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 The shy, soft-spoken boy has been replaced by an open, out-spoken one because I was willing to open my heart to my disease.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.
For a teenager with IBD, life has its “ups” and “downs” like it does for everyone else, but I bet the “ups” are better for me than others – or maybe I just appreciate them more. With awesome “ups” … the “downs” become a little more tolerable and no matter what, the “ups” and “downs” and how you handle them is what shapes your life. Recently I had a big “up” – not a big turning point in my life, but it certainly reaffirmed a couple of my life ambitions – the first being to set goals and the second, to make my mark on the world.
The second to last weekend in June, I spent four days at the Hugh O’Brien Leadership seminar (HOBY). It was a great experience, a lot of fun; I met new friends, and learned the principles of good leadership. Leadership is important to a community, to an organization, to me … to everything really. At the HOBY seminar, we learned about the different areas where leadership can be applied and different elements that define a good leader. HOBY taught me a thing or two about my own leadership development – they suggested in the seminar that in order to exemplify good personal leadership you must first know yourself.
It took me some time to realize who I was as a person and what I have come to know as my goal in life. Maybe this is just part of growing up, but I have to wonder if the ups and downs of having Crohn’s disease have not played a part in that process. Over the past several years, things have become very clear for me – my goal in life is to help others – using my experience and my disease to help others through their “downs”. For the longest time, I denied the fact that I had Crohn’s; I did not want to be different and just wanted to fit in – I guess I was in denial. However, over the past few years, with the support of friends and family, living with Crohn’s has helped me discover myself and I have turned what some might consider my weakness, into my strength.
My goal in life is to become a gastroenterologist and to use my experience as a patient to better my patients’ experiences. My life ambition includes two important ideas that we covered in the HOBY seminar last weekend. The first is to always make SMART goals. Without goals, life has no direction and someone without goals will very often not accomplish anything. The second of the two topics we discussed at HOBY was the more important one in my mind – that is to make your mark on the world by changing and inspiring others lives.
My plan: to touch the lives of as many patients as I can in my lifetime.
[Editors note: read more posts by alex8799 in his archive]
Remember Alex? Read Alex’s first post to LOOP here.
My life in one word (or acronym)…. IBD. I was diagnosed with Crohn’s disease at age nine. I am currently a sophomore at Milford High School and 16 years old. My life with Crohn’s disease was summed up one day by my school nurse. That day I came in to the nurse’s office and I broke down. I was in the middle of a month or so – what seemed like an endless period of having stomach cramps for no apparent reason. I started crying and in that conversation the nurse had this to say about IBD, “You’re allowed to say it sucks.” I thought that summed up the low points of my life and other patients’ lives with Crohn’s disease pretty well.
In my seven years with Crohn’s, I have gone through all the medications used to treat kids and have not found one that works. I have had several surgeries, the biggest of which was a resection of my ilium this past August. I have definitely had my ups and downs. But doesn’t everybody?
Even through the lowest downs, there is always an up; the silver lining that lights up your day. For me, I found that silver lining through Crohn’s disease. I guess Kelly Clarkson doesn’t lie when she says “What doesn’t kill you makes you stronger.” My silver lining is advocacy for a better patient experience. I get my inspiration, my optimism and my might from the patients that I see who have thrived under the weight of diseases worse than mine.
Crohn’s has turned into my life and my strength. It is the reason I am down, but it is also the reason I get right back up again. I have made new friends from Crohn’s. Through Crohn’s disease, I have learned who I can count on, to support me when I fall. It has introduced me to some of the most wonderful patients and people I will ever know. I have met patients facing bigger obstacles than me and living their lives giving back to others; living like everyday could be their last. Through Crohn’s disease, I have found my future and my life goal.
Life will always be full of obstacles but the way you deal with them is what determines whether the roadblock will be turned to a strength or a weakness.
Crohn’s is my life and my strength.
Optimism is a wonderful thing that the world needs to have more of. Dictionary.com defines optimism as “a disposition or tendency to look on the more favorable side of events or conditions and to expect the most favorable outcome” or “the belief that good ultimately predominates over evil in the world.” Optimism is what pulls a person through adversity; gives a person hope; and makes patients heroes that serve as role models for other patients.
My six-year experience with Crohn’s Disease has included the bottom up approach in finding medications and without all that much success; hospitalizations; resection surgeries; alternative ways of finding nutrition, and lots of pain. Some may think that it’s hard to be optimistic with all of this, but I have two choices. I guess I could wallow in self-pity or face it head on, and try to stay optimistic. The latter is my choice; I think a better path to follow and it sure makes it easier to keep up the fight.
Some of my optimism is natural or part of my personality I guess. Part of it is telling myself that I can beat this thing and that maybe someday they will find a cure; in fact maybe I will be a Doctor someday and be part of that research. Friends and family certainly help, and maybe the odd distraction (like music, or a good movie …). For the most part I guess I am optimistic because I refuse to give up hope. I believe in staying strong. In my opinion, keep looking beyond the day-to-day challenges and hoping tomorrow will be a bit better. Without hope, there is no way of getting through the struggle.
I also get some of my optimism from others; specifically from other patients. Seeing what others go through makes my battle look small. These patients serve as my heroes and role models – probably because I see what they are going through and certainly can appreciate it when I compare their condition to mine. The biggest hero in my life today does not have IBD; she has Cystic Fibrosis. She has had to put university on hold while she waits for a double lung transplant. She goes in and out of the hospital for weeks at a time and never gives up hope. She is optimistic and in the face of hard times she devotes her time to other patients. What is inspiring is her ongoing optimism; someday, I wish that others would look at me and think the same thing – that good ultimately predominates over evil in the world.