Wonderland

Your fingers seem longer, thinner
alive in their own right, as they crawl among the pill bottles.
For a moment, you feel like Alice:
labels are meaningless, but you’ve tried them all.
The tall green one will cause strange words to tumble
over and under and from your lips,
while this orange one brings dreamless sleep.
And as you mix yourself
a cocktail that rattles in your palm
you wonder –
how did she climb back out
the rabbit hole?

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Swan Song

I am dry.
Used up, spent and empty.
These words flow sharply,
In an unnatural staccato,
Impeded by pain and blinded by fatigue,
It seems there is no more to say.
Where once there were silken alliterations and gilded symbolism
Alive and verbose, there is silence.
Dusty, dark, and damning.
Used up, spent and empty.
I am dry.

 

Insidious: The Evolution of How We Understand the Migraine

I suffer from Chronic Migraine Syndrome.  If you are someone who occasionally has headaches, please do not tell me you feel my pain – I appreciate the sympathy, but you do not.

            Often, while lying in the fog induced by the complete crippling of my brain, I have tried to find the words to describe this hell to someone else.  Because I feel this irrational need to explain to you why although nothing appears wrong with me, I am utterly incapable both physically and mentally of doing anything other than remaining stationary in a horizontal, typically fetal, position.  And sometimes I come up with words that seem almost close enough. 

            It can be a raging storm.  It builds in intensity and rails against every part of me.  It causes the light to burn and sound to thunder.  I become nauseated with the constant pressure.  It can also be a wild animal.  Stalking from place to place, this pain is piercing and localized.  While I may be able to sit up and talk to you, if it moves to a new spot and begins to attack it can cause tremors and twitching.  This is what I have pictured while being ravaged, the storm and the predator, destroying me from the inside.  When I tried to explain them to my husband, he smoothed the hair from my forehead and told me to go back to sleep.  But I think anyone who experiences either type of the localized, piercing pain, or the more ubiquitous pressure, will recognize the analogy.  Perhaps they too have been haunted by these scenes as they try to grasp on to anything that isn’t pain.  But then, I have always been given to the more literary flair. 

Let me be clear, these instances of lucidity do not always occur.  I have begun to think of them as a tiny version of myself, hiding somewhere deep in the recesses of my brain while the pain rages all around.  Sometimes she is never found, and chatters inanely about increasingly ridiculous topics (I once decided that a particular migraine was a pack of rabid howler monkeys and narrated their rampage) while the pain gets worse and worse but since she won’t shut the fuck up, I can’t fall asleep and get any relief.  Sometimes she is drowned in the pain, losing consciousness but still alive and allowing me to slip blissfully into the black.  That is the best you can hope for.  And sometimes, she is hunted, systematically, and tortured until she breaks.  Then there is nothing but the pain.  I can’t describe it any other way – I retain no trace of myself and know nothing but the excruciating crush and pull.  I understand how dramatic this sounds, but migraine suffers will know.  This is the worst. 

Under the influence of pain, I have said some things I imagine I wouldn’t ever say otherwise.  It can be a strong motivator to receive relief of any kind.  A sad fact that my family is more than familiar with. 

My grandmother, I am told, was a beautiful woman.  Her name was Rosalee.  I am also told that she was prone to depression, bouts of extreme emotions, and would often confine herself to her room for hours or even days at a time.  She saw doctor after doctor at her husband’s request, most of them psychiatrists.  I am told that most of them pronounced her mentally ill in some way.  She took her own life on September 14, 1971, leaving behind two daughters that were 9 and 7. 

My grandmother also suffered from what we now know to be migraines.  My mother remembers her lying in bed for days at a time in extreme pain, needing it to be dark and quiet.  We believe that this is why she sought help from doctors and was instead rebuffed with dismissals of feminine hysteria, mental instability.  In the end, it became too much.  The pain and the disbelief. 

We are so convinced that my grandmother suffered from migraines not only from hazy memories of a young girl, but because chronic migraine syndrome is genetic.  My mother suffers from it, my children will most likely suffer from it, and it is almost certain that my grandmother knew the pain of migraines.  (Incidentally and interestingly, the same gene mutation that causes migraines also causes seizures with a slightly different mutation.  Did I mention my brother has Epilepsy?)

My mother also experienced something similar.  The first doctor she saw when she began experiencing migraines in her early 20s told her that she was just depressed and therefore her “headaches” were “psychosomatic” in nature and she should just buck up.  My mother, being a rare breed, told him he could kiss her ass and was that “psychosomatic” enough for him because if not she could report him for misogynistic douchebaggery.  Or something of that nature.  And she moved on to another doctor, hoping someone could tell her what was wrong. 

It was not until she found a female doctor who also suffered from migraines that someone started taking her seriously and she began to find relief.  And she made certain that every doctor she saw afterwards heard the word migraine and if they would not accept it, she left.   

I was 7 when I had my first migraine.  Doctors told my mother that I was too young to have migraines, there had to be another explanation.  I was kept for days in a dark room, in extreme pain, with no solution.

Freshman year of high school, the migraines returned.  During a Biology test, my vision went blurry and then completely black.  Again, the doctors told my mother that people my age just didn’t have migraines.  They told us it was more likely a brain tumor.  So during final exams, I went in for testing.  All tests came back clear.  Putting us back at square one, relieved, but frustrated that no one would give us a solution.

 For the rest of high school and into college, I operated under the assumption that yes, these were migraines, and I was just going to have to take care of them myself.  Having a mother who suffered from them made my navigation easier.  And it worked for awhile.  Then things began to change several years post graduation.  I started having low grade headaches every day.  Ones that maybe an Excedrin or 2 could knock out, but I didn’t medicate since I had them so often.   And the full scale migraines, which had been once every 4-5 months began to occur once or twice a week.  I couldn’t work.  I could barely get out of bed.  My husband took me to the urgent care clinic one night because apparently I had begun speaking gibberish to him.  They said tension headaches, stress, brain tumor. And sent me to the ER. 

Another scan, another all clear.  That was the breaking point.  I needed to know what was wrong, but most of all I needed a doctor to hear me when I told him I HAVE MIGRAINES.  I looked up every migraine specialist within a 2 hour radius of my home.  I called and left messages, ignoring recorded voices that asked for referrals and leaving my name, number, and a brief description of what I was going through.  I heard back from nearly all of them.  Most had 4-6 month waiting periods before you could even schedule an appointment.  But I filled out every piece of paperwork each clinic sent me, begged to be put on every cancellation list, and waited to see who would take me first.

 I ended up going to a Headache and Wellness Center about an hour from where I lived at the time.  I filled out endless questionnaires, did lots of tests before ever seeing a doctor, and did a lot of talking when he sat down in the room with me, but damn it, someone was going to understand what was going on here.  And he said: “Well it sounds to me like you have Chronic Migraine Syndrome.”  Then he proceeded to explain it.  I could have cried.  YES. YES!   That is me, when can we start fixing it? 

I have since moved and now drive about 2 hours to the Headache and Wellness Clinic, but it’s worth it.  We are still not to 100% with a solution for my migraines, but it’s getting better.  And I never have to worry that someone won’t understand what I am going through.

I write this diatribe on the migraine, and the medical support that is in place to help you through it, to encourage those of you who do suffer from migraines to seek a specialist, don’t let anyone minimize what you are experiencing, and always continue to advocate for yourself.   

Rabid

    It’s almost funny.  You could almost say I’d been preparing for this my whole life.  I had seen every movie.  Read every book, every comic.  I had video games.  I even recorded mini-series. My costume was a staple at every Halloween party and Comic-Con event.  People expected to see me in my best gaping wounds and shuffle step, they talked about it afterwards.  Who could blame them?  I really committed when I was in character.  So when I came home to find one in my kitchen, I suppose I wasn’t entirely surprised, not really.  I suppose I’d been waiting for it for a long time.

    What did shock me was to see my wife sprawled on the floor, hands pushing feebly against its back, mouth gaping noiselessly, as it ate at her. Her eyes met mine for a moment and there I saw the fear, the panic.  The floor was wet, sticky, slick.  The smell was grotesque.  I found her eyes again.  Silent, pleading, tears streaming.

    I never questioned my next move.  Most days I still don’t.

    I reached for a knife from the counter and lurched unsteadily towards the grotesque pair.  I could not take my eyes from her.  She made a sound then, I think she was trying to scream, maybe call out to me.  But fear caught the noise in her throat and it trailed off helplessly.  It never even noticed me.  It just kept eating at her, its teeth and jaws working away as she struggled to push it from her.  My arm seemed to move on its own accord, plunging again and again into the base of its skull.  For the first time it turned its attention on me, arms flailing as I hacked indiscriminately.  My wife screamed then, harsh and hard in my ear as I brought myself close to finish it.  

    Once it lay still on the ground beside us, I took her hand in mine.  I wiped tears, snot and blood from my face, tried to make myself a little more presentable.  I even tried to smooth my hair down.  I pulled her in close to me, to calm her harried breathing.  Many of my haphazard strokes had cut her as well.  Across her face, arms, hands, neck.  But the damage had been done long before I arrived.

    She blinked at me.  She tried to speak but only managed to spill blood from her lips and her ruined throat.  Her hair was plastered to her skin, red and wet, clinging to her face.  It hurt me more than it hurt her, I am sure of it.    I think I whispered something to her, there at the end, but all I could concentrate on was what had to be done.

    I retched when it was over.  Doubling into the sink and emptying myself.  I sat on the floor then and held what was left of her, sobbing until my throat hurt and I was dizzy.  That was when they came for me.  Or maybe it was later, it became hard to keep things straight.  I may have gone outside to breath.  They must have been attracted by the blood.  Or maybe I didn’t, I honestly don’t know.

    They came for me all the same.  So I ran.  I ran until my lungs burned and my head was swimming.  I can’t even remember how I ended up here.  But here I am and I have sat in this room, alone, for weeks now.  Or maybe it’s been months.  I can’t keep track anymore.

    And they are outside.  Still, after all this time.  I can hear them.  Maybe they can smell me.  I tried to wash the blood away, but somehow they can still smell it, they still know I am here.  They are always there.  They never leave.  There are more of them every day.  They know I am here.

    When I first found this place, before I had the sense to barricade the door, one of them almost made it inside.  I had been sitting, staring blankly at the wall for what felt like days when it came.  

    Its arm, shoulder and head were through before I could throw my weight against the door.  I slammed myself into the metal, heard the crunch of what must have been bone.  I pushed as hard as I could, only letting up to slam down again.  I struggled to keep my feet, slipping on the suddenly slick floor.  The air smelled strongly of iron and it made me think of my wife.  

    I reared back, for one final crushing blow, when just as suddenly as it appeared it retreated.  Howling and writhing, pieces left behind.  This time I made sure the door was locked.  I pushed the bed against it too, just in case.  And that was the last one I saw.  But I hear them all the time.  Just outside the door.  The low murmur of their moaning.  Sometimes pieces of them make it through the break in the door as they try to get to me.  Rotting flesh that lies piled and untouched on the mattress.  It taunts me.  

    I haven’t eaten in so long.  Some days that growing heap of putrid parts looks almost appetizing.  Once or twice I have reached my hand out to take a bite, just one bite, but I know what I would become.  So I sit in this corner, as far from the door as I can, and I wait for them.  I know they are coming.  Just like I always imagined they might. It’s only a matter of time.  It’s almost funny…

April 18, 2010

    Patient was admitted upon mental break following the murder of his wife and her lover.

    Patient is considered extremely dangerous and attacked an orderly soon after admittance.  Since that time, no staff has been able to enter the room.  Attempts have been made to introduce sedatives through food but patient is currently refusing all food.

    Patient has developed a disturbing new habit.  He has not ceased laughing for three (3) straight days.  

    At this time, due to the extreme violent nature of the situation, it is the recommendation of this doctor to wait and allow the patient to drop himself into a sedative state – a natural result of mental exhaustion, dehydration, and starvation.  Then we will be able to safely transport the patient to a more secure environment where his needs will be better met.

    I will revisit this issue if it does not resolve itself soon.

                   Daniel Watkins M.D., M.M.M

[scrawled in pencil at the bottom: “If I knew what the hell was so funny, maybe I could help him.”]