Saturday, March 1, 2008

Our Allergy Story, Part 1: Learning to Be Abnormal

Mormons like to think of themselves as abnormal. In general, we take pride in stepping away from the mainstream. In every other way, my family is pretty average. We're white; married with two kids; middle-class; paying off our 30-year fixed-rate mortgage; and have two legs, two arms, and two eyes for each person. Yet, I thought I knew what it meant to be abnormal because of my religion. I don't drink coffee or beer and don't swear. Wo is me, my poor persecuted soul! But in the last few months I've learned that I really had no idea what it means to be truly abnormal.

That was until my son was diagnosed with Eosinophilic Esophagitis (EE for short), which is a somewhat rare chronic disease that manifests itself through inflammation of the esophagus. The symptoms are brought on because of exposure to allergens. Most people with EE are allergic to multiple foods and/or environmental allergens, so naturally we were concerned. Later we found out what he was allergic to: egg. Phew, what a relief. Just egg? We can handle that. Our life of normalcy lives on!

But who knew that egg is in a lot of foods, and many ingredients most people would not associate with egg are derived from it (see Part II). Our lives quickly changed as we became the "food police" to investigate every ingredient in every food that came even close to going into our son's mouth.

But of course there are worse things that could happen. Having a food allergy isn't the same as being blind, losing an appendage, or getting cancer. Yes, of course there are more difficult things. But this was our first glimpse of living life in a world not made for us.

So what? Our society looks out for the less fortunate, right? Every building is wheel chair accessible. Braille is everywhere, including drive-through ATMs (yes, drive-through). But what I've learned is that the things we do to help the less-normal are really just gestures to make everyone else feel better about being normal.

Stay tuned for Part II: Debunking the Food Allergy Myths.

No, it's not the hottest of topics, but I think after reading it you might be a little bit angrier, if that's what you're looking for.

2 comments:

Researcher said...

I followed your name link here from the No Means No discussion.

After quickly reading through your Allergy Story, I was called away from the computer. I spent a good fifteen minutes fuming over your assertion that the handicapped in society are being adequately cared for.

Luckily I read through your essay again before making a snippy comment.

The second time through I realized what you were actually saying: that your brief foray into the world of having a child with a Diagnosis has opened your eyes to the world of the disabled.

What you previously might have thought of as a joking matter (braille on a drive-through ATM) is now something real. It is like suddenly knowing how to speak a different language. It is like joining a club, one that is so exclusive that people outside it often don't even realize it exists.

Best wishes with your child's EE and with the world of food allergies.

I would like to also point out that what you are doing by writing these posts is called advocacy. Advocacy can consist of providing information to people (like you're doing) or encouraging those with disabilities or diagnosed conditions in your community. It can consist of belonging to an online support group. It doesn't have to be a primary focus of your life or even more than something that comes up from time to time, but I've found advocacy to be a positive way to deal with the stress that occurs when life moves outside the realm of "normal" experience. Then when you are mourning the fact that your child won't have the experience of eating a good ham and spinach omelet :-), you can direct your grief in positive ways.

Thanks for your post!

Mike said...

Researcher,

Thanks for your comment. I can see how you might have gotten to wrong impression on first read. I wasn't as clear as I should have been. But yes, you are correct that my eyes have been opened slightly to the word of the disabled.

"It is like joining a club, one that is so exclusive that people outside it often don't even realize it exists."

This is a good way to put how we feel. And people outside think they know that it exists, but they really don't know.

I don't mean to be condescending to those who don't have to deal with something like this. I was one myself who didn't think much about it, and I would still be if my son had not been diagnosed with EE.

And I also don't want people to think I'm comparing my son's disease with cancer or anything else more serious. I'm making the comparison not in degree, but in the sense that both EE and disabilities, or anything else that would make someone abnormal, is not as well accounted for as people think. The world is made for normal people, and you don't realize how much that is true until you become abnormal and see how little the world helps you on a daily basis. In my case, the way in which the world works against you is food labeling. Even with new laws that supposedly make it easier to spot allergens in food, I'll argue in part II that they actually don't help at all, in my opinion.

I'm hoping to get to Part II today or tomorrow.