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A Cabinet of Curiosities


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End of Semester

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As with every end of semester, I am once again feeling inadequate in my ability to write in a proper academic voice and question whether I really belong in academia or not. It seems from my perspective that everyone is so far ahead of me – joining groups, applying for funding, getting to speak at conferences, and just generally seeming more ‘with it’ than I actually feel. Apparently, this is normal when being a graduate student who is pursuing a career in academia.

On the other hand, I need to reflect at how far I have come this semester. I missed the first two weeks of school because I was hospitalized with not one but two internal bleeds, my platelets had completely dropped out and, to top it all off my liver was very unhappy causing me to be jaundiced for a couple of weeks. During my hospitalization, I had two procedures to stop the bleeding, 3 platelet transfusions and 5 blood transfusions. I was also told that the drug that I had been switched to only a short time before was not working and it was discontinued. I was then put back on the original drug I was on and sent to radiology and a liver specialist to discuss TACE – and with that I entered uncharted territory medically speaking. I am a unicorn of unicorns.

During the semester, at times I would have up to three hospital appointments per week – every week, as well as a couple of procedures tossed in for good measure. Keeping up has been a challenge because as an art historian, there is a ton of reading and writing about what had been read. Having so many appointments was not only time consuming, but also very distracting because everything that happens in the appointments had to be processed and assimilated, as well as recovery times from the procedures to contend with.

When people talk about grad school being the hardest thing they have ever done, I wonder what they would say about what I went through this semester… When I feel like I am failing or not good enough because I am not part of the executive committee of an academic group, or because I missed the deadline to apply for government funding; I need to remind myself of everything I have lived through and that the most important part is that I am here, living, loving, studying. Everything else is chocolate sauce.


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What is Wrong with Being Whimsical? 

  

  

It is no secret that I am different. I think differently, I dress differently, I am usually on the opposite end of any kind of debate, not always by choice but sometimes by circumstance. And of course I have to be medically different which can be very isolating because no one ever really knows what to say because either they don’t remember what I have or they just don’t understand it at all.

So it comes as no surprise that my thesis topic would be completely different from everyone else, both in subject matter and theme. While everyone is learning more about Aborigonal rights and post colonial issues, looking at art through a feminist or LGBTQQ lens, or focusing on an artist or place that particularly moved them – I am going back in history to examine a mythical creature as depicted in art through to the journals of explorers of the  New World. 

At first I thought my topic was awesome because it was so different, but then I started to feel somewhat socially irresponsible that I was not looking at something that would have more of a contemporary impact. In fact, I started to feel embarrassed about my topic. I had a bit of a rough start to the summer and ended up not working on my thesis very much at all. I even started doubting whether I should return to the masters program or not.

For the past little while, I have, through various means, been trying to motivate myself to want to go back. Then, I found this meme with a quote by Stan Lee which I have added to the top of this entry. It made me think about my thesis topic and how it was ok to be whimsical and entertain my audience, because other parts of my life are so very serious that sometimes I need a break to focus on something different, something that will transport me somewhere else, a different time and place – even for a little while.

As Mr Lee says: “Entertainment is one of the most important things in people’s lives… I feel that if you are able to entertain people, you are doing a good thing.” 

… and so I ask myself: Why can’t I be the authority on unicorns and mythical beasts? Why should that be embarrassing? There are still a couple of weeks before school starts again, but I am feeling a bit more confident in my chosen topic. 
If nothing else – it will be memorable! 


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Playing for Keeps

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Most of the time I am involved in the day to day activities of a Masters student. I am a TA, I grade papers, I research, I write papers and of course I look at a lot of art. This is pretty much my ideal career path. I love what I do, more than anything else I have done before.

Then there are days like today, when I take a moment to think about everything that has happened in the past little while. It is these times that I realize that this health stuff is for keeps. That pain or the digestive issue are going to be my constant companions for the rest of my days. For the most part, I am ok with that because – lets face it, I am here, I am able bodied and I have a really good team supporting me. At the same time, it is sobering to realize that the body that I once had will never come back, that this is what is referred to as a “new normal.” I have a really cool scar (took 58 staples to close it after surgery) along and across my abdomen that makes me look like I got into some sort of crazy knife fight and various smaller scars from other procedures and interventions that map out the different incidents and interventions that have happened to me over the past two years, but these marks are just one part of a larger story of what makes up “Me.”

I have to wonder, what my insides look like after so many interventions because much more has been done on the inside than on the outside. Scar tissue, embolizations, RFAs, necrotic tissue, radiation – these are all permanently etched into my organs and my flesh. Each mark having its own history upon my body. Each mark whether visible or not changing me, changing the way my body works, changing how I function. Each scar a reminder of things that went wrong at one point or another, marking moments where my life has been saved.

Oftentimes, people will look at me if I am seated in the metro as if to say that I am taking up the seat of someone who really might need it. Little do they know what I am hiding under my clothes, under my skin. Little do they know what my body and my mind have been through, and is still going through because this chapter of my journey is not even close to being completed.


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Be Positive Mantra

I am understanding more and more how the “just be positive” mantra is really hurtful, especially when one is scared or unsure about what is going on. Hearing someone dismiss those feelings by saying “be positive” really makes one feel like they are doing something wrong when they don’t feel like sunshine and rainbows.

I realize that if I have an off day or two, it will not affect the outcome of any tests, scans or what-have-you. Being dismissed with a “be positive” when trying to convey your feelings to someone is really frustrating and undermines the trust that I might have when talking to certain people about serious matters. I think putting on a fake smile it more detrimental than acknowledging a rough day and letting the wave of frustration/sadness/fear wash past. I think the most important part is to acknowledge these feelings and not squash them down. Our society lately has seemingly become so afraid of things that are not pink and pretty that no one really wants to talk to or approach others who are going through a rough time.

Just because I have feelings other than positivity does not mean that I am inherently negative, in fact I am generally a very positive person. I am beginning to understand the value in not compartmentalizing how I feel all the time, but I am also aware enough to know that I do not want to unpack and set up roots in “negative town.” I know this uncomfortable moment will pass, as they always do and things will look brighter, but sometimes it would be nice to talk to someone who doesn’t dismiss these feelings with a “be positive” or “at least you have ‘x’…”

All this to say that this is a weirdo moment in time containing many more questions than answers. I know that I will eventually get the answers that I am seeking – it is just taking more time than I am feeling comfortable with and “feeling positive” is not always possible when serious things hang in the balance when there are so many other emotions that are being felt at the same time including but not limited to fear, frustration, anxiety – this does not mean that I am not grateful for the wonderful things that are in my life, I am always so very grateful for the wonderful things and I do not see why I need to defend that every time that other emotions come into play.

Sometimes it is not about other emotions at all, sometimes it is just about the reality of circumstances. No matter how much I “think positive” it is not going to drastically change any scan outcomes or whether or not I will get an ‘A’ in a class, or if I will ever be able to safely go to the gym and work-out again. These things are often beyond my control, as much as I hope and wish for that ‘A’ or a clean scan, if positive thinking were the only way to get the things that I want, I would be a millionaire philanthropist who donates time and money to art centres and cancer research. Every time I say something and someone says “think positive” I get angry. I know they mean well, but at the same time, it sort of comes off as a verbal tick – sometimes it is just nice to hear “oh man that sucks” rather than a mantra that is just going to make me feel even more isolated and empty.

Now, I must get back to writing my last paper of the semester!


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One year Ago: April 17, 2014

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One year ago today was the single most scary day of my life. It was the day I came very close to bleeding to death, very suddenly. It was the day that my very last paper for my undergraduate degree was due. I had been experiencing some pain for a couple of days and was mentally monitoring it, I knew that if the pain got any worse that I would have to go to the hospital and see what was going on.

That day I was putting the finishing touches on my paper before having to go and hand it in to my professor. As the day progressed, the pain was getting more pronounced so I took a heavier painkiller to be able to muscle through and finish my paper on time. As I was chatting with my husband on his lunch hour, the painkiller just stopped working, as if someone flipped a switch, I told him what was going on and he said that he would come straight home so that we could go to the hospital together. I then emailed my professor and let her know what was going on.

Having to call an ambulance for yourself when in extreme pain is one of the scariest things to have to do. I was hoping that the dispatcher knew that I was being serious and not kidding around or anything like that. Luckily, the ambulance arrived in what felt like an eternity, but I know it was only a few minutes. My husband arrived home shortly thereafter and was able to ride with me.

While in the ER, they brought me to the trauma room and set to work stabilizing me, bags of fluid, blood transfusions, platelet transfusions, they stuck an NG tube in to empty the contents of my stomach, questions, before they brought me for a CT scan they put some defibrillator paddle pads on me (just in case which freaked me out) and then to angio where they finally, and unceremoniously put me under without warning. I remember them wanting me to lay flat on the table for embolization, I kept asking for a painkiller because I knew I would have to stay still for the procedure but was in a lot of pain… anyway the next thing I know they are waking me up two days later in ICU.

In total I was in the hospital for 6 days, final diagnosis: haemorrhagic shock brought on by necrotic tissue slitting open in my liver caused by metastatic disease.

Since then, I have had 5 CT scans, 1 MRI, a right side portal vein embolization, open RFA surgery (58 staples), 10 blood transfusions, 1 embolization because of tumour bleeding after the RFA, 1 8 grey dose of radiotherapy, 1 cardiac ultrasound, 1 PET scan, a closed RFA and multiple blood tests and doctors appointments.

Now, because of all of these procedures it makes reading my scans very complex, so my case has been brought to the tumour board – again- to see if exactly what is going on can be deciphered. I sometimes wish that there was someone I could talk to who would be able to tell me that it is going to be ok, but the truth is, no one knows. The truth is I could bleed again at any time, anywhere.

Through all of this, I have remained a student, graduated with my BFA, started the Masters program (part time) and worked as a TA this semester.

 

 


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My Hero

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April 6:

I have a few people that inspire me and who are the most special people to me in the universe. Here they are in no particular order:

My husband: he is one of the best people I have met in my life. He is kind, funny, cuddly, tall, handsome, loving and just plain fun to hang around. He never talks ill of anyone, and lives life with such gusto and zeal. I am very lucky to be his wife, his best friend, and the nutella to his peanut butter.

My grandmother: My grandmother lived with us when I was growing up so I got to spend a lot of time with her while my parents were out doing whatever it is that they did when they would go out. She taught me how to be strong, how to cuddle, and when to walk away from a fight.

My film animation teacher at Dawson: “David” We met by chance one semester after one of the classes that I had chosen did not fit the criteria of what I had left to take for my DEC. Oh boy! What an amazing and wonderful chance meeting that was! Our teacher/student relationship blossomed into a very long term friendship. The type of friendship where we would talk for hours about anything and everything. So many of my memories involve David, and so much of what I do, see, experience, reminds me of him.  I saw David for the last time in July in the same spot he always was, doing his crossword. He died in October. I still always look for him when I pass by his “spot.”  I miss him terribly.

The Chair of the Art History Department: This amazing lady is soft spoken, super intelligent and oh so strong. She is one of the kindest people you will ever meet, but she is also firm and fair. She is the type of person that I aspire to be like. Beautiful inside and out.

My oncology team: These are a bunch of the most amazing people. From my pivot nurse, to my oncologist, to my surgeon(s), all the people on the tumour board, all of the radiologists these people are true heroes who work so hard to help me (and the rest of their people) be well and feel well. Without them, I would not be here.

All of my Life Raft Group gister-sisters and brothers and everyone else I have met through this journey. For how classy, upbeat, kind, driven, and all around inspirational they all are in the face of such a scary disease.

Our dog Ludwig: For being a pest, a cuddle-puss, and jester. I can not imagine life without him!

Sarah Brightman: her music is sublime, so etherial and it makes everything better. She is also a fellow DreamChaser. I hope to meet her one day!

John Ritter: My idol.


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All About Me

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April 5:

April 5th is also my birthday so it is a pretty big day!
I think my greatest accomplishment in the past five years is returning to university, post diagnosis and completing my Bachelor of Fine Arts (with distinction) and then getting into the Masters program. This is something I have wanted to do for a VERY long time but put it off as something that I might do in the future, if I had enough money. Truthfully, being an art historian/historian is the only thing I ever wanted to do since I was a little girl. I have always loved ancient civilizations, archaeology, anthropology, architecture and all things pertaining to art. Why I did not choose this path to begin with will always be a mystery to me. But, I am here now and I really feel that I belong in this field.

I have also been published several times in peer reviewed journals as an undergrad and in the Masters program. Even though some things are quite challenging, like the class on Settler Colonial Art History that I took this semester, I really love what I do – I just wish I had gotten here sooner!