It Never Happened – A True Story of Sibling Abuse (Part 1)

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I am a survivor and victim.

Yes, I am both those things and what follows is the hardest thing I’ve ever written in my life. Even now there’s a fear that what I’m doing is wrong and that I’ll get punished for it. That never really goes away, you know. The sense that my abuser is watching and disapproves is always there, always in the background. I always feel a sense of impending punishment.

I still have problems speaking about it. I hear the same old justifications in my head; at least you weren’t hit (I was) or at least they weren’t addicts or there were others who had it worse than you. Yet another part of me wants to speak out. The writer in me needs to tell the story.

I was born the youngest of 6 and it’s here that the stage was set for my abuse. My mother lost her oldest two boys to her father’s cruelty and laziness and a system that was stacked against the poor. She met my father and three months later she was pregnant with my sister. A scandal at the time and one of the first secrets I was taught to keep. It was the first of many.

My mother worked as a waitress and got a job while in the early stages of her pregnancy. The job required her to get a test for tuberculosis. An x-ray. Why my mother got the x-ray when she knew she was pregnant is a mystery even to her. It would have been easy to opt out or to ensure precautions were taken but she didn’t.

My sister was born with Hallermann-Streiff Syndrome, a congenital condition that affects mostly the face and skull. In short, my sister looked different and that difference was the cause of some extreme bullying she suffered in her early years. Did this affect what was to come and who she became? Of course. Does it excuse it? Not at all.

In the first 12 years of her life my sister was tormented by her peers as a freak and it affected my mother deeply. She blamed herself for the loss of her two oldest boys, now adopted legally by her very good friend, and she knew that the x-ray was to blame for my sister’s condition. My mother swam in a sea of guilt and I have no doubt that there was an element of depression involved.

It’s here I need to touch on my parent’s relationship. My mother had been married to a man who had a habit of just walking away from the family for weeks or months at a time whenever the whim overcame him. He lived homeless and partied with friends most of the time. When my mother lost her sons, she walked away from the marriage and filed for divorce but was unable to locate him. That’s when she met my father.

My father was a good man who lived a wanderer’s life. He was much like Bilbo Baggins, content to roam the earth with nothing more than a backpack and a smile. Sometimes not even that. As a teen and young adult, he often “rode the rails” or what is now called being a hobo. He would jump on trains and ride them to the next stop. He even once told me it wasn’t uncommon for him to get himself arrested loitering or something small so he’d have a place to sleep and a good meal. Not a glorious life but my father had a good heart and he never caused harm to anyone. He later joined the Army because, as he put it, he wanted a job. After that was finished he joined the Air Force and then the Merchant Marines. He even went to Korea as a member of the Princess Patricia’s Canadian Light Infantry. Yes, he was a ground pounder.

My father and mother met when he was in the Merchant Marines. He’d missed his ship and met a waitress whose life had taken a bad turn instead. My mother had just lost her sons and left their father when she met my father. Although he would help her fight for their return, they were never successful. When she became pregnant, my father chose to stay at a time when, if he had chosen to leave, no one would have thought anything about it. After all, in the 50s, a pregnancy was the woman’s problem and her job to find a man to provide for her and the baby but it was a man’s choice to take on that role.

By the time my mother met my father, she was wrung out. Too much had happened and she’d had no help dealing with any of it. She often told me that she didn’t care if my father stayed or left. My father, being the man he was, chose to stay and be the best father he could be with nothing more than a grade 6 education and determination.

This, then, was the back story into which I was born. I didn’t stand a chance.

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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

 

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.

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.

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