Tuesday, October 6, 2015

That's Perfectly Normal

I have never been normal (an admission that is shocking to exactly no one.)  When I was a small child, my family moved.  A lot.  Whether it was school (when I was even in an actual brick-and-mortar school) or church or ballet class, I was generally the odd man out.  Children are not known for their immediate acceptance of the new and/or different, and I was both of those things on a regular basis.

In junior high, I stepped up my weirdo game when I developed a skin condition that prevented me from getting any sun exposure.  Did I mention that we lived in Myrtle Beach at the time?  The land of sand, surf, and swimming pools is not exactly the ideal spot for a budding heliophobe (look it up, people, I did.)  There I was at the ripe old age of thirteen and no longer allowed to go swimming or to the water park.  I couldn't even play kickball in PE (admittedly, not a great loss.)

In addition to these relatively minor physical limitations, I also set about making sure I was viewed as a complete weirdo by deciding to make my life a never-ending Anne of Green Gable cosplay.  (No, there will be no pictures of that in my post.)  While I did attend an ultra-conservative Christian school at the time (you know, the kind where it's a big secret that girls have knees and shoulders), I still didn't exactly blend in with my petticoats and lace-up boots.  But the pretending got me through, and I regret nothing.

One of out two ain't bad.  Right? Anyone?

I managed.  Though I continued to get less normal, especially health-wise.  Mumps at eighteen?  Absolutely. (And yes, I had been vaccinated.  See? I told you I was weird.) Chronic sinus issues that ended up in surgery?  Why not?  By the age of twenty-five, I was in less than stellar physical condition and was diagnosed with systemic Lupus and Sjogren's Syndrome shortly before I got married. I had required corrective lenses since I was twelve, but would have to wear glasses for the rest of my life because of the severe dry eye.  (I would also never be far from my artificial tears bottle.)  I was easily tired and often in pain.  Still it was comforting having a diagnosis.  (And I'd given up on the 19th century garb by then, so that was a bonus.)

Fast forward to two and a half years ago.  I was married with a small child, and I'd never felt worse.  Enter a new diagnosis: Celiac Disease.  What is that, you ask?  Well, the short version is that my gut doesn't like gluten.  No, it actually hates gluten.  Like get-those-kids-off-my-lawn-before-I-call-the-cops kind of hates gluten.  And every time I ate it, my intestines would call the cops, and the party was definitely over.  It got ugly.

Just for fun, try going a day without any gluten.  Trying going a meal.  It's tougher than you think.  Then, just to make things super-challenging, try to go a meal without eating anything that has even touched gluten.

And that's my life.

So here's the thing.  There's good and bad about always being that kid.  It definitely made me into a bit of a non-conformist.  I don't want to like the same things as everybody else.  And I don't feel the need to adjust my opinions/tastes/etc. to match those of the prevailing crowd.  Being an introvert, however, I do tire quickly of any attention my differences might draw (19th century cosplay notwithstanding. It's about forced differences.)

I like to be normal. (Not to be confused with conventional.)

I revel in routine.  It is a point of pride that I have lived in my house for nine years.  (A record for me by quite a few years.)  My little girl came home from the hospital to this house and knows no other home.  She went to the same preschool for three years and (I hope) will go to the same elementary school all the way through.  We have Taco Tuesday.  Every Tuesday.  We are incredibly boring.  And I LOVE it.

Kiddo and I started baking together when she was still in diapers.  One of my favorite videos is of her attempting to add chocolate chips to cookies only to miss the bowl entirely and dump them on the floor.  (Not included in the video is how sick the Big Dog got from eating just one of those tiny chocolate chips, but I digress.)  Every special occasion in our home included a heaping plate of my pan-fried chicken.  And my fried chicken fingers were a favorite at gatherings and parties.  I had a specialty.

But all of this ended with my Celiac diagnosis.  Our love of trying out trendy, high-end(ish) restaurants?  Over.  Baking anything we want in the cookbook with my assistant?  Over.  Having dinner with friends in restaurants and their homes?  Really over.  Being able to blend into invisibility at group functions that involve food?  So over.

Much like the condition that kept me from sun exposure in the land of the sun, Celiac keeps me from food in a time of my life when food is central to most social interactions.  When you have a severe food allergy or sensitivity, you become a problem to be solved, an inconvenience to be overcome.  Well-intentioned and kind people flock to your aid, only to be hurt and abashed (and sometimes flat-out offended) by your unwillingness to risk your health and sanity on their "gluten-free" offerings.  It's messy.

Still, I treasure routine and sameness.  Normalcy.  Celiac may have killed my love for cooking and baking much like my sun issue ended my enjoyment of swimming.  But there are bright spots that I treasure.

I found a way (through MUCH experimentation) to make gluten-free fried chicken and pan gravy that is comparable to my old glory.

There are a few restaurants where I can safely eat, but far better is the gluten-free restaurant in Asheville, Posana, where I can order anything I want off the menu.  Until that choice is taken away from you, there is just no way to appreciate how intoxicating that freedom really is.  Bread? Biscuits? Cheesecake?  It's all safe.  And in a gluten-free establishment there is no worry about cross-contamination.  It is, in a word, glorious.

The worst part of all of this (for me) is how it affects Kiddo.  While I understand that I can't protect her from everything, I desperately want for her to have the option to be normal.  I want her to have the same bedroom year after year.  I want her to know the same friends for as long as she chooses.  I want her to go to birthday parties and sleepovers and not to have to say, "I can't eat that, do that, etc." And most important to me, I never want my limitations and weirdnesses to affect her (an impossible dream, I know.)  If she wants to grow up to be a rebel, a non-conformist woman with a bit of an exhibitionist streak, so be it.  I just never want that label, that burden, placed on her shoulders by me.

So these are some of the things I treasure:

My little cookie-cutter house that looks exactly like at least three other houses in our neighborhood.

My church, where I've attended for nearly seven years, where the people and the place are beautifully familiar, and where Kiddo feels safe and loved.

My gloriously boring little family.

Taco Tuesday.

Kiddo's gymnastics class where all her little friends from preschool go.

Knowing my way around, not one, but two towns.

Having a specific doctor for every illness, having our dry cleaner, after-church restaurant, dentist, etc.

Friends that I've known and loved for nearly my entire adult life.

Some of these things may seem trivial, but I've made this sameness, this routine a priority for my own happiness and sanity.  I've made sacrifices for it, and I'm going to revel in it for as long as it lasts.


**My original intention when I started this particular post was to also talk about the beautiful normalcy that General Mills has given back to me with the addition of their gluten-free Cheerios and Honey Nut Cheerios (my go-to childhood breakfast.)  Since that time, however, General Mills has issued a recall on nearly two million boxes of Cheerios, due to incorrect labeling of "Gluten Free" on boxes that weren't.  When we're talking about people's trust and health, that kind of mistake is inexcusable. When the gluten-free boxes were released, Twitter was lit up with Celiac patients celebrating this bit of old-school normalcy (and safety) in their lives.  We could finally have something other than Chex for breakfast (don't get me wrong, I love Chex.)  Here was a cereal that wasn't a special variation on the gluten-filled version.  This cereal could be purchased in any grocery store and for the same price as other General Mills cereals.  And now we're told that General Mills was extremely careless with the health of its customers.  It's disappointing in a way that is difficult to articulate. 

No comments:

Post a Comment