Chronic Pain Diaries

Of

Of words. Of thoughts. Of the indistinguishable hum of your body and the city, moving together, crumbling in tandem. Of your smile through teeth, your laughter through emptiness. Of the definition of your life, laid out before you as a dissembled puzzle needing a steady hand to help you piece it back together.

Of the words to family and friends, kind whispers that what they see is true and real and nothing else could be held beneath your skin, buried within your bones, guiding your every breath.

Of the break of blue in the swell of grey, so rich you feel your soul spoon it from the sky and consume it. Nourishment where none exists. Of the spread of air through lungs and veins, igniting the flame within, reminding you that it is possible to feel beyond the tinder and the match. Of the blaze that can feed and grow, if only you knew how to tend it right.

Of the crystalline, the shattering, when the blue is no more and the fire is out and you curl upon yourself to protect the spark that surely must stay alive. Of the life you live, in spite of it all.

Of the crunch and the craze and the sense of existing as nothing in a world packed full of people and their everything. Of the beauty in the mirrored city and the anonymity it reflects back, reminding you that to be faceless is to be fresh and clean and without sin or struggle to your name.

Of the first breath in Spring, reminding you that even beneath all the dead and dying, a crocus may still emerge and create colour.

Chronic Pain Diaries – The Menial

No one celebrates the menial tasks when you have chronic pain. No one celebrates any accomplishment when you have chronic pain, because there is an overarching belief that you should just do it.

Bullshit. I want a tickertape parade for getting out of bed every day this week. I want a plaque engraved with Kathleen Sawisky Managed to Make Dinner Instead of Ordering Skip the Dishes. I want a round of applause for being able to walk to and from the bus stop every morning and evening (approximately 4 minutes worth of consistent walking, traffic notwithstanding. Might as well be on the other side of Canada.)

I’d like a certificate that acknowledges my ability to continue smiling through the pain while I interact with coworkers, or listen to the troubles and woes of others. I’d love to get some sort of trophy for not throttling the next person who tells me I have back pain too. Pulled a muscle working out. I’d love an all expenses paid vacation out of chronic pain for a week, a day, even an hour.

I’ve earned a commendation from the Mayor, noting my supreme ability in being able to sit for a 45 minute bus ride without crying from every bump and jolt. The Prime Minister should proclaim the 22nd of June a day in which we celebrate my skills in being able to bend over to put my shoes on while what surmounts to lightning shoots through my lower back. The Queen herself ought to sassily remind everyone that I am a goddamn champion for cleaning the bathroom or wiping down countertops or giving the hardwood a cursory sweep.

No one celebrates the menial tasks when you’re normal. But when you live with chronic pain every day, these things are taken for granted. To get out of bed, to make sure you eat, to put your clothes on, to have the same work ethic of those around you, to appear as normal as possible while your body rebels in abnormality. These menial tasks take everything out of you, and no one knows it, because you are very, very good at playing pretend. Still, a certificate acknowledging your skills in basic survival might be nice.

Chronic Pain Diaries “The Luckiest”

I’m lucky, I’m lucky, I’m lucky. It’s a mantra that I force myself to live by. I am lucky. I am well-adjusted. I’m okay. I repeat it every day religiously because if I don’t, if I miss a moment of it, I run the risk of revolving into something heinous. It’s a something that is a wreck, a destructive force that runs the risk of devouring my sense of ‘self’. I don’t know what I would become, but I can’t find out.

Because I am lucky. I am lucky.

Today is a bad pain day. I knew it the moment I woke up. My skin ached, my bones felt like they weighed a thousand pounds each, and my muscles pulsed. I know these bad pain days better than I know good pain days, if there can really be such a thing. I know them and I dread them because they bring me as close to the edge of the ruination of my ‘self’ as I ever want to come. I continue to remind myself, I am lucky, but somehow the words are more hollow. They echo in my mind, absorbed by the heavy darkness that infiltrates all my senses.

I am lucky.

I never understand how it happens. Yesterday my pain was awful too, but for some reason it wasn’t a struggle. My brain woke up, acknowledged the pain, and then kicked it into the back corner where other, more important things could overshadow it. Funny pictures, my Codsworth FunkoPop arriving, lovely emails from people I work with, dinner with the husband. It’s all good, everything is fine because I am lucky. So what changed in the eight hours of sleep (or lack thereof) that my mind, so irregularly wired to handle the concept of chronic, unending pain, now seems like a mountain I can’t climb, let alone reach the summit to plant my flag? Brains are remarkably fickle things, I suppose.

I am lucky. I am alive.

It’s so damn exhausting. On the long walk through the Plus Fifteen from where we park downtown to my office I listen to my Chronic Pain Mix. Songs that are dark, or peppy, or make me feel good. The Lament of Eustace Scrubb by The Oh Hellos; Alright by Pilot Speed; Safe and Sound by Hawksley Workman. They calm the sense of aggravation, of unease. Some songs are so melancholy, I could revert to a teenage frame of mind and think Yes, this song perfectly fits my mood. Some are so energetic, I wonder how I could possibly feel depressed. Because that it was it is. Depression. A big, black swath of angry, vitriolic depression that clings to me.

I am lucky, but I can feel it in my heart, like it is encased by a cloth that is too warm, uncomfortable. It makes me feel sick. And I can’t express it properly, because for over half my life now I have lived with this I am lucky persona. I thrust out my chest, I bang my drum, and I declare Look at me! I am lucky!

The drumming drowns out the little voice in me that is sad and exhausted by the weight it carries.  Lucky as I may be.

I am lucky.

I see others who are also lucky, but don’t know it yet. I speak to them and listen to their frustrations and I nod and commiserate, because on some small level I understand. Yes, it is overwhelming; yes, it is depressing. Yes, it is never going to end. But you will live. We will live. We are lucky. But there is the part of me that knows that I will never be part of their club. Like high school, like all the places I’ve worked, like any social circles, I sit on the periphery of this world because my day-to-day sensibilities do not lean towards sadness and anger and frustration, but relentless positivity.

I am lucky.

Chronic pain is lonely enough as it is. Social isolation is a monster. But to be isolated further from those who suffer as you do? Unfathomable loneliness that eats away at you.

Still, at least you are lucky.

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 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.

Chronic Pain Diaries VI

I imagine my pain as a black fungus that covers a forest floor. It began as an anomaly, a foreign invader to an ecosystem untouched by fire or drought. The conditions were perfect; greenery to wrap around and consume, branches and bark to latch onto, continuing the spread until the whole of my world was consumed by black, sticky fungus. I can burn it away with fire, cut it with a knife, but it will always come back. It is buried deep into the earth, into my body, and no matter which way I push it, it always comes back.

Some days are easier than others. It’s always been that way. Some days I feel like I could dance wildly, or clean the house for hours, or even go for a run.

Some days, not.

Yesterday was one of those days. Arthritis pain, muscular pain, zig-zagging lightning nerve pain. The black fungus spread another few inches through my body and made their home in my limbs and joints.

One of the most difficult things about chronic pain is the communication. How do you tell your loved ones that you feel like a foreign invader, a spirit that doesn’t belong in the body that is inherently yours? How do you explain that the pain reaches into your mind like long, limbering fingers and begins to poke and prod at you; a wild distraction.

We all have ways to fight it: Meditation, hobbies, music. But on days like that, when a reminder about pain is around every corner, music, writing, meditation… They don’t work. They have no place in that world. If anything they are an infuriating reminder that one’s body is abnormal at the very least, and an evolutionary mistake at the worst. And somehow, among the pain and the drugs and the tears, you have to find a way to explain this to your family and friends without swearing excessively or grabbing the nearest knife and waving it madly in front of you like a put-off Gordon Ramsey.

Sometimes there are no words. There is sadness and a sense of hopelessness, but no words. Because you’ve said it before, so many times. How often can you say that you are in pain and hope that it still has the same impact? It’s nothing. It’s just pain. Just every day, all-consuming pain.

An Open Letter to Alberta Premier Rachel Notley

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.

(more…)