How many times have you heard that Camp Oasis – a camp just for kids with Crohn’s disease and ulcerative colitis – is a special place and experience for kids with IBD? Probably more times than your fingers can count. Even still, deciding to go to camp isn’t always an easy choice to make.

We speed down the pavement towards Grand Canyon National Park. In a few hours this road will be jammed for miles, but right now it’s empty. The trees stand motionless in our headlights and the air rushes into the car through the open windows and back out into the night. There is a young buck on the side of the road, and his presence only accentuates the stillness of the scenery. We pass the empty ranger station, the closed visitor center, and continue driving to the rim of the canyon. Clouds cover the stars like a nightshade, and only the moon penetrates the veil—it is dark.

It’s 3:00am, and we’re at a gas station ninety miles outside of the park. We’ve been up for twenty-two hours, and been on the road for sixteen of them. I pull out of the station and on to the open road. We roll the windows down and open the sunroof. The air hits my arms and my body shivers at the cold. I stick my left hand out the window and open my palm to the night—it keeps me awake.

The interstate takes us through a Navajo reservation. It’s time to switch drivers, but there are no exits. Daniel slows from eighty and stops us on the wide shoulder next to dark grassland and a wire fence. I pull down the ceiling flap and open the mirror. My eyes are red. Sand from the dunes scratched them up, and the burn of the open windows left me squinting. When I rub them, little tears form at the corners and slide down my cheeks.

The first three hours of the drive are easy. Daniel takes us out of government land, and we watch the sun set behind clouds that drop streaks of rain over the prairie. Although we had already been in the car for nearly ten hours before leaving the dunes, the adrenaline keeps us comfortable. I lean my seat back and put my feet on the dash until it is time to switch. My right hand grips the steering wheel and I rest my foot just above the brake in case my eighty mile-per-hour pace becomes too fast.

I see the sign for “White Sands National Monument” from the passenger seat of the car. These milky white dunes are surrounded by government land used for missile tests and military operations, while the Parks Service protects a small patch in the middle. Entrance is free with our Annual Pass, and we cruise down the road of packed sand towards the far edge of the park. We see families sledding down the hills of sand on circular disks and couples eating sandwiches at park benches. We stop at the visitor center and buy a backcountry camping pass for one night.

One of the biggest challenges for a patient and their family is dealing with insurance companies. While insurance companies help families pay for medical care, sometimes it feels like they deny coverage of medications and other treatments for purely financial reasons. A patient is not a number on a page, they are a person with a personality and feelings. Patients with IBD and patients with any other chronic disease suffer. They try to live a normal life while dealing with symptoms; and with the right treatment, they find something that hints at normalcy. When an insurance company denies coverage, patients face the stress of no longer having a treatment that makes them feel better. And the unnecessary stress could cause their disease to get worse.

This past week I took part in the Cincinnati Take Steps walk for the third year in a row. Each year we design a new shirt as a way to come together as a team. This year’s team shirts were superhero-themed; the team name merged with the superman symbol. Seeing the sea of purple at the walk and all those superhero shirts got me thinking about my heroes and how they have helped me cope with my disease.

What makes someone a hero in my eyes?  They need to inspire me.  They should make me think beyond what’s normal and make me challenge the status quo.  Heroes change the perspective. They do not let limitations stand between them and what they want to do.  One of my heroes is Alicia Lang; she lived most of her life with Cystic Fibrosis. She was in the hospital for weeks at a time and half of her lifetime. Yet she always had a smile on her face and did not let her disease stop her from helping others. I met her at the Cincinnati Children’s Hospital Patient Advisory Council. She would roll into our meetings every month and you could not help but feel her presence in the room. Now the PAC meetings feel emptier without her smile. She lost her battle with Cystic Fibrosis, but her influence lives on.  She taught me that the tough times are the best times; it is a time for kindness, a time to step it up a notch, a time to smile, and a time to be a hero.

Heroes also inspire.  Jennie David and Sami Kennedy are two other inspirational heroes.  They inspire others by spreading their story.  They help others through their own fight by sharing their experiences; sometimes this is with humor (sharing opinions on what toilet paper is the best), other times sharing their experiences while going to college.  They have set high expectations for themselves and have made a lifelong goal of helping others with IBD. They have taught me that I can talk about poop as much as I want to, and that no matter how high the goal I can achieve.  They have taught me that, despite my Crohn’s disease, going to medical school is not out of the question; and that I am not going to accept anything less than a life as a pediatric gastroenterologist.

So why this blog about my heroes? Heroes are everywhere. They can be your Mom or your Dad, they could be someone that helps you at school or someone that you meet through circumstances that bring you together to fight a common cause.  In this virtual world, they could be a person you’ve not met face to face, but you admire from afar. Heroes are people you can look up to and can help you get through any situation. For me, when times are tough, I just think about all the people I know, my heroes, and those who may have it worse than me. I think about their situations, the experiences that they have shared, and I am thankful and mindful that my situation could be a whole lot worse. Every night I go to bed listening to Zach Sobiech’s song, Clouds, and I think to myself how I can live the next day to the fullest. How can I be a hero?

Everyone needs a hero so go out and find one. The hero you have always been looking for could be right in front of you.

I started off my life with Crohn’s as a nine year old boy with very little support outside my family … and frankly I just did not want anyone to know. I had some goals – mostly about excelling in school. During my years of elementary school and junior high, I told nobody about the battle I was having inside.  I didn’t want anybody to know about it and I certainly did not want to stick out from the crowd. “I want to be invisible,” I remember myself saying.

If you ask my friends now, they will most likely tell you that I stick out like a sore thumb. After you show your face on a video screen in front of the entire high school to tell them about Crohn’s everyone pretty much knows who you are. The other thing they might tell you is that Alex loves not being "normal" and he is okay with being different.

Some of this perspective on my changed life came to light while I was sitting in church listening to a sermon. I honestly don’t listen to all the sermons.  Maybe it’s that some of them are just over my head; but this one was different.  In his sermon the minister at my church compared the breaking of bread to the breaking open of one’s heart. He says, “We don’t usually think of being broken as a good thing. The word ‘broken’ really has a bad sense about it, suggesting that something is useless because it doesn’t work anymore. But suppose we think of it more in terms of ‘broken open’ and offering a way to get to the inside of the thing.” His philosophy about broken hearts really struck me. I wonder now whether he wrote this sermon about me.  Because when I think back I was broken (or at least my intestines were); and somewhere along the way that broken heart or broken situation, in my case, opened up.

I am now okay with everyone knowing I have Crohn’s.  I don’t have to hide in a corner when my Mom flushes my PICC line and I am okay wearing my backpack with my TPN lines hanging out and the pumps whirring away in public.  I enjoy meeting with my Doctor and talking about my disease with him, and speaking to other people with ostomies and IBD. The things that I hid from before have turned into my favorite things to do. The shy, soft-spoken boy has been replaced by an open, out-spoken one because I was willing to open my heart to my disease.

This summer’s family vacation was a trip to Disney World!! I had an awesome time. I watched my sister ride Mount Everest roller-coaster seven times.  I got to ride some rides myself;  my favorite was the new Star Wars ride.  The rides are good but the thing that stuck in my mind the most about the trip was an experience I had during one of the meals.

My parents bought a meal plan for us while we were there and this allowed us to enter into the Disney “system” that I had some food concerns.  This was cool because it meant the chef came out to our table for every sit-down meal we had, to talk to me about what foods I could eat. There was one particular chef at an Italian restaurant that we ate at on the last day that I really liked. All of the chefs before him, at other restaurants, were great and very pleasant, but they all seemed preoccupied with the food that they had left in the kitchen. This one chef was different – when he came to our table he took out a pad of paper and wrote down what my dietary needs were as we talked to him. Maybe it was his manner, or his attention to detail, but somehow he made me feel like I was his one and only concern at the time.

This experience confirmed in my mind something I learned from my experiences at Children’s Hospital in Cincinnati; it is the little things that matter; it is the little things that make or break a patient’s experience.

Last summer, at the same time as our family vacation this summer, I was in the hospital getting ready for resection surgery. One of the little things that I remember the most from that “vacation” was meeting the surgeon for the first time. My surgeon had a New York Yankees lanyard with his ID on it. I instantly could relate with him because I had something outside of my medical care that I could talk to him about – not that I am a Yankees fan; I am a Toronto Blue Jays fan so that made the conversations even more interesting. It is that personal touch, that relating to the person that was caring for me, that made a difference.

In a similar experience last year, I have a friend who on his first appointment when he met his new doctor, talked to that new doctor about Harry Potter for half of his appointment.  The  doctor was wearing a Gryffindor lanyard. I know another lanyard story; I am convinced lanyards are magical! The magic is in the conversation they bring.

It is the little things that count.  From food to lanyards or chefs to doctors ...  it is these little things that patients remember and make all the difference in the world to the overall experience.  Whether you are going through the trauma of a hospital stay or the trauma of an IBD patient trying to eat out, it is these simple things that make the patient see the caregiver as a person; someone that cares about you and even a little less scary.