I speak quietly to the anthropomorphic blob of pain I'm so happy to have quelled for the moment: "Please please please just behave. At least until next Saturday."
After juggling calls from vendors and completing some time-sensitive tasks, there is a gap in my day's work load to work through some muddled thoughts before continuing my pixel-pushing day job at an ad agency.
The only trips I take away from my busy desk are for short walks or meditations in a designated "relaxation" room filled with plushy chairs and and pillows. It is used as a refuge for crying jags as much as mini yoga retreats and creative brainstorm sessions and is available roughly 70% of the time I need it to be. (It's an awkward thing to drop in on someone else's cry sesh with a yoga mat in-hand, but not entirely unusual.)
I drop by to find it's filled with creative colleagues, so I settle into the faux safety of my cubicle and look down at my dress printed with the patterns of the galaxy. I am complimented on the visually loud statement it makes every time I wear it.
"I always love when you wear that dress," a coworker exclaimed earlier as I walked past her to fetch a mug of decaf this morning (I crave the taste but can't always handle the caffeine).
I'm still getting used to having a dress in my collection that people look out for.
The fluorescent bulbs above my desk make me squint subconsciously. A good-natured coworker scrunches up his face at me as he passes, smiling at what he thinks is a funny quirk.
I think to ask once again about my desk reassignment to a darker corner of the office where I can better control the light.
I think about my bed. I think about how just yesterday I was saying, "I actually think my migraines are starting to feel better!" and realize the error I'd made in pointing out the good bits.
(They tend to scatter when you spotlight them.)
The white light emanating from my computer screen cuts harshly into my sinuses. I am four dots away from turning the brightness on my screen all the way to black.
The wedding is in just over a month.
At least I feel confident that I do - and will - look like a fucking goddess.
----
The brown parts of my hair have gone blonde and the colorful ends remain.
The wedding is in just under a week.
I peer at myself in the mirror and pinch the fabric at my waist. The black sleeveless dress I'm wearing is definitely bigger on me now than it was when I bought it, the gold threads woven throughout gleaming like squiggly snakes.
Humidity frizz.
I think about giving it away rather than having it altered. I think about how much I like my arms, how I appreciate seeing them, how nice it is that it's warm enough for bare limbs.
It's the night of my "bachelorette" party and it sucks that my head's in a vice, but it's not stopping me from layering on the liquid liner. It's just another version of normal.
Topamax has helped put a stopper on a need for daily pain tracking, and Relpax helps on the few days a month it breaks through anyway, but I can't take it often or it cancels out its own effects. I'd already used it on a day I needed to design our place cards, wedding programs, and a cake topper.
My husband and I were married at a courthouse in February but our big party and ceremony is planned for June at a venue mostly reserved for musical gigs.
My best friends had planned a girl's night in anticipation: dinner and comedy club outing followed by a house party complete with fancy bubbly drinks and fruit garnishes. Throw in a deck of Chippendale's playing cards (circa 1986) for good measure and nothing could stop us.
To me, the most appalling aspect of this photo is my naked thumb nail
Pleased to take note that my migraine is stuck behind a warm fuzzy wall, everything appears calm.
I speak quietly to the anthropomorphic blob of pain I'm so happy to have quelled for the moment: "Please please please just behave. At least until next Saturday."
----
I'm walking with my right arm through the crook of my father's, a bouquet of amnesia roses and lush succulents held in my left hand. I'm trying not to step on the front hem of my gown.
"Slow down, slow down!" my dad mutters gently.
"Sea of Love" by Cat Power is playing and my head is throbbing, but my face is glowing.
I feel sublime and like shrinking away simultaneously.
I don't see my husband until we reach the stage and he comes down to fetch me. My dad hands me over to him. I think about how archaic the gesture is, but it's also kind of sweet, so I don't care. Because the pain (or my focus on it?) dissipates when we're standing there staring at one another with my lips vibrating and a room full of loved ones watching us come together after such an arduous journey.
Maybe when there isn't any room for it to register, the pain floats above me to descend when I'm most vulnerable -- but in that moment, I am shielded. And it's not as if anyone else can see the struggle.
All they see is a new blonde with aqua-dipped hair that they know and love, laced into a corset gown, standing across from a good man in a kilt, ready to dance the night away.
I forgot what type of roses my florist had suggested until she reminded me that they're called amnesias - HA.
The pain persisted in an off-and-on fashion throughout the evening and grumbled to a powerful hum the following day, but it was not enough to slay me. Like throwing pebbles at a giant.
----
The nature of invisible illnesses and chronic pain are elusive enough to be guessed at by those who can only assume what they see from an outside perspective or pick up from headlines, news stories, and TV doctors.
Sometimes you can plainly see the effects of my illness in my eyes, the pallor of my skin, the way I present myself. Whether or not I have a pair of sunglasses on my face or pushed to the top of my head is usually a dead giveaway -- especially if it's not a particularly sunny day (or I'm indoors).
Most of the time? You'd never be able to tell I'm anything other than fat and happy.
My tolerance for pain keeps escalating, as does the pain itself at times.
It is hard to pretend it does not affect me, it is impossible to act as if it is not there, but I do everything I can to keep it from taking the wheel.
