Why is it so hard?

I frequent several online communities or bulletin boards specializing in dietary restrictions of some sort. Recently, there have been a few friendly polls asking what we miss the most, what we wish we'd known, how things would have been easier. It left me thinking about the different attitudes portrayed.

Some people are given a diagnosis of food allergies, and they embrace the new lifestyle. They actively seek out alternatives and find themselves determined to meet and beat the challenge. Others fight the change with everything they have, determined to go out kicking. They settle for a few symptoms, and appear angry that doctors can't "cure" this named malady. And others curl up in a closet, limiting their diet to the few foods they'd previously enjoyed that remain free of their allergens. Most fall between the extremes, and many bandy about, depending on their level of grief, acceptance and research.

I couldn't help but wonder what makes the transition so hard, so frightening for some. I look back on my journey and see that I've hit various levels of extreme. I've also thrown caution to the wind, and suffered the cosequences. I've fought, and cried, and been accused of eating disorders until the mere mention of one makes my hackles raise. I've embraced, and experimented, and tried whole heartedly to overcome the obstacles growing in front of me.

But somewhere along the way, I stopped trusting food. It became quite an enemy, something that I fear rather than relish. I can remember walking the aisles of a grocery store and being tempted by new treats and delicacies. I can remember enjoying taste tests and can even empathize with those who claim to "eat their way through Costco" on a sunday afternoon. But no longer. Now, I find a new brand of chocolate chips, and instead of trying them out for a special treat, I save them until there's nothing going on for a few days and nothing urgent for at least a week, just in case they bite back.

I yearn for broccoli, or mayo or salad dressing. I long for a simple quick fix meal that is new, unique. Forget the candy and the baked goods, I want a casserole!

But I don't trust it.

I think that's the hardest thing, the thing I miss the most. I don't trust food anymore. It's supposed to nourish, to sustain us. No one ever said it could bite back, destroy the lining of our small intestines, sprinkle our body with itchy red spots and wreak havoc with our digestive track. Not if you treat it with respect, anyways. Food is supposed to enhance the social experience, drawing people together in a shared caloric pleasure. What you see is supposed to be what you eat, not a variety of re-designed, corn derived pseudo-foods that are supposed to enhance the experience. Fun colors and flavors are supposed to be innocuous, but all those rainbow fish and brilliant gummies I used to treat the kids with put my child in bed, pale, sweating and miserable. And me? I think I'm broken. While I desire the quick, the fast, the easy...while I mourn for the past, I wouldn't trust it if it were offered.

Mother nature, or the FDA, broke that trust a long time ago. And it's a hard road back, filled with the painful reminder of indigestion and more questions than answers. With intolerances, there are no firm lines. And there is no FAAN or other organized group at your back, offering knowledge, studies and expertise. Just the knowledge that you aren't alone, and the grass root support of those who are muddling through alongside of you, just as lost but determined as you are.

Food Allergies: Prison? Or Pardon?

This entry, like so many lately, has been inspired by recent goings on in a variety of online communities I take part in.

The subject that inspired me was the frustrated comment that food allergies feel like a prison. I can understand where they're coming from. Indeed, it's frustrating when 'everyone' is going out to eat and you have to find something to bring along, or eat in advance, or just beg off. It's hard to avoid participating in the most fundamental of ice breakers..."Did you try that dip? OMG, it's to die for!" It's lonely to not identify with the curbside "what's new at Starbucks" conversation.

But I don't view food allergies as a prison.

For years, I was in pain. I did my best to ignore it, to push myself out, I put on a smile and bounced about, and laughed like there was no tomorrow. But I had that internal monologue going. "5 more minutes. Just 5 more minutes." I had a route mapped to the bathroom, I was imagining soothing white light coating my abdomen, I begged off citing "headaches" and "menstrual cramps". No one seemed to notice that I always had pms...and if it did come up I joked that I was stuck with "pre, post, present" syndrome. We laughed. Life goes on.

But every moment was just one step in front of another.

My daughter has fond memories of the days before I had "food allergies". When I'd tell her to grab a big pile of books, and we'd snuggle up in bed with the heating pad and read for hours. She remembers building a fort, and me telling her to bring the juice and a cup so I didn't have to leave. She doesn't know that I didn't have the strength to walk to the kitchen. And the memory chills me.

Although I am still dealing with many of the affects of food allergies, I'm also healing. I'm awed by the trips we take, to the zoo, to the library, to the park. Trips that I enjoy. I used to think I enjoyed them, but I hurt. I wasn't really "there". I was in my internal monologue of "5 more minutes, this doesn't hurt that bad." or "Breathe, just keep breathing, slowly, that's right." I love lamaze. I barely used it in labor, but I got a lot of use out of it for other reasons.

Sure, my heart still pauses when I have a meeting I can't miss. I still make sure I can have a quick getaway even though I haven't needed one in awhile. (Okay, okay, okay, I had a few close calls over Christmas. It was a nasty reminder of what life used to be like; and if it weren't for December, I probably would be feeling even less skittish at the moment.) As a good friend once told me "The best way to get over a fear is to jump right in. But, when you jump in and a freak wave knocks you over and tangles you up in seaweed, it just confirms that your fear was well founded. And obviously, it makes it much harder to 'just jump in' again." I'm just recovering from the seaweed memories. It doesn't mean that food allergies create a prison.

As far as I'm concerned, the allergies have set me free. That freedom is a bit scary at times. And of course...I still have physical symptoms that hold me back, and frustrate me. Restaurants are not a relaxing opportunity. Parties are scary. But only because of my memories and fear of embarrassing myself. I can't shake the memory of walking into a career counselors office, forcing a smile and vomiting into his trash can; running in shame. (Maybe I should get that health under control before job hunting?) Or the restaurants. *shivering*.

Now that was isolating. Violent stomach flu striking any moment of any day, several times a month with little warning other than the almost omni-present discomfort; now THAT was a prison. Doctors shaking their heads and telling me to buck up, shrugging, suggesting I relax...just jailors, throwing away another key. Medications that at best, left me sleepy and unsafe to drive? Just empty hope.

Discovering food allergies? It's like being set free after years of prison. Sure, I'm not living the life that TV tells me everyone wants. I may not be an executive anything, or the PTA mom, or a June Cleaver-wannnabe. I'm not a social butterfly, and I've never eaten at the half dozen restaurants I use as landmarks when giving directions. But I have some control over my health. I have hope. Hope! That thing with feathers, that perches on the soul...(Emily Dickinson)

I can bond at the park. I can bond with other parents over the trials of bedtime or their toddlers new cute boots. Everyone can relate to grocery budgeting, whether you buy ingredients or pre-packaged goods. And there's not one of us who doesn't have a pile of laundry calling.

Food allergies may have imprisoned me once, but now that they're labeled and acknowledged, they've set me free. I'm no more imprisoned than an Orhodox Jew, or Seventh Day Adventist. The only prison is in my own memories.