I may be “disabled” but I’m sure as heck no victim.

by | Coping With Chronic Illness | 10 comments

Carnations © Sarah Marie Lacy, 2010. Acrylic on canvas, 16"x20"

Carnations © Sarah Marie Lacy, 2010. Acrylic on canvas, 16"x20", framed.

On Monday, I was featured in an article in our local paper, the Guardian. (You can read it here.)

It talks about my journey from being very ill, to creating a life for myself that I love. It’s a great piece and the reporter, Mary MacKay, really captures my voice and my energy.

I’ve had some wonderful, positive feedback from it, but I’ve had a few people respond with an attitude I haven’t seen in a long, long time – pity.

“Oh you poor, poor girl. You’ve suffered for so long.”

Come again?

I know that this attitude comes from a place of well-meaning. They see my pain and they want it to be fixed. They only see the suffering, and maybe that’s what they can relate to, or maybe they have their own beliefs where you can’t possibly be “disabled” and happy.

I’m about to say something really blasphemous here…

Some days, I forget that I’m sick.

It’s not that I don’t have symptoms – I do. I can still get some pretty hefty pain. My energy levels can be wonky and unpredictable. I may need more naps than the average person.

It’s just that it’s no longer my focus. I don’t give it the time of day anymore. There’s no drama around it. I have an attitude of “Okay, this leg is in some serious pain. What helps? What can I do?” And then I do it. Sometimes that means going to sleep. Sometimes that means hot water bottles.

But I am no longer a victim.

And that’s what bothers me about pity.

Pity assumes that I am helpless. Pity only sees my suffering and magnifies it. Pity doesn’t empower me to create a fabulous life despite and alongside chronic illness.

It just assumes that suffering is the major focus of my day and that’s the end of it.

Pity misses the other 75% of my story.

I may have pain and I may have weakness, but my life is f***ing fabulous. I have done more than most 40 year olds. I live an intentional life.

I do what I love every day. I live exactly where I want. I get to make beautiful things, inspire people, and change the world. I am in a mutually adoring relationship with a guy who can make me laugh till I cry. I am supporting both myself and him (a student) with the money that I make.

Yes, that’s right. The disabled girl supports herself and another person. We split some costs (he contributes where he can) but I just make a lot more money than he does.

And let’s face it – I’m going to France for half a year to study what I love with some of the best artists in the world. I don’t need any pity.

There’s a line in the movie Frida, about the life of artist Frida Kahlo, where she says her only goal is to be a self-sufficient cripple. I first watched it about the time I started turning my life around and I clung to that like Rose clung to her floating door.

I wanted that. I wanted my independence and my freedom back. I’ve fought long and hard to get here, to be a “self-sufficient cripple”. To my own surprise, I’ve  moved past that – I’m a self-sufficient artist now. I’m an Independent Woman, she said tongue-somewhat-in-cheek.

So please, for the love of all things chocolate, don’t pity me.

And don’t pity anyone else either. Look for their strength, not their fragility. Look for where they shine and not where they fall down. Acknowledge their wins instead of focusing only on their losses.

It’s not about disregarding trauma or pretending that it isn’t happening or acting like the world is all rainbows and sunshine.

It is about respecting their wholeness as a human being. It’s about acknowledging their strength and courage in the face of pain, loss, abuse and grief.

It is about celebrating their strength and their willingness to carry on and then encouraging and supporting them in doing that.

Life is about just that – life. Focus on the life that is flowing through their veins, not just the loss. Focus on their power, not their pain. Respect them by seeing them in their entirety, not just in their smallness, but in their largeness. See the whole scope of their spirit and their life force, not just the places where they have shrunk from pain.

My principle at school was the first person to acknowledge me in my entirety when I first got sick. Everyone around me didn’t know how to react – they responded with fear, pity, and grief.

He looked me in the eye and said, “You are one courageous girl.”

In one sentence, he acknowledged both my pain and my strength. He acknowledged both my loss and my will to live.

It’s all any of us try to do. We try to live with the grace, dignity and courage that we all possess.

We’re all fighting the good fight. Don’t degrade it with pity.