I just saw a cartoon someone linked on facebook that went like this (bear with me, I have a point):
A man carries a beat up woman into a hospital.
Doctor: Holy shit! What happened?!
Man: She played fifa
Doctor: Did she lose?
Man: Yes.
Doctor: Then, I don't understand.
Man: It was my account!!
So, obviously, this man beat the shit out of this woman, because she lost a game on his account. It's supposed to be funny. I looked at the comments and a woman posted "Reported". The comments below hers are typical misogynistic, take a joke bitch, type stuff. I liked her "reported" comment and then thought, you know, I am going to report this too. A cartoon that makes it look like violence against women is okay is totally not cool and I am going to stand up too.
Now that I've reported it, and posted in support of the other person who did, why do I feel weird? I feel like maybe, I might get in trouble, or that I am being too sensitive or lack a sense of humor. I know that's not really true, but, I really feel like I should duck and cover or something.
Monday, 5 August 2013
Friday, 14 June 2013
Psychology Today - Personal Version
I am taking a class on a website called Coursera. It's free and the classes are put together by professors from some pretty impressive universities. The class I'm taking right now is Introduction to Psychology. A recent lecture talked about the "locus of control". It's basically a term that talks about how much you feel you can control the world around you. If you have an external locus of control, you feel a lot like the world is controlling you and you don't have much ability to shape the world around you. If you have an internal locus of control you feel that you have a lot of influence over your life and the world around you. Many people with an internal view are very positive, tend to be leaders; whereas people who have a strong external view tend to be depressed.
I wrote a post on the class forum about locus of control and my feelings about it in relation to my life. It's much more personal than technical so I thought I'd share it here as well.
Locus of control is a weird balance for me. I am disabled. I have a genetic, progressive muscle condition, and over my life I will get weaker and more fatigued. I was diagnosed at 14, and told I would die in my early twenties (I'm now 37). There is very little in the way of treatment and at my stage of the disease what became available did not help. I stopped walking in 1999. Now I have very little use of my body, except my hands and my brain.
Relating that to locus of control. I have zero control over my condition,there is no cure, it will always get worse. I often have little control over what kind of medical technologies I can access. For the most part, I have to accept what the government will fund or what a "charity" will reasonably decide to fund. There is incredibly technology out there, and most of it, especially the newer stuff, I will never have access to. Money talks and anything medical needs a loud voice. Another thing I have no control over is how tired I am. It is variable from day to day, some better than others, but I know that I need to be in bed about 13 to 14 hours of the day and sleep somewhere between 10 and 12 of those hours. I had to give up the dream I had since a child of going to university and getting a PhD. I don't have the energy for a job. I am on social assistance, which means I'm poor. Leaving the house for several hours is guaranteed to tire me out enough that I need to plan an uneventful day the day after. I can push it, but I will pay. I don't know if anyone has seen the website about chronic conditions that has the "spoon theory", but it's worth a look. http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ I need full time caregivers, I can't wash or dress myself. I need help to eat. I can type, crochet... so use my hands in a very prescribed way. All of these things, and more, I have zero control over. My own body has betrayed me and trapped me. This is all external and some days I feel like all these things are done TO me. I often feel like I have very little to do with what happens to me.
Now, what can I control? First, I can control my attitude. I live daily with massive amount of frustration, anger towards myself, anger towards the system... I realized, though that I could live my life as a miserable bitch or I could try to do the best with what I have, and the fact that what I have will always change (physically, always for the worse). People don't want to be around a miserable person, I don't want to feel miserable all the time, even though I suffer from depression and anxiety. I chose that I would continue to use my brain as much as possible. I read voraciously, non-fiction and fiction. I can't go to university, so I will try to be self-educated. I wanted to produce something useful, to do something so people would remember me, so I re-learned to crochet. I can use my hands enough for that, so I always have a project on the go and give most of what I make as gifts (though I have had a few commissions). It's very satisfying to produce a useful product. This is my internal locus. These are the things I CAN make choices about.
I have also been lucky. I have parents that decided that putting me in a home would be the death of me mentally and physically. They were right, I have stayed in one for six months. It was hell. I've been lucky over the last 6 years. I thought I would be dead by now, but instead I have met the love of my life, made friends outside of online chat rooms and socialize with people that care about me. In the last 3 years, I was able to move away from my parents and be with my partner. I think this upturn is in part my will to keep trying and luck in finding the right people. I think all these external things, things I often feel kind of fell into my lap, are things I couldn't control.
So, locus of control. I know they affect each other, and sometimes they intertwine. (Luck at meeting someone who is willing to be with someone with a severe disability, but my intelligence and personality helped us have a loving relationship). There are a huge number of things I have no control over and will never have control over. This has been imposed and is not fixable. However, I also have chosen to make the most of the things I CAN control. I will continue to try to make the best of what I have. I will continue to try. It is extremely hard everyday. If you watched the videos with Phillip Zimbardo about evil and heroes and how people can be either, but they are usually ordinary people; that's how I feel about myself. I am an ordinary person and I'm not looking for sympathy here. I just wanted to share my thoughts on how locus of control, for me, often feels like a strange thing that I have to struggle with quite a bit.
I wrote a post on the class forum about locus of control and my feelings about it in relation to my life. It's much more personal than technical so I thought I'd share it here as well.
Locus of control is a weird balance for me. I am disabled. I have a genetic, progressive muscle condition, and over my life I will get weaker and more fatigued. I was diagnosed at 14, and told I would die in my early twenties (I'm now 37). There is very little in the way of treatment and at my stage of the disease what became available did not help. I stopped walking in 1999. Now I have very little use of my body, except my hands and my brain.
Relating that to locus of control. I have zero control over my condition,there is no cure, it will always get worse. I often have little control over what kind of medical technologies I can access. For the most part, I have to accept what the government will fund or what a "charity" will reasonably decide to fund. There is incredibly technology out there, and most of it, especially the newer stuff, I will never have access to. Money talks and anything medical needs a loud voice. Another thing I have no control over is how tired I am. It is variable from day to day, some better than others, but I know that I need to be in bed about 13 to 14 hours of the day and sleep somewhere between 10 and 12 of those hours. I had to give up the dream I had since a child of going to university and getting a PhD. I don't have the energy for a job. I am on social assistance, which means I'm poor. Leaving the house for several hours is guaranteed to tire me out enough that I need to plan an uneventful day the day after. I can push it, but I will pay. I don't know if anyone has seen the website about chronic conditions that has the "spoon theory", but it's worth a look. http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ I need full time caregivers, I can't wash or dress myself. I need help to eat. I can type, crochet... so use my hands in a very prescribed way. All of these things, and more, I have zero control over. My own body has betrayed me and trapped me. This is all external and some days I feel like all these things are done TO me. I often feel like I have very little to do with what happens to me.
Now, what can I control? First, I can control my attitude. I live daily with massive amount of frustration, anger towards myself, anger towards the system... I realized, though that I could live my life as a miserable bitch or I could try to do the best with what I have, and the fact that what I have will always change (physically, always for the worse). People don't want to be around a miserable person, I don't want to feel miserable all the time, even though I suffer from depression and anxiety. I chose that I would continue to use my brain as much as possible. I read voraciously, non-fiction and fiction. I can't go to university, so I will try to be self-educated. I wanted to produce something useful, to do something so people would remember me, so I re-learned to crochet. I can use my hands enough for that, so I always have a project on the go and give most of what I make as gifts (though I have had a few commissions). It's very satisfying to produce a useful product. This is my internal locus. These are the things I CAN make choices about.
I have also been lucky. I have parents that decided that putting me in a home would be the death of me mentally and physically. They were right, I have stayed in one for six months. It was hell. I've been lucky over the last 6 years. I thought I would be dead by now, but instead I have met the love of my life, made friends outside of online chat rooms and socialize with people that care about me. In the last 3 years, I was able to move away from my parents and be with my partner. I think this upturn is in part my will to keep trying and luck in finding the right people. I think all these external things, things I often feel kind of fell into my lap, are things I couldn't control.
So, locus of control. I know they affect each other, and sometimes they intertwine. (Luck at meeting someone who is willing to be with someone with a severe disability, but my intelligence and personality helped us have a loving relationship). There are a huge number of things I have no control over and will never have control over. This has been imposed and is not fixable. However, I also have chosen to make the most of the things I CAN control. I will continue to try to make the best of what I have. I will continue to try. It is extremely hard everyday. If you watched the videos with Phillip Zimbardo about evil and heroes and how people can be either, but they are usually ordinary people; that's how I feel about myself. I am an ordinary person and I'm not looking for sympathy here. I just wanted to share my thoughts on how locus of control, for me, often feels like a strange thing that I have to struggle with quite a bit.
Saturday, 25 May 2013
Me
“But still and forever she remains defective and defeated. Not all the spirit and ingenuity in the world, not all the substitutions or compensations..., can alter in the least her continuing and absolute loss...”
- The Man Who Mistook His Wife For A Hat
By Oliver Sacks
- The Man Who Mistook His Wife For A Hat
By Oliver Sacks
Friday, 17 May 2013
Eating, Swallowing
My swallowing muscles and chewing muscles have definitely deteriorated noticeably in the last 4 years or so. The first time I got something stuck in my esophagus, it blocked all other swallowing so I had to suction out saliva that built up very quickly. I went to the hospital to get it out. That happened several more times, that I went to the hospital to get something removed. It's a ridiculous ordeal, because the doctors always want to try things that we've already tried on previous visits that didn't work. The treatments that did work were putting a large tube down my throat and either pushing the food down into my stomach, suctioning it out or both. Twice,out of approximately four visits, they used a large tube connected to a camera to get the food out. The first time was without anesthetic and it literally felt like torture. The second time they used twilight sleep, so I was not conscious and it was a much better experience. This way they also confirmed that I didn't have other problems, besides weakened muscles. The first time, the doctor said, "Well, we ruled out cancer." I thought, "Holy fuck, I didn't even know cancer was an option to think about!"
Since then I've learned how to get things out of my throat myself with my suction machine. I just put a suction catheter down through my mouth and keep at it until everything comes out and I can swallow again. It can take 30 mins to an hour to get it all, but it's better than 5 hours in the emergency room.
I'm also more careful about taking smaller bites and concentrating on chewing my food, so that I'm not careless about swallowing food that isn't chewed enough. I avoid steak, because I find it harder to chew and it takes much more effort to chew properly. I also avoid pizza that doesn't have a thin crust and don't eat the end crust part at all. Other things I am extra careful with are shrimp, hot dogs, and any kind of meat that isn't extremely tender. I have to be careful with anything that might get stuck that wouldn't resolve itself, like meat and cheese. Usually bread, crackers, and things like that can be broken down by saliva and if they don't block completely I just wait until it is ready to go down. I also have trouble with large pills, and try to get liquid medications if possible, so I can put them through the stomach tube.
Friday, 10 May 2013
It's Fucking Hard
I wrote this in response to a post that a woman made on a forum I belong to. The forum is a group of women who have Pompe (glycogen storage disease type 2), and we share information, offer support, and generally talk about our lives. The woman I responded to was scared of the amount of muscle damage that showed up in a recent medical test, and was worried she might lose the ability to walk. I wanted to share it here, because it contains a lot of my own fears and feelings about the disease.
I think all muscle damage is scary. I don't think I am speaking for myself saying that we all want to retain as much function as possible for as long as possible. I think that part of the reason this forum exists is to get each other through the fact that, muscle damage and loss of function is inevitable and frightening.
I go through a grieving process every time I have to give something up, whether it was walking, or going to university, or a hundred other different things. It's so hard.
Some days I'm sure that the progression has to stop, because it's already taken so much away; how could it possibly take more? Some days I think that if I lose another function or some specific function that I won't' be able to live with it and I think, "how can I go on?" But then it does happen, I lose it, and I do go on, and it's hard as hell.
I use the support of my family, friends, and health professionals to get through it. Some days it feels like nobody understands, and how could they possibly understand what it's like to feel your body slowly betraying you, or being so tired you can barely think. Honestly, a lot of times they can't, and that is another good reason this forum exists, because the people here can understand. We can be scared together, we can grieve together, and we can go on.
I think all muscle damage is scary. I don't think I am speaking for myself saying that we all want to retain as much function as possible for as long as possible. I think that part of the reason this forum exists is to get each other through the fact that, muscle damage and loss of function is inevitable and frightening.
I go through a grieving process every time I have to give something up, whether it was walking, or going to university, or a hundred other different things. It's so hard.
Some days I'm sure that the progression has to stop, because it's already taken so much away; how could it possibly take more? Some days I think that if I lose another function or some specific function that I won't' be able to live with it and I think, "how can I go on?" But then it does happen, I lose it, and I do go on, and it's hard as hell.
I use the support of my family, friends, and health professionals to get through it. Some days it feels like nobody understands, and how could they possibly understand what it's like to feel your body slowly betraying you, or being so tired you can barely think. Honestly, a lot of times they can't, and that is another good reason this forum exists, because the people here can understand. We can be scared together, we can grieve together, and we can go on.
Thursday, 11 April 2013
The Facts of Life
I've been watching the Facts of Life on netflix and I'm on about the third season. I loved this show as a kid, but I've noticed something as an adult. First of all, all of the main characters are women, and that is amazing. That is pretty unusual in itself, and considering that the first season aired in 1979. The show also talks about social issues. They've covered alcohol, drugs, eating disorders, rape, race, and disability; to name only a few. It's still a comedy, and there is only so much depth you can get in a half hour, but it's not all about boys and sex. This show passes the Beckdale test. The characters are stereotypical, and some of the answers to issues are pretty dated, but I think those are minor criticisms. If you get the chance, give it a watch.
* Here is how the test works: watch a movie, any movie, or even a particular episode of a television series, and then see if it fits the following criteria:
1) There are at least two female characters that are credited with actual names so it does not count if they are called “female officer 1” or “girl at diner”.
2) Any two named female characters must then at some point in the film have a conversation with each other.
3) This conversation must last at least 45 seconds…
4) …and it must be on any topic other than boys, men, or males in general.
* Here is how the test works: watch a movie, any movie, or even a particular episode of a television series, and then see if it fits the following criteria:
1) There are at least two female characters that are credited with actual names so it does not count if they are called “female officer 1” or “girl at diner”.
2) Any two named female characters must then at some point in the film have a conversation with each other.
3) This conversation must last at least 45 seconds…
4) …and it must be on any topic other than boys, men, or males in general.
Monday, 25 March 2013
I miss...
I miss:
Walking
Showers alone
Standing up
Washing my own face & body
Stretching
Being able to go inside the dwellings of family & friends
My family visiting me without pain on their faces
Putting on my own clothes & makeup
Sleeping in the same bed as my lover
Initiating affection & support without having to ask the person to help me hug them
Cooking , cleaning laundry, dishes
Being alone
Privacy
The ability to go outside and sit in the yard, go for a walk, shopping, eat out, leave the house without planning
Spontaneity
Being able to move around comfortably in a small space
Stairs - especially because the lift I use scares the shit out of me. I don't like heights & I do have nightmares about it plummeting to the bottom
Not being depressed.
Rarely taking pills
Being naked for no particular reason
Wearing a robe - I used to have a nice silk one
Organizing my own crap
The days when I could think of this disease as a condition & the effects wouldn't be real until far in the future
Not worrying about how close I am following the special diet
Being unafraid of carbohydrates. I feel like every gram I eat is going to help kill my muscles faster
Eating carbs without feeling like a bad person
School - I adored university & will forever regret I did not even get a degree when I planned to get a PhD
Scratching itchy spots
Playing with my pets & being able to make them behave
Being warm in normal temperatures
Gardening
Sitting on the couch
Sitting without pain
Traveling
Dancing
People not staring at me
Having a job
Having energy
Sleeping less than 10 to 12 hours. Also mornings.
Being able to reach the floor or a spot more than a few inches in front of me
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