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Archive for the ‘Thought of the Day’ Category

I’m spending a bit more time in this space, so don’t be surprised if things start moving around. Example, I finally added an up-to-date PDF version of my CV, because wow, that page was looking a little rough.

Apparently, I don’t know how to use tumblr, so three weeks of posts were uploaded in four days. If you want to sneak ahead on Conversations with My Surgeon you are more than welcome to while I manage cross post here in a sensible matter.  There was a bit of a delay here, because my country internet was not having any of my uploads.

2016-08-21I’m still working away on Station.  I’ve managed to compose some pretty decent horror music using audacity and  pxtone (yes, that page is in Japanese, here’s an English manual).

There’s three paths for Edana to follow. I’ve been having fun writing them in Scrivener. I really wasn’t planning for this game to become a large thing, but I started to like the story. It’s gonna need a bit of love and constructive criticism. But I’ll keep moving forward.

ETA: I’m playing with different fonts and I updated the categories, so it’s useful. Meaning if you want to see all posts about a subject, you can!

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Wake me up

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(cross posted from my own blog and Kinja)

I would have taken the broken arm, at least it’s a pain people can see and can understand. 

I use to make art work back in the early aughts about when I was bullied in high school. One of my video art works,“Words”*, was about how people tell you over and over “forgive and forget” as though somehow you can just get over that. That sentiment was like a punishment. Every time I opened up  about being bullied, I’d get shot down with “you need to forgive and forget.” It takes a long time to get over five years of daily torment. I found I didn’t need to forgive and forget the people who viciously harassed me, but I needed to forgive myself for letting it happen.  I’m very hard on myself.  Of course, nothing is that simple. It’s never straightforward and there’s no single path to healing. 

Back in 05, I decided to get some counselling because making this kind of work was taking a lot out of me. I went to counseling at York University (where I was a student), and my evaluation went well and I was assured they could help me. But my assigned counselor was horrible. I talked about being bullied, humiliated in form of a public spectacle sexual assault (not rape, I know in Canada we think those words are interchangeable, they aren’t), how that was making me have panic attacks, and I briefly mentioned I was doing therapy in tandem for support. He heard the last part of that and said “You know, there are other people with bigger problems than you.”  I clammed up, he asked me if I wanted to continue I smiled and said “No, I’m great!” and left that place and found a private place to sob.

Now I  joke “I guess I didn’t fit the subject of his thesis.”  I should have complained, but I was ashamed and embarrassed, and I actually believed him. It was similar to when I was bullied. I didn’t want to talk about it because I didn’t want people to see what the bullies saw and start believing the bullies must be right about my general awfulness.  I got bullied by my ex-counselor into silence, because I didn’t want another one to agree and thus make me feel even worse.  

When I sought out counselling again to deal with the crippling stress, depression and anxiety of my medical problems. I got my family doctor to make a few suggestions of counselors because we both know I have terrible luck with all doctors.  I got three suggestions did some research and went to the first one and I started by telling my new therapist what happened last time and that I didn’t have high hopes for this time. It went significantly better and as a result I have gotten better (not that it was easy, it wasn’t, it’s no 80s clean up montage.)

Emotional pain is at best, difficult. People can’t see it, and they don’t understand it. They cover it up. We feel ashamed. We don’t talk about and it becomes worse. I talk about this earnestly as a person who represses everything and still has difficulty crying in front of my therapist and instead I twist my face into a contorted smile. My “I’m gonna tell you something awful, and I’m gonna cry, but I will smile to stop myself from crying because I can’t stand the humiliation of crying and appearing weak.” smile.  I have a double standard, I’m totally okay with other people’s tears and will comfort them, but me? No, there’s no crying allowed here.

I’ve gotten better. There was one session where I sobbed for twenty minutes because I was so upset that my surgeon let me suffer for eight months, because he didn’t believe me that I was still in pain from a ‘simple’ test, and all he had to do was give me a shot to stop the pain. He told me this matter-of-factly after my surgery because I kept asking “Why was I in pain for so long?”  The pain was terrible, but the knowledge that no matter what I said or how I said it I would never be heard, and that I’d suffer again and again because no doctor would ever believe me was devastating.

I partially blamed myself, because I wondered if he refused to listen to me because my family doctor and I complained about his colleague who mistreated me and now I was “the difficult patient.” I’m not difficult, I simply don’t ‘like’ being abused.  I use ‘like’ in this way, because my surgeon’s secretary made a snarky comment about how I “didn’t ‘like’ the private clinic”. I explained “I didn’t ‘like’ being lied to about which procedure I was receiving.” She didn’t ‘like’ that comment. 

And once again, there comes this silence. That awkward silence of ‘we don’t talk about that’ or ‘I don’t know what to say’. The second option is better. What am I suppose to do? How do I stop that from happening again? And will people listen and understand? My life seems like a cycling of bullying and shame silence, whether it be by teens, my ex-counselor and now doctors. I want it to stop. It’s bullshit. People like to treat me like garbage, and now I’m slowly going to write about it. It will take time, and maybe one day, someone hear me or I’ll learn how to deal with it and it will stop. 

To quote Captain Picard “I’m drawing the line here.”

As a side note on visible pain when I was going through the final arc of my medical malpractice mistreatment misadventures garbage, I was in constant pain for several months. The only time I received general and overwhelming sympathy, empathy and support from others  was when I got a root canal.  For some reason a root canal was an acceptable and understandable form of physical pain. I’m assuming this stems from a general fear of dentists and that most people go to a dentist and there is norm for dental experiences. Whereas crippling anxiety and constant pain in my uterus was a pain that was not understandable, except by an exclusive few, which resulted in silence and occasionally questions on whether or not that pain actually existed.  

I’m no social scientist, but it seems we have difficulty believing things that are happening to other people but have not happened to us. Root canals are generic enough that people seem to be trained to be sympathetic to it; whereas any illness involving sensitive organs seems to cause people to be at a loss of words or in disbelief. Though I suppose we never ask “how’s your uterus treating you these days?”

*the work is slightly dated, but the premise is still there. 

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Jian Ghomeshi presents a good argument about the unfairness of the depiction of Iranians in the film Argo. As a viewer I always wonder about accuracy; we often forget that people and places are complex and are happy to believe a polarized version. Complexity is something I often explain to my students that nothing is as simple as a movie makes it seem. You need to look beyond and consider what is being said and why it’s being said that way. It’s generated a few interesting comments on the Globe & Mail.

Yesterday I stumbled upon a twelve page document from MOMA on rescuing art.  It provides great and simple instructions on how to handle art that has been damaged, steps to preserve the work, and general guidelines on how handle a disaster. A lot of art work was destroyed in hurricane Sandy in the street level galleries of Chelsea New York. I can’t imagine going into the gallery (or a home) after a disaster and witnessing the devastation. Heartbreaking. Hopefully, some of the MOMA’s advice can save a few of these pieces.

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It’s been awhile.  It’s not art or games, but medical.

I finally got some good news this week that I will receive surgery, an abdominal myomectomy for uterine fibroids,  in March of 2013.  I’ve been in and out of doctor’s appointments, hospitals, and testing facilities since March of 2012. They’ve known what was wrong with me since the end of May. However, a little side misadventure (that’s putting exceptionally lightly; worst nightmare and traumatizing  only begins to describe that arc of the story) caused many delays. A big weight has been lifted from my shoulders. Yes, surgery is probably going to be scary, but it should end my suffering so I am happy to finally let someone cut me and stick their hand in me to remove my problem.

That’s what I’ve been up to. I intend to write an article (or several since a lot has gone on) on the entire affair. It’s been a strange odyssey of chemical changes, emotional roller-coaster ranging from awe, resounding joy and crippling depression, as well as my amazement of what the body can do.  I was beginning to feel like a character on Coronation Street, in the sense that nothing was going right and new problems kept arising like any good soap opera. I kept asking friends: “is it suppose to be this hard to get fixed?”

Since my health is significantly better I’ve taken up yoga, to help ease the stress, and I’ve been pushing myself at the gym to see how ‘healthy’  I am. In October of 2011 when I started jogging again (I’ve been jogging since I was about 12) I would start to blackout after about a minute and half of sprinting.  It was one of the reasons I booked a physical with my brand new family Doctor. Getting a GP was the best thing I ever did. The other reason was constant migraines that were similar to strokes (blindness, numbness in the left side of my face and arm, as well as a typical migraine aura). Turns out they weren’t migraines but mini strokes (not brain damaging ), because I didn’t have enough blood getting to my brain. How many people can say they still gave lectures on art history while having mini strokes? Not many.  I don’t recommend it.

In March of 2012, I was diagnosed with severe anemia- Hemoglobin 60 (should be 120-140), iron 2 (should 65+).  The medical residents loved me because I don’t look anemic, and I should have been unconscious rather than jogging. Anemia is a symptom of my actual illness, which wasn’t diagnosed until late May 2012. I had tried to get the problem solved in 2006 and 2007, but walk-in-clinics (I didn’t have a GP) don’t seem to be equipped to handle that or think that blood pouring out of me wasn’t at all a serious problem. I didn’t even get a blood test or sent for a pelvic. I guess I’m just a hysterical woman who couldn’t possibly observe that her cycle changed. I should have persisted back then to get it fixed, but I can’t stand people who don’t listen to me, use my clinic visit as an excuse to scream at me because I don’t like hormonal birth control and therefore automatically assume I am idiot.  (I imagine the nurse who screamed at me dealt with a lot of young women who have no understanding of their body.  Unlike me, who researches everything.)  Though, my surgeon has mentioned that I am maybe a little too smart. (Happens when you read  a lot of your surgeon’s published research) :P I’m an oddity because I researched what was wrong with me so I could make an informed decision. I even watched the surgery, an extreme case, but it showed what I needed to know. I’m stunned that other people wouldn’t. It’s my body, why wouldn’t I have a narcissistic interest in what’s going on?

The anemia, scared me a wee bit, so I stopped pushing myself.  I would go for walks instead because I was frightened I’d pass out. Even though I received four iron IV infusions and brought all my levels up to normal and made me feel superhuman, there was still that fear.

Three weeks ago I started in the gym and I started to test how far I could go. I started very light, because I was still afraid I’d black out. Each time, pushing myself a little more. So far,  I can go for 55 minutes, and get 8.35km (5.19 miles) done on the elliptical. I cheered in my head with glee “I’m not blacking out!!” It’s a big relief to be able to do things and not blackout.

This is a highly abridged version of what I’ve been through. I’ve slowly got my  health in order and reclaimed my brain, since for a long time it wasn’t getting what it needed.

Morale of the simplified version story. Get yourself a good family doctor. They’ll save your life.

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I hear this line as “some days I can’t even dress myself” instead of  “some days I can’t even trust myself”  I’m torn between which is sadder.

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