Saturday, July 28, 2018

My story


This new law that has come into action makes me more conscious of the lack of awareness
that's taken into account regarding the system of Canada. Please read on as I tell you a little
about my life.
I am a 30 year old woman living in Langley BC. My parents and I were unaware of any
health issues as my childhood was average. We (as in the doctors, me, my parents) learned about
this when I had a severe stroke in the summer of 1999.
I was at my Aunt and Uncles house on Vancouver Island, with a few of my other cousins, for a two week vacation over summer break.
It was such a beautiful summer! The weather had been perfect, so of course we took advantage
and played outside as much as possible! I was playing a little basketball with my cousins, when
suddenly I had a very strange pain in my head. It was a sharp pain right in the lower half of the
back of my head, not something I ever felt before. I told my aunt so she gave me Tylenol and told
me to lay down. Within minutes the pain increased so much so that it became unbearable! My
aunt's family has a history of epilepsy, so thankfully she had the intuition to get up and go
without being overwhelmed by a state of emergency.
As we drove to the hospital, the unbearable feeling in my head became so relentless that
suddenly everything went blank in front of me. My body was slowly shutting down. As my aunt
drove to a parking spot and helped me out of the vehicle, I started vomiting uncontrollably and a
nurse came to help out.
At that moment, I lost consciousness. In order to perform the surgery, it had to be
completed at a hospital with more acute care so after I was stabilized, I was transferred to
Vancouver Children's Hospital via a helicopter. The doctors completed the surgery by 3am. The
diagnoses was a malformed blood vessel that had been present upon birth. I was assured that this
would never happen again. There job was complete, but now the rest was on me. I was very weak
from the trauma, so I had numerous complications to tend to. My swallowing became so difficult
for me, that everything I ate had to be soft, I had partial paralysis on my right side, so Physio and
occupational therapists would work with me to regain necessary mobility. I recovered at Children's Hospital and Sunny Hill Health Centre where my and family stuck to me like glue (and thank goodness for that!).
During my stay, I came to the realization of some things. I was among many other individuals who weren't capable of taking care of themselves, so they had the
aide of a nurse by their side to assist with all their needs. One of these needs was eating. Most of
them had swallowing difficulties, so the nurse would have to thicken the food with a thickening
agent to thicken foods that are thin (think thickened orange juice, thickened soup, thickened
water). The food would most likely come from a warmer to heat the food that was transferred
from VGH to Sunny Hill. By the time the food had even arrived, it was dry as a piece of leather,
and they expect people to eat this stuff! The nurse will then shovel this thickened "food" at them.
I have had thickened food myself, and it is by far the grossest stuff anyone could even try to pass
for food. I had a hard time swallowing so I needed to have everything thickened. My mom would
cook me thickened food like mashed potatoes, pudding, applesauce, etc. Why? Because I have a
mind and a will and so does she, and that's taking every bit of life away from a human being. It's
like saying, we'll take away your dignity, your self worth, treating a human being like their
inhuman, and in this day and age, that is not how it should be. When you see that nowadays, you
would think we live in the dark ages. But no, in this day and age, people are still being treated like
they are not worthy to be treated like a regular human being. I experienced this stigma twice in
my life. Read on to find out more.
I get the system. There are levels that you qualify for, that's all you get. The least sufficient.
Whatever will keep you alive. That's not right, however that's exactly how the system works.
More about that in a bit.
With rigorous physiotherapy, I slowly but steadily recuperated enough to get back on my
feet, and prepared to integrate back to home-life in Langley. With the help of a teachers assistant,
I managed to graduate High School and planned for training through the Culinary program at
Vancouver Community College. The course was for a year, so I would travel from Langley to
downtown Vancouver every day. I took in every second of my time there and just enjoyed it for
what it was! And you could tell in the food I created, when you do something with passion, it
shows!
After I graduated, I worked at various restaurants throughout the lower mainland where I
gained my Red Seal and would use my passion to sharpen my skills. In 2008, I worked at The
Bacchus Bistro at Domaine de Chaberton, and that opened up a whole new great love for me,
food and wine! I got to discover ways to enhance my eating experience even more!
In 2009, I decided to go abroad, so I flew over to England and stayed with relatives for a
month! It was truly an exciting time for me!
In 2011, my world came to a crashing halt. On September 27, I had another stroke. The
malformation I was assured would never happen, happened again. This was a lot worse than the
first. While I was on the table getting surgery, my heart stopped for 14 minutes. They had no
choice but to intubate me and put a tracheostomy in me. The next several months are times I'll
never forget. Because I had the tracheostomy in with the balloon inflated, I wasn't able to talk.
This means that the only way to communicate was to use an alphabet board which I pointed to,
with assistance and spelled each word separately. The words were written by someone to figure
out what I needed to communicate. My mom could read pretty quickly & figure out what I was
saying. I had and still have a feeding tube. Parts of my body are paralyzed, including one little
muscle in my thought called the epiglottis. Your esophagus is a multitasking The epiglottis is a
flexible flap at the end of the larynx in the throat called your epiglottis. It acts as a switch
between the larynx and the esophagus to permit air to enter the airway to the lungs and food to
pass into the gastrointestinal tract. For me, my epiglottis doesn't have any sensation on whether
food or air is going down, so any food I would eat would go directly in my lungs causing
pneumonia. This is why I would need a semi-permanent feeding tube so I get my nutrition,
bypassing my lungs. This is where I discovered the second stigma with disabled individuals.
I went on from the hospital to G.F. Strong, the rehabilitation center, where I was supposed
to get nice and strong! On paper, that's nice and all, but here's the reality: I was too sick to stay at
GF, but I was too well to stay at the hospital. I went from G.F. Strong to the hospital because of
various constraints: I had a plural effusion, pulmonary embolism, contracted MRSA in my
feeding tube (don't worry, it's at bay now), had pneumonia multiple times, needed antibiotics for
this, that and the next! One thing after another, and there was always something else. G.F. Strong
was my home for a year, and then I moved on to a care facility in Fleetwood called Carelife. We
had struggled to get on the CSIL program for months, so I could live at home with the ability to
have caregivers.
Now, I am living independent in my own apartment with caregivers coming in to help me
with my health issues. It has been a real struggle for me, but it's the struggles you have to go
through to make you, you! Your own uniqueness! Right now, I'm busy at the game of life, I have
a board, and I'm trying to enjoy my time right where I am, because I'll never get it back!
When you go through pitfalls like these, you come to start questioning the bigger things in
life. Time is all relative, our life here on earth is short lived. It's the little moments in life that
make it all matter. If everyone could just stop and enjoy the moment they are in, to know that
you will never, NEVER have a moment like this, maybe the race of life wouldn't feel like such a
race. If no one on this world even existed, would things keep going, keep living just the way they
are? Of course! It's us humans that get in the way of letting nature just be. All that being said, we
humans are innovative, creative and have made huge advancements in life. If we put our energy
into positive purposeful things, we can choose to do great and wonderful things with our gifts!
Everything aside, the real issue being raised. Doctor assisted suicide. Canada is such a
young country that it has no laws in place at all regarding the rights of people in that state. That
gives people room to do whatever they want, and so some sort of law should be put in place.
Which brings us to here and now. I think the guidelines I think that each region should have a
board of professionals who know and realize what the road ahead could look like for individuals.
I think giving that power to every doctor is too chancey. There are too many doctors out there that
don't seem to be very professional. I think there should be a board of directors for every region
that meet together to make the decision. It's too much to put this on generally "all practioners".
Everyone lives out there life individually and in that, different people know different things.
As a human being in pretty much the same circumstances as the people who would be
approved for this particular bill, I can tell you that, yes the road ahead is tough, but is successful.
With the law at present, individual people are, in a sense, 'playing God'. It's not for us to
have that sort of power, which brings me back to having a committee of some sort. I feel the
board should be made up of 6-10 individuals that have experience with the Health Care system.
Navigating it on your own can be so dizzying, one person says this another says that, people just
want proper guidance. People say there are so many gray areas in our current system. But could
it be set up that way for a reason? If your willing to fight hard for what you want, you might just
get it. The unknowing go through the system blind. But people who are here to stay put up a
fight to get what they need. Which leads me to this: Is our system really flawed?y