I was browsing through the site ChronicBabe.com and saw a section calling for inspiring stories. I asked myself: who has inspired me to think beyond my chronic illness? It came to me in a flash. I knew exactly who it was. I sat and started typing. Well, I kind of write the way I talk. Excessively. My word count was slightly over double what they were asking for. Oops! But I don't want to cut anything! Well, this is when having your own blog is great. So here is a (very) slight departure from the usual posting. I also challenge you to ask yourself who or what inspires you. Please share either here or in your own blog. (If this is just too long, hop on down to my previous post. Thar be a recipe!)
It is often easy, as an individual with a chronic illness, to find yourself focusing too much on the limitations of your disease. We zero in on the symptoms and all those things we used to love, but can no longer partake in. In October of ‘06 I was diagnosed with Celiac Disease, an auto-immune disease whose only treatment is through a strict gluten free diet. You grieve. You mourn the loss of all those foods you once loved: croissants, crab rangoon, Wonder Bread, Mac n’ Cheese, and pizza from D’Agostino’s. Gone are the days of easy meals and worry free dining out. You have good days where you feel empowered by your new choices. You research, you take control. And then you crash and throw yourself a little (or big) pity party.
I find that it is typical to overlook the benefits and the positives in the situation. I generally eat healthier meals. I can have more energy. I don’t hurt. I have tried new foods and recipes that had never entered my diet before. You focus on the negatives. Food costs 2-3 times more money. Shopping trips are lengthy due to the insane number of labels you need to read. Why can’t I just eat that frozen pizza??!?!!? Then there are those moments when a single individual puts it all into perspective. Celiac Disease is not the end of the world. It is a challenge. One that I intend to live up to.
You see, I am a teacher. Every week I teach music to nearly 700 students in grades preK through 8. There are moments of discovery and joy. There are moments of frustration and anger. Basically, it is your typical teaching job. In the past three years I have seen nearly a dozen children diagnosed with diabetes. I see them struggle. I see them grieve. I see my situation reflected in their eyes. I know what they are going through.
Ironically, though, it is not these children who have inspired me. Absolutely, I am proud of them. It is a difficult thing to go through. But I have another student, "Joe." Joe transferred into our school last year during 4th quarter. Right away he stuck out: his style was different, he had that swagger my students were missing, he exuded attitude. Not in a bad way, but in a way that was different than his new classmates. If a child transfers in when they are a 7th or 8th grader this often raises a red flag for teachers. Why are they changing schools now? An 8th grader is not required to change schools if they move. Most parents of 7th graders lie to the school system and say they still live at their old address. We know this. It is the unspoken way of things. So when Joe transferred in near the end of his 7th grade year, eyebrows were raised.
Things did not start off well for Joe. Assignments were not completed, grades were abysmal. Teachers started saying words like "lazy," "trouble," "problem." He was getting labeled and you could see his swagger wilting. School started back this past fall, and that is when I finally heard the word I had been waiting for: disability. You see, Joe was 13 years old and could not read. If you stopped to talk to him, you could see the eager boy hiding behind the attitude. He may have transferred in as a 7th grader, but he was attempting to make a new life for himself. He was walking away from gangs, from the only life he knew. He was desperately trying to start over and so many of the adults were not giving him a chance. His heart was in the right place. He used manners that none of his classmates possessed. When you took the time to talk to him, and to really listen, he was an articulate young man. I could see his potential. I could see him trying day after day to make that change for himself. Imagine every single class you are in, struggling to do something as basic as make sense of the words on the page. It was humbling to see how much he wanted that new start.
Since the beginning of this school year, Joe has finally been diagnosed with a learning disability and his IEP (Individualized Education Plan) has been developed. He has worked so hard to turn the words lazy and trouble into diligent and determined. He is starting to win over the staff. It is an uphill battle with some, but I have faith he can do it. I know, because he shows this to me every day. He is now in an after school leadership group that I run. Honestly, it is a group to help develop decision making skills in some of our at risk kids. He was the first to sign up. He is the first to arrive each week. He was the first to truly open up and share. He told us about his brother who is in juvie. He shared about "his boy" that was killed in a drive by. He proudly stated that, while he had five F’s on his report card 1st quarter, he only had two for 2nd quarter. He has come so far. He has made amazing strides in the right direction. He has had a taste of success and is not going to let that get away from him. He is my inspiration. To overcome so much and to keep trying so hard is an amazing feat in any person, but to do this while in the throws of adolescence? Unbelievable.
He told me his goal is to stay alive and graduate. Well, last week he took an entrance exam at the high school he wants to attend. When I asked him how it went I thought he was going to cry and throw himself at me. He had passed. To see this "lazy," "troubled" boy take such pride in his academic achievement reminded me that no matter how challenging my diet may seem, there is a way to make it work. If a child with a learning disability, who cannot read and grew up in a neighborhood filled with gangs and crime can overcome his hurdles, I can find food that does not contain gluten. In comparison my hurdles are little, how about yours?