The Road

One Mother’s Honest Perspective on Living with Celiac Disease

I feel a ramble coming about. Fasten your seat belts and return your trays to their upright position.

Ha! It feels that way at times, doesn’t it? Rolling down the hill, gripping the pavement, and hugging the jagged rock wall that will demolish you with a poignant lesson in physics. Or medicine. Or regret.

Sometimes people ask me how I dealt with the emotional aspects of my celiac diagnosis eight years ago. Truth be told, I really haven’t fully dealt with all those issues. It’s a journey with periodic markers. Most were there before my diet got slammed into the straightjacket of restriction. And frankly, they are probably there for you as well, lurking in the recesses of your mind, buttoned up and banished to a back shelf to be dealt with at a more appropriate time. Let me know when that time arrives for you…I’m still waiting for mine.

Your life was cruising along, wasn’t it? A comfortable speed of 50-60 mph as you made progress, moved forward, got your ring and white dress and baby bump and all the joy that comes with it. Yeah, I’ve been there. Pfft!

My husband tells me that Jack Kerouac wrote On the Road during a two week binge of benzadrine (whatever that is) and alcohol. Apparently he taped 300 pages of paper together, fed them into his typewriter, and just wrote. And wrote. And wrote. Maybe it was genius, maybe not. From what I gather, Kerouac had fun hopping on and off of trains. Good for him and his friends. Must have been nice at the time.

But sometimes I don’t feel nice. Sometimes I get angry at mothers who look at me funny because I read every damn label on the snack of the day. Sometimes I get claws, vampire teeth, and Medusa-like snarling snake hair ready to turn the snooty-sideways-looking-latte-drinkers into pillars of stone. Yeah, stone baby.

Listen, Ms. Perfect Mom who gets to cart her precious darling perfect child off to a fat-laden cafeteria meal every day: I don’t get that free time anymore. Do you understand? And please stop telling me to calm the hell down…I can make a fist…get it? (You all know I would never condone actual violence, but it is okay to make an emotional fist periodically…just sayin’.)

My free time is now filled with questions, frustrations, hockeypuck hard bread experiments, and crying in my closet at two in the afternoon. Where is my wine? What did I do to deserve this?

Well, I have to be honest with you. You can replay your life a few thousand times and based on your religious affiliation try to figure out what you “did” to deserve celiac disease, milk allergy, peanut allergy, or [insert your own demon here]. You won’t find an answer. What you will find are all kinds of emotional/past history/parent/sibling/coach/food/rejection crap that you never took the time to deal with. After all, you never really had to deal with it before, did you? Your life was on cruise control, right?

But here it is now, bold and loud in its sheer nakedness. As crass as some people can be, what you don’t hear is, “I don’t like your bread/cake/biscuit.” What you do hear is, “I don’t like YOU.” YOU made this bad food. YOU are the one who is different. YOU always have been, haven’t you? I swear, if I hear one more person say, “We would have invited you but…,” I think I will shoot laser beams from my eyes and tear a hole into someone’s soul.

It’s okay at this point for you to think I’m just a little jaded and partially bitter. If you haven’t felt this way thus far, just remember that you are not barreling down that winding mountain road in an Italian sports car that curves on rails and downshifts into amazing power just when you need it. You are driving an underpowered orange truck with a bad clutch and bald tires while all of the baggage of your prior life bangs around in the cargo hold, just getting broken as it slams into every broken Christmas morning dream you ever had. I wanted a Cabbage Patch Kid. What did you want that never showed on that bright snowcovered morning? It shouldn’t take you too long to remember.

And it is that memory, dear friends, that you are still dealing with. The food issues are daunting and make you want to bang your head against your gas range burner. But that’s just science when you think about it. Biology and nutrition and small intestines and such. Oh sure, your parenting duties have now changed a bit, you’ll deal with your children’s disappointments sooner than you wanted, but perhaps that may be an advantage. You can spin the present and future any way you want to. So go with that.

But the past…oh the damned, dreadful past. The clouded memory of a dying uncle and a devastated father. Almost everything from your past becomes focused like the tip of a spear pointed straight at your heart. What you took for granted or the natural course of things or just bad luck suddenly is re-evaluated in stark contrast to your current situation.

My current “situation?” Really? I didn’t know I had a “situation”…why do you refer to it that way?

I didn’t want to have a “situation.” I didn’t even know that I could have a “situation.” I became very tired very quickly of people referring to my dietary needs and emotional confusion as my “situation.” I’m tired of hearing people say, “You know, Heidi, based on your situation I think you’re doing well.” What is that supposed to mean? Does it mean I would be doing poorly in your eyes if it weren’t for my “situation?” Does it mean you think I’m handling my “situation” differently than you would? Or do you just not know what to say? Because I get that, I just wish you would be honest.

Honesty. How valuable it becomes to your life. Whatever lies you told yourself or half-truths that always seemed so easily dismissed as little white whatevers are no longer sufficient to your “situation.” The road has narrowed, your headlights don’t work, and the gas pedal is glued to the floor. I’m sorry, I just don’t have time for [insert seemingly unimportant function here] right now. Of course I wish I had more time, and I know you don’t understand why I don’t have more time, but I’m in white-knuckle mode right now and don’t appreciate tawdry questions.

There are things I need to read about, things that you have no interest in sharing with me. That bothers me. There, I said it. I’m sorry if I am boring you as I explain the difference between IgA and IgE…they’re called immunoglobulins. Did you ever think you would hear me talking about immunoglobulins, intestinal permeability, or villous atrophy? Yeah, I guess I do sound kind of strange to everyone lately. I feel kind of strange, too. I’m confused, angry, frustrated, and sometimes cry for way too long because I can’t stop. I am not depressed, I have no clinical condition, and I am not going crazy. I am being bombarded with a lifetime of failed expectations as I look into my young child’s eyes and will be damned if I can’t find a way to make a gluten-free pretzel rod that doesn’t taste like a dog biscuit. I’m sorry Mom and Dad, in-laws, cousins, aunts and uncles, coaches, and room moms. I guess we can’t just pop off to the amusement park or ball game and stuff our faces full of hot dogs and pizza the way you dreamed. And I still love you more than anything, but I feel guilt and know it’s not your fault…but. It is still there all the time!

Non-Hodgkins what? How does that happen? You start learning about how a lot of different things can start happening to you and your children once you learn they have celiac disease. You learn new and somewhat frightening words like malabsorption, stunted growth, auto-immune disorder, non-celiac gluten sensitivity. And if you’re not careful, you may learn words like divorce, addiction, alcoholism, regret.

I don’t want to learn about any of that anymore. I’m tired of calculating odds and watching people get sick or die. Everyone you know who deals with “normal” emotions and life issues and marriage and kids and everything that seems “normal” has no idea what it’s like to deal with all of those issues given our “situation.” I thought I would have a “normal” life. Then some damn nucleotide called DQ2 or DQ8 took it from me. If I sound pissed…well, pfft!

So how do I cope? I write.

For 49 cents you can get a notebook at the store. Write. Purge it. Scribble. And screw the punctuation. You can handle it however you want, but I write write write as the road comes to me.

You see, these emotions are just one giant scroll of paper fed into the typewriter of my life. They will never go away. If I had wings, I would fly. Until then, I’ll just try to be a better driver.

Written By: Heidi Kelly

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