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.