Saturday, October 4, 2008

Reset to normal

The problem with being diagnosed with a life threatening food allergy as an adult is that you have a lifetime of normal habits and behaviors that are not compatible with your continued survival.

Sometimes I reset to normal and do something like use a friend's lip stuff without thinking, or say 'Thanks' when someone offers me a piece of gum, or let a friend's child put stickers allover my face. Normal stuff. Safe enough for the rest of the world. If I've reset to normal, I'm relaxed, happy and not worrying about what I'm going to poison myself with today, so none of this seems dangerous. It usually takes moment before I remember -- I can't do normal people stuff, if I'm going to touch, taste or breathe it, it has to be corn free.

Reset to normal is sometime followed by a lot of emergency medication and and the internal chorus of 'Stupid! Stupid! Stupid!' Most often it is followed by my snatching my hand back, and doing what Erma Bombeck (one of my mom's favorite humor writers) called the last breath performance. Dramatic inhale, followed by a screeched "OHMYGOD! I CAN'T HAVE THAT -IT HAS CORN IN IT!!"

I've lived in a few countries where you can't drink the water. From this I have a complete set of practical behaviors for dealing with water that is hazardous to your health, that I can follow without error for months on end. How to deal with bathing and washing dishes in non-potable water and filtering and boiling water to have potable water for cooking and drinking, this can be done without a fear of a reset. But it is JUST water, just one thing. Once you got used to the fact that you could not eat off a wet plate, not to rinse your tooth brush in the sink and remembered to keep your mouth closed in the shower you would be fine. If you reset to normal and drank water from the tap, you went to the pharmacy, got your meds and waited to see if you got sick. Even then, the consequences of a reset were not immediately life threatening, just very, very uncomfortable.

As incredibly difficult as it must be to deal with a food allergy as a child, these kids have a distinct advantage over those of us with adult onset food allergies. They grow up with the set of normal behaviors being ones that will protect them from harm. [All you Allergy Moms & Dads, keep up the good work! If my mom were here, I'm sure she would be ready to grab the gum out of my hands before I hurt myself and give me a time out for playing with corn-adhesive stickers.]

I think it is safe to speak for everyone with severe food allergies in saying that constant vigilance is wearying. I know that sometimes I get tired of trying, I don't want to bother with going to new places, meeting new people, having to explain that a corn allergy means that I'm allergic to most "normal people food. " It's exhausting. I don't like talking about my medical issues all the time, I'd like to think that there is more to getting to know me than learning about corn allergies. Given all of that, it is not all that surprising that when I'm relaxed, or very tired, I return to my pre-allergy default behaviors.

Reset to normal feels great. But, it means that I'm being an idiot. It means I have a medical problem that I'm ignoring. This, managing a life threatening food allergy, is the new normal. So is remembering to check, talk, ask and make sure EVERYONE around me knows it, so that if I forget, they will remind me.

By everyone, I mean everyone. My smallest advocate is turning 4 next week. [I've been meaning to give her a name for the blog -- it's been a toss up between Princess Sassy Pants and Grace. I'm going with Grace for simplicity's sake.] We were at the playground and while I was chatting with a friend about the food choices for her wedding, Grace suddenly leapt off the bouncing orange snail she had been happily riding, and jumped in front of us looking furious. She stood there, arms akimbo, fists bunched, brow furrowed, glaring, and bellowed, "Christine is ALLERGIC to CORN!!" The caterer, in Chicago, got the message loud and clear.

Even if I can't take Grace with me everywhere, I need to remember that this is normal from here on out. Maybe on bad days, I can bring my pint-sized bodyguard.

*In case you are wondering, corn is in the zanthan gum in the lip stuff, the sorbotol in the sugar free gum and the adhesive in the stickers.

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