September » 2010 » Danine N. Spencer

Talking About Chronic Pain Is a Feminist Act? You Betcha

What do you write about when your neck hurts so bad that all you want to do is lay your head down on a pillow and make love to a bottle of Darvocet?

What do you write about when you’re so tired after a weekend trip away for your cousin’s wedding, you don’t even have energy to read a book or watch TV?

What do you write about when you get a flu-like virus with the sore throat and cough thing and you’re scared to death you’ll get bronchitis, which’ll go into pneumonia and almost kill you like it has twice before?

What do you write about when the aforementioned flu turns into a stomach bug and you can’t get rid of it because your spinal cord injury has trashed your GI tract?

This has been my life for the past several months. Well, to be more accurate, it’s been my life for the past five and a half years but the last few months have been especially hard. My pain level has been really, really high whether it’s been migraines or neck pain. I have yet to figure out alternative methods for dealing with this chronic pain so I’m stuck with pain pills and muscle relaxants. My fatigue level is about the same as it always is – moderately high, and even though my immune system is pretty healthy, it took me about ten days to fight off that stupid virus.

But here’s the thing: when I’m in a lot of pain or really tired or really sick, I don’t know what to write about. Does the world want to hear about how miserable I am? Is there value in that? On the one hand, no, the world doesn’t need to hear me complain.

On the other hand, I believe it is an act of feminism for women who live with chronic illness and pain to share our stories. The world wants us to suffer in silence. It wants us to believe our pain and illness are our fault. It wants us to think that pain and illness are shameful and that we, in turn, should feel ashamed for having these conditions. Illness and weakness is associated with being feminine. Men in patriarchal societies have used our pain and illness against us for centuries. If women talk about living with chronic conditions, if we bring the “shameful”, nasty details of our daily lives with sickness and pain out of the shadows and into the light, we can help each other. We become stronger with each story. We become less alone as we recognize ourselves in each other. We can tell each other, “Yes, I’ve experienced that” and “I know what that feels like” and help ourselves and others feel just a little bit less alone.

There is value in my story. I have to remember that. I have to stop doubting myself and just keep writing. Writing about living with chronic pain and illness is a feminist act. I can do it.

Book Review: The Chloe Pink™ Doodle & Dream Coloring Book

The Chloe Pink™ Doodle & Dream Coloring Book is a fantastic coloring and activity book that doubles as a journal and sketchbook for girls of all ages. From the very first page, Chloe Pink™, the cartoon character created by Sharna Fulton, inspires you to pick up a pencil, crayon or marker and make the book your own. You can color the pages, draw and sketch on the many “Dream… and Doodle” pages, and journal. On other pages, Chloe Pink™ asks girls to tell her about friends, school, hobbies and of course, dreams, with words, pictures and mini-games.

The entire book is designed to encourage self-esteem and creativity and to help girls realize they are special. Just flipping through the book makes me feel happy and I can’t wait to fill it out. I let my mom, who is 64 years old, look it over and she said the same thing, so Chloe Pink™ truly is the spokesperson for girls 3-103.

One last thing: The Chloe Pink™ Doodle & Dream Coloring Book is a must-buy for all the girls and women on your Christmas list but I would be just as likely to give it to my three-year-old and five-year-old nephews as I would my nine-year-old niece. Older boys who have “outgrown” coloring might turn their nose at Chloe Pink’s masterpiece. Still, Chloe Pink’s message of building self-esteem and encouraging creativity will be a great gift for all the girls and boys in your life.

The Chloe Pink™ Doodle & Dream Coloring Book is a must-buy. Head over to Amazon.com and pick up a copy for everyone on your Christmas list!

**Disclaimer: Review copy provided by the author. No other compensation received.

Sick and Happy About It! (The Pain Chronicles)

I’m sick today, like sore-throat-and-coughing sick, and I have to admit, I’m really happy about it. No, I’m not thrilled that my throat is scratchy, I can’t stop coughing and I have no voice. No, those things aren’t any fun at all. I’m not delirious with fever, either. I promise. (I just checked my temp. It’s A-OK.)

Despite being miserable, I’m thrilled that I’m sick with something normal for a change. Usually, when I don’t feel well, it is because of pain and fatigue from my spinal cord injury, hydrocephalus and Dandy-Walker syndrome. My experience and the resulting symptoms are so rare that it feels like no one else will ever understand what I go through on a daily basis.

I had a C4 spinal cord injury and although I have regained most of my mobility, I still have a lot of pain in my neck. It hurts if I sleep funny or sit in an uncomfortable position for long periods of time, such as looking up or to the left or right. My neck hurts after being jostled around like a bobble head during car rides. It helps if I cushion it with a pillow but it doesn’t take the pain away completely.

I get a lot of headaches, which vary from tension headaches to migraines. I can deal with the tension headaches, as long as they don’t last too long and make me think the dull, aching rings of pain aren’t actually ventricles in my brain engorging with cerebral spinal fluid. When the ventricles get bigger, that’s when I have to worry about excess pressure on my brain. I have to wonder if my shunt is working. I have to constantly monitor my “tension” headaches to make sure i am not showing signs of shunt failure, like nausea or vomiting. I am constantly wondering, “Is this ‘just’ a headache or do I need to call a doctor to rule out shunt failure?”

Migraines are their own special kind of Satan’s Playground. The pain settles into my right eye, feeling like I got punched, and radiates down my neck to my right arm and fingers. If the migraine is bad enough, eventually I might even get some numbness in the right hand and fingers. How fun. (It’s not a stroke. I promise.)

My head and neck are my two main sources of pain but I also have to deal with soreness and aching in my shoulders, arms, hands, back, legs and feet at times.

Living like this is so incredibly isolating. Someone my age should not have to deal with all of the physical BS I do. I feel like such a freak. That’s why when I get something “normal” like a sore throat, I’m happy. I feel more like the average Jane who is basically healthy than my regular self. Part of me wants to scrum from the rooftops, “Hey world, I’m still a little bit normal!”

I don’t remember what normal is anymore, though.

Chronic Pain Is Worse Than Writer’s Block

I don’t blog or write as much as I’d like to. There are a lot of reasons for this but the biggest one is that i live with chronic pain on a daily basis. Since I was injured in March 2005, I have not had a single day where I have not experienced some kind of pain.

My head and neck are my two main sources of pain but I also have to deal with soreness and aching in my shoulders, arms, hands, back, legs and feet at times.

The long and short of it is that pain makes it really hard to write. I don’t want to write when I’m in pain. There are a lot of days when I simply don’t care about stringing two words together. If I could’ve gotten away without writing today, I would have. My neck hurts like heck and I would love to just rest it on a pillow and read a book. But I know that if I want to be a better writer and activist, I need to write/blog more. So I’m forcing myself to type this. The pain makes it hard to concentrate, though. When I’m writing, I often stop several times to play a quick computer game or check Twitter.

The pain makes me doubt myself. It makes me think I have nothing to write about, nothing to blog about. All I can think to write about is my pain and who really wants to read about me whining about that? Yet chronic pain is a problem for me and so many other women, so it should be talked about, right? I feel torn up and confused inside because I don’t know how to make my personal experience with pain political. If this blog is about disability and feminism, I don’t want to just write about my own personal struggles. However, at the moment, my struggle with pain is very personal. It is disabling. It is what I am thinking about nearly every moment of every day.

Where does that leave this blog? I’m not sure. Rather than not post anything at all, I think I am going to start writing more about how pain and disability have affected me. I have no idea this will shake out but I hope you’ll keep reading.

xoxo,
Danine