Frustration

 How the blinkity blank (can I swear here, oh wait, the title, hahaha).  How the fuck...

How the fuck do I find a specific blog on here so I can comment on it?? It won't let me sign in with google and I cannot figure out how to sign in here and THEN find the blog I want to comment on. Am I stupid? Is it 2:30am syndrome? Then again, I have had this problem at other times, and they can't have all been late at night/early morning. 

I would like to comment on "Melissa Dog/Wolf Lover Martin's Reading and Ramblings" post called This Wretched Valley by Jenny Kiefer (hi Melissa if you ever see this), but I can't sign in via google, which is what the little blue square 🟦 offers. So here is the comment, but actually a question about the book: Does anything bad happen to the dog? I am totally fine with violence and brutality against humans, but I cannot deal with it against animals, especially domesticated animals, especially if they are a loved pet. Actually, I think it doesn't matter if they are a loved pet or not. There isn't much of a difference between wild and domesticated when it comes to abuse. Though, domesticated animals do depend on humans to take care of them and breaking that trust is another step up the horrible human being chain. I've read two books that have had serious violence against animals and both times I ended up a screaming crying mess. I can't deal with and I don't care to learn how. Animals are always innocent, even when violent towards humans (though it can be debated when it comes to the most intelligent of animals), humans have instigated it, usually by starting out violent themselves, the animal in question has only had bad experiences with humans, or the human in question unwittingly engaged in behaviour unacceptable to the animal. Body language is an obvious way an animal communicates, for example flattened ears and hissing in a cat. Other animals have different ways of letting you know to either back off or things are all good; all it takes is a bit of research to find out, because people have already figured it out for you. The one weird exception is dogs, people seem to have a wide range of opinions about what various postures can mean that aren't obvious, like their ruff raised, teeth showing, and growling. A wagging tail can mean various different things depending on the situation, so with strange dog, especially a stray, it's best to be cautious. Why am I babbling like this? I want to get the aforementioned scenes out of my head. I love my pets, pets of family and friends, seeing animals in animal parks that are for rehabilitation, learning, or conservation that are not zoos. For example, some animals that were rescued can't be released back into the wild for one reason or another, and are well looked after and sometimes part of educational presentations. Sea World and other facilities/parks like it should be banned and animals that can't be released moved to appropriate facilities. Most whales and dolphins can be released, if possible into the family they one they were part of before being stolen. 

I once went to the Tennessee aquarium and it was an amazing experience. They are all fish seemingly (hopefully) kept in the appropriate environments. I can't remember how many, but in one area they had only part I had a problem with was the sharks. The more we learn about them the more we should realize they should no more be enclosed than a mammal. Many of them travel thousands of miles in one year, though scientists still aren't sure how they know where to go or why they travel so far.

It seems I start on one thing and babble along until I've gone completely sideways to another subject. talked enough about whatever it is. Maybe one day I'll discover a real purpose for this or maybe I won't

. I'm supposed to be learning how to use that other website. I guess I will see if I get around to it. I don't know if my brain is up to complicated right now, or ever. Being exhausted all the time sucks. Of course, I did pay money, so I should probably attempt it?

 The video: http://www.ted.com/talks/lang/eng/aimee_mullins_the_opportunity_of_adversity.html

I feel the need to comment on this video for several reasons.  First of all, I hate stories about disabled heroes; disabled people doing things that "normal" people find extraordinary.  This woman makes good points about language and social theory, but I have a problem with the fact that she is clearly no longer "disabled" and barely impaired.  She is white, she has money, she is intelligent and conventionally beautiful.  She can work within society’s parameters without difficulty.  She speaks about adversity as something that we can take and adapt to and recreate.  This can only be done with resources, and resources cost money.  Just having a disability is extremely expensive, even if you live in a country like Canada (and I do, but there is always much more than just a wheelchair needed). Some people are not born into money, have access to the more expensive parts of health care, expensive adaptive technology, aren't lucky enough or again, rich enough, to receive incredible supports (emotional, psychological, mental, physical).  Some people don't look like "everyone else" and are looked at with fascination, scorn and patronization.  They aren't smart, athletic or beautiful.  Some people cannot function in society for a variety of reasons, often because society is designed around upper class white men (ask why the air conditioning in buildings is the temperature it is; the answer is men's suits). Employers do not want to accommodate the needs of anyone different, and if you were born disabled, or become disabled before you have a job/career with good insurance, then you have no insurance at all, to pay for medications, any type of therapy (physical or psychological), renovations to your home, adaptive technology like a wheelchair, a lift to get in and out of your home, up and down stairs, an accessible bathroom, "hospital" type bed, a lift to get in and out of bed, wheelchair, shower, bath, etc. There is no one size fits all adaptation anywhere. 

Everyone is a different age, size, shape, stronger or weaker. Every disability affects everyone differently and there are so many different disabilities. For example, the exact place on the spinal cord that is injured or cut is where paralysis begins. This can change the type of care they need drastically. The differences between a paraplegic and a quadriplegic are huge, and there are several gradients between the lowest "number" paraplegic and highest quadriplegic (the number is at which vertebrae the spinal cord was severed, determining where your paralysis begins).Different sphincter muscles can be paralyzed "open or closed", and a variety of other things cause differences with the exact same type of paralysis.

I have muscular dystrophy, which says almost nothing about my disease and little about my disability, it says I have a molecular problem that affects my muscles. That covers hundreds of different diseases, and mine has only recently been recognized as Muscular Dystrophy and by the MD Association, because of increased scientific knowledge about the type of glycogen storage disease I have. There used to be 3 types of this disease depending on what age you are when symptoms appear, but now it seems there might be only two. Unfortunately, I don't fit into either of those two categories. It seems I always have to be the "special" one. I was the first diagnosed with the juvenile onset glycogen storage disease type 2 in Canada. 

This woman feels strongly about helping children (not everyone is disabled as a child and has to start to get help as an adult) and changing perceptions, as well as definitions.  This is important, but it is not the ONLY thing.  Improving lives of those who don't fit into the mold of child or hero is important.  Providing equal access to health care, medications and adaptive technology that is optimized for each individual is extremely important.  Helping people go to school, work and live with a quality of life above the poverty line is extremely important.  

The social model of removing societal limitations (barriers to mobility, etc...) is important, but it is also important to look at how impairments influence people's lives.  I have a condition that causes progressive weakness and fatigue.  Either one of these impairments is devastating in itself.  Together, they rule my life.  They have decided how long I was able to go to school, how much I sleep, whether I can work or not (that is just about no work at all), where I can go (not friend's houses that's for sure).  In the winter snow and cold tell me when I can go out and where I can go.  Cold stiffens my muscles into uselessness.  Inactive and improperly functioning muscles make it difficult for me to live in temperatures others find quite adequate. I will never finish a university degree even though I am intelligent enough to do so.  I will never have a job and make my own money.  I will never enter the home of a friend or family to visit unless their house/apartment/condo has flat entry. (I am neither "useless" nor "mutilated", but my human potential is much much different than Ms. Mullins, directly referring to the TeDTalk video). The human ability to adapt is amazing.  It is amazing what a person can get used to and deal with in their life. 

Biology is not an adversity that you can overcome or turn into something positive. It just is.  I am disabled and there is nothing that can be done to my body to make it less unable to move, be less exhausted, or to need fewer adaptations. There is nothing that can be changed in or about society to change that fact either. No matter how much I open myself to it, or "dance with it" (whatever that means), I will grieve every new loss of function, every change in energy that means I must spend more time in bed.  I struggle with depression and anxiety.  There are struggles in this life that cannot be fixed by attitude, no matter how you look at them. Depression can be situational, chemical, or both. My will to survive may keep me from giving up, but it will not change my prognosis.  The only true disability is NOT a crushed spirit.  A crushed human spirit is a terrible thing, but has absolutely nothing to do with physical ability. One needs a psychiatrist and/or psychologist, the other needs doctors that deal with the physical body, and there are hundreds of types of those. I have about 4 right now and I used to have more. 

I cannot change my reality with my "spirit".  A human spirit cannot abolish poverty, create health care equal for all or create equal opportunities in work, school or lifestyle.  It is nice that her privilege  has allowed her to use her "human spirit" to overcome her disability, but her privilege helped her just as much of not more. Her privilege will not create a space and reality that allows everyone to surpass what biology and economics has created for them.

I agree that words are important.  I agree that being supportive and encouraging to disabled people is also important.  However, they are not everything.  They are certainly not the only thing.  Physical, financial and emotional support is important.  The big and inspiring ideas in this video do not inspire me.  I think they may inspire those who are not disabled. She does not inspire me and other disabled "heroes" do not inspire me.  What makes me want to keep going is the government wanting to support me with a quality of life income; programs that help me work from home; people that treat me like they would treat any of their other friends.  I am not extraordinary.  I don't feel that someone handed me a key to my human power.  I live, like anyone else lives, this life.

Should I?

 Question:

Should I actually try to learn Wordpress as a place to ramble about the life, the universe, and everything; or should I stay here? I have no idea what the real pros and cons are, except Wordpress has the highest rating as a place to do that as anywhere else, and I thought I'd take a shot at learning how to use it, because why not? The my brain kicked in and said, I will tell you why not. You are exhausted all the fucking time, you sleep more than the average bear, and do you think you really do write well enough or can possibly compete with all the other writers out there. It's also complicated, more than I thought it would be, on the other hand, you get a decent amount of control over how your page works and looks. Deciding right now will not happen, because, shockingly, I am tired. However, I did pay for a couple things to start, because I'm stupid like that, don't pay for it until you know you will use it, but how do I know I'll like it if.. etc. Another thing I need to learn; how not to ramble so much.

Vaccines and One Other Thing

I haven't posted in a long time, even though there is stuff I want to write about. Although, some of the stuff I want to write about I can't really make public for a variety of reasons. How's that for vague? Anyway, I just wrote this on Facebook and figured I'd share it here as well. The post is referring to this article: http://www.vaccinestoday.eu/vaccines/how-measles-can-change-a-life/


I'm sharing this article for two reasons. The first is the overt idea of herd immunity. Herd immunity occurs when everyone that can get vaccinated does, which then protects all those who cannot get vaccinated because of allergies or age. This is extremely important. The parents in the article say it best, "But what drives us crazy is the fact that all of this could have been avoided, had obligatory vaccination protected more children from getting infected by measles and that other dangerous “childhood” diseases." Their son could have lived and  been healthy. "If only" is a terrible thing to live with.

The other reason is secondary. When the parents were told that their son would not live, there was no cure and no hope, they turned to quackery. Everyone can understand this and nobody can blame them.

In their own words, "We were numb, desperate... the doctors were telling us that we would lose our child – no matter what. We spent nights on the internet seeking for rescue, for some sort of treatment that would stop us from going down the path of the inevitable. We established contacts with medical scientists in India, Turkey and the US. We imported homeopathic medicine from India; we applied ß-interferon, vitamins, fish oil, minerals..."

This is something that makes me so angry I want to cry. There are people out there who will try to sell you anything, and say it will cure everything. I know this, because my parents went through this. They were desperate and spent hundreds of dollars on remedies that did nothing, because they desperately wanted to cure their little girl. Guess what? NONE OF IT DID ANYTHING. It's all bullshit.

A lot of people say, well it can't hurt to try. That is also bullshit. It deprives people of money they often don't have (and think about how that money could have been spent to make the life of a loved one better in a meaningful way). The money that people spend in their desperation gives the illusion of legitimacy to the remedy and the person selling it (if other people spent money on it, there must be something to it), and it gives the person selling this crap the resources to continue selling it. Worst of all, it gives false hope. There is nothing wrong with hope, but false hope is extremely hurtful. If someone tells you that they can save your loved one, how would you feel? Elated, joyful, thankful, grateful? How do you feel when you realize that not only did the treatment not work, but it had no chance of working, and that someone decided that they wanted to make money from your desperate bid to save the  life of someone you love by selling you nothing? I know how I feel about all those people who took my parent's money. Angry, extremely angry. How dare they?! What kind of person does that? What kind of person tells a parent that they can save their child, no problem, just buy this bottle of pills or vial of fluid? I'd like to say knowing full well that it won't, but I know some of these people, somehow, honestly think that they can help, even with the flimsiest of evidence. It's wrong, and I wish there were stricter laws about what you can claim something will do for someone's health, because consumer discernment cannot be counted on when the life of a loved one is a stake. The false hope that these people sell just adds insult to injury.

I feel the need to point out that I am not against naturopathy necessarily. There are a lot of "natural" remedies that work. I put natural in quotes because everything on earth is by definition natural. Anyway, there are proven medicines outside of the medical system (I'm not sure what to call it, western traditional medicine?). Notice I say proven. There must be evidence from science and this most often comes from legitimate peer reviewed scientific research. Of course, there isn't always that kind of research out there for everything, so sometimes you do what works for you. However, steering away from fads and what the current incarnation of Dr. Oz recommends is a good idea, because usually that is bullshit too. If I'm not sure about something I consider the source, and ask someone more knowledgeable and reputable than myself.

There is so much information out there now, it's hard to know what's real and what isn't. If it's too good to be true it most likely is not true. Chinese medicine cannot cure your cancer, etc.

Sorry for the rant, but this is something I feel very strongly about. People still offer cures and treatments for me that are outside the scope of what could possibly improve my condition and frankly, it pisses me off.

Casual Violence

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.

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.

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