Thursday, August 24, 2017

The Weight of the World and the Agony of a Pain Flare

Yet again, you haven't heard from me for a while. All the stress finally caught up with my battered body and I'm in the third week of the worst pain flare I've had since my back went out for good, nine years ago. I simply haven't the energy or even the ability to sit at my desk and write a good blog post. But I know I have a lot of regular readers who worry about me when I disappear for a while, so I'm writing you all a quick update on the ongoing endurance test that is my life.

Climate change is real. My province has been on fire all summer. My city was filled with thick, sooty, yellow smoke for about two weeks, blotting out the sun, blotting out the sky, making surfaces and our skin gritty, and affecting the breathing of even the healthiest among us. 

I've always coughed lot - it seems to run in the family - and my coughing got worse with the smoke. Two and a half weeks ago, I got up in the morning, coughed a deep, body shaking cough, and felt my back seize. 

I knew immediately that this was bad, very bad. Where I'd walked to and from the bathroom a moment earlier, now I could not even stand up, let alone walk, without help. I was filled with the terror that comes with knowing things are going to be very rough for a long time.

Of course, the cough was not the actual cause of my back spasm. The thing that throws a back out - tying a shoelace, petting a cat, coughing - is never the actual cause. It's just the final straw. The real cause is obvious: the constant bullying and abuse to which my insurance company has subjected me for the past several months. Obviously, world events haven't done anything to help either. 

My physical disabilities are mostly myofascial, which means that the more my body tenses with stress, the worse my pain gets, which, in turn increases my stress, which increases my body tension... You get the idea. A disabled person can only endure so many months of this, with PTSD and IBS too, before her body gives out entirely. 

And that's what my body did: it gave out entirely. On that first day, my pain was so intense, I screamed just trying to roll over in bed, let alone actually sitting up and, say getting to the bathroom. Beau had to spoon-feed me as I lay in bed, crying with pain. 

When he tried to brush my hair, even that made me scream in pain. I'd never before realized that I have to used my core muscles to keep my head from wobbling when I brush my hair, or when anyone else does it for me.

By the second day, with a rickety walker, and horrific pain and struggle, I was able to get to the kitchen for my three meals, but you can see by my posture and the vast array of pills in front of me, that it hurt. Beau had to move the table back for me to sit and then move it forward again. There was no way I could move my chair, or even brace myself while Beau moved it for me. 

Beau has had to do everything for me: help me get dressed, help me get up and down, get me onto a bathing chair in the tub, bathe me, brush my hair... everything.

Plus, the doctor prescribed a medication that made me really sleepy and stupid. Before my flare, I'd been reading an interesting article (about chronic pain management) in The New Yorker. When I tried to finish it, I couldn't understand a word of it. This made Beau's job of helping me with my physical needs even harder, since I kept forgetting the words to explain the help I needed. Beau's not the world's best person with spatial reasoning in the first place, so you can only imagine. It would have been comical if it weren't so awful.

I spent my days in bed. I couldn't even use my daybed as it was too soft, which meant that I couldn't watch my birds at their feeder or cuddle my cat (he's too old to jump on our higher, shared bed). I missed him. I missed the world.

I had terrible cabin fever and was terrified that this life of even more extreme pain and further reduced mobility was my new normal. To prove to myself that this wasn't so, I insisted that Beau take me out when it was far too soon for me to do so. 

My PTSD was so bad, and I was so anxious, that Beau and I ended up in a terrible fight in the car on the way there. Something about my helplessness, my complete dependence on him for anything at all, triggered me terribly and suddenly I was a child again, with Smother driving me somewhere to be raped by yet more men, who would, undoubtedly, hurt me badly, maybe even cause further permanent injuries to my already broken body.

As you can imagine, this flashback did nothing good for the tension in my body. My pain got even worse. By the time we got to the cafe, I was barely functioning, on any level.

And then there were the nazis (I refuse to capitalize that word). I can't believe that in Canada, in 2017, I'm even uttering such a sentence: "And then there were the nazis."

There they were, all those young, powerfully build, mostly blond(ish), abled men, carrying torches and chanting, "Jews will not replace us!" I was instantly flung into an emotional identity crisis. Obviously I'm white, extremely white. As such, it is my job to align myself with people of colour and help in the fight against racism. But, according to those marching men, I am not white. Instead I am a Jew: part of an evil group of filthy rich, ratlike conspirators who use African-Americans as pawns in our schemes to ... to what? Rule the world? Exterminate white people? It's not clear.

And Trump said some of these people were "very fine people"! There was no harm, he said, in marching to preserve a statue of Robert E. Lee, a man who not only supported slavery, but fought in a war to preserve. Trump said this and yet he wasn't immediately relieved of his position as president of the United States. It couldn't be real. But it was.

There I was, in an agony of pain, stupid on medication, watching the world fall apart... and, as a Jew, I was being blamed for it!

I'd thought my response to a neonazi resurgence would be to hide in plain sight, to "pass" for white and not tell anyone I'm Jewish. 

But Heather Heyer (whose eyes were exactly the same colours as mine) was slaughtered by a white supremacist because she was fighting for the rights of people like me. Like her, I've never been good at keeping silent or invisible in the face of injustice. Suddenly, wearing a Star of David became more important to me than it had ever been.

Am I white? That's a question that will have to wait. Right now, my personal identity isn't important. Fighting racism is and that includes antisemitism. 

Not that I know quite how I to do this while I'm bed-ridden. There was an anti-racism counter-rally here but its organizers were woefully uneducated and uninterested in accessibility issues. When I repeatedly asked people from my synagogue for help, I was ignored. Given this indifference to disabled people, this ableism, I would have had trouble attending the rally even at my best, let alone at my worst.

So I posted my heroes on social media and hoped it made a little bit of a difference. Harriet Tubman, like me, was an enslaved child who, like me, suffered from chronic pain because her enslavers abused her. Unlike me, after she escaped slavery, she returned 13 times and rescued about 70 people from slavery. 

America needs statues of Harriet Tubman, not Robert E. Lee, all over the south.

Everyone knows Rosa Parks. She's my idea of a hero and a role model.

So I did my little bit, but I was scared. Scared that I was going to be in this much pain for the rest of my life, and scared that the nazis were winning. In the second week of my pain flare, I managed to go to therapy, though it hurt like hell. I felt it was important. I wouldn't go quite so far as to say I was suicidal, but suicide seemed like a very rational option. In my whole, sordid life, I have only felt that way a few times. 

On the way back, as every bump in the road sent shocks of pain through my body, Beau and I tried to be like Millennials and give duck face to the camera. Instead, we just looked really sad, which we were.

In an effort to pull myself out of my unhappiness, I started trying to work on a blog post, about Mid Century Modern fashion, and Jewish involvement in the mid-century civil rights movement. It didn't help much. Sitting up at my computer hurt too much. And I kept coming across virulently antisemitic websites. And it made me sad to look at how much better my body was just a few weeks before my flare. And the pain meds were making me stupid.

On my way home from the doctor. Note my walker in the back seat.
I kept trying to get off the extra meds and the walker every time I felt a tiny bit better - and I kept getting worse again. Finally, two weeks into this, I went for an emergency visit to the doctor who told me what I already knew: I needed to slow down my internal timetable for recovery. I needed to stop doing so many physiotherapy exercises, keep using the walker, stay on the meds a bit longer, and stop trying to do ... well, anything at all.

I needed to live in limbo. I'm not very good at that.

But the doctor was right. About three or four days ago, I started to feel like I was truly recovering, though very very slowly. I'm starting to see beauty again. 

These are only some of the family. I think there are about eight of them altogether.
I can sit at my desk a bit longer now, as evidenced by the fact that I'm writing this post.

From my desk I can watch the little family of Gold Finches that have decided to call our yard their home. 

With Beau's help, I was able to shuffle out onto our balcony to watch the eclipse, which made my skin luminously white ...

... and his skin a deep, surreal tan. 

Last night, I could see more humour in Beau's bathing me every night. He's really bad at it. Water gets absolutely everywhere, which is why he strips down to do it. He says he's getting to like our Special Hat Time, so named because of the fetching shower cap I wear.

Today I managed to rest on my daybed again. Bobby was overjoyed. He kept jumping up and weaving back and forth against my hand, too happy to lie still, even though he's nearly twenty-one years old!

I can watch my birds from my daybed too, including a juvenile hummingbird (whom I have yet to successfully photograph, it hurts to hold the camera up) who keeps scolding me for being too close to his feeder. I've been away for so long, I'm a new beast to him.

I can finally stand upright now, my spine totally unfurled, though i can't do it unaided for more than about 30 seconds. I can walk a little bit without my walker, but it's hard and I need to lean on walls and a cane. I'm also trying again to get off the extra pain killers. This time, I'm doing better.

So. I'm still mostly bed-ridden. I'm still in terrible pain. I'm still using the walker. 

I'm also still fighting my insurance company, which, ironically, says I'm not too disabled to work. And Trump is still defending nazis.

But I'm up a little bit more, and I can use my daybed again. My pain levels are dropping closer to my baseline pain levels. I'm using a cane instead of a walker a teensy bit. My MLA is fighting hard for me to get what I'm owed by the insurance company. And even Trump's own people are finally turning against him. Dare we hope that he will be impeached?

So there's a little hope. That's all I've got.

(I'm sharing this with Honest Mum, and Not Dressed As Lamb.)