scoliosis

Extra Life 2017 – Fundraising

This Saturday, November 4th, 2017, I will be buckling down for another 24 hours of gaming misadventures, all for the Alberta Children’s Hospital.

I could give you the same schpeel I do every year; this was my home away from home, where I had 4 of my 5 spinal surgeries, where a pseudo-father figure surgeon helped me grow up and hone my sarcasm to its current needle-like state. I could tell you about how the smell of hospitals still makes me nauseous, and that the only way I can go into them is by holding my breath as I walk over the threshold, imagining how I carry a piece of the outside world with me as I go.

I could talk about the hours and hours of x-rays and appointments and surgeries. About sitting awake at night, watching night turn to day and nurses change shifts and fellow patients grow, heal, and leave.

When you turn 18, you effectively ‘graduate’ from the children’s hospital, but you never leave it. Not really. A piece of you stays behind, clings to the shadows. All the kids who walked in and never walked out, all the ones who gave up their innocence to surgeries and experimental treatments and promises to do the best they can.

The Alberta Children’s Hospital was built on the memories and shadows of those kids. Shadows insulate the walls from the coldest of the winter winds, taking the brunt of it so those who are still alive, who are still innocent, get a marginally better chance.

This year’s Extra Life seems a little more melancholy to me, and I’m not sure why. Maybe it’s the sensation of pain getting worse over the last year, or realizing that I am so far away from the comfort of those walls now. I’m as much an adult as I was ever a child, and I feel remarkably listless in between the two worlds.

Still, ACH remains my home away from home, even if I haven’t been a patient there in 10 years. The Good Doctor remains a remarkable influence on my life, even though I haven’t seen him since just after I was married.  And the little slice of shadow, that tiny bit of me, still lingers at the hospital, connecting me to it.

On Saturday, November 4th, I’ll be gaming for 24 hours and raising money for Alberta Children’s Hospital.

You can watch the stream here, or donate money directly to my campaign here. All donations over $20.00 get tax-deductible receipts, and any donation over $25.00 will get you entered to win prizes, including a limited edition BB-8 Funko Pop and a Dogmeat Funko Pop.

Every dollar donated goes directly to the Alberta Children’s Hospital Foundation.

Thank you

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Between Fire and Pines Update and Other Such Stuff

Between Fire and Pines has been out for just under a month n0w, and what a month it has been. At the insistence of one of my managers our store is now stocking numerous copies. I also have my first author signing planned for June 25th. I’ve sold 15 copies in-store, another 15 hardcopies online, and roughly 10 ebooks. So either somewhere out there 40 people are about to start demanding their money back or I’ve just ruined my reputation in the eyes of these 40 individuals.

But through all that, one thing has remained consistent. The feedback has been the same.

I couldn’t put it down. It just kept moving.

I call that a win. From the manager who definitely doesn’t read gore-suspense-thriller to the friend who offered the single review on Amazon, they just had to keep reading.

Now somehow book club has learned of it, and I can never go back to book club. Too bad. It was fun while it lasted.

I’ve paid for a small amount of marketing, which didn’t result in any sales; lowered ebook prices to extreme measures, which did result in sales; stared in bewilderment at the hardcopy of my novel, realizing I can never rewrite it again.

 

And that was when I hit the brick wall. Both metaphorically and literally because I wasn’t watching where I was going. It was bound to happen. I’ve heard people say it time and time again. When you finish that first book you experience this sort of atmospheric burn-out, probably from sheer bewilderment that it could possibly be done and in print. This is a problem because I have 8 more books I need to write, and yes, for those of you wondering, I do have enough ideas for all 8 books. This may be my first rodeo, but I have been training with this horse for thirteen years. Yeah, how do you like them metaphors?

So I hit the wall, and then the wall resulted in a strange mental stress which, perhaps unexpectedly, resulted in an intense, holy-shit sort of physical stress that, for the last week, has made my body just… just awful. Cranky, bitchy, chronic painy awful. Screw you, chronic pain. You’re such a dick.

We got a dog this week as well. Alex’s compensation for canceling the trip to Japan. Her name is Whiskey. She is an 8 year-old shepherd mix and she is derpy as hell.

Stress after stress. There was an article in CBC about Prince’s Fentanyl overdose. They spoke to several doctors who stressed the challenges of dealing with chronic pain patients. They did not speak to any patients themselves though, because… reasons, I suppose. It irked me. Not because what they were saying was wrong. I imagine it must be difficult to deal with chronic pain patients. I agree, opiates are over-prescribed. But if you are going to talk about chronic pain, perhaps CBC readers would benefit from actually hearing from someone who suffers from it.

It upset me, to hear that the conversations were difficult for doctors with no concept of how much of a challenge it is for patients to come to doctors, with all their fears and flaws exposed, and say “I need help.” Then to top it all off be told that, “Hey, it’s as much psychological maintenance as it is the physical pain. There is no magic cure.” You can’t just throw that at someone who is looking at pain for the rest of their life. At least ease them into it, jeez.

Where was I? Oh yes, stress led to pain and pain did a number on my creative juices, and it’s only after a couple days of writing notes by hand that I really feel like I can accomplish something again. Book 2. Because book 1 is finished and out of my hands. Nope. Still surreal. I’m probably 2/3rds of the way through the draft. Plenty of explosions and emotional highs and lows. Less gore though. I needed to tone that back. The ending will be more succinct, and Natalia’s growth as a character will be clear. At least, it will be if you’ve read the first book, which you can buy from any of these fine establishments:

Amazon.com

Amazon.ca

Directly from CreateSpace (So I get more moneys)

You can also check it out on Goodsreads, unless you are in book club. If you are in book club, please forget everything.

 

 

Writing and Chronic Pain: 2 For the Price of 1! Today Only!

I’ll admit shamefully to being AWOL from the internet for the last couple of weeks. Oh sure, there was a witty tweet here or there, but I just didn’t have it in me to sit down and converse with my friends on Critique Circle or post on Facebook or even update my GoFundMe supporters. I thought it was a lack of creative juices flowing. Then I thought to myself, No, if that were the case I would make something explode and everything would be back to normal. I pondered that perhaps it was partially due to participating too much at work (ha-ha! Alliterations!) but then during Christmas I worked plenty, and still managed a post here and there.

Why I wasn’t immediately able to identify it as a mental issue brought about by chronic pain is beyond me. You’d think by now I would instantly understand that chronic pain, and indeed any chronic condition has this inherent ability to burrow itself into your psyche and lay waste to what was once a fruitful and thriving land of social norms. Chronic pain is like an agricultural bacteria that eats away at the crops you spend weeks and months cultivating, leaving you with a wasteland. You don’t want to do the things you love, you don’t want to be healthy, to exercise. You don’t want to talk to friends or be social. You just want to curl up and sleep because at least in sleep you might be able to escape the pain for a few hours, and during that time your brain has a chance to sow new seeds and tend to them.

I let my crops rot in the ground over the last month or so, and I’m not certain why. It was certainly an unwilling choice on my part.

Then again, I always have theories. Some of them even make sense. For one thing, work has been busy and, for whatever reason, people have generally been unpleasant to deal with. I had a gentleman from Manitoba tell me what was wrong with Alberta’s politics just the other day. The irony was palpable; the self-awareness was not. Angry people drain me. They’re like a blistering sun, a thicker, summer heat that dries out the land. Angry people, unfortunately, tend to wear on my mental crops.

But I can deal with the angry people, usually with ridiculous cheeriness. So it couldn’t be them. Not really.

It could be, in all likelihood, pain. Because over the last month or so it has been bad. Despite the glory that is my Cymbalta, I’ve felt twinges of familiar nerve pain begin where my spine is pinching and grinding and generally being unpleasant. The arthritis is acting up, to the point where even wearing some pants put too much pressure on the bones, creates noticeable pain. Too much of it, in fact. I do strengthening exercises; I try to be aware of my posture. Shoulders back, stand up tall. It only hurts more. No excuse, you keep trying because if you stop then the pain wins, and you need to at least feel like you are fighting against it. Sometimes I’d like to let the pain win, but then I wouldn’t be me. That thought is almost as exhausting as the pain itself.

Maybe it isn’t pain. Maybe it is the stagnation of creativity that I’ve been battling since I sent my manuscript to the editor. There have been days when I’ve wanted to reread it, to go over sections, just to remind myself of the tiny details, but I resist. This should, theoretically, be the last week that she has it (unless it needs more work), which means soon enough I’ll have it back and can begin plugging away on the changes that I need to make for it to be presentable to the rest of the world. Easy enough, I suppose. In the meantime I’ve been thinking about book 2, doing research and the like. I fell into a crevasse with it, realizing that something I wanted to pursue, a plot point, just wasn’t realistic. That sent me into a tailspin, trying to come up with a better alternative while still maintaining the character development that needs to happen. I went out and bought myself a notebook that has space kittens on it. That is, kittens in space. It is my idea book where I’ll do my damned best to work through some of these ideas and try to find a more reasonable solution. Normally it is easy for me. Normally I get an earworm that whispers mystical secrets about the universe and also about my narrative, and that is that. A solution. Done.

Not this time. Do I keep this character or that? How does that person die? How will that person live? Explosions or viruses? How much trauma is too much? That last point, at the very least, I’ve managed to, not master per say, but understand efficiently enough that the whole narrative doesn’t seem campy. Still, it feels like stagnation. Creativity at a standstill.

It is an ironic sort of cycle. I use writing to help with the pain, but what if the pain is too distracting to allow me to write? What do I do then?

giphy

 

Chronic Pain Diaries: The Longest Cycle

Sometimes I imagine that I am in a time loop. That my life is only capable of extending to a certain point before I reach a door that is meant to represent change. Instead, the door leads me directly back to the beginning of the cycle. I walk, and run, and prance my way through everyday events until I reach that damnedable door. The whole process begins again.

Today was a bad pain day, fitting given that I had my appointment with the Good Doctor. It was the sort of morning where it felt like the pain was leaking from my spine and staining my hips, my thighs, and even my ass. My ass, for god’s sake. This is mechanical pain, coming from the arthritis. I assumed it’s because the weather is properly cold now. This mechanical pain is the sort that claws into your body and doesn’t let go no matter how much morphine or baclofen or kittens you throw at it. It’s a vibrant, hot, red and black pain.

In the last two years my pain has gotten worse, and with it I assumed so did my curve. Perhaps the only highlight of the visit was learning that my lower curve has settled nicely at it’s 45-49 degree range. It hasn’t moved and likely won’t anymore. Hooray for me!

But at the same time it was some of the worst news I could have imagined. 50 degrees is the magic number. That is when the specialists go from shrugging their shoulders and saying “meh?” when you ask about surgery, to rushing you into the OR and rubbing iodine over your back themselves. Don’t get me wrong. I don’t want more surgery. The concept of my spine being almost fully fused is troubling.

But I’ve learned to live with a fused spine. I’ve adjusted my life to it and I get by even without being able to bend over to tie my shoes. What I still find myself struggling with every day is the inconsistencies in pain. One day is good. One day is bad. One day is puppies and cotton candy and the next the puppies have rabies and the cotton candy is actually some sort of snake that is propelled by rockets made out of spiders. And while I can predict when snake-spider-rocket days might occur, it’s fairly hit and miss for the most part. And not knowing when I will be in that sort of pain is exhausting. You feel as if you can’t make plans, can’t make promises. You never know what sort of person you will be when you wake up in the morning.

Because the pain comes out of nowhere and it infects your life like those damned rabid puppies spreading through a daycare.

If the doctor has told me that the time had come to fuse my lower spine I would have been a-okay with that, because there is a slight possibility that fusing those two vertebrae would decrease some of my mechanical pain.

Maybe.

Then again, maybe not.

So I open the door and I walk through, back to the start of the cycle. I look back and see all my friends and family walking through the same door, yet somehow being able to reach another path that isn’t open to me. I have so many questions. When can I finally step onto that new path? What preparations do I have to make? Can I speed up this process? No. I am shunted back to the start of the cycle. Another year of waiting, of snakes and spiders nibbling on my nerves and burrowing into my body.

I’ll give myself one day to be sad, to feel a bit of self-pity that this will be another year when this cannot progress. I’ll put all my focus onto writing, of being a good partner to my husband and support him as he has supported me not only today, but every day rabid puppies and spider rockets strike me down. I’ll work and save, and in October I will go to Japan and see another culture with towering mountains and verdant plains. I’ll snuggle my cats when I feel sad and knit my blanket when I am lazily watching TV.

And I will have pain, every day, because the cycle is just starting again.

Chronic Pain Diaries: That Old Waiting Game

On Friday I have my appointment with the good doctor to get my spine poked and prodded. First time in nearly two years. I didn’t make the connection before, but since I’ve made an attempt to be more, shall we say, self-aware, about what my body is doing and trying to tell me (insert witticism re: the separation of body and spirit), I’m very, very aware of how damn nervous I am.

My tummy has gone full wibbly-wobbly, and I’m having a difficult time kicking the nerves that have settled into my brain. Why my brain decides to go all negative-nelly every time appointments come close when the rest of the time I am, generally, fairly positive, is beyond me. Why now? Why worry about the worst outcomes now instead of focusing on what will probably be good news? Hell, why not stay completely neutral until I have an answer?

I suppose after so many years of getting the obligatory check-ups at the hospital and receiving less than stellar news regarding the state of my spine, I just have a tendency to expect the worst. I could probably talk myself out of it, but the trouble is that this sort of nervous, negative, niggly knot in my noggin (HA!) permeates every aspect of my life. What is even worse is that I know it. I am like Muggy, the self-actualization Robot from Fallout New Vegas DLC Old World Blues who knows that his only purpose in life is to collect dirty mugs, and he hates doing it, and he despises the fact that he knows it is his only purpose. I know how my negativity impacts those around me, but try as I might I can’t kick myself back into shape.

It is classic Chronic Pain mentality. I don’t want to go to work today. I want to curl up at home with a blanket, a cup of tea, and a book. I have not one but two girl’s nights that I’ve been invited to this weekend and the thought of going to either makes me sick to my stomach because I can’t imagine a state of happiness existing, even temporarily, after my appointment on Friday.

To me, the hospital seems like a whirling black hole that I have been drifting listlessly towards for some time. Now I’m being pulled into the void and I can’t bring myself to focus on what is on the other side.

It’s problematic, because this is exactly what we are taught to avoid in CP classes. We aren’t supposed to get caught up in the negativity, but instead make a concentrated effort to imagine… well, happiness. We meditate, listen to music, write, draw, create and destroy. We force ourselves to become part of the world around us by contributing to its beginnings and ends. We focus on anything other than pain. Maybe it’s been so damn long since I’ve had to fight this mental battle, but the idea of being part of the greater metropolitan Earth makes me feel exhausted.

I know this is just a bad day, maybe two. I know it won’t last because I’m not the sort of person to let it dig under my skin and fester. I know all this, courtesy of perfectly rational thought, and yet I cannot shake the nerves. The more I try to distract myself with the larger Universe, the stronger the pull of the black hole. Whatever is on the other side, good or bad, surgery or another year of waiting, I have to find a way to get back to the old me. What is particularly troubling is that I’m not entirely certain if the old me is happy-go-lucky or doom-gloom-and-shrooms (I was trying to go with rhyming. In reality, I find fungai to be disturbing. Largest network of connected organisms? Creepy as hell is more like it.)

Two more days until I cross that event horizon. I’ll see you on the other side.

Chronic Pain Diaries VII

I wouldn’t say I’m the sort of person to put things off, but really, when it comes down to it, I am. I put off making wedding decorations until the last minute. I put off sending in my Student Loan repayment information. I have been putting off getting a drivers license since… well, I guess at least ten years now. I don’t mean to put things off. I think I just have one of those minds where the best intentions become very quickly overshadowed by other things. New ideas for books, character development, shiny things, is that a popcorn kernel stuck between my teeth? I get distracted by the little things in life because, and I say this with no shame whatsoever, the little things are what get me through the day.

I’ve been putting off making an appointment with my surgeon, my “Once a year check-up” for about nineteen months. Close enough, in case anyone is counting. It wasn’t because I was busy. Far from it. My health is a major priority in life and I would have easily been able to make the necessary phone call had I not been utterly terrified about what the results might be.

I try not to think about the fact that my lower back is on the cusp of needing surgical intervention. To think that I am one degree away from surgery. A single degree of change, the slightest movement, could lead to my spine being thoroughly and utterly fused for all eternity. At least until they discover some sort of spine-acid which cleverly devours specific parts of bone, thus freeing my from my calcified cage and allowing me to bend so I may tie my shoes while standing once more.

Oh, to dream.

One degree makes all the difference, and given that over the last few years it hasn’t jumped from 49 to 50 degrees, you’d think I’d be fairly confident. My spine is perhaps the only area in which I am a doomsday believer. I notice aches and pains and clicks and grinds that weren’t there a year ago. I notice that when I lay flat on the floor my body contorts as if my lower half is trying to run right, and my upper half is trying to escape to the left. And damnit, it hurts.

So I made the call to the good doctor and booked the appointment. January 8th. It now looms like some sort of prophecy. Behold, the woman of positivity shall be fused from tip to toe. Maybe if I pretended my life was directed by more awesome prophecies I wouldn’t feel so uncertain about it. Still, I can’t help but feel as if this is the time. This will be the appointment. This will be the one degree.

Extra Life 2015 – A Week Late

Last week was the official Game Day for Extra Life 2015. Unfortunately I couldn’t partake as I was busy screaming at children and their parents. Now, you might be saying to yourself “Tell us something about you that we don’t know, Kathleen.” If I am to be honest, I was paid to scream at them. I was paid by my place of work. I was paid to pump up the copious parents and their wee children who had arrived for the grand opening of our American Girl Boutique. It was great fun. I spent the day meeting and talking to parents and kids, escorting them through the store as I threw on my best Ol Timey Radio voice and waved my hands around like a Wacky Waving Inflatible Arm Waving Tube Man. Some parents were even kind enough to thank me for the job I did on twitter, which was jolly good.

But, that meant while I was screaming at children, all my Extra Life buddies were busy with bloodied fingers and sore eyes, taking part in a 24 hour video game marathon for our local Children’s Hospital (which I have spoken about before.)

Well, a week later, and I’m getting off my ass to do it. Cheryl will be joining me again this year, as will Shawna. My goal is $1500, and at this point I’m only at $340. It doesn’t matter, though, because it is the thought that really counts. Sean Rooney and his team raised over 40K in the memory of their son, Dominic. That money will go directly to ACH and help them remain one of the most prestigious Children’s Hospitals in North America. We are so, so lucky to have access to the research and staff at ACH, and every year around Extra Life time I feel the need to reflect on my time as a patient as ACH.

Like most sick kids, I never really had the capacity to look at my situation with any sense of rational thought. I never looked around and mused about the remarkable things happening all around me, about the lives being saved and lost within the bright walls of ACH. I never said, “Golly! The medical research taking place here is out of this world! Surely we, as a community, ought to go out of our way to support this fabulous institution!”

I was, simply put, a dumb kid with no concept of the world that revolved around me. In many ways I am glad that my education focused heavily on rational thought. I constantly wonder if I would be capable of looking back at my time as a patient at ACH with gratitude if it weren’t for the teachings of those around me.  For Doctor Harder, who stepped into the role of a father and still keeps my graduation picture on his desk; to Evelyn, who became a close friend and comfort to my mother. To Doctor Salo, who took on my case with his dry sense of humor and, to this day, is the only person I want on my side when Skynet takes over (because he is, and I quote “Not afraid of no toaster”.)  To my teachers who showed more patience than necessary through high school, as I adjusted to my life in this new and relatively disagreeable body, who offered me books and words of comfort every time a surgery came around. To the professors in College in University, who put up with my sarcasm and helped me hone it in such a way that the energy of it went towards educating others instead of fueling my own regrets. To my mom, who stood by my side for every surgery, every x-ray and MRI, who brought Momma Bear forth when needed, and joined me in outlandish and childish commentary about other patients during the long hours in hospital waiting rooms. To my husband, who stands by my side now, through everything. Who does it without being asked, knowing that I am perhaps a bit too stubborn to acknowledge that I need him there, when the truth is I do, for every appointment.

I do this ridiculous marathon for all of you, because you taught me how to survive, and help me to do so every day. And knowing that the love and compassion you showed to me was not meant for me alone, but meant to be shared with those who I encountered as I got older. I will continue to show compassion, thoughtfulness, and rational thought on a daily basis because that is what I took away from Alberta Children’s Hospital. Every child who walks through the front door of that amazing structure is fighting their own battle, be it cancer, blood diseases, autoimmune diseases, or broken bones. They don’t know it now, but they will learn compassion and thoughtfulness as well, probably years after the fact, when they are older and capable of reflecting on their experiences.

So tomorrow, if you are having a lazy saturday, join myself, Cheryl, and Shawna as we play games of all sorts for ACH and all the kids in Southern Alberta who have, and will eventually use ACH in some capacity.

We will be streaming via twitch here, starting around 10 am MST.

Donations can be made here.

There will be singing and antics and various games. Cheryl will also stream, I imagine, as she has a much larger and dedicated audience! There will be Moscow Mules to drink (I bought a bag of limes just for this event), popcorn eaten, and lots of Beemo and Vivi time in front of the camera.

Help me support Alberta Children’s Hospital, a week late but hopefully not a dollar short. If you can’t spare a dime, then please consider sharing this with your friends and family.

Thank you,

Kathleen Sawisky, esq.

Integrity Commissioner and also Prime Minister of Canada Hur Hur