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.