Dear Premier Notley,
First, let me congratulate you on the NDP’s stunning rise to power in Alberta. 40 years is too long to suffer through anything without seeing some change (and I say that almost completely without irony save for the little bit which, I assume, will become clear in the next few paragraphs.) I proudly voted for my local NDP representative, although I believe she lost to the PC candidate who, as I understand it, had avoided drinking the same Flavour-Aid as the rest of Prentice’s self-worshipping team. Was that too bitter? That sounds a little bitter. I actually like our local chap; he’s always spoken up for Silverado. No hard feelings there.
It’s wonderful to think that the NDP will bring about some positive change for the province. Of course, there are going to be challenges. We’re heading straight into a recession, oil and gas are sitting in a corner together crying about how nobody likes them, and there is always the environment (of which I am told we have some) which needs to be talked about.
Knowing that those are all very important things that very important people like yourself (no irony) need to focus on, I’d like to take your time for a couple minutes here to discuss something that I think is very important. Something that our previous PC government enjoyed, shall we say, fannying about with? Something that the previous provincial government really had no handle on and probably made decisions about by pulling strategic keywords out of a hat.
Chronic Pain. More importantly, AISH. I’ve spoken about my struggles with both previously. While I have all but given up on AISH, chronic pain is something that I can’t give up on. Because it’s chronic. Which means it is never going away.
It’s sort of a bummer.
Let me brief you on the scenario. I am almost 26 years old. When I was 11 I was diagnosed with severe scoliosis. When I was 13 I had the first of five spinal surgeries to correct said scoliosis and a variety of other issues that developed because of it. I was fortunate to have all my surgeries here in Alberta (despite being a resident of BC for all but one of them). I love Alberta for welcoming my mom and me with open arms. I received the best possible care at the Alberta Children’s Hospital, which is why I am a volunteer there. And, much like a shelter animal, chronic pain has found its ‘forever home’ in me. That’s right. From the age of 13 until the day I die, I will be a chronic pain sufferer.
It’s sort of balls.
It’s taken me a long time to understand and accept my body for what it is. I should consider myself young and youthful and the world should be at my fingertips. I should be able to do anything. But, I can’t. Hell, I can’t even bend over to tie my shoes. I can’t stand for more than 30 minutes without sitting. I can’t lie flat without pain. I can’t sit without pain. Basically, I exist as some unholy entity meant to carry pain until the day comes where the pain bursts out of my chest like a demon summoned by Satan’s dancing minions.
Pain is my life. It sucks, but there you go.
Having come to realize that I will live my life with this, I decided to put effort and time into educating others, and trying my best to advocate for those who have yet to understand their pain, who struggle to eloquently explain why their pain is such a monumental problem to them and their ability to live.
Which brings us to today, this particular open letter. I won’t bore you with the details but suffice to say despite being in severe, chronic pain, unable to pay for my medication, unable to work in the traditional student area of retail, AISH decided I just wasn’t in enough pain. I always figured that was ironic. In my rejection letter they specified that my doctors thought I was handling my pain well, as if having a sunny Polly Anna attitude somehow lessened my pain. Let me tell you, it doesn’t. The only reason I am disgustingly happy is because it annoys people around me, and that brings me a perverse sense of delight. A girl’s gotta do, doncha know?
I took the rejection hard, especially given the nature of the appeal process. In my investigating I discovered that AISH was using the provincial government term of ‘Adult Interdependent Relationship’, but not applying the definition. In other words, because I was dating someone and about to move in with him, AISH decided I was in an Adult Interdependent Relationship. Funny enough, the PC government defines that as two adults living together for 3 years. I was annoyed by this. I can redefine words too, PC’s. Want to hear my definition of ‘wanker’?
Sorry, I digress. The point is this: There was no help available to me. Someone sitting in an office with, I presume, no windows, no access to natural light, and probably no happiness whatsoever, determined that because I was about to move in with a guy who I had been dating, I would be just fine. Oh, and by the way, my pain wasn’t that bad. I shouldn’t have to say this, but asking any chronic pain sufferer to describe their pain on five blank lines is idiotic. The only reason I can speak freely and easily about my pain is because I am trained in communication. I can’t imagine how others, who don’t care for the written word, try to explain how difficult it is to live with their pain.
Five lines. Five blank lines to explain how your life has been inexplicably changed by a single incident. How you have no appetite, no desire to move. How depression has fallen over you like a black hood, and you’re waiting for the axe to fall. How your loved ones have pulled away. How you can’t afford your medication because you can’t work, but you need your medication to work. How the vicious cycle of pain is amplified by the uncaring nature of the provincial government that is supposed to support you.
Five lines to say all that? Madam Premier, there aren’t enough notebooks in the world for me to explain what it is like living with chronic pain. Every day I learn something new about it. I learn how far I can push myself. I learn how it impacts my husband and, in turn, my marriage. I learn how much pain I can take before I cry. Everyday I learn what it means to be a young person, facing a life of constant, unending pain, until the day I die.
And despite all that, I try to be upbeat, I try to smile. I make people happy by being happy. It’s a nice feeling.
And for that, the previous provincial government punished me. It was brutal and unfair, and it showed to me how government agencies were willing to twist about like an electrified snake in order to avoid being held accountable.
I know now, as a married woman (because despite my dependence on him, that boyfriend did ask me to marry him, and I said yes) I have no access to AISH. However, that doesn’t change the fact that my current station in life, as well as those of hundreds of other chronic pain sufferers, is very dire indeed. You see, the problem is that AISH is supposed to blanket the whole category of ‘People Who Can’t Do Stuff Good’. No matter what you suffer, no matter what your station in life, you’re treated the same. And maybe that’s not a bad thing, I can’t say for sure. What I can tell you is that chronic pain is not some fly-by-the-night excuse for handouts. If you speak to any person. Any person – in fact, I would dare you to do this right now – speak to any chronic pain sufferer and ask them if they would rather get a little bit of financial help in dealing with their disease, or go back to how life was before their pain, every single one of them will ultimately prefer having a normal life. I know I would. I know the people in my chronic pain management group would as well.
We aren’t people looking for handouts. We’re people looking for help in making our lives as normal as possible, whether it be income to supplement medication or financial assistance in living costs. Something, anything, to make our day-to-day interactions with the rest of the world just a little bit easier. That isn’t a cry for a handout. It’s a cry for some basic consideration about what we go through every single day of our lives.
So, Madam Premier, I invite you to come meet with me next time you are in Calgary to learn a bit more about what the chronic pain experience is like, and what your new, promising government can do in order to help the CP sufferers of the province live and contribute to the best of their abilities. I’m not a professional anything. I’m not a doctor, or a scientist. But I was trained to think critically, rationally, about everything. I can speak about my disease, because that is what chronic pain is, without anger or regret. Trust me when I say that your government needs to listen to a first hand account of what life with chronic pain is like, and I can deliver that.
It’s entirely up to you, but the invitation is always open. I’m not choosing to push this boulder up the hill for myself alone. This is about giving voice to other CP sufferers; the ones who can’t articulate, who haven’t come to terms with it yet. And much like Sisyphus, I’m going to keep pushing the damn boulder every time it rolls over on me.
The NDP government has a tremendous opportunity to fix the mistakes of the PC government. I know that there are a lot more important things that need to be focused on at the moment, but I urge you to not discount my point. There is a vast majority of people in your province suffering quietly that need your help. You can change their outlook on their condition and their lives if you take the time to listen to me.
Yours Most Sincerely,
Kathleen Sawisky
Integrity Commissioner
