Together: Poetry 03/10/2012
Like the cry and call of the doves, mourning the death of winter or of loss there is recognition when there is pain shared. Across the miles or the salty ocean or only across the table, picking up your coffee cup you sigh and my soul awakens and stirs. "It hurts to breathe" you say, and my heart fractures in slivered understanding of your pain of body and of mind. Yet there is solace and comfort in the sharing, of the darkness and of the hopefulness that binds us, a talisman around our neck that we cling to in the darkness of the night that sometimes, is our day. The earth is stirring, getting warmer and friendship is both the sunshine and the springtime ending the blackness of winter. Together we carry our pain, in our hearts and with our hands open wide, we cling, we yield, we live. Add Comment 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 Poetry: The Twins 07/04/2011
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. The Seed Within: IC Poetry 06/11/2011
Memory of pain calls to me, like the last thrumming of a bodhran. Echo of heartbeat and blood over bones, each sigh and every breath a quiet tattoo. Before the pain I was a tiny sapling, growing towards the sunlight, stretching for life's cooling water of hope, and of love. I thought I would become a maple tree, offering gifts of sweetness running from my veins, and for my gratitude leaves of crimson in the fall, a final nod before winter. Pain made me realize, I was never supposed to be a maple. My roots watered by my own salty tears, growing in spite of soil filled with sadness and pain. My limbs reach down and down touching the ground to caress the earth, tamped by pain and memory. I am the weeping willow tree, growing in spite of the pain to find that although I look fragile and my leaves are shaped like silvered tears, I am strong. I am a survivor. I'm Still Here 03/03/2011
Unfortunately I have never had a mind for memorizing verses and I have always been fascinated by actors who learn pages and pages of script in a short amount of time. In second grade during Black History Month we had to learn a poem by a black poet and recite it to the class from memory. Being a chicken, but also because the words meant a lot to me in spite of my young age, I chose Still Here by Langston Hughes. The words to this simple yet haunting poem have continued to weave in and out of my head some twenty years later during some dark times of my life including when I was diagnosed with IC. There are times when it has felt as if the words from my IC blog are like a mandala, a beautiful pattern composed of colorful words, instead of sand, poured out from my heart to try to understand the path of my life lived with IC, the words disappearing into the universe, erased and on a new journey. I find that my words are finding a home with other people all over the world struggling with a disease known by a string of initials-ICPBS- as if we are too frightened to spell out the letters of the disease as if an acronym gives the disease less power over us. I struggle to find the words to convey how much friendships and contacts from people all over the world living with IC means to me. So imagine my surprise when people noticed that my blog entry is 'late' and they asked me if I am ok. I had one of those crazy weeks filled with something strange, sad or traumatic happening every day. Nothing that I cannot handle because if you can handle IC you can handle just about anything. Yes. I'm still here and I am ok. No, I am more than ok because of the strength and support I receive from people with severe IC who take pause out of their own struggles to check on me. And thank you, Langston Hughes, for penning the poem that has been a touchstone in my life for so many years. Still Here been scared and battered. My hopes the wind done scattered. Snow has friz me, Sun has baked me, Looks like between 'em they done Tried to make me Stop laughin', stop lovin', stop livin'-- But I don't care! I'm still here! An Unwanted Embrace 02/07/2011
Pain you curled up beside me like a lover, hips curled against hips. Sharing the night in dreams dancing a macabre shadow dance, with myself freed from pain. And in the morning you await holding your hands out, leading me to the bathroom and then to find something to swallow to take the edge of pain away. Your embrace smothers me, following me throughout the day and your companion of sleeplessness kissing the fog left in my brain. Oh, if you could both become lovers! And leave me alone, I could have a moment free of pain, free to dream, to awaken refreshed. Pain do not kiss me with those lips tainted black. You are not my lover or my friend. Pain you are nothing to me, yet you touch every thing that once made me me. Who am I now? "You are pain!" you cry out. But I know better. I am me, and I am pain. A death mask of the former, Me. Poetry-The Diagnosis 11/12/2010
What remained after the name was spoken aloud? A mouth filled with the bitter taste of pennies, and a heart a beating caged thing. The unnameable now named encircling the room both alive and deadening. All of the fear now unmasked. Outloud I spoke it as an acronym of shame: "I.C.?" But I did not see how my life could go on with pain, and a bladder filled with hurt and shards of sadness. I no longer wanted to be strong, or challenged or forced to live a life in pain. But no barter or bargain or gift of pennies for the Ferryman could end the pain. Tears a clod of earth in my throat. I stumbled to the door, ignoring unthinking and blind to the doctor's voice. The pain and the diagnosis a talisman against manners or honor or care. I have i.c. I have i.c. I have i.c. And that is what remained September Poetry 09/14/2010
Days without pain are golden sun-drenched cliffs glinting with Micah, with rose quartz. Birds dance through the air singing about life and energy and warmth. Pain clouds the day shadowing the treasures of rock and heat. The birds no longer soar but shadow birds appear: vultures searching to pick and tear through the bones Despair. The cold darkness a blanket of chill icy fingers squeezing. Knives of pain resharpen themselves on bone and blood and organs. Pain if I could send you back on black winged beings. Or bury you in the earth covered by dirt and stone, I would. Poetry: Sometimes 08/19/2010
Who knew that by being touched by pain that life would seem more full of beauty? Brief moments without pain and the sky is full and immense that I want to float and embrace the cool blueness and rest on the floating clouds as they wisp across the sky. The pain an internal fire. A memory calling me back suddenly to the earth. A free fall into red and into sadness. I look to the sky and the blueness is unreachable. The clouds cannot comfort me. They carry their rain and their coolness elsewhere. Another day with the pain and I am both stronger and weaker. A warrior fighting a battle that I alone feel completely. Alone, yet surrounded by friends and family I pull on their strength and support. I am stronger than this disease, sometimes. The Changeling 07/06/2010
The day began with those pink tinged clouds that makes me smile, as birds float by coloring the sky with their flash of color and song Those winged harbingers of summer's mystery. But I have become a changeling seemingly overnight with an unfolding of pain and sadness like a Phoenix rising out of red fire and embedded in ashes of pain lies the seeds of change. Who am I now, this person living with pain? Am I the same person as when the sun set? A cloak of pain changes and transforms me, coloring the days and nights by its presence. I am a changeling, breaking free from the shell of my former pinkness of self, growing stronger, more determined, more grateful for the lessons the pain is teaching me. About a yolk of strength I thought long buried and how the truest friends and family are culled out, polished and shiny to support me on my journey of change and of discovery. | ArchivesMay 2012 CategoriesAll |
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