Sunday, 27 October 2013

Saturday, October 26,2013 Mother Knows Best

      While at the pharmacy to pick up some of my medication, my son picks up a stick of men's deodorant. He tells me that the teacher at school explained to them about their bodies changing and how to take care of their new bodies by staying clean to keep pimples away, wearing deodorant, etc. Knowing that my boy isn't anywhere close to needing these things yet, I buy it for him anyway. What's the harm? I'll tell you what the harm is in buying a ten year old deodorant - a mother FREAKING OUT!!! 
      I cringe at the thought that in a few short years he will be a teenager. I want to freeze him at this age, before his voice starts to change, and he starts to get all tall and lanky. We all fumble through adolescence. Unfortunately, where girls go through it we get bigger boobs and start to shave our legs, the boys - they get tall, awkward, pimply and ever changing squeaky voice. 
      I shove that image to the back of my head and bury it deep. I'm totally happy to look at him now in complete denial that he will stay just as he is forever. I thank the Lord again - for the billionth time - that he gave me a son and not a daughter. When I was pregnant my mantra was 'Please let it be a boy. Give me a boy.' My mother said I was terrible for saying that. Obviously, I would have loved any baby the same whether it were a boy or a girl. 
      My reasons for wanting a son versus wanting a daughter are quite simple:
a) I only want to have one penis in this world to worry about. Instead of frantically pushing away the boys who fall to her feet because, naturally, she's gorgeous like me. (*wink*) Bullet, dodged. 
b) Every teenage girl hates there mother at some point.
      I know that seems really harsh to say, but think about it - when you were sixteen you believed that there was absolutely nothing your mother knew what being a teenager is like. My mother and I fought like blazing wildfire. We were so different. We crashed and burned our way through every argument. 
      Now, I know it was my teenage angst and logic that had me hell bent that at her age she would never understand what I'm feeling. I mean, she was in her late forties - did she even remember being a teenager? And us teenagers, we thought we were so much more grown up. We were so steadfast, holding firm in the belief that our generation was superior somehow. We were smarter, more mature, we could take care of ourselves. We didn't need anybody. Yeah, right. 
      I recently read a beautiful memoir about two sisters being raised by a mother with schizophrenia. In one scene, their mother smashes a bottle and holds it to her daughter's neck because she believes the man coming to take her on a date was a nazi trying to steal her womb.This mother had become so dangerous, the women made the difficult choice to separate themselves from her by changing their names and moved away. They shared nothing with their mother except a P.O. Box where they could send and receive letters. The mother was in and out of institutes and homeless for the next seventeen years. Not a day went by without the daughter remembering those minuscule moments in her childhood when her real mother would shine through.When they travel home to be with their dying mother for the first time in almost two decades, they learned in the end they needed her as much as she needed them. To be whole. 
      Now, I know I need my mother. She is my rock. She is the pillar that holds me up when I can't stand. She is my advocate and my voice when I am too sick or scared to ask the hard questions. She is the angel who uprooted her life to save mine, moving five hours away from her home and family to help me take care of my son and get me on my feet. Without my mother I never would have been able to raise my son in a beautiful home. 
       She is as much of an amazing person as she is a mother. Earlier this year she was nominated for an Outstanding Professional Fundraiser of the year award. When I became sick as a child, my mother put so much passion into raising money for the local children's hospital. She was such a stellar ambassador, the hospital offered her a great job at the main foundation. She loves her job, and you can tell. Mother is so connected to the cause and believes in it so much that she won that award. I never doubted it for a second. She believes in me too. Without my mother by my side being strong for me, I shiver to think of the dark places my mind would have wandered to in the lonely abyss of my disease. 
      We all carry pieces of our mothers with us. Whether it be in our features or DNA. No matter how much time has past or how many bad words are said. We inherit them through ourselves. My mother is not only the reason I have beautiful things around me, she's also the reason I'm beautiful on the inside.

Friday, 3 May 2013

Memory Foam Mattress May 11th, 2004

       I stare out the wooden slats of my window blinds that leave long lit wedges of streetlamp light across my crisp duvet. Turning onto my side, I edge away from the watermarks splashed like scars across my pillowcase. The evidence of tears disappears easily enough, but this bed was once it’s own world. Our love foraged a universe that encased us in these sheets. Where everything was ours and nothing could touch us.
       If I look close enough, would the memory foam mattress form fossils in the shapes of the beginning, when we were entwined lovers, never wanting to be apart... Or are the only imprints the bed could reveal now of feeling heavy with weight along it’s edges, vast cold empty sheets and unspoken words stretched across the distance between our two backs.                
      Sometimes I feel like knowing you was the dream. Each day it gets harder for me to remember. Morning comes and the reality of our existence seems more like a story I've read years ago, or a movie made about tragic lovers. Every day I scramble to catch the wisps and fragments of you. The feelings and the words and the touch that was you and me
and in that flash of the certainty of our love, life, and time together time seemed to fill up all space and conquer all things. I lay here trying to grasp the memory of your voice, your smile, your touch. It's always present here, lingering, waiting for me to reach out and take hold of the pieces. The ghosts never come close enough; will never be real enough, for me to hold again.    
       But, like all things majestic and infinite, even love gets further away over time. Deadened by the void, diluted with emptiness, masked by other lifetimes passing over. Tomorrow you will be even further.  Even more impossible to reach. Like dreams on foggy mornings. Until at last, not forgotten, but tucked away, in dreams is only where I'll find you. You 
and that love. The love that once filled up this place where I now lay my head down to sleep, only in search of you to hold on to. Our love. And in our short precious time together, it was majestic and infinite, above all things. 
         The mornings I wake up feeling peaceful and calm, I know that night as I slept my heart transcended time and space and some how, some small way I was with you...and I wake up happy.

Monday, 11 March 2013

The Girl In The Mirror March 11, 2013

       The woman was in the mirror again. Wearing the same bulky gray sweater, her hair dishevelled.  I know she is young, but her tired eyes reflect a soul much older. Letting her reading glasses slide halfway down her nose, she gives up trying to focus on her book. I close my eyes and send her away.
       Ten years ago, I used to lie to her and say, “When you feel better you'll be able to go back to university.” “As soon as you recover from surgery, you will get the public relations internship you've always wanted.” “When you are in remission, you won't have to miss out on life's opportunities.” “When you are back to being yourself, he’ll remember why he fell in love with you.” The future shone so brightly with promise, even from far away. Of course, back then, I didn't know they were lies.  
      It used to seem like my life hung suspended. Ready and waiting for me to come grab hold of it and hit the ground running. Now each day feels like life is being sucked away. Time is whizzing by and I can't stop it. I'm trying to grasp moments to prolong them but I'm Alice falling down the rabbit hole with clocks and chairs and friends and events all a blur and then - thud!  A decade of my life is gone and I'm alone on the floor with no way of climbing back up and no keys to any of the doors in front of me.
       Weren't my 20s supposed to have given me something?!  Adventure, culture, tortured romance, experience, an education, a flying leap into a successful career, a man-of-my-dreams turned husband? Instead, I’m trapped inside the girl in the mirror.
       Life is loud, fluid, exciting, terrifying, and passionate all around me. Everyone is someone:  mother, wife, sister, aunt, lover, best friend. No matter the titles I have had, it’s been tarnished with an X, and marked in bright red -‘SICK’. Not mother. Not wife. Not employee. Not friend. I want to be counted on. I want to be able to be able to support the people who never waiver the love they give or in being here for me.
       Why does it hurt so much?!  People all over the world wake up daily and go live their lives. Such a task is gargantuan to me. Taking a shower leaves me ragged and sweating, my knees chattering from the weakness of holding myself up. My apartment needs to be dusted. There are dishes in the sink. Why does it have to be so difficult?  I tell myself it’s easy. But my muscles ache, there is a dagger in my lower abdomen searing with a pain so red and so loud I can hear it. I drift in and out of a medicated sleep but never feel rested. I’m tired. I’m tired deep down to my bones. Tired of fighting for the possession of my own body, to do with it what I please and be the person who I want to be. This is not how I want to live! 
       But that’s just the thing isn't it?
       I’m not living at all. Not really.
       Strength is a word I hear a lot. Everyone tells me over and over again, ‘You are so strong.’ I want to be strong. I want to live a success story. I want mine to be a story of triumph. It hurts more than any agony I've suffered knowing that I’m thirty and I haven’t accomplished any of the goals I planned for my life. I want so badly to be something else. I want someone to ask me to describe myself in few words to smile and chirp the words ‘Soccer Mom!’ ‘Writer!’ ‘Sugar Addict.’
       I've been pushing so hard to wake up on the other side of this nightmare. I want to see it getting smaller and smaller in the rear view mirror as it dissipates into ‘back when I was sick.’ or ‘before I went into remission.’ I want to enjoy life. I want to LIVE every day and not just struggle through it. I know in my heart I’m meant to be something more. There’s something inside me besides this ugly disease. A light in there trying to be seen through the scars and the tubes and machines that keep my body alive.  
       Some day, this will all be ‘an experience.’ I will be sitting in a lawn chair at my summer retreat facing the Muskoka lakes. I will share homemade ice tea with my 9 year old granddaughter and tell her how things were so different for me when I was her age. When people who rent cottages for the summer ask around the area's shops, they will say, “Does Jane Spring, the author, really have a home near here?” No one will ever ask how I’m feeling, or how this surgery went, or how long I’d been in the hospital.
      I look in the mirror to the woman with her pale pallor skin sunken in and try hard to hold on to the hopes of someday. Someday when cheeks are rosy and limbs are strong. She’ll no longer have a face that causes people to take pause and ask, “Are you ok?” or “How are you feeling?”  
       Someday, when they see her, they won’t have a reason to ask any of those things at all. 

Sunday, 17 February 2013

The Day I Was Somebody At Wheelie's September 14th, 1993

       I am not going to think about it. I am going to enjoy my afternoon. I will not be nervous. I will not be scared.
       I am trying to convince myself of all these things knowing full well the impossibility of allowing myself even a few short hours of normal childhood activity. Being nourished via a nasal gastric tube for twelve hours a day means constantly having bright yellow tubing tucked behind my ear and taped to my face.  From there it continues up my nose and down my throat, ending in my stomach. Bright yellow – what demon designs these things? They might as well put traffic cones around me with a big blinking highway sign saying “Social Outcast.”
       I have been looking forward to - and dreading - this day for an entire month.  Once a month my feeding tube needs to be removed in exchange for a new one. During these few short hours in between, I am able to have a break from the itchy tape and the never ending uncomfortable tug against my nose every time I swallow. But mostly, I spend these hours on the verge of a panic attack as the time ticks swiftly towards my mother having to put the new feeding tube in.
       No matter how many times we have done it, no matter how much older I get - I cannot get used to doing this. I spend hours trying to muster up the courage to sit in the chair. I fight my mother tooth and nail trying to stave off a few extra minutes before giving in. I would take tiny steps, inching closer to the middle of the kitchen and my mother, who hates this process every bit as much as I do. It takes less than two minutes and, honestly, it doesn't really hurt. It is a much bigger monster than that. For me it represents everything that causes pain in my life - that is the true battle. Once a month having to surrender myself to my illness, admit defeat and allow it to brand me as 'sick' for the world to see.
       Not today.
       It is Saturday afternoon and in our small town, everyone who is anyone will be at Wheelie's. I have been to Wheelie's roller rink once or twice before during the Family Skate on Sundays with my parents and little brother. Then every Monday, I sit alone at recess waiting for the bell, listening to the latest chitter-chatter about all the fun things that happened Saturday at Wheelie's. Now that I'm almost 12, my parents are finally letting me go this afternoon with my cousin Cheryl - without my tube in! No one will be staring. No one will cringe and look away when I walk near them. I won’t need to cover my nose with my hand, staring at the floor hoping no one will notice me. This afternoon, I will be just like everyone else.
       I can barely contain my excitement as Cheryl and I walk through the double doors, leaving the hot sticky outdoor air behind us. Wheelie's is massive. The carpeted arcade area is bright with pin ball machines, Street Fighter and Mrs. Pac Man. Even she put her best face on today knowing she will be on display for a hundred kids. Those who are taking a break from roller skating are licking ketchup off their fingers as they eat French fries from the canteen on the benches that line the walls. We see a precious empty space near the crowded arcade and quickly lay claim on an empty length of bench. Cheryl bounds off to grab our skates while I save our seats. 
       The skate ring itself was easily as large as our school gym.  Smooth, glossy concrete peppered with glitter under a big mural of Wheelie’s hippo mascot on the far wall. Giggling children whiz by, chasing each other under the sparkling fragmented lights from the disco ball. Teenagers from the high school couple up, putting their hands in one another's back pockets.  'November Rain' is playing loudly and I wonder how they manage kissing (with tongue!) groping each other, and still roller skate at the same time.
       "Uh-oh," Cheryl nods across the graphic carpet to the skate rental counter. A group of girls from school were a mess of big hair in neon scrunchies and jean jackets reapplying lip gloss. 'The BQ Squad is here. What’s so great about them anyway? I can't even understand why they love themselves so much." The Beauty Queens walk, talk and dress as though they run the world around them. Most people are dumb enough to let them. They are the prettiest most popular girls in school. Openly, I loathe everything about them.  Inwardly, and I am not proud to admit it, there is a piece of me who wants so badly for them to like me. If they liked me, maybe everyone else would give me a chance too. Maybe then I would be somebody else. Somebody who people didn't throw rocks at on the way home from school. Somebody who has lots of friends instead of lots of books. Somebody who did not need to sit alone at recess anymore.
        "Let’s just ignore them! Come on and stay close – I’m not very good!" We have tightened our hot pink laces and are laughing hard. We stumble trying to balance and find our footing without falling over or taking one another down. It is not until they are standing over us that we notice Steph and her clones.
       "Jane!" she gives me a thousand kilowatt smile. "Wow look at you! So pretty! No wonder Chris wants to skate a lap around with you!" They all stand there like Barbie dolls while Cheryl and I are frozen in place trying to take in the fact that they even know who we are. "He said, 'I didn’t realize she was so pretty under that …thing.' " Steph's double bubble cracks loudly. The girls behind her nod and giggle. "So you will, right?"
       I'm dumbfounded. Chris wants to skate a lap around the rink with me? Is this happening? I don't even remember moving but I must have given the slightest nod because Steph is grabbing my sleeve and half dragging me toward the edge of the rink. I look back at Cheryl standing alone and mouth the words 'I'm sorry' but she is just as stunned as I am. It is all happening so fast and in slow motion at the same time. I feel like there is a weight on my chest. I have lost all ability to speak. The BQs eagerly flag down Chris and his friends.
       This boy has never said a word to me in my life. We've been in the same class since we were five years old and until now I would have bet he had no idea I even exist. Chris skids to a stop in his black and neon yellow roller blades. He is so close to me I can smell the Dep gel he uses to spike his hair. He holds out his arm for me to take, dimples forming as he smiles broadly at me. My eyes meet with Cheryl's from across the room. She is still watching this unfold from the sidelines, only now she looks annoyed with me. I don't blame her. I would have felt the same way if she had deserted me for a boy. She will have to forgive me. I smile back at Chris. How can I say no?  This is what I wanted, right?  It is happening. This was the day that people will notice me for the right reasons. The day I am just as pretty, as cool and as confident as everyone else. 
       Chris is moving faster than I can but I am too scared to speak.  I try so hard to keep up I can barely concentrate on anything else. One of the cutest boys at school is roller skating with me! It seems too good to be true. As we glide towards the rest of the kids from school, I realize an instant too late: If something seems too good to be true - it probably is.
       In slow motion I watch Steph stick her leg out to trip me. I buckle forward crashing down hard on my knees. I'm splayed out on the floor while those hateful girls are laughing like hyenas. No feeding tube at all and still every last person in the building is pointing at me and staring. Chris actually has the nerve to bend down and try to help me up. Thank god Cheryl comes out of nowhere, pushing him aside and quickly gets me on my feet.
      "What's wrong Hose Nose? Did you think we would forget you were a disease?" Steph calling after us, everyone looking and laughing. "Did you actually think that a boy would think you and that noodle nose were attractive?"
       Cheryl takes me into the bathroom. She makes sure I am okay and leaves to go gather our shoes. I don't remember hitting my head but there is blood coming from above my eye. I splash cold water on my face. By the time Cheryl returns I am a teary mess on the bathroom floor. She locks the door and sits down next to me. "They are assholes. Who wants friends like that anyway?" Cheryl helps me put my sneakers on the best I could over a very swollen ankle and we leave the bathroom. I am grateful to her for not being angry I had left her alone and making me feel worse than I already did. 
       Leaving the bathroom I start to make a bee-line for the exit but Chris is leaning on the wall and comes up to me. I push past him as quickly as I could but he jumps in front of me. "I didn't know," he said. I ask him to get out of my way but he will not move. "Listen, I was a jerk. But I didn't know this would happen. Steph said she would give me five dollars to do one skate around the rink with you. I just wanted the money - I didn't know she was going to hurt you. I swear." This time when I go to leave he gets out of my way as I limp as fast as my ankle will let me to get as far away from here as I can.
       When I arrive home, I crash onto my bed.  Not even my pillow can stifle the sobbing. The lump on my forehead has doubled in size. I'm unable to bend my swollen ankle at all. None of these physical pains are bad enough to compete with the pain of shame and embarrassment.  Monday at recess, I will still sit alone. I wanted to be noticed but not like this. I wanted so badly to be a part of the crowd at Wheelie's and now my nightmare will spread whisper to ear through the entire school. I am so stupid for wanting to fit in so badly.
       A few hours and many tears later, the time has come for my feeding tube to go back in. From now on, I will gladly take a few anxious hours at home waiting for the new one to go in over the devastation of this afternoon. I will not try to be someone I’m not. I will worry in my room with my books where it is safe. I hold a glass of water to take gulps of because it helps to guide it down. The wire inside will hurt as it passes through the back of my nose. Tonight I quietly I sit down on the chair in the middle of the kitchen bracing myself for my mother to begin.  This day has left me feeling so numb, I can't even put up a fight.
       What is the point of fighting against who you really are? 

Saturday, 16 February 2013

Update February 16, 2013

     Hi Everyone!                                                                                   
     I want to start off by saying Thank You to all of you wonderful people who have been sending good vibes and well wishes my way during the past six weeks. It means a lot to me to know that when it seems like all I hear is bad news coming from all angles, I have people behind me cheering me on. Not to mention my fantastic family who never fails to keep me afloat. My son, mom, dad, brother, aunts, cousins... I have a big family. Whether it's gummie bears or body cream, a great laugh or a big hug, they always seem to know exactly what I need to make me feel better.There have been some scary low points but I still have a lot of fight in me yet! 
     I plan on posting another story this weekend. The only place to get online in this dumb hospital is in the cafeteria. And I haven't been here since I posted my story about Muriel at two am and a mouse bit my toe. Yes. Eww. If there are any security camera's in the cafeteria - which I'm sure there are - I bet they had quite a good laugh at my spazzing and writhing around before I grabbed my laptop and ran to the elevators! 
     I miss being home so much but I'm taking it day by day.
     The silver lining? Hot Doctor has come to visit me. Twice. :)

Love & Valentines,
   Jane xo

Sunday, 3 February 2013

The Day I Went For A Walk With Muriel February 3rd, 2013

“Are you going down to the brook?” Muriel asks me. Her hands are shaky as she tries to lift a styro-foam cup of water to her lips. I see the slip and catch the accident before it happens.
 “No, Muriel. I’m getting it from the kitchen down the hall. I will be right back.” I walk down the hall of the hospital unit that is our temporary home.  It has been a long day for the eighty-eight year old. The later it gets, the more her reality begins to fray. My heart strings right along with it.
  Last week, as I was walking past the front reception desk, Shannon, the ward clerk, was teasing Muriel about her love of cheese. “Muriel it’s all gone! You ate the whole batch!” Muriel laughed. She had a smile and a kind word for everyone. She, as well as a few other patients who required consistent supervision, often sat near the nurse’s desk. Muriel sat in her wheelchair chatting with people and watching all “the busy bodies,” as she likes to call them, go about their days. Knowing that I had an extra little package of cheese, I decided to give my snack to the silver haired sweetheart.
 “Is this for me?! Oh, I do love my cheese!” I assured her it was and she finally conceded saying, “Well, maybe I’ll just have one bite.” She was lovable instantly.
 Over the next week, I began to take her for walks up, down and around these halls. I think we both enjoyed a change of scenery. Staying in bed all day often makes you feel as if the walls are closing in on you. Trying to maneuver my IV pole while pushing her wheelchair at the same time was challenging but she never seemed to mind. One of the things I learned on our walks was that she loved to talk, and it was not long at all before Muriel began to tell me her stories.                                       
 She would weave a complicated soap-operatic tryst among three of the doctors. She would just point at any random passersby and assign their roles as characters in the day’s episode. There was a good doctor gentleman who married a lovely lady doctor whom he loved very much. But she broke his heart when she started running around with another male doctor. “And those two just flaunt it all around here like she does not even care! That nice man did not deserve to have his heart broken.”
 She was very odd when it came to men. For the most part she was jovial towards them. Yet she was always doling out advice such as, “You can’t trust men.” “Men will only hurt you.” While rounding the bend on our little jaunt yesterday morning she chirped, “This is better than having a boyfriend!” 
 Muriel’s favorite stories were ones about her father. “My Daddy is coming to pick me up! I can’t wait to see my Daddy. He was always so good to me. When I was eight years old my Daddy bought me a shiny red bicycle! Daddy is building a new room on the house just for me. He builds big strong houses. I Daddy loves me so much. I love him.”
 The rattle of the ice machine in the patient kitchen jolts me from my daze. I pour Muriel’s ice water, but when I walk out into the hallway she was no longer there. I move in the direction of her room. I could hear her before I could see her. 
Muriel was shouting obscenities the likes I’ve never even heard of. She was shouting at a group of nonexistent (but very real to her) men who were shoo-ing invisible mice running around the foot of her bed. The nurses remained calm, though I’ll never know how, and tried to settle and soothe her into bed. Muriel continued to fuss aggressively. I sat in the hallway trying not to cry. She was so scared and confused. Eventually, she succumbed to exhaustion allowing the nurses to bathe her and get her ready to go to sleep.
 “Muriel? Can I come in and say goodnight?” I told the frazzled nurse I would sit with her awhile when they were finished her bedtime routine in hopes that she would fall asleep. I took a seat at her bedside.
 “Those men are never going to forget some of the names I called them tonight! I told them every bad wrong thing I could think of. Maybe I should be sorry. Know why I’m not sorry? I was angry and shouting bad names made me feel so good!” I laughed, telling her it was good not to keep things bottled up inside.
 All of the sudden, the nurse pressed the button to raise the head of Muriel’s hospital bed and the woman went white with fear, “STOP! I’m too scared!” The nurse told me she was terrified of the bed moving. Every night she would panic. “I need something to hold on to,” she whimpered in a voice so small it could have been a child’s. 
I gave her my arm. “Hold on to me.”


           The next night’s bedtime ritual went a lot smoother. Muriel was all washed up, settling into the bed, all the while petting a pink plush mouse. In fact, she had barely put the stuffed animal down since I’d given it to her earlier that day.
“I love my Dusty Rose mouse!” she beamed. “It’s my favorite color and best buddy and I love him all day long.”
“Well, last night you said you wanted something to hold onto when the bed moves and if you wake up scared. Now, you’ll always have a hug wherever you are,” I said turning off the overhead light switch, filling the room with a dim glow. “Muriel, it’s as if you were my grandmother.”
           “I love you as though I were your grandmother,” she murmured. 
            Over the next hour or so I sat alongside the elderly lady as she tread water in the place between sleep and awake, between memories and realities. While we talked I ran a gentle trail up and down her arm with my fingertips.
“That’s making fall asleep," she whispered. I told her she should. Just as I thought those translucent eyelids has closed for the night, Muriel spoke.
            “My Daddy married another woman,"she said with poignant clarity."He married that woman when he was still married to my mother. They had a baby. The new baby made me sad. Then he was too busy. Busy with the baby, the new woman and building houses. That is why he couldn't come back. I love my Daddy so much. He told me he would build a room for me. Then when he is ready he is coming to pick me up.”
 My chest is throbbing with heartache for the eighty-eight year old little girl looking so small tucked in a sea of blankets.
 “I will have to get along with that woman. It was a long time ago. Too long ago to carry angry feelings. Even though that hurt, she makes my Daddy happy. What is important is my Daddy is happy. We will all be happy together in the new house when he builds me my new room.” She gives in to sleep.
It was remarkable how she looked more like a small child with a plush toy tucked up under her arm, than a lady nearing the end of her life. After all her lifetime, being married, having twin sons – who had twin daughters – all those memories, and it is being a small child with her father that is her happiest place to go. All the fragments of a lifetime drifting like snowflakes from a sky we can see no end to. Every single night she falls asleep dreaming of her happiest place and waiting. Believing that one of these nights, Daddy will come and pick her up. Maybe one night he will. And she will be happy riding her shiny red bicycle in the front yard of a big beautiful house her father built.

Friday, 18 January 2013

The Day I Was Bitten By A Shark. October 31st, 2000

       My father is driving to the city from the Island to pick me up from the hospital. We are spending a few days in the city while I rest up and heal a little more before we take the five hour drive back home. It is only October and already my very first year of university has come to an end. After my high school prom and graduation, I left home for the city. I certainly didn't think I would be moving back so quickly. All summer I worked two jobs while living with my Great Aunt Lee.
       Now, trying to describe my Great Aunt could never be done justly. She's an eighty-three year old woman dressed like a Spice Girl. I’m not exaggerating. Less than a week ago, visiting while wearing a long red trench coat, she flashed more than a few handsome doctors in nothing but her belly dancing garb underneath. Sparkly bra, belly chains and all. Yes, I said belly dancing. She is amazing. A fire cracker of a person and eccentric as they come. Uncle Jack, a chemist, left her stinking rich in a house that suited her every mood. There was a China Room, the Florida Room, even a Sistine Chapel Room. (The entire ceiling painted exactly - with the addition of a portrait of her little Yorkie, Maurice, on a cloud as well.) My room was a cozy tucked away sitting room with room only for a small bed, a desk and a bookcase.
       University at King’s College had been a dream of mine since tenth grade when I saw their book list. I dreamed of living on their gorgeous campus so full of bright people and magnolia trees. I made sure I did very well in high school. People always wondered how I kept my grades up while I was hospitalized. It was because I always had so much time to do my work. I worked hard. So much so that I was able to graduate from high school a full semester early, in January instead of June. I had a thirst for books my whole life that had not even begun to be quenched. King’s College was going to help. It was the single one and only university I applied to. Thank goodness I was accepted – there was never a plan b.
       The fall semester started on September sixth. I was in the hospital by September twenty-eighth. It was actually quite wonderful how the Professors and new friends rallied to help me keep up with my studies. A few of my professors actually taped lectures for me so I could take my own notes. But I was in so much pain and medication made me so forgetful. I was feverish and confused a lot. They went above and beyond…but I knew I had to cut my losses. I just couldn't keep up.
       I push myself gingerly out of bed and continue packing my things as best I could. It was amazing how much “stuff” I had accumulated over my eight week stay. There were books, stuffed animals from friends, candy, magazines, angel figurines and a framed copy of my favorite painting, “The Singing Butler” by Jack Vettriano. I would see every day it in the gallery gifts shop downstairs. When I was brought back to my room from Intensive Care after surgery it was the first thing I saw when I opened my eyes. Hanging right on my hospital wall. My Aunt Linda and cousin Jordan put it there for me. I can’t wait to hang it at home.
       “Hey Chicken! Got any candy?” Dr. Tanton poked his head around my curtain. He was my very first specialist as an official “adult patient.” He worked outside the hospital so I was handed over to the surgeons, but he came to check on me quite often.
       “I used to think you liked my company, but now I see. You come just to feed your sweet tooth.” I pass him an open box of jelly beans.
       “Listen kiddo, you’re going home today but you’re not off scot free yet. No stairs, no lifting, no showers. That belly needs to stay perfect. If those staples or stitches get infected we’re talking li-,” he put his hand on mine. “I don’t need to tell you this. I keep forgetting you’re an old pro. I’ll see you in my office in three weeks. Bring licorice. Red though! Not that black stuff – yuck!” He gave a quick tip of his hat and was gone.
       My dad arrived soon after and but it was a full hour later until we'd finally gotten my discharge papers, my prescriptions, my bags and a very exhausted, very sore me into the car and pulled out of the hospital parking lot.
       It’s an odd thing, leaving the hospital and going home. You would think that not much would have changed in just eight weeks, but you would be surprised.  When I was admitted to hospital in September, everyone was still hanging on to the last warm days of summer. Still wearing flip flops and shorts. Now, it is late October. There is crispness in the air. Students are cramming the books for midterms instead of hitting the bars for 'Frosh Week.' The trees are putting on their most colorful show of the year. Even some new buildings are built up or old ones taken down. It has been happening my whole life, yet every time I come home there is a huge part of me expecting to pick up right where I left off. But the world doesn't work that way. So much changes.
       My eyelids are heavy with exhaustion and medication. It is not until we pull in to Aunt Lee’s driveway that all the orange bright decorations, pumpkins, skeletons and scary masks we've driven by clicks in my mind. “When is Halloween?” I ask my dad, bracing a pillow across my stomach slowly lifting myself out of the car.
       “Tonight! I think you should help pass out candy. Interact a bit and get out of bed. I know it isn't your favorite occasion but it will be fun.” At age eight I had a disastrous Halloween incident. An old lady saw my feeding tube and thinking it was a costume, commented on how gross my face looked. I’d never gone out Trick or Treating again anywhere that wasn't family.
        After a few hours in a deep dark nap, I’m woken up by the doorbell ringing over and over again. I’m contemplating choking whoever is at the door when I remember the Trick-or-Treaters. I’m actually a little excited about passing out candy and seeing the cute kids in their little costumes. I throw on my baggiest sweatpants and one of my dad’s t-shirts so my clothes are loose around my incision.
       “Ok, your turn!” My dad tosses me a bag of chips. “Bowl is there, candy, chips, cans of pop. I put a comfy chair in the porch for you. I've got to run out for your prescriptions. I’ll be back soon. – Don’t eat all the candy – it’s not for you!” He lowers me down in the chair before he leaves.
        Almost instantly the doorbell rings. Opening the door I’m met with a bandit, cowboy, and some sort of what I’m guessing is an alien, in the form of three ten year old boys. I’m handing their candy out when one of them asks why I’m not dressed up. “Miss it’s Halloween, you have to have at least fake blood or something going on if you’re going to hand candy out with no costume.”
        I heard the comment by five other kids in costumes and I strongly begin to think they are right. What’s Halloween with no costume? What can I do…what can I do…Biting my bottom lip, I open the front porch closet hoping to find an old fur coat or something interesting to put in an effort of assembling something. All I find is my older cousin’s surf board and the musty blazers of my late uncle. I continue to chew my lip, trying to think, when I have my ‘a-ha!’ moment.
       My father is barely back in the house when I ask him to prop the surfboard up against the front door where Trick or Treat visitors will see it. I waddle beneath the clouds and angels and into the Florida Room where Aunt Lee has an armoire of bathing suits, caftans and sarongs. I’m in quite a tangle for awhile but I manage to get into a bright red bikini top and tie a black sarong loosely around my hips. I’m looking down on my swollen, red torso. It’s even got scabby old blood around the staples. Now this is a really gross Halloween costume. But it’s also hilarious. It is to me at least.
       I waddle back to the front door. My father turns around with a wide-eyed “what the hell?!” look on his face. In that exact moment there is another ring at the door. “Dad, let me! I got it!"
       My plan worked perfectly. Over and over the children commented on my “costume”. The next round of vampire faced young boys gave the best reactions. 
“Ewww, lady that is SICK!” “That scar looks SO real!” “Cool staple sutures and everything!” and eventually, “What are you supposed to be!?”
       “Oh no, boys, this is not a costume…Are you afraid of scary stories?” I leaned against the surf board. Then I proceeded to tell them a terrifying story about being hunted by great whites while surfing alone. I tell them all about the day I was bitten by a shark. 
       I even have the scar to prove it.

Friday, 11 January 2013

Past Poetry Circa 1994

     My mother came home from work this evening, and after heating up left overs and chatting about our day she sat down to check her email. She's reminded that earlier today, in the tangle of cobwebs in the depths of  internets past, she somehow came across a poem. A poem I had written and long forgotten about. I hardly remember writing it. I was fourteen years old, desperate to live like all the rest of my friends and so bitter and angry whenever I had to succumb to my illness. It's really quite remarkable that my mother somehow found the poem after over fifteen years. It's also really well written, for a fourteen year old girl. But what the really amazing thing is, that at thirty, I still feel every line and every word.
     Every single day.

    by Jane Spring      1994

My illness doesn’t own me
It never tells me what to do
It screams at me and pulls me down – but I know this much is true
My illness doesn’t make me smile, it doesn’t make me love
It doesn’t dictate my dreams at night or my beliefs in up above
My illness grows more every day and spreads from limb to limb
It may dim the redness of my cheeks, but not my light within
It can take my body, but I’ remain forever whole
Because an illness can never defeat you if you don’t let it take your soul

Wednesday, 9 January 2013

The Day I Called My Doctor An Asshole. July 2008

“You don’t look fat…just…puffy.”
     “Argghhh!” I clench my jaw and bare down as pain rips across my abdomen. I once described it as feeling like someone was striking a match over and over my raw inflamed stomach.  My nurse, Tammy, puts a cold cloth on my head.
     “I look like a Goddamn blow fish.” My body is a victim of  surgeries, medication and treatments. A mash up of side effects: anaemia, malnutrition, dehydration, scar tissue, pain -the list is endless.  Everyone tried to be nice about it.  Yet, the truth is the truth. The steroid medication they prescribed for my recent flare up has more bad side effects than good. One of which is swelling of the face. It actually names this reaction on the pharmacy print out as “Moon face.”  I'm a weird sort of size. I looked as though I were a water balloon and would burst! if you pricked me with a pin. Too pale, too puffy, too tired.
     Tammy holds my hair back as I vomit into a basin. She’s telling me for the fifth time today that my doctor will not allow me an injection of pain medication. For the past 3 years my doctor has been telling me all my ailments could be traced back to being side effects of too many narcotics. Nothing makes me more furious. If I wanted the medication to get stoned I’d get it out of my kitchen cupboard. I bet it is easier to get it off the streets compared to what Dr Dick put me through.
     The tension between Dr Dick and I escalated. We simply don’t like each other. Our personalities clash.  For years I came to appointments, asking him to help me. It was impossible to talk to him. 
     Meanwhile, I continued to get worse. So bad that sometimes I had open my car door to vomit onto the street while stopped at a red light. I wasn't able to get groceries, unable to lift anything and unable to walk steady on stairs. Trying to sleep was a nightmare because of the pain and nausea haunting me all night.
      It became desprate to the point where if I needed or wanted to be somewhere, (like a wedding or out dancing with the girls, a long trip in the car) I would have to starve myself for the whole day. If I didn’t my guts would reek havoc on me.  I would be stuck in some grungy cramped public bathroom stall reading who to "call for a good time" and being absolutely mortified and ashamed at the thought of them wondering why I’m taking so long. All the while regretting to  have come at all. It's impossible to be sure and relax when you have no control over your own body. 
      A few years ago, in the washroom of a movie theatre, I came out of a stall and splashed some water on my face when I overheard two elderly ladies commenting rather loudly, “Tsk.Tsk. Disgraceful. Making herself do the likes of that when she is already so thin.”
     Dr Dick seemed to practice the same medicine as the old, outdated and more traditional doctors. They aren't giving any thought to the new research, medications and procedures. I'm a walking example that they are certainly are not using all of what is available.  It’s as though he has a one size fits all approach to treating his patients. 
     Tammy comes back in the room with a resigned look and a med cup. “He wants you to try and take it orally again, honey.”  She rubs my back while I’m curled up in pain. Tears streaming down my face.
     Dr Dick is doing this to make a point. He knows I have been throwing up everything I've tried to keep down for days.  He knows I don't absorb those pills. In two minutes they will be back up and in the stainless steel basin beside me.  He’s genius you see. Making me wait and wait to see him. Having only oral medication until he finally comes to assess me. By that time, I will be having with drawl symptoms on top of everything. He will walk in here and he will not see me. Dr Dick will not see that I'm having a severe attack. Or that I am malnourished, anaemic, exhausted, nauseous, have a migraine and feel like the vice grips of hell are clutched around my body. 
     No, he won’t see that.
     Forty-five minutes later Dr Dick finally peeked around the curtain and saw what he made sure he would see. A scraggly grey young lady, sweating, shaking and moaning – not with pain but from narcotic with drawl.  With all the symptoms explained away as caused due to my pain medication. That is what he sees.
     “Well Jane, we should stick with the steroids. I think you should go home and try to cope. Do everything that normal people do. I know it’s going to be rough but if you stick with it, you will just have to accept that this is your body and your life and it will become normal for you. And it will jut become a part of everyday. In terms of the pain medication I think we’re clearly looking at having someone talk to you about addiction.”
     On top of the ‘moon face’ there’s also another side effect to the medication -moodiness. Moodiness? That’s an understatement.  My mother calls them “bitch pills” Frustration and temper are welling up inside my chest. I knew I was raising my voice and I knew there were other patients along with their visitors and nurses in the room with us. But I was over tired and in such a state of  pain and rage, that I was probably boarder line insane –  it felt really good to scream in his face.
    “LOOK AT ME!” I was sobbing and yelling. I lifted up my shirt. “Does THIS look like someone who has no pain or health problems aside for the fact that I won’t fucking ‘cope’. Does this not look like the belly of someone with chronic pain?! I am not addicted to narcotics. I'm addicted to the relief it gives me!” Scars ran down the center of my torso , the result of being opened fifteen times since I was twelve years old. The longest one an impressive result of ninety-two stitches and fifty-three staples. I have a long tube inserted into my stomach that us used to feed me chemically predigested formula when I cant take in food on my own. In my chest there is a catheter in the main vein of my heart which acts as a permanent access to veins when I need fluids, medications, and TPN.
     I could hear him muttering passive aggressive things such as, “Jane, quiet down now, I’m just trying to benefit you in the long run. This is just the drugs coming out of your system.”
I sat up in the bed and attempted to compose myself. I hate that I can’t get upset or angry without blubbering like a baby. I am such an ugly crier. I blew my nose, took a sip of water, put my hair up then looked at him.
    “You are the biggest asshole I have ever met. You tell me how I feel instead of asking me how I feel! I know more about my illness than you do! I feel sorry for your patients. I am never going to be one of them again! You always treat me as though I am a junky when my real serious problems are getting worse because you just keep throwing steroids at me! The only reason I’m having with drawl symptoms is because you haven’t giving me anything for the pain in 72hrs!  For the past ten years I've been taking it every three hours!
    All I want is to be well enough to play with my son, and have some sort of quality of life! I can’t because you won’t treat real problems. I’m making sure that you are not to have anything to do with me ever again! Not to even so much as look at my chart. You are not allowed to treat me or consult any doctors who will. GET OUT of my face!"
     I pushed past him and the team of residents, storming out of the room as fast as I could while pushing an IV pole. Hospitals are crowded with people, supplies and nurses desks But there was one place no one would find me. I sat in an old shower stall next to boxes of Christmas decorations for two hours.  My whole body shook as I was sobbing. My nose was running, I was a river of tears, digging down deep to cry everything out of me. I felt so heavy     with it. So I let it all out.
     I hadn't known that within a few days I would meet my currant doctor, Dr S. She did more for me in the first three months than Dr Dick did in five years. She was able to supply me with new medications, set up appointments to Medical Day for IV fluids, iron, and antibiotics which allowed me to have more time at home. She was accessable when my symptoms began flare. Although I’ve never gone completely into remission, and I've spent much of the past decade in the hospital - under her care I went fourteen months without a single night in the hospital.  That is the longest stretch I've ever had. She treated me as educated patient and listened to me. 
  Dr S not only saved my life - she gave me a life.