Sometimes I long for the knowledge of another language so that I can more adequately describe the pain of IC.  Simply saying that IC painful is immensely inadequate and leaves one thinking the pain of IC could be compared to something within recent memory such as a headache or bladder infection. Whether or not there is controversy surrounding English speakers studying and counting the number of Inuit words for 'snow', I find the concept of the Inuit language an intriguing one.  Although I am unable to change the English language and create new words for pain I would like to share the imagery, adjectives and feelings (both current and remembered) of living with the pain of IC.  Reading my old IC journals have been helpful in this regard.  So here are my Inuit inspired multiple words/phrases for IC pain (both physical and emotional):

darkness
blanketing despair
itch that can't be scratched
pinecones and glass and acid in the bladder/private parts
the EMBARASSMENT
unsolicited solitude
icy isolation
hot fury of pain
eating fistfuls of earth to suffocate the feelings
a spiral staircase that only leads down
red coals
numbness
dirty
twisting/unrelenting/stabbing pain
dreams of bladder removal
crying without tears
battered
scarred
painful separation of family and friends
day turns to night turns to day
Alice falling down the scarier rabbit hole
asexual
non-sexual
non-essential
tainted
handicapped
disabled
bladder caught in an animal trap
confusion
fearfulness
the deepest blue depression
and then darkness again

Slipped into the world
born anew
both filled
and washed in blood,
my cries filled the morning
light
flooding into the white hospital room.

I am here!
My voice,
an early premonition to my mother:
"This one will be loud,"
as she pressed me to her breast
and held me to herself.

Born without twin companion
I grew used
to learning,
from people older
than myself.
And of how a ladybug's
red beauty in the summer
quickly turns to dust
by fall.

Alone with my thoughts
and with the beautiful
heroines unfolding
out of fairy tales
read regardless of the weather
outside my bedroom window.

Oh, Pippi Longstocking
to have your russet braids
and a life filled with adventure!
But no I would rather be the Snow Queen
and have friends of forest animals
and of little devoting men.

Tales that always ended
with happiness
and forest friends
wrapping a garland of ivy
through your hair
And sunlight filled
all of their days.

I fear I either
read the wrong
fairy tales,
or I read them wrong.
For born out of my hips,
of my pelvis
and of my womanhood:
A twin.

In place of hues of golden,
a grey subdued mirror
image of the self
I thought I was,
or was becoming.
In her place a twin
born from pain,
and of longing for the former self,
to arise out of the ashes
which fill my mouth
along with the terror
of the pain
and of the loss of myself.

The twin still walks beside
and behind me.
I feel her fingers
in my hair
and her hands
reaching,
grabbing my own
when the phantom pains
return.

Our umbilical cord is filled
with memory's blood,
sleepless nights
and the Pain
which is granted
a name worthy of
capitalization.

I am the twin
and she is me,
together
one and the same
a duo,
a duet of pain
and remembrance.

We now walk the earth
together,
searching out the shadow lands
of our pain secrets
and the gifts
that only a twin soul
understands.

Pain filters out the life that was lived before the darkness and before the pain envelopes everything it touches like a blanket covering you in tears and in ash where the flames of life once lived.  It is not as though you can no longer see beauty, in fact it is just the opposite, as things of beauty appear before you in stark contrast to the greyness of pain.  Beauty shimmers and shines in the unfurling of a lemon yellow forsythia bloom, the unbridled laughter of a child, a cat's purr.  Moments of beauty become touchstone moments of a life filled with pain and sadness. 

If I could I would cast a giant net and ensnare the pain of the world and drag it onto the beach to wither and die.  I have said before that pain is a great teacher, one that does not let you become complacent or ever forget the brief moments of joy and beauty that cross our paths like shooting stars in broad daylight.  Each time that I think that I have learned enough, that I am free from pain in whichever form it takes, the teacher appears again and as hard as I try to run from it, it is there to learn yet another lesson.  I am learning that we are all life-long students.

I weep each time I hear of someone being newly diagnosed with IC because their words are the same words I uttered myself six years ago.  There is a terror that comes with your first diagnosis of an incurable disease.  Then of course there is the element of indescribable pain.  Eventually you might find some relief, but you will never be the same person again, and that is a difficult thing to understand.  The Buddhists say that life is pain with a few moments of joy (beauty).  I am trying to accept this as waves of sadness wash over me these days.  My heart is still there but it is becoming a smooth and grey thing like a stone at the bottom of the ocean. 

Slowly, gently night unfurls its splendor
Grasp it, sense it, tremulous and tender
Turn your face away from the garish light of day
Turn your thoughts away from cold unfeeling light
And listen to the music of the night

Close your eyes and surrender to your darkest dreams
Purge your thoughts of the life you knew before

-Music of the Night, Phantom of the Opera

    The dark of night holds connotations of terror, death and the unseen in most aspects of current society.  Whether in books, movies or musicals such as Phantom of the Opera, darkness is when nightmares are revealed and when creatures deemed unfit for the light of day can haunt and play.  When IC racked my body with incalculable pain I felt that I was living a waking nightmare in which I was tortured with pain and constant trips to the bathroom.  Now that my IC is in remission and the pain that was my constant companion of five years is in the shadow land I still feel its presence like fog clinging to the underside of a footbridge. 
    During my darkest days I searched my mind's memory for what it was like to have simply five minutes free from the pain, but as much as I tried, I could not remember what it was like to be pain free because the pain was so intense.  I thought that when my IC went into remission that the same effect would occur and that I would not be able to recall the sheer pain and terror of IC, but I find that the pain memory surfaces readily, a night demon surfacing during the daylight.  In the shadows of my memory I sometimes have a silent scream when I have a minor flareup from food or from monthly hormonal changes as I wonder if this could be the flareup that sends me back to pain all day every day. 
    It was so easy to embrace the darkness and to dance with the Phantom of pain and darkness set to his own night music.  My life of pain stripped away friends, family, food, sex, and work that I had completely 'purged all thoughts of the life I knew before' because the life I lived before was gone.  Even in IC remission I am a changed person and I can never really go back to being the person before I was touched by pain and left without so many of life's simple pleasures.  But I am fine with this knowledge-and I embrace it!  There will always be room in my life for life lesson's and I can now say that pain is quite the teacher.  I will never forget the pain of IC but I will also strive to never forget the lessons of IC.  That being said I will always think that Christine made the wrong choice in not embracing the darkness and falling in love with the Phantom of the Opera as I always have.  For even in real life, dark fairy tales can have a somewhat happy ending, right?