WWED?

As I re-read the contents of this blog, spanning the past few years with several long gaps, varying degrees of anonymity, and accompanying various use of writing skill (along with good judgement or lack thereof), I wonder about the “lady” I’ve become. In real life, I’m not sure I am any longer a worthwhile friend, or a good mother. Online, I am lucky to seem like a nice person saddled with a chronic illness. On off-days I can appear to be a thoughtless ditz, certainly selfish. And possibly even racist, as an outraged comment brought my eye to something I did not remember writing and would never have thought myself possible of even thinking. In this new age of hashtags and politicized poverty and new healthcare and new (as well as old) medications, legal and otherwise, my memory is starting to be extremely, immediately unreliable. I am no longer editing and proofing, re-writing and re-thinking and am blogging the way some people tweet. Without thinking. Without considering how public words can reflect everything about who you are as a person, a parent, a partner, an employee, or a friend. Words can make you a sufferer of pain, or a seeker of drugs, or a surviving warrior. By throwing fingertip to phone when I am at my worst and my most upset, I am also recording very publicly my most private thoughts when I am currently in or recovering from or medicated heavily because of severe head pain.

This is not the way I want to be remembered. This is not the way I want to be known, now.

What would elizabeth do?

I’m not even sure I know who I am anymore. Always insecure and sensitive to others’ opinions of me, my identity has mostly been formed by where and with whom I spend most of my time. I no longer have a job and have not, now, for over a year. I am in some varying amount of pain every day. I have become housebound, partly because of this insane winter and partly because it is easy. I have a wonderful husband and great family support, but my husband suffers from PTSD and is more and more estranged from his own family and mine has to support us. “Sir,” as I’d started calling him as my blog began exposing us more and more, is very close to being gainfully employed again, and of course we are no longer moving, but the financial difficulty takes its toll. I spent time and agony getting us on Medicaid, which was necessary but has really compromised my all-important healthcare. My estrogen patch and injectable failsafe migraine medication are not covered at all, and neither was my antidepressant until I realized it may be contributing to near pseudodementia and I decided to start the very slow process of weaning off of it. Google “Cymbalta discontinuation” to learn about how hard that can be. And now, of course, since I no longer want it, it IS covered. I decided to not purchase my 5 vials of DHE for $304 because after 4 injections one week last month, I still had to go to the ER twice. And the ER is now “free” even though I sometimes get treated horribly there.

My Medicaid insurance, Paramount Advantage, is what allowed my formerly wonderful headache care doctor (but actually only primary care) to refuse to treat me any longer when he chose to leave his practice for a new one further away due to “disagreements with colleagues.” He had told “Sir” (heretofore referred to as “J” bc Sir feels weird) that of course we could follow him there, and with the ease at which he had been tossing me medications – methylphenidate as an offbeat migraine preventative at my suggestion, increased amount of sleep and pain medication seemingly out of the kindness of his heart – we would be crazy not to. But that was before I started faithfully using a chronic pain tracker app to really record how much medication it was taking to banish my pain. Prior to 2012 or so, I would be hospitalized for a few days several times per year when my headache cycle became too hard to break. But the hospital model changed and family physicians were no longer allowed to have their patients admitted. Only hospitalists were allowed to do that, from the ER. After that I was admitted only once. It took 12 hours just to make them understand the medication formula I needed: DHE to dissolve the root of the migraine, Dilaudid to knock layers off the top. That last hospitalization was two years ago. The occasional professional breaking up of my cycle was obviously desperately needed, because since then I stopped being able to hold down a job, have required much more of my own medication, and my quality of life has decreased immensely. It is heartbreaking and I try not to dwell on it too much, but I was finally honest with Dr. P about what happens when I come home from the ER still at an 8 or 9. At my January 31 appointment, he acted extremely horrified, cruelly said I was “frying my brain,” did not want to talk about Cymbalta, and dropped me as a patient by claiming his new practice did not accept Paramount Advantage, a Medicaid managed care plan I chose because his current/former practice accepted it.

Being dropped by a good doctor has always been my worst (non family death scenario) nightmare in every incarnation of my identity. Being treated as a drug seeker in the ER has been enough to make me feel worthless and suicidal in the past. This much worse, much more permanent horror of rejection, hopelessness, fear and despair caused me to tear out of that office, shake off J’s concerned hand, and run. Run for my fucking life in a fleece skirt and huge clunky boots through the hospital parking lot, screaming for J to let me go, leave me alone, and to catapult myself headlong face first onto the cement. Collapsed in a heap with torn up knees and elbows I refused to get up, still sobbing, until I became aware that a worried passer-by who was calling me “sweetheart” and inquiring about my well-being might call the police thinking there was a violent domestic dispute.

What would elizabeth do? No matter the year, no matter the place, no matter my in-question Disability application, exactly that. My illness has always been severe enough that terror of unmitigated, misunderstood pain is life altering, life threatening. My depression has always been problematic.

This scene in the parking lot was before I knew that Dr. P was also, besides dropping me as a patient, busily disconnecting me from the medications that he had so recently freely prescribed. I had been honest and I had trusted him to help me. To first do no harm. I had to take a lot of pain medication, but I knew how much would damage my liver and stopped before that point. I had to take a lot of imitrex and a lot of DHE but I knew how many hours to wait between them to avoid serotonin syndrome. This because of a hospital system that could no longer admit me for intractable migraine. Was Dr. P saving my life that day, or endangering it? My answer might be different if he had made a referral, or a single helpful recommendation, or if he had, in months previous, made clear exactly how long he expected me to make the medication last. He did none of those things.

What would elizabeth do, or Elizabeth, for that matter? What would LadyMigraine do? Or Stargirl, or Samantha, elio or e-bot, Mommy, or Partner, daughter or friend?

Would she at least save this post as a draft, think about the words, and edit later?

The doctors I called the following day either refused to treat me because they already knew I had a “complicated case,” or I took too many scheduled drugs, or they did not take Paramount Advantage. My neurologist could not get me in until April. The one office that would take me was a pain clinic at which “elizabeth” has always sneered. I know they count pills and urine test to make sure you’re not selling if they finally do agree to prescribe. And then, thinking Dr. P’s office would at least be concerned about continuity of care, I tried to renew my prescriptions until I could get a referral and records transferred. It took 3 phone calls, increasing in panic and disbelief, before I really understood I was cut off. What is the difference, then, between a PAIN problem, and a PILL problem? Turns out, there is not one.

I changed my Facebook profile picture yesterday to the photo of me in 2009 holding my premature infant baby daughter for the first time, because it was her 5th birthday. I like that self so much better than this one. And in 2005, when my first daughter was born, I like THAT self even better. At that time I was still working at the coffee shop and had so many real-life, wonderful, sincere, loving young friends that they collectively took up my entire hospital room, lining up in a beautiful row of eclectic pre-hipsters, clutching dandelions and weeping tears of joy.

What would elizabeth do?

It turns out, as my supply of essential medication dwindles and I see real-life friends less and less; have no job, no money, and no doctor; post unedited blog entries willy-nilly and forget entire cross-country vacations and live only inside these four walls and inside my own head and have a dog when I was never a dog person and do nothing to help anyone or contribute to the world in any fashion and allow my illness to define me and just sincerely hope I can assist my husband and children to make it alive through another cold winter Ohio day… that I no longer know what I would do.

At the very least, I will save this post as a draft, think about the words, and edit it tomorrow.

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The Migraine Diaries: Four [1978]

It would start with a silent pop, a feeling of letting go, somewhere deep between the eyes and behind the bridge of my nose. Next came a similar burst of panic in my chest, rapid searching for the nearest tissues, washable cloth, or, if all else failed, a place to hide and cup my hand to my face; it was so much easier if I could catch the surge of blood before it reached my mouth. That taste of of rust, of brains. Of health gone wrong.

When I was young I was afflicted with severe, frequent nosebleeds. I can’t imagine the terror my parents must have felt; just imagining my own five or eight year old with blood pouring in a torrent over tender lips, chin, and carefully laundered shirt is enough to make my heart seize. There was never a reason. Never a connection made to the headaches, either. Blood, bright red and deep from the source and hard to stop. Silent violence, unfair, insult to injury.

We were told to tip my head up and pinch the hollow at the top of my nose firmly until the bleeding slowed and stopped. My eyelids would blink rapidly, tears forming at the corners. I would try not to gag at the thick clotting warmth at the back of my throat. And then it would be over, sometimes quickly, sometimes only after repeated attempted releases. We all felt traumatized, the detritus of soiled bright red tissues scattered around the scene like abandoned bandages in a temporary triage unit. A strange fragile heaviness in my face and sour stomach would remain all day.

My only memory of kindergarten involves the pop, the rapid search, and the cupped hand, with nothing to sop up the blood and nowhere to hide from the stares at my little round table. This time the panic surged and overflowed. Since I hadn’t gone to preschool or daycare I was separated from my parents for the first time, and my matronly teacher seemed stiff and stern. As I’d been taught, I gingerly raised my free hand for attention, and when her gaze rested upon me I felt exposed and guilty as though I had caused a scene on purpose, created a heavily bleeding, misbehaving nose as a distraction. Apparently unassociated and comparatively invisible, the migraines would cause me to feel a similar way for the rest of my life.

“I – I need to go home,” I stammered miserably. “My nose is bleeding.” Being rejoined with my gentle quiet mama was the only solution which made any sense to me at the time and I longed for the soft familiar, a yearning intertwined in my memory with the salt of tears and blood. Make it all better, Mama. Because I was sure this woman could not. And she did not, her displeasure alarming me to this day.

“You will do no such thing,” I can feel her pronouncing, annoyed at the interruption, like the Queen in Alice In Wonderland. “We will take care of… that… here.” Of course I don’t remember what she said, exactly. And I have no idea what happened next; I just know I wasn’t allowed to go home. Though obviously not made to sit and continue bleeding onto my hands at the table, my forty year old heart feels like that was exactly what happened, blood drying on white pinafore, the shameful evidence of my aberration.

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The Migraine Diaries: Three [1981]

Scuffed brown shoes, slither-slap, slither-slap on the worn but clean linoleum floor as I wait anxiously for the nurse Dr. Brown said would be arriving shortly. I have what they called a “gown” on top but this is nothing Cinderella would even have worn to clean out Lucifer’s litter box. Blue paper, white ties. Which are tied. I start swinging my ponytails back and forth across my shoulders, enjoying the swish-swosh in time with the slither-slap still sounding from the floor. Woah the room is spinning. Stop that. My formerly musical shoes now press down firmly with tension and I grip the vinyl trim of the examining table. The movement of the world stops but the dark spots in front of my eyes don’t. Neither does the dizziness – for turning my head a few times? And okay there it was, the first foggy pain unfolding like a delicate flower behind my left eye. Should have known. I close my eyes against the fluorescent lights and the door opens.

“HELLO!” Sings a very loud accented voice. She wheels a big machine behind her and seems super friendly, but all I can do is wince in response. “Oh, you’re the my grain girl huh?” She says, a little softer. She clicks her tongue in apparent sympathy as she dims one set of lights (“Thank you,” I whisper) and busies herself unwinding the many loops, cords, and round things from this – contraption. My grain girl? Where had I heard that before? I close my eyes and remember a whispered conversation, perhaps a bit too loud in worry as my little brother bounced around the room with a Bugs Bunny pencil clenched in one fist and one of my good markers in the other, bap-tapping drum beats on every solid surface. “Tumor…” I remember hearing in anxious grown-up tones that day when Josh’s noise suddenly ceased. Concerned glances, hands over mouths. “Even if it is just my grains both our fathers” [Bap-tap-tappity-tap]. Both our fathers WHAT? One was dead, one was, well, reserved and a little odd.

Distracted, I marvel about the worlds one mind can contain. Memories, like the one I was just reliving, and also books. Reading is my favorite thing, especially Ramona books by Beverly Cleary. When I am truly absorbed in one, it’s like a different world is created in my mind. Well, first in the author’s mind, then in mine. I want to do that, be a writer and create entire worlds. That would be a unique kind of power, kind of like magic… I snap back to attention and eye the white adhesive disks nervously. “Samantha, this won’t hurt a bit.” She smiles and I relax.

“My name is Cathy and this is an EEG machine,” she explains. “I’m – just – going to attach – these, ” she breathes as she sticks the white suction cup looking things to my scalp,”to different areas of your head. Wow, your hair is really thick! These wires record your brain waves. Ready?”

“Uummm…” Cathy presses a button and the machine starts with a loud clank and whirr and okay, she was right, it doesn’t hurt. Lots of green pens trace different wavy lines across the unspooling paper next to me. I can’t stop staring. Those lines hold the answer to my super bad headaches, pain so awful that I sometimes throw up. Mama usually gives me that strong fruity cough syrup and it kind of seems to help, or at least let me sleep. It could be a — tumor? That was the scary word I had overheard them saying. I think it means death.

When the test is over Cathy cheerfully rips the gel covered sensors off my scalp, neck, and forehead. “Yea-ap, this is the worst part!” She exclaims as I shudder, and I finally realize she doesn’t have so much an accent as she has a huge pink wad of gum in her mouth. I suddenly want some. My mouth waters. “Here ya go!” Cathy says, tossing me not a piece of Bubblicious, but my equally pink polo-style shirt with the little green turtle sewn on it. When Cathy has trundled away with her machine I yank off the hospital thing and hurriedly pull my real shirt over my ponytails. Mirror. Weary-looking. Oh well. And I step out into the hallway, toward my anxious parents and the rest of my life.

The next day, the phone rings. It is still New House to me, Mama always covered with flecks of paint or smelling of whatever stuff she puts on the wood to make it shine. It’s a house close to other houses, in a new town. A school with a playground across the alley in back. Children on bikes. I’d met some of them. I jump as the phone jangles again and Mama glances up, wiping at her forehead with the back of her hand. “Honey get that would you please?”

I do, speaking the polite words I’d been taught. A nervous man-voice. “Hello – uh – yes hello dear. May I speak to one of your parents?” Mama has gone to wash up I guess and she hurriedly takes the receiver as I hold it out to her. She shakes her pretty head and dust makes a cloud around her. “Hello?” She says in her telephone voice. She listens and all is still, the very room, even the ticking antique clock seems to stop. I back away. “Yes of course.” She says stiffly. “Three o’clock is fine.” She hangs up in a daze and I back further and further away until I’m at the stairs. “Jeffrey!!” She calls out in a strangled voice which Dad is sure to not hear since he and Josh are out in the yard. I turn and bolt up the stairs to my room and shut the door firmly. I turn to face the zoo of stuffed animals on seemingly every surface. “It’s my head,” I tell them knowingly. Their eyes glitter in sympathy.

We had begun to know the neighbors. The house to the left of ours, if you stand in front, belongs to The Smiths, and Charlene Smith runs a little daycare there. It’s summer, and there are more than a few ragtag children playing in the yard almost every day. Across the street, the Thompsons, a nice young couple, both of whom have long curly hair, always have a baby wrapped to one of them in some kind of tie-dyed cloth thing. The Smiths’ house, or yard actually, is where Josh and I will be hanging out for an hour or so while my parents go to the doctor’s office for an important meeting. Outside, clothes changed, my father’s slightly bristly jaw seems clenched and mama’s eyes are steely, but glistening. Josh attempts over and over to stand on his head while Steve, Charlene’s toddler, giggles. I suck the end of my braid knowing that what I will learn upon their return will be it, for me. “It won’t take long,” my mother says, again in the strangled voice. “Be good children and listen to Charlene.”

“Oh don’tchoo worry none about these kids they’ll be doin’ just fine!” Charlene drawls as her bright orange hair falls over her pockmarked face. I glance up in time to see Dad say to Mom quietly “Then again, maybe don’t listen to her…” Mom rolls her eyes and almost smiles and I turn as they get in their tiny Datsun station wagon, poking Josh in the stomach so he giggles and falls.

I am sitting in the grass, pondering the start of 3rd grade at a new school when the Datsun roars loudly back up the driveway and into the little garage. They’d been gone about an hour I guess. The little piles of grass I’d been making were bigger than I’d realized. One pile: tumor. One pile: my grains. A door slams and unbelievably I hear the amplified ringing sound of Mom’s laughter. “…serious to discuss,” she trills in a funny voice.

“I told you not to worry so much,” My dad is amused and calm. I spread the Tumor pile out, blending it in with the rest of the grass. People don’t laugh at tumors. But what are my grains? I don’t like the sound of that either.

“Everythin’ all right thin?” called Charlene out her back door, Josh escaping through the lumpy inverted V of her legs.

“Yes!” my mother’s voice is calm and polite. “Thanks ever so much for keeping an eye, let’s go inside children!” I stand up and Josh seems to almost roll from one yard to the other.

“T’weren’t nothin’,” Charlene says as her squeaky screen door slams behind her. My mom laughs again, quietly, as we follow her around to the side door, no new deck and back door yet for the Robbins Family. We sit at the dining room table. Josh picks his nose, Dad peers out the window at The Smiths’ house, ever curious.

“What does MR. SMITH do, do you suppose? Josh stop that,” and swats Josh’s hand away just as quickly as Mama produces a Kleenex and sits down with a sigh, something rattly in her other hand catching my attention.

“Samantha, sweetheart, that test-”
“EEG” I said quietly.
“Yes, you’re right, sweetie, it measured your brain waves. Dr. Brown called us in today for a meeting, all serious, so we-” my dad smiles ruefully and puts his hand on her arm and my mom stops. She sets the bottle in front of me. SAMANTHA JANE ROBBINS it says. FIORINAL. It says. TAKE ONE AT ONSET OF “Congratulations” Mama said. “You don’t have a brain tumor, but you do have all the indications of My Grain Headache.” I look puzzled at my dad, the answerer of unanswered questions.

“Those headaches you’ve been getting, that make you throw up sometimes? They’re called my grains, M-I-G-R-A-I-N-E,” he explains. Ah, so nothing to do with food type grains, I had been picturing wheat and rice. “They run in families, and your mom and I both get them, but my dad and your mom’s dad got ’em the worst.” He glances back at Mama who is heading toward the kitchen, Josh seemingly trying to yank down her denim skirt on the way. “We were really scared Samantha, the way that doctor called us in for this serious discussion. Turns out you’re fine, but….” he thoughtfully turns the pill bottle around in his hands. “What you’ve got are migraines. A certain kind of bad headache. That’s all.”

I take the bottle from him. Listen for the first time to the distinct hollow rattle capsules make against rounded, capped plastic. TAKE ONE AT ONSET OF HEADACHE. “Isn’t your daddy dead?” I ask. There’s a Grandpa, but I know he’s not Daddy’s father.

Dad sighs. “Yes.” He answers, sadness briefly touching his green eyes. “But migraines didn’t kill him.” He takes the bottle from my hands with its satisfying percussive, mysterious shake; magic beans which just might remove the pain that rips through my skull and all every which way, pain which certainly seemed to me it could kill someone. Bottle in hand, he heads upstairs.

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The Migraine Diaries: Two [1979]

Don’t lie down while watching TV. I had learned that one the hard way, after several consecutive episodes of M.A.S.H. with my parents, lying on the couch because it was near bedtime, and sitting up at the ending credits with a sudden, blinding headache. Cartoons, too, on my stomach on the goldenrod carpet, chin in hands, in that typical kid-on-Saturday-morning way. Those times it was my neck that would hurt first, producing a different type of head pain, like a tight rubber band instead of hot eyebrows. Both these types tended to be two-sided at first and would gradually shift to one side or the other. I was learning at 5 to recognize different types of headaches, from different sources. My migraines still occasionally switch from double to single, back again and to the other side, within the same headache, for no reason I can determine.

I was thinking about my TV – headache rule as our big Chevy rounded another tight curve on the side of a mountain in West Virginia. My stomach lurched and I glanced down at my Dover Birds coloring book, where I had a Baltimore Oriole colored in about a third of the way. I wasn’t happy with it. The winding, hilly road made it very difficult to stay inside the lines, and while I knew it wasn’t strictly necessary to do so (being a child of Free To Be, You And Me and the Anti-Coloring Book) these illustrations were very grown up, of actual birds instead of childlike drawings, and I wanted them to look nice. My parents had put on the Sesame Street tape with the bathroom sing-along, Bert being stuck in the tub without a towel. Woah — biiiig hill. The sensation was sort of like a balloon in my stomach filling with too much air. I felt queasy and a little too warm. I glanced over at my brother Josh, who was asleep in his weird bucket seat and sucking his thumb, the breeze from the open window ruffling his reddish baby hair. The curves and hills didn’t seem to be bothering him at all, and I wondered if it had something to do with the thumb. I considered trying that myself for a moment but dismissed that idea as I shifted uncomfortably and leaned my face toward my open window, where I could smell dirt and trees and that odor cars make. I decided maybe I’d better just read, as that seemed less active than coloring. Instead of placing my orange colored pencil into its box like I normally would have, I just dropped it into the denim bag Mama had made with all my other things for the car in it. Ugh. Daddy was driving, and smiling, because he’d grown up here and I knew he liked driving these roads. Mama’s hand, which is about all I could see of her, was gripping the arm rest hard enough that her knuckles were white. Another curve, and the thin guard rail was bent and I could see through the trees all the way to the river far below. What would happen, exactly, if the car crashed through that guard rail and careened down the hill? On the other side of the car was sheer caramel-cut mountain. If another car came just at the wrong time… or a deer… there were probably even bears here. West Virginia was very wild and exotic. My grandma and grandpa, daddy’s mom and not real dad, lived in a place called Alderson where there was a rocky river to swim in and a prison containing a bad famous lady named Squeaky Mouse. Up a steep hill, swing around a tight curve. I should tell Mama how bad I felt, but what could be done about it, really? “John Jacob Jingle Heimer Schmidt, his name is my name too!” the tape sang. My head felt kind of swimmmy…. a Sesame Street book, no, that Goldbug one. I pulled out the big Cars And Trucks And Things That Go and studied all the different cars and trucks on a random page. There was the little bug in his little car. I carefully read all the words that labeled the vehicles. None of them were on a mountain road like ours. Ugh – oh no. Sparkles swam in front of my eyes. I had that balloon feeling behind my ribs again, and there was one in my head too, and they were both going to pop. The book slid off my lap around the next curve. “Maahhh- ma” I kind of croaked, and somehow she heard me.

“Jeff, we need to find an emergency pull off,” she said urgently. “Look at your daughter’s face! NO! Don’t!” the correction came quickly but dad wasn’t about to turn around.

“Susan, there is nowhere to pull over for miles! Um… can she climb over the seat and sit on your lap?” My dad’s eyes never left the road. He was right, where would we go?

My mom hesitated. “What good would that do?” She said frantically, turning around to face me and reaching to smooth my hair where the wind was blowing it. I closed my eyes. Everything was spinning.

“Well isn’t it true that people don’t get as carsick in the front seat?”

“Okay.” Mama had decided. It was the only thing to do, the only thing we could do. “Wow, I’m glad Josh is still sleeping,” she said, holding her arms out gingerly as I unbuckled the wide lap belt and kind of half stood up. “Oh, why can’t they make an alternate route? This – is – craaazy…” She pulled me over the bucket seat, my long legs flailing as I tried not to kick Daddy, and into her lap. The jarring of my body this caused did not help. I leaned my face toward her window which was only half open and clutched my stomach. “Oh, Jeff, she’s going to throw up. We need to stop.”

Yes. Stop. Please. The front seat wasn’t helping. The further rolled-down window wasn’t helping. Being able to see the thin curving road in front of us wasn’t helping. On one side was a sheer drop, on the other side was now dense forest and there was certainly no place to park a car. I noted how badly my head hurt, which seemed connected to the feeling in my stomach. The two balloons were joined by a tightening string. As my parents were half-arguing half-panicking and my belly balloon was rising, I automatically began to trace back in my mind, as I had learned to do, to figure out what had caused my headache…

“Kind of – hold her out the window! Like her head!” Daddy inexplicably yelled. Out the window? “What else can we do? She can throw up out the window.”

I started heaving, and this was going to have to go somewhere. I read “Rainelle 60” on a blue sign and then couldn’t see anymore. I heard Mama yelling something and felt air rushing against my hot, sweaty face. Hands firmly held me and there went the balloon, out the window in a rush of awfulness and relief. I slid back inside, my head still pounding, and wiped the back of my hand across my mouth. Josh was crying now, the tape was still playing (“She’ll be comin’ round the mountain when she comes…”), and both my parents were yelling something – why did it smell so bad?

Mama started to laugh as Daddy continued to drive and lean toward his window to avoid the unmistakable stench of partially-digested kid food. I faced the back seat, which was covered with splatters. “Oh, we thought we were so smart…” Mama laughed until tears squeezed out of her eyes. I realized all of a sudden what had happened. I had thrown up, and instead of going on the side of the road or down the hill or on the outside of the car, the force of the wind had caused it to fly straight back into the back seat area through my still-open window, narrowly avoiding Josh but all over where I’d been sitting. Eeeeewwww. What could we do? We kept driving. I leaned my face into Mama’s neck and thought: Reading in the car. That was a new headache rule. No lying down while watching TV, and no reading in the car.

The Migraine Diaries: Prologue [2014]

At this point in my life, without assignments or deadlines, I can only write what I know best. Recently I find it easier to chronicle my headache history, which is firm and rooted, rather than hashing over my still painful and uncertain present. I have fictionalized by renaming, combining, and filling in, but never exaggerating. For my own convenience (but with annoying difficulty!) I have moved these chapters from a separate blog page to individual entries. Thanks for reading; and as always I am grateful for your patience and understanding.

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The Migraine Diaries: One [1976]

Tiny little head, big bed. Diffuse curtain light too bright. Is it supposed to feel this way? Drifting miniature fairies dance the length of the beam. “Dust,” mama whispers, pressing the cool cloth gently across my forehead. It hurts more on the other side, but I don’t tell her. I close my stinging eyes, then open them quickly in astonishment. It HURTS. Wait – why? Did I hit my head outside in the chicken coop where there are no chickens? Did the doggie knock me down? Focusing briefly again on the bright stripe and its dust angels – o no not there – quickly look away at a dark corner and notice to my astonishment they are still there, even out of the pain-light. Clear, dancing squiggles. Blink eyes. Still there. Mama still patiently pressing the middle of my forehead, but the cloth feels like ice cream Kleenex.

“Mama,” I murmur, trying not to let the pain and anxiety turn my voice to a whine, “The dust fairies are everywhere, even in the dark.” A deep sigh lifts her reassuring weight away for a moment. “Well honey I haven’t really had time-” Sudden silence. She sits up, removes the cloth, and looks at me for a long moment, her father’s torment newly fresh in her mind. “Look over there, sweetie.” She points at a blank wall.”Do you see them?” I nod, not knowing if this is the right answer. Mama sits still, her face flickering with thoughts and memories. “Do you see anything else, like – like blank spots or flashing lights?” I shake my head. Ouch. No. 

Mama unfolds the damp washcloth and puts her whole young, pretty face in it, her auburn hair now catching the late afternoon stripe of sun. I squint and watch embers dance along its strands. How I want hair like my beautiful Mama’s. She lifts her head quickly, her mouth a straight line. “What side does your head hurt on, Samantha?” All of a sudden she understands that part of it and I try to smile, though somehow that hurts as well, and Mama does not respond.

“This side,” I say with relief, gesturing to the area above my left eye. Mama sighs again and re-folds the washcloth to the perfect size, placing it now directly over the pulse of pain, the pain that came from nowhere. She leans over me again, and I, and my pain, are home. “I so did not want this for you…” she whispers, and I don’t understand.

Upon The Loss Of Another Doctor

This job, the simple job of pretending we feel all right while hugging our spouses and kissing the tops of our children’s heads; of negotiating new doctors and treatment plans and insurance coverage and basically having to BEG for the basic care we deserve while burned-out advocates, as they occasionally must, slip away to their own pain-free worlds; leaving us as alone and helpless as the day we were born, already carrying this gene, already feeling the pain and screaming, screaming for it to stop. I know I’m not done with this battle. Because of my family, and that is the only reason. But I feel like I’m done fighting. Not even just for a “cure,” goddess forbid. But COMFORT. Security. A solid pain relief plan for when this monster rips apart my skull and twists my soul into a knot and won’t let go and won’t let go and WON’T LET GO WON’T EVER LET GO.

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