Holding Health Hostage

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I’m a diabetic. Just like my father, my mother, my sister, my brother and even our family cat before she passed away. Diabetes doesn’t just run in my family, it holds marathons. So I’ve become something of an expert on the subject.

Getting diabetes was inevitable and not something I wanted. It’s a death sentence and a slow one at that. Yes, it’s manageable but not curable. Insulin is not a cure, it’s a means to help my body do what it can no longer do. However, living with diabetes is something that becomes background noise after a while and, after a while, you learn to accept everything that comes with it like the anxiety and depression. The struggle to merely maintain your weight. Losing weight is a dream of wisp-like faeries and morning stars to wish upon.

I’m also on Income Support. What was once called welfare. I’m there because of a variety of factors which include depression, anxiety, Nonverbal Learning Disorder and other crap. Diabetes and depression and anxiety are old bed buddies. When the sugars start sliding up and down, depression and anxiety are there to make sure the ride is memorable. Freddy Kreuger memorable.

But I live with it and I work with my doctor to keep the worst at bay. It’s here where I depend on my government to put in their own effort. As someone who lives on Income Support, I need my diabetic supplies covered. This is not an option. I can’t play guess which meds we’ll take today. Diabetes is a mean bitch if she doesn’t get her fix.

So about six months ago I fought with Alberta Health to cover a drug called Victoza. Originally I thought it would help me with weight loss as it’s been shown to have a great effect on it. That didn’t happen due to a slip and fall I took in January which prevented me from exercising for a while.

However, Victoza did do something.

I need to explain something here. There is a measurement that all diabetics are aware of and that’s their A1c. This is a test that shows what blood sugars have been doing over an average of the last three months. I’m pretty sure there’s a bit of Lothlorien magic going on here as well but that’s another story.

For someone without diabetes, their A1c should be in the range of 4 – 5.6. For someone with diabetes, the goal is to keep it below 6. Back in November, my A1c was 8.3. By the time June rolled around and I’d been on Victoza for only six months, my A1c dropped to 6.3.

That’s a damn near miracle.

However, this is where things get sticky. Apparently there’s a federal agency in negotiations with Novo Nordisk Canada over the price of Victoza. So, rather than cover the drug, there is a ban on any coverage at all. Simply put, they don’t want to cover it because that would weaken their negotiation strength.

When I approached Minister Sarah Hoffman’s office, I was told that they not only would refuse to cover it, they wouldn’t even try to get involved in these price negotiations because it wasn’t their job.

So let’s put this into perspective.

My health is being held hostage by a drug company, a federal agency and a provincial ministry because they all want to have the upper hand in negotiations over fucking pennies.

Meanwhile, over here I’m struggling to lose weight, maintain my health, watch my sanity and keep all these balls in the air while trying to start a business and placate Income Support.

And people wonder why I am fighting so damn hard for the basic income program.

So I’ve come to a point where I just want to curl up in a ball and say, “I give up” but I’m too damn stubborn for that. This isn’t the first windmill I’ve tilted at and it won’t be the last. This is my life and health I’m fighting for.

Just call me Don Quixote

 

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I Am Fat

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Dear Men and Women:

I am fat. I know this. I am comfortable with my body. I do not need nor want your approval. I would like, however, to clear up a few myths.

Fat does not lower my IQ. I am an intelligent, thoughtful, creative woman. I am able to talk to you about Chaucer, Shakespeare, Zen Buddhism, the occult, philosophy and the Bible. I create entire worlds in my head and bring characters to life in such a way that makes you want to join them in their travels and travails. I am not stupid.

Fat does not make me lazy. Sunday mornings do that. I work hard and put my full effort into everything I do. Perhaps I can’t do the splits anymore or hike the five miles down the River Valley, but I’ll do my best. You can’t be a lazy writer. They don’t exist.

Fat does not make me ugly or lessen my sex appeal. I am a beautiful, sexy woman. If you feel disgust or shame when you look at me, keep it to yourself. I don’t need to hear it. I don’t expect everyone to be sexually attracted to me but don’t try to make me feel like I should be asexual. I am a very sexual, sensual person and enjoy the company of many men and women who enjoy my body. Accept that.

Fat does not make me desperate for your company. Don’t act like you’re doing me a favour by being seen with me. If you are ashamed to be seen with me, that’s your problem, not mine. There are far too many people out there who do want to be with me because I’m beautiful and funny and intelligent.

Fat does not mean I’m unhealthy. My health is an issue between me and my doctor. I’m a 50 year old women with the common health concerns any 50 year old woman faces. My fat does not give you licence to dig into my medical history so you can use it as a means to justify your discrimination and bullying of me. This is not your body so don’t you worry about how well it’s functioning and don’t give me that crap about how concerned you are about my health. That’s just bullshit and we both know it.

Fat does not determine my choices. No, you can’t lecture me on what I should wear or eat or where I should go or how I should get there. My fat does not give you any right to determine what my choices are or should be.

If you are uncomfortable with my body then that’s your problem. My body, my rules. If you have a problem with the way I look then look away. Keep your tongue behind your teeth on any opinions you have on my life.

I am fat. I am not going to crawl into a hole because you can’t accept that I’m beautiful. I will wear dresses and spandex and cotton and bikinis and I will dance and play and run and I will be happy. Either accept that or get out of my way.

Suicide & NLD

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again the issue of suicide has popped up again on the media radar. Both Kate Spade and Anthony Bourdain have managed to bring it to everyone’s plate and now we get to watch as social media spins out its version of “thoughts and prayers” in the form of “reach out.” Don’t get me wrong, it’s good advice. Completely useless to someone who is currently flirting with killing themselves but good advice. What happens, though when you add Nonverbal Learning Disorder to the mix? Are we NLD Superheroes more susceptible to suicide as someone once suggested to me? To be honest, I don’t know. All I can talk about is my own experience with suicide and suicidal ideation.

If I’m going to be completely transparent here, and I must for the sake of this conversation, I have to admit that I’ve attempted suicide. Suicide by fate, I call it. As a teen who survived abuse and found herself unwanted by her family (my sister was my abuser), I felt tired. Tired of fighting to survive. Tired of trying to reach out to my family again and again and being rejected. Tired of trying to figure out how to live in this confusing world. I was tired down to my soul and I just wanted to rest.

I was nothing if not creative so I decided to let fate decide if I should live or die. At this time I was involved in an evangelical Christian group and fate was another word for God. If God wanted me to live, He’d show me. So, I took to jaywalking.

Here’s what would happen. I’d need to get from one side of the road to another. Didn’t matter what road it was, a residential street or busy thoroughfare, I’d jaywalk. However, I never bothered to check for traffic. I don’t know if any gods had their hand in my survival but even though I came close many times, I was never hit by a car.

My life at that time was pure chaos. Evangelicals pretended to care about my soul while  they dictated how I should live while my family showed no interest in where I was or who I was with. At the time my Nonverbal Learning Disorder was undiagnosed and I may have had a celestial being or two looking out for me because I never wound up on the side of a milk carton, either. Despite many opportunities to end up there.

So what does any of this have to do with Nonverbal Learning Disorder?

As I stated earlier, post-celebrity suicide is when everyone on social media advises those with mental illness to “reach out.” If you have NLD, that’s a whole new level of WTF.

Those of us who have to live with NLD are the proverbial odd shaped pegs trying to fit in a square peg world. We pretzel ourselves into being something we’re not just so we can be seen as high functioning. This places an unbelievable amount of pressure on us and only makes the existing anxiety and depression that are NLD’s sidekicks that much harder to control.

Having NLD means functioning in a different vibration from the rest of the world. The resulting clash that comes when our functioning meets the tidal wave of “normal behaviour” ends up in anxiety and depression. Does this automatically put NLD people at risk of suicide? I don’t know. I have no answers.

What I do know is the advice to “just reach out” is useless. As someone with NLD there’s a few questions I have about that. Reach out to who? Tell them what? When do I reach out? Is there a guidebook I can consult? Communication is one of the problems people with NLD have. Are the people we’re reaching out to aware of that? If so, do they know how to understand us?

Suicide is a problem and feeling isolated is a part of it. So instead of saying “reach out,” I’ll give some different advice. Go out and learn what your options are. NLD people are great at gathering information. So go out and use that to your advantage. Learn how to access the medical community. Learn how to build a network of support and coping mechanisms.

I don’t have any answers when it comes to suicide and NLD. All I know is what I’ve experienced. If you’re feeling suicidal, please know you’re not alone.

Where Is Melania?

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Before I begin, let me be clear about something; I loathe the Tyrant in Office, Molesty the Clown otherwise known as Donald Trump. My feelings for him go back to the 80s when he stole those kids from the only responsible parent they knew, Ivana. Okay, saying Ivana was responsible is something but she was a damn sight better than Donald and even as a teen I knew it. So before I start, let me say I can’t stand him.

Nor am I a big fan of Melania. At best I find her to be the kind of twit I would pull passive-aggressive shit on at parties just to emphasize her twithood. I’m not a nice person sometimes and I’m okay with that. Especially when it comes to twits. However, I find I need to speak out about recent events.

When Melania first appeared next to Captain Orange after he became president, I found myself watching her closely. Two things caught my attention. First, there is a muscle in her neck that seems to bulge whenever she’s around him. I know that muscle. It pops out on me whenever I’m around someone I can’t stand but I can’t say anything to make them go away. Second, no matter what she’s doing; smiling, laughing, talking, standing; her eyes are flat. Believe me, I know that look.

When I first started watching her, I began saying I believed she was being abused. People laughed. The list of things they said was alarming.

  • She was in the marriage for the money.
  • She knew what she was doing.
  • She could leave.
  • She deserved what she got.
  • No sympathy because she’s wealthy.
  • Donald wouldn’t abuse her, he’s rich.
  • She doesn’t look abused.
  • She doesn’t act abused.

The list goes on. What it all boiled down to was because of her new position as First Lady, she couldn’t be abused but if she was, she deserved it. There were no signs of abuse so she couldn’t be in an abusive situation. Lastly, each and every person said she could leave at any time but didn’t because of the money.

The look in her eyes, though, told me something different. This was the look of a woman being held hostage by an abusive husband. I knew that look and every abuse survivor has seen it in the mirror far too many times. It doesn’t matter if the abuse is from a spouse, a parent, a coach or a sibling. It’s the look that has given up and believes there is no way out.

Yet people said she could leave if she really wanted to because she was rich. Really? If she leaves him, what happens to her son? I don’t know of a single mother who wouldn’t go through hell to ensure their child’s well being. Ivana already proved that Donald was ruthless when it came to the children. Why would Melania believe her situation was different? It took me 48  years to be able to say the words, “I was abused.” I don’t think it would be any easier for Melania whose situation is far more precarious than mine.

Then, suddenly, she goes in for a mysterious “kidney” operation. At first I joined in the jokes. It was the nervous laughter of someone who knows things have gone horribly wrong and aren’t likely to get better.

Now…. nothing….

No one has seen or heard from Melania since her “operation” except for one very suspicious tweet that was an almost clone of Donald’s tweets. Pointing to empty windows. Where is Melania?

It doesn’t matter. I’m not the only one who has wondered about her situation and whispered about possible abuse. Now those whispers are growing louder. What alarms me, though, is the reaction to it. Everyone seems to think this is a great joke. That this suspicious event is something to have a laugh over.

Here’s my question; if Melania were your neighbor or coworker, would you still be laughing? If your child’s teacher mysteriously went for an operation and then disappeared, would you be joking about it?

I don’t care what you think about any of the Trumps. I don’t care if you’re convinced they can turn water into wine or if they’re the biggest steaming piles of shit on the heap. A woman is missing. Can we talk about that now?

High Functioning Garbage

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Recent events have me ranting on about the label “high functioning” to the point where I’m almost frothing at the mouth. I’ve had this label all my adult life and I’d like to shove it up the mental health industry’s collective ass. Where it was once meant as nothing more than a measuring stick to those who had been trained in understanding such things (those people with PhDs behind their names), it’s become nothing more than a banner for the media and Hollywood to wave around while they pretend they know what they’re doing. In truth, this label does more damage than help and there is little or no understanding that comes with it.

Originally, the term “high functioning” meant someone who was able to function within society with minimal difficulties. That doesn’t sound too bad, does it? The insidiousness of it is disgusting and we should start demanding it be dumped from our collective lexicon. Here’s what happens; the mental health professionals, psychiatrists and psychologists and such, get together and determine what is normal functioning in society. They decide on this narrow band of behaviour that includes employment, socializing, learning, etc. Now, if you behave according to those parameters, then you’re high functioning. There’s a few problems with this.

No one really knows what “normal” is. Is a family with a single mom “normal”? Then what about a family with two dads? Does that become abnormal? Or what about a family with a mother and father? Is that supernormal or ultranormal? What is the goal we’re reaching for here? Truth is, no one really has a lock on this. Psychiatrists and psychologists have an idea of what normal is but it’s a narrow bandwidth that isn’t able to adapt to a society that is in a constant state of flux. What was normal in the 1950s is no longer normal today and that’s all right. Society changes as humans adapt to their environment and needs. It’s what evolution built into us. So now we have a bandwidth that defines normal functioning in society that can’t adapt to change.

Right.

When I was about 8 years old, there was a boy living in our complex who had autism. He liked to sit at the door and watch the cars go by. He was especially enamored with trucks and would excitedly scream when they went by. Some of the truck drivers got used to him sitting there and would honk as they went by. This would send him into fits of excited rocking and arm waving while he giggled happily. We kids loved playing with him. He was always up for a game of tag, even if he didn’t really understand the rules and was always good natured and happy. We knew that we weren’t to touch him, he didn’t like that, so we’d wave at his face and that counted as a “tag”. The adults, though, tried to discourage us. They were concerned about us playing with the “retard”. He didn’t know his own strength, they said, and he could hurt us. Didn’t matter. We played with him and he played with us. That boy taught me more about acceptance and understanding than anyone else in my life. Yet, he was considered “low functioning”. To us kids, he was just a playmate. We didn’t care about his functioning.

I have Nonverbal Learning Disorder. If autism and ADHD had a love child, NLD would be it. Very little is known about it and very little research is done on it. Yet doctors classify me as being “high functioning” as I can navigate society. So what makes me different from that boy? A Bachelor of Arts degree? An ability to weave words into a magical world? My determination? Why am I any better than that boy who was able to teach me so much about compassion and happiness? Yet, if you look in the media, there is a clear difference. Watch any episode of “Criminal Minds” to see the difference between someone with a mental illness who is “high functioning” and someone who isn’t.

The difference? I learned to hide who I am and that boy didn’t.

That’s it. I’m able to navigate society because I don’t make the normies uncomfortable. I don’t make them cringe inwardly when they talk to me. They don’t have to suppress any feelings of pity when I’m around them. I can look, act and talk just like them so I’m acceptable. If they knew the cost I paid to be able to do this, they wouldn’t be so comfortable. I would give them more nightmares than that boy ever could.

I learned how to act and talk like the normies at the hand of my abuser. I was psychologically and emotionally abused all my life and learned fast to please my abuser. One of the things I learned was how to not talk about my “stuff”. To keep the anxiety fears buried deep even as I smiled and shook hands. To never cringe when someone touched me. In all things I had to make sure my abuser was happy and nothing was sure to bring down her wrath like talking about stuff best kept to myself or in the family. To this day it’s nearly impossible for me to talk about what goes on in my head because I’m afraid of being punished.

Until people start accepting that normal is a spectrum and not a bandwidth, we will get nowhere with mental health issues. We won’t ever accept men talking about depression or women talking about eating disorders. We won’t be able to see people in all their quirks and strengths and weaknesses. We will always demand they behave within accepted norms. Until the term “high functioning” is banished, we will get nowhere.

A Concerned Citizen

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Someone was murdered last night,
I didn’t know who she was.
A bank was robbed,
It wasn’t mine.
The Russians and Americans aren’t talking,
I’m Canadian, though.
Terrorists hijacked a 747,
I don’t like to fly, however.
The workers are on strike,
But I’m unemployed.
A drunk driver killed a little boy,
He wasn’t my son.

As I read the paper
Someone is smoking nearby.
So I stand up
And demand my rights as a non-smoker.
Hell, someone’s got to do something.
After all,
It’s for the good of mankind.

Originally written: June/87

The Loss of Beauty

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It’s so easy to lose your beauty. I’m not talking about that which time steals. I mean the part deep inside that knows magick is real and stares in wonder at the bumblebee landing on the dandelion.

We have it as children but it fades with each “grow up” we hear or every bit of ugliness we see. We become adults who pretend to see beauty but it’s a faded replica of what we knew as children.

Why is it better to know that Santa’s not real and the Tooth Fairy is really your parents? When did believing in fantastical reality become a sin? We laugh at the dad playing tea party with his daughter or the mom throwing a baseball with her son. When did bouquets of dandelions fall out of fashion?

A short time ago I decided to try to find my beauty. Like Frodo, I’m on a wondrous adventure. Sometimes my journey is fill with amazing friends while other times I’m achingly alone. I’m off to conquer Mordor, the burden of a gold ring known as Reason weighs down my steps. I hear “you can’t” or “that’s not reasonable” or “be mature” like arrows tipped with dots of poison.

Each day I scan the skies for the dragons I know are there. I search the honeysuckle tree for my fae friends. The dragonfly whispers its message to me.

“Beauty is there,” he says. “Just look and see.”

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