I'm Back (and Grumpier Than Ever.)

It has become clear that I am incapable of maintaining my blog through a semester of teaching.  Between the hectic schedule (we're temporarily a one-car family, which is INSANE), the teaching, the grading, the parenting, the regular life stuff, and ever-present health issues, my good intentions fell down, paving whatever road I was on (we know which one), and I haven't written ANYTHING since January.  I mean no writing.  No fiction, no editing, no blogging, just reading for class and reading freshman papers. (No comment.) It's not been great for my state of mind, but I try to keep my head down and plug away.  The good news is that I posted final grades this morning, and I am a free woman till August.  Actually, I have almost a month until Kiddo is out of school, so I have three-and-a-half weeks of uninterrupted writing time, and dammit, I'm going to make the most of it.  So on this, my first day of freedom, I hauled my lazy, depressed ass to Barnes & Noble, laptop in hand (or in bag, as the case may be), loaded up on sugary goodness (London Fog and a GF marshmallow treat) and got to work.

Why, yes, I do have a filter addiction.  But it's so pretty.

I glanced through my notes and opened up a blank document on my Mac and freaked the *%#@ out. White space is infinitely scarier, more intimidating, when you've been neglecting your craft for months.  I feel like such a slacker.  So I decided to compromise by starting with a little blog entry (instead of ending with it as a reward as I'd earlier planned.)  For some reason, a blank blog screen is so much less frightening.  I think maybe it's the whole give-yourself-permission-to-write-badly thing.  I'm usually much less focused on perfection when I'm tapping out a quick note to my blog buddies.  (Sorry, nothing personal.)  But, it is writing and totally counts, especially on this first day back in the old writing saddle.  My computer is out, and I am practicing ass-in-seat with every ounce of self-control I have left.  (I probably have some to spare today since I didn't use any when ordering in the cafe.)

So what has been going on since January, you ask?  (It's okay if you didn't.  This is just about my continuing to type, remember?)  Well, Kiddo turned six, our cat has morphed into the literal spawn of Satan, I survived another semester (with a brand-new subject), I skipped another Valentine's Day, we killed another vehicle, I read (though not as many books as I'd like), I discovered the skinny London Fog at Starbucks, and I bought a new handbag (not something I do very often.)  Oh wait, I forgot the most important thing: I became completely obsessed with Hamilton.  My six year old now has a preternatural knowledge of Alexander Hamilton, Aaron Burr, and the Revolutionary War in general.  (I read Sarah Vowell's Lafayette and the Somewhat United States during that time as well, which only deepened the whole 18th century America obsession.)  I've also gotten really skilled at muting out the worst of the four-letter words in the musical's soundtrack whenever Kiddo is in the car.  We don't need her going to school and singing about the "Mother@#%*ing Democratic Republicans," now do we?

"Work" indeed.

Health-wise, I've remained in a bit of holding pattern.  Lately, I've been dealing with a med change that hasn't gone exactly as planned (mood swings and electrical-feeling brain zaps, anyone?)  Good times, but I haven't been hospitalized or had a major illness since February, so we're definitely calling that a win.  I still get frustrated by the way in which my health issues limit my lifestyle (and that of my family), but I don't suppose that is going anywhere any time soon.

So, while some things may have changed over the last few months, one very important thing remains the same:  I'm still a grumpy, cranky, get-off-my-lawn old lady who really wants a t-shirt that says, "He's a Komondor.  Yes, his hair is supposed to look like that.  Yes, he can see.  Go ahead and take your picture if it means you'll leave me alone.  No, I can't eat that.  No, I won't ever be joining you at a church event, as every single one is centered on food and people don't take no for an answer.  No, I don't want to talk about my Celiac, and I'm so happy that you once met somebody with a tummy ache which you're certain is the same thing and can be cured by juicing.  And stop thinking it's funny/cute when you (a grown man) tell my child she's going to marry you when she grows up."  

I know.  I'm a freaking ray of sunshine.

I hope this won't be a lone post .  No, I know this won't be a lone post.  I'm committed.  I have plenty to say; I just have to plan so that every post isn't an angry, cranky rant.  For now, though, I've put off that white space long enough.  My fingers and brain are warmed up, and the caffeine from my London Fog is circulating.  Time to get writing.

Resurrecting a Blog (and a Life)

It has become clear that my real skill is vanishing off the face of the earth at will.  Alas, an intense final month of fall classes followed by the holidays and yet another serious illness (including a hospital stay this time) has kept me from my blog and my writing (as well as lots of other things I love.)  It's discouraging, but it seems to be a fact of life around here.  The good news is that I'm back (again), and I've still got a few weeks until classes start back for me.  I'll be teaching English 102 this term, my first lit class, so there's an incredible amount of planning yet to be done, and I'm grateful to only be teaching the one class.  I am determined to use the extra time to get back to writing and to stop letting life and illness get in the way.  As in the past, this blog is a good tool for holding myself accountable to a daily writing schedule, and if I can manage to stay healthy for a few months, I just might make some progress.

Ah, my little workspace, how I have missed you.

Interestingly, these post-illness life reboots are something I haven't encountered in all my reading about chronic illness.  There's lots out there about missing out and fatigue and trying to help people understand invisible illness, but I don't believe I've seen anything about the starting over (physically, socially, etc) that happens after every episode or relapse.  After dropping out of circulation for days, weeks, or even months, you have to maneuver your way back into your commitments, your friendships, your schedule, and sometimes even current events.  And this isn't something that you have to figure out one time.  You are faced with this jockeying for position every time you return from a major illness (at least until you quit trying and withdraw altogether, which can be a real temptation.)  It's discouraging, intimidating, and isolating.  Basically, it sucks.  Every time.

First, there are the logistics.  You don't generally just wake up one day feeling hale and happy.  In fact, most chronic illness patients exist more on a sliding scale of wellness that never quite reaches "All Better."  So deciding when to go from confined-to-bed to back-to-normal can be tricky.  How much of your "normal" workload/social schedule can you even manage?  Because you don't want to cause a setback in your recovery.

Then you have all the people who have had to make other arrangements when they couldn't rely on you.  No matter how much they care about you and your health, these folks (whether they are work, church, or school colleagues) need someone they can depend on to get the job done, and when your ability to deliver is frequently a big question mark, it can be challenging to convince them to let you back in on the work.  This situation can be painful to navigate, as there is plenty of guilt and frustration to go around for both "sides."  I never feel anger for the person who's reluctant to let me back in, but I do feel incredibly guilty at having failed them and unbelievably frustrated at my body's repeated betrayals.  I'm organized and goal-oriented, and illness is neither of those things.

And let's not forget relationships.  There is a hard truth about chronic illness: When you're sick and confined to home or bed, the outside world keeps turning.  Friends still meet for drinks.  Couples still have dinner parties.  Movies are seen in theaters by those who are well enough to venture beyond their bedrooms.  While certainly, there are those close friends who make the effort to see and encourage you through your periods of incapacitation, it can be very challenging to maintain any sort of social circle when you're constantly having to drop out of the loop.

I have found this socially isolating aspect of chronic illness to be intensified by having special requirements or needs even when you are healthy.  Because of my Celiac, I am very limited to where I can safely eat, and so much (a dizzying amount really) of our social interaction is built around food.  Meals or snacks are incorporated into nearly every church event, club meeting, or even meet-up with friends.  So, even when I'm not pulling a bed-ridden disappearing act, I'm having to manage one of my illnesses by saying no to numerous social events, and it doesn't make for a very full dance card.

Lastly, these repeated beginnings lead to a sense of disconnection.  Talk about feeling irrelevant.  You weren't there.  You don't know the funny stories, the inside jokes.  New shit has come to light, and you missed the memo.  And to make matters even more awkward, every one you see wants to talk about --you guessed it-- your illness.  You look great!  You look tired!  You're so thin.  Should you be out yet?  I don't know how you do it. People are just being kind, and you know this, but when you're trying to make a comeback (for the millionth time), often the last thing you want to talk about is your weight loss or meds.  All you want, really, is just to be in again, to not be marked with that invisible "S" on your chest --Sick.

So here I am, yet again, starting over.  My writing, my commitments, my relationships, my life.  While I was on pause, the rest of the world continued on at what seems like double speed, and nobody recorded what I missed.  Thankfully, this was one of my shorter vanishings, but I live daily with the fear that I will vanish again without warning, and sometimes, I wonder if I'll ever despair of the fight to reinsert myself into my own life.

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.