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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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.

Exercise and the Crazy Person

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Two subjects I often write about are anxiety and exercise. However, I’ve never written about them together and how they interact. Recently, I got a glimpse into how my mind affects my fitness routine and vice versa. It was a moment of awakening for me and it occurred to me that not many people think about the connection. I’ve never talked with a fitness trainer who takes mental illness into consideration. Why should they? One is body and the other is mind, right? Yet there is a bigger connection between the two than you might think.

As a child, and then into my teen years, I enjoyed being physical. I was always moving and going. I swam competitively, biked almost everywhere I wanted to go and loved walking for hours. Like other teens, I went rollerskating every chance I got which worked out to be three or four times a week. It kept the darkness at bay.

My home life as a child was less than ideal. I was the victim of psychological and emotional abuse on an almost daily basis in a family that believed any physical touch was sexual in nature. I didn’t learn how to hug until I was 17 years old. There was a very dark nature to my being that often manifested in thoughts of suicide. I even came very close to trying to commit suicide a couple of times.

I firmly believe that the only reason I’m alive now is because I was so physically active. I didn’t know it then but the activity helped keep the worst of it at bay. Looking back, when things got really rough (like the time my sister grounded me for a year for saying no to her), I took to physical activity. It was a way of pushing everything aside and focusing on the moment.

When I had to take care of my parents, I didn’t have time to go out and exercise like I wanted. I couldn’t just get up and leave for a few hours to get away. As a result, those are some of the blackest years I’ve known. I never want to go back to that.

Recently, though, I started exercising again and I’ve noticed something that should be apparent to anyone. If I’m in the middle of an anxiety attack and go exercise, the attack stops or recedes to a manageable point. Go endorphins! Yes, endorphins kicking in is a temporary measure but it’s enough of a breathing space to give me room to quiet the attack. You cannot imagine how wonderful that is. Just to have that moment’s peace is amazing.

There are still challenges. Going to an exercise class fills me with dread and the thought of going to a gym is enough to make me want to wet my panties. Ideally, I would like to see someone try to tailor exercise to help with mental illness. For example, if someone has bipolar disorder, is yoga the best or perhaps martial arts? For someone with schizophrenia, is running a good idea or swimming? I think exercising is a good first step. Now, I think we need to take it a step further and start to tailor programs to help those who suffer from mental illness.

Shh… Don’t Hire the Crazy People

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Anxiety Attack

Anxiety Attack

Crazy don’t mean dumb.

I’ve always been fairly upfront about my issues with anxiety and the struggles I have in my day to day life. Recently I was advised to rethink the wisdom of sharing this information. After all, I’m a writer and entrepreneur and people won’t take me seriously if they know I have “issues”.

I’m well aware that there is a stigma around mental health and some serious myths about it. Since my usual reaction to advice such as this is to tell the person to stick it up their ass, I thought I’d devote some time to explaining why they should stick it up their ass.

  1. If you have mental health issues, you’re not reliable. I don’t know where this one came from but nothing could be further from the truth. When you have a mental illness, you’re very aware of how others see you so you work very hard to overcome that. Now, I don’t know how it is for others but, for me, anxiety is a demon with a pitchfork poking me in the ass on a fairly regular basis. If I don’t check things three times and have it ready to go well before the deadline, that ol’ demon starts warming up his pitchfork. Reliability is not an issue for those of us with mental health issues. Having a private crying jag in the middle of the day sometimes is but not reliability.Of course I'm crazy. I'm a writer.
  2. People with mental health issues can’t do the work. Now, I’ve heard this one again and again. I’m not sure if the belief is that the insanity will interfere with the work or that somehow our brains short circuit and we are unable to learn the work. Either way, it’s a farce. We may require some special consideration when working. For example, I have a friend with Obsessive-Compulsive Disorder who needs to have his desk in the corner of the office. It’s a small thing and helps him to feel safe and happy at work. Mental Health disorders are just a disability. If we were sight or hearing impaired, businesses would think nothing of accommodating us. We’re sanity impaired. We might need to listen to our headphones or a private area away from others. That doesn’t mean we can’t or won’t do the work. Make us feel safe and you’ll get 150% effort from us.
  3. People with mental health issues are unpredictable. Oh let me explain how untrue this one is. I have anxiety and I can give you a list of things likely to cause an anxiety attack. They’re called “triggers” and we want to keep them safely locked up. Anyone with mental health issues has a similar list and is more than willing to show them to you. We know how to avoid our triggers and like to avoid them. However, even if you were to dunk us right in the middle of our triggers, we can tell you exactly how we’ll react. That’s not unpredictable.

The idea that those of use who are crazy make lousy workers is one of those myths that somehow got started when I wasn’t looking. The truth is far different. We work damn hard and most of the time we come up with some very creative ideas. Okay so hiring fairies to paint the office wasn’t one of my better ones but there have been others and some of those have worked out.

Besides, there’s one other reason for hiring crazies; we certainly keep things interesting.

Robin Williams – Time to Talk

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My heart has joined the thousand, for my friend stopped running today” – Richard Adams

Yesterday I, like millions of others, shed some tears over the passing of Robin Williams. A thousand thoughts went through my head and I wanted to say so

Robin Williams - You're only given one little spark of madness. You mustn't lose it.

Robin Williams

 

much. I find it ironic that his laughter saved me from committing suicide. I never got to thank him. So, today, I thought I’d devote this space to talking about a subject that gets so little attention; mental illness. At first I thought of doing something poignant and hard-hitting but then I thought Robin Williams brought laughter to us so why not talk about this subject with laughter.

I don’t want his death to mean nothing. So let’s use this opportunity to talk.

I suffer from anxiety and have for years. So many people who have loved ones suffering from mental illness have really no idea how to help. That’s an awful feeling, being powerless in the face of such blackness. So I thought I’d give some advice from the perspective of someone living down the rabbit hole.

  • Don’t tell us how to handle it. Everyone has great ideas and you’re no exception. However, “get over it” isn’t particularly helpful when you’re gibbering in a corner. “Just ignore it” is great advice if your brain doesn’t feel like it’s trying to claw the inside of your eyelids.
  • Don’t do for us. Sure, it seems easier to just do stuff for us. After all, those of us who ride the crazy train have to dodge the hallucinations as we do the dishes. However, we’ve worked up a rhythm and when you step in to do it for us you knock us off our stride. We’re not helpless. We do stuff. Okay, so maybe I bark when I reach for the apples at the grocery store but just ignore that. Better yet, bark with me.
  • A little laughter goes a long way. Years ago when I thought suicide sounded like a great escape, I went to see the movie, “Good Morning Vietnam”. I laughed so hard that I cried. A thought hit me that if I could still laugh then I could still live. Ever since then when things get bad I reach for Robin Williams. Help us to laugh. Sometimes that’s hard when you’re lost in your own head.
  • Talk. One of the great things about kids is they ask questions. Even the ones they’re not supposed to. Somehow we lose that talent. Don’t talk about the elephant in the room. Mental illness is an elephant in the room wearing bright yellow rubber boots and singing show tunes. Talk about it. Don’t worry about offending us. We want to talk. We want you to understand.
  • Let us have our moments. You may not understand why I need to turn the lights off and on three times but I do. It may not make sense to you that I panic if the pickles are on the top shelf in the refrigerator instead of the middle shelf but it makes sense to me. I have my rituals and touchstones. Please don’t mess with them.
  • Accept us. Crazy don’t mean dumb. If you love us, then love us. That means accepting that we’re going to text 15 times in a day just to make sure you got our last message. But we have good points as well. We make amazing cupcakes and know all the best places to make out. Well, I do, anyways.

Oh, captain my captain

Robin, you’ll be missed. You left us too soon and we had so much more laughs to be had. I understand the war you waged within yourself. A war too many of us fight. Know this; your death need not be in vain. It’s a chance for us to talk about that darkness that so many of us live with. It’s time to speak out.

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