoscopy and told that I was a very sick girl. Uhh I’m sorry, I am a what? A sick girl? With Ulcerative Colitis? It’s a moment that my memory refuses to forget. This moment has been on my mind a lot this past week, and I am going to attempt to explain why. I implore you to stay with my scattered thought process; I promise I do have a point!

Thought one: Monday, I finished a lesson at my teaching practicum with a fellow colleague. Our lesson focus: Inequality. One of our goals: To have students realize that we are all more alike than we realize. We had students focus on the commonalities that they had with their peers rather than the differences. I thought that this idea was all well and good until I was driving home and I realized that as young adults we don’t even do this. We have such a tendency to highlight the things that separate us, rather than the things that might bring us together.

Thought two: Tuesday, I went to the on-campus clinic to receive my weekly iron injections. As I was chatting with the nurse about my own up and down health, I asked if there was anybody else at Brock with a J-Pouch. She said she wasn’t sure, but that they had seen a lot of people in flares right now. One, this breaks my heart, and two; it makes me wonder who I interact with on a daily basis that’s battling IBD.

Thought three: I have a tendency to be hyperconscious of the people around me. I often wonder if the boy in my history lecture sits on an aisle seat out of habit or out of fear that he might have to leave to go to the bathroom. I wonder if the girl in the cafeteria eating a banana and saltines is in a Crohn’s flare. I wonder if the boy bolting down the hall is late or running from urgency. And almost every single time I step into a public washroom, I wonder if there is anybody else hiding amongst the stalls, self-conscious and embarrassed about their enigmic bowels. Each and every time I see something like this I want to go up to that person and say, “Hey, I understand. I’ve been there and I have bad days too.”

Thought four: One of the most amazing experiences I have had this school year has been becoming friends with a very lovely lady who also has IBD. Having somebody there to talk to who has been through the same pain, the same embarrassment, the same fears, the same anxiety and truly understand how I feel is refreshing and comforting. It makes me wish that everybody with IBD could have a friend like this.

Two years ago today, I would have loved to have had somebody come up to me and tell me I wasn’t alone in this battle. That so many youth were fighting the same fight that I was, that understood, that were the SAME. So please know that you are not alone, that you have more in common with the people around you then you currently realize. And that if you want somebody to talk to and somebody who understands what you are going through, message me – I am more than happy to be a member of your army as you fight your fight.

So today I am not going to celebrate my diagnosis. Instead I’ve decided celebrate that I am a fighter who has competed in a tough battle; a tough battle that I believe has prepared me well to aid others in their battles.

-Taylor

PS If you need someone to reach out to, email us at thegutsygeneration@ccfc.ca

CCFC Education Symposium

Check out this year's CCFC Education Symposium  - for the first time EVER - we have a specialized stream for youth like you!

This interactive and fun session is geared for youth that have been diagnosed with IBD. We'll be chatting about how to deal with IBD and school, share some incredible inspirational stories, play "Are you Smarter than your I", and you'll learn tons of fun ways to get involved with the Gutsy Generation! Basically, there will be a lot of talking about poop - in a fun way!!

 

Check out the link above to register - it's only $8! 

 

Contact Tiffany Lagman, tlagman@ccfc.ca or 416 920 5035 ext. 215  if you have any questions, and pass this around to any others you know that would be interested in spending a morning networking and engaging with others affected with IBD.  Remember - it takes guts to talk about it - let's do it!!!