Saturday, January 16, 2010

Lions and Tigers and Bears?

If every story has a backstory, this is mine...

Grade 5
One of my schoolmates talked to the class about her sister's diabetes and the day-to-day routine since her diagnosis. She went through the symptoms: thirst, frequent urination, dry skin, fatigue, weightloss... I remember thinking "I have all of those... except one- weightloss." And with that, the posibility fled from my mind.

Grade 8
Preparing and presenting a speech was required every year of middle school. For some reason I chose to speak about the discovery of insulin.

Grade 10
Fall: Thisty. Really, really thirsty. Going to the bathroom a lot. Skin parched...

I thought I had a urinary tract infection and booked an appointment... Losing one pound, two pounds, five in a week...

It was a new doctor. She did a full physical. I remember handing a urine sample to the secretary at the front desk. She said, "We'll call you if anything is wrong, but I'm sure it will all be good." "I am sure it won't be," I thought as I left the office.

Winter break: Falling asleep while sitting watching TV at 6:30pm... The only thing I remember asking for Christmas was a belt, so my pants would stop feeling like they were falling off...

The new year: The doctor's office did call and asked my dad to take me to the lab for a few blood tests. Nobody told me why. Nobody needed to tell me why. I knew what it meant when they were testing first thing in the morning and then two hours after eating...

January 15th, 1994: I was eating dinner with my dad, my grandparents and my sister. I remember roast beef. The doctor phoned and told my dad that I needed to come back to the office. They wouldn't tell him why. He pressured them for answers. They still wouldn't tell him why. He started yelling. They told him nothing.

My stomach turned. I stared at the dinner on my plate, before finally just leaving the table.

At some point my dad phoned my previous physician. He asked them to obtain the test results...

January 16th, 1994: I went to school, but was pulled out of class and summoned to the office. My dad picked me up. The only thing I remember about this was sitting in the car driving to the hospital and thinking, "I promise to be a better person, if this just ends up going away."

January 17th, 1994: Holly- middle-aged, brown-hair, lots of make-up and strong perfume- the diabetes nurse/educator woke me up at 6 am. She and several others stood around as they asked me to step onto a scale.


Being half asleep, I fell off several times before attempting to steady myself by spreading my arms out like airplane wings. It was a ridiculous scene; even half asleep I realized this and started laughing. I recall the event as highly entertaining for me; really uncomfortable for eveyone else.

The next seven days: I stayed in the hospital until the 24th.

Things to remember:
  • Read The Catcher in the Rye.
  • My mom sent me flowers. Part of the arrangement was gladiolas.
  • My friends came to visit me, which was nice. One of them saw the bouquet and said, "Oh, I thought gladiolas were for funerals..." which was not nice.
  • I made a weird looking basket.
  • I learned to hate the smell of Bacti-Stat soap.
  • Lots people in my family came to visit; my dad stopped by every night. This was the best part of my stay.
  • The daytime when no-one was there was boring. I remember staring out the window. The curtains were ugly. I think they were orange.
  • I made friends with one of the student nurses. She'd hide out in my room and we'd chat. It was from her I learned my sideshow status- I was the first type 1 diabetic any of the nursing staff had ever met in the flesh.
  • Every hospital professional I met was eager to mention the promise of a cure in no more than 5 years.
  • Had a heparin lock shoved into my arm without any warning. The nurse just grabbed my arm and, without any explaination, pushed the apparatus underneath the skin of my forearm. It was rather horrific.
  • I got a day pass one day. I went to the mall with my dad. I bought some shirts. The sales lady kept staring at the heparin lock in my arm. I remember my dad saying that he couldn't help but think of me as a porcelain doll now.
  • The staff made my dad and my sister learn how to give me injections. The idea behind this was that in the event that I was sick and unable to give myself the shot, either of them could step in. This always confused me, because I always figured that if I was so sick as to be incapacitated what I'd really like was to be spared being jabbed and taken to the hospital. When I think back to it, though, I find it especially unfair to my sister- she is terrified of needles and was was practically in tears when it was her turn to poke me. That's when I decided I really didn't like Holly and her perfume.
  • Discovered insulin smells like Elastoplast band-aids.
  • Annoying nurse on the night shift routinely woke me in the middle of the night to quiz me about the symptoms of hypoglycemia... I still wish I could show up at her bedside at 4 am to wake her up to quiz her about the symptoms of diabetes.
  • Asked my endocrinologist if my life expectancy would be affected. She told me, without any hesitation, that diabetics generally live 1/3 less than the average population. It felt like a sucker punch... especially at 15.
Getting sprung: a day or two after leaving the hospital I went to see a movie with friends. It was Philadelphia, which in retrospect was not the best choice. Toward the end of the film, when Tom Hanks' character dies there is a scene of his wake. Playing on the television is a home movie from his childhood. I remember crying and not being able to stop. I couldn't explain why I was crying at the time. But, now I think I know why... and funny enough, that's actually the only time in my entire life that I cried about my diabetes.

Thursday, January 7, 2010

Meeting in absentia...

I have really wanted to write this and not at the same time. It's not that I don't want it said, but more that I am not sure I have the exact words… I kind of think that there exists something in-between spaces. Like, when you enter an old house and touch a window frame: how many people before you stood and made contact with that point before you? It's like past, present and future all come together in that space. It exists, but doesn't. It's just kind of in-between. History? Memory? Connection, maybe? I don't really know that you can confine it to a word… or perhaps it is a different word for different people in different points of time.

People generally associate the discovery of insulin with the city of Toronto, but no event exists in isolation and there is a backstory to this story. Prior to moving to Toronto to begin his research into diabetes, Frederick Banting lived for a short while in the city of London, Ontario. After kind of a miserable start in private practice Banting also began to teach medicine at the University of Western Ontario. He had no relation to diabetes, but one day a colleague asked him to fill in and give a lecture regarding the pancreas. One evening he lay in bed reading material to prepare for the talk. At 2 am he woke up and wrote down an idea that came to him regarding a possible treatment for diabetes… and that is how his trek to Toronto and the eventual discovery of insulin treatment began. The house where this small moment took place still exist in London. It is now a museum. Most of the house covers various aspects of the site's history, but the bedroom where Banting dreamt his original hypothesis has been preserved.

I visited the space with a friend on Wednesday. As we entered the bedroom the curator told us of the various other visitors to the room. There are, essentially, three groups of people that come to the museum:

(1) the average cultural tourist, with no ties to the issue
(2) researchers:
  • The rational bunch generally decried any sense of mysticism about the room. But eventually there came a point where they would lean on the bed to comment on the wall paper or some other detail of the room. "It's not the mattress," the curator would mention "it's the bed frame that's original" and invariably the researcher(s) would inch back to grasp the bed frame.
  • Of course, there are exceptions to every rule: one gentleman from South America who had been doing diabetes research for over twenty years would was positively giddy as he sat on the bed. He managed to convince the curator that if he was just allowed to have a quick nap in the bed perhaps it would provide the inspiration he needed to cure the condition. The curator noted that if that was all that he needed to come up with a cure, he would sure oblige- and, so, he dimmed the lights and let the researcher have a quick rest in the room.
(3) People who have a direct association with diabetes:
  • A family with a 9-year-old girl who had been diagnosed with diabetes some five years earlier. Though the rest of the family entered to bedroom, she would not enter the room. She merely stood by the door, never crossing the threshold.
  • A woman whose father had been among the first to receive treatment in Europe; this allowed her to be born 15 years later.
  • A young mother whose baby had been recently diagnosed with diabetes. She came into the room, sat on the bed and began sobbing. The curator let her be, but after ten minutes, he could still hear her crying from down the hall. He grabbed a box of Kleenex from his office and went to the room. When he entered and offered a tissue the mother stood up and stopped crying. "No. I don't need that. I will not cry anymore now. I know that my child will be okay." At which, the curator took the Kleenex for himself as he started sobbing.
To the side of the bedroom sat a small shelf with a short write-up and dozens of written cue-cards. Apparently, when the museum opened there were cards placed so that people could leave suggestions and comments regarding the exhibits. Rather, people began to leave notes to Frederick Banting. So, the museum decided instead to leave the cue-cards out for people to inscribe a public message to the late doctor. There were several different languages present. A lot of them looked like children's writing. Most of them were simply put: "Dear Dr. Banting, Thank you."

I sat on the bed. I held onto the railing and in that moment I felt like I was holding the hand of every other person that had entered and held onto that space... including the person that came up with the idea for the research that would eventually save my life just over 70 years later. I can't describe what that felt like and I rather suspect that every person that has sat in that same spot has experienced a different connection to that space. I can tell you this though: when I left that site I no longer hated my body and its misfunction. I will never again feel angry for the regimen that follows being diabetic. Somehow, at that moment I made peace with my body and its broken pancreas, because what I realized in being momentarily transported back to a time when there was no treatment for diabetes is that it was once a inescapable death sentence: that disgusting lethargy and thirst that I felt prior to being diagnosed and medicated is generally how people stayed until they eventually died of a slow starvation over six months to a year tops.

January 16th, 1994 is when I was diagnosed and when that anniversary surfaces next Saturday I won't think of it as
16 years with diabetes, but 16 years of life I wouldn't have had if it weren't for insulin... And for that my note read: "Dear Dr. Banting: Have had diabetes for 15 years; thank you for saving my life."