Open Letter from Pain Central

Goodness gracious. What am I going to do about this body. Ouch! It hurts!! Well, this may not be my […]

Goodness gracious. What am I going to do about this body. Ouch! It hurts!!

Well, this may not be my best day to write but they wanted me to explain this—chronic pain, that is.

Ouch! Do I really want to write about this? Do YOU want to read about this? Maybe not, but let me try.

First of all, there is a myth out there about this condition being my fault. This is not my fault. End of discussion, sort of. I’m not going to stop there. The causes can be many: traffic accidents, work accidents, sometimes wars and other violence, illnesses—even not being treated well by other people. And sometimes—sometimes—we honestly do make mistakes with our bodies with what we eat, how we live our lives, things that often can harm us; and yes, can cause us illnesses, disabilities, and pain. Ouch!

I have fibromyalgia. This is a chronic (meaning constant and on-going) pain condition that involves all the muscles and connective tissues of my body. Ouch! This means that my muscles are very stiff, can get weak, hurt a lot and are prone to pulling or tearing easily. This means I get hurt more easily than others. For instance, if the vehicle I’m being driven in bumps a lot, makes sharp turns or sudden stops, it may injury me. In the cold weather I can’t go outside when it’s below forty degrees or so without it causing severe pain. In temperatures below freezing, my body can collapse. Oops! Not good.

Did I say I have spinal damage? Lots. From my neck down through my lower back; some spinal injuries are from long ago, and some have developed over the last thirty years. I also have arthritis in parts of my spine, hips and other joints.

So all this limits my life a bit. Yep. And I don’t like it. In fact, wanting to or not, I get mean sometimes. I get impatient with people, even when they’re trying to help me.

Sometimes I want others to understand that it is not my fault that I get impatient. Or that they get very impatient with me. It’s just that I have to take a lot of time and do things slowly so I don’t hurt myself, don’t exhaust myself. It’s amazing how other people are so impatient. Especially behind the wheel.

So what helps? What has kept me growing, changing, striving and hoping over the years?

It helps to laugh. Really laugh. When I was first diagnosed with fibromyalgia, and started acknowledging how much pain I was in … anyway, when I started dealing with it, I started looking up Joke Web sites. Good jokes now, not the ones that make fun of others, but instead make fun of life. Some of them are children’s jokes. You want to hear one?

“What do you call a group of rabbits walking backwards…a receding HARE line.” Ouch!

The first person who made me laugh about disability was Kathy Buckley, in a PBS performance she did a few years ago, called “No Labels; No Limits.” She’s the first hearing-impaired comic in the United States and she’s great!

It also helps to do things that are FUN.

Micheline Mason, an inclusion activist in Britain, says that one of the best things we disabled people can do for ourselves is to be gentle with ourselves in public spaces.

Find friends who are willing to go to the plushest, most pleasant and caring atmospheres possible, with the healthiest food to eat. My favorite coffee house is the Fireroast Mountain Café on 38th Street in south Minneapolis. They have a large cushy couch, and unless I have to share, I make myself and my cane at home on it. It’s pleasant to share time and food or tea with someone and not be in lots of pain by sitting on hardback wooden chairs. Look for the places that care about comfort and softness, and your health! And places that treat you like you and what you deal with matters.

I’ve learned how to do that more in recent years. I grew up very serious, very poor working class, and didn’t know how to change my life to learn how to relax more and not hurt myself. Now I do art when I can manage it physically. I like to listen to music and to sing. I’m still learning to be gentle with myself. When I can, I go to performances of art and music. I like calming things; noises that are raucously loud or abrasive can actually activate the nervous system, and make me hurt more.

And one more good thing. Here in Minnesota, it’s really not always OK, from a cultural point of view, to have feelings. Yet, I have anger, fear and grief about this pain. Sometimes the anger itself can cause me pain. I know when I’m angry. I know when I’m scared. I do best with people who know I am good, who know that I matter, who know that crying, laughing, or healthy anger make for less pain. And who allow me and support me doing this. I have sobbed myself to sleep with this pain, avoided hitting or yelling at others by beating out my pillows (my poor pillows).

It’s hard—but important—to remember that sensitivity is a human quality, and emotions are a response to pain, joy, grief or happiness. And we are certainly human. Ouch