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

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.

Comments

  1. says

    Yes.

    Yesyesyes.

    A thousand yeses.

    You inspire me x 1000.

    And this?

    “Look for where they shine and not where they fall down.”

    That says it all, doesn’t it?

    Rock on, you. I’m seriously glad to know you.

  2. says

    YES!

    I know they mean well, but I hate it, I really hate “Oh it must be so HARD for you!”

    No, I have to live with this every day, it’s not something I’m entirely happy with, but it misses entirely the fact that it isn’t all there is to me.

  3. says

    As you can probably imagine, this really hit home for me.

    To be honest, I do sometimes throw myself a pity party when the ME’s biting hard and nobody really “gets it”.

    Of course, it’s not their job to “get it” or empathise or make room for me, just as it’s not something I need to focus on.

    “Live with the grace, dignity and courage that we all possess” – that’s something I always try to honour, although I do my best not to beat myself up when I don’t ;)

  4. says

    @Fabeku – Yep, it definitely says it all. And I am seriously glad to know you!

    @Joely – Yes! It ignores all of the other excellent parts of ourselves. So frustrating.

    @Steve – I cannot count the number of pity parties I’ve thrown myself ;)

    It can be hard balancing the need for empathy with the need to be respected for our strength. I think that’s why acknowledging courage can be so powerful – it sees the pain and the strength.

    All kinds of hard though. I so hear ya.

  5. says

    Bravo! There are too many people debilitated by hangnails and such. Ten or so years ago my RSD owned me. Now I am in control and raise alpacas instead of staying in bed and hurting. I figured out that if you are going to hurt anyway, maybe you should go for what you want in life.

    Self pity is more dangerous than almost anything and wallowing in the pity of others is as dangerous as wading among sharks.

    You and I are lucky, we get to live because we want to and life is not just passing. (There are some spells when I wonder if survival is so great.) But I own my life; I pace myself; I do a lot more than exist in bed as I once did. It is possible to do so much if you take your time and figure it out. I’ve traveled solo in Europe, married and raised a son and run a ranch. It’s not always easy, but like you said, I do it because I want to do it and I do it with very little medication. I want to experience it all, not the haze of pseudo-comfort.

    Today I am experiencing intense pain, but there is so much beauty I can handle it: sunshine, wind, alpacas. Yes!

    I don’t pity you, I am proud of you. Go for it all.

  6. says

    I have played the ‘don’t tell anyone anything is wrong’ game to avoid the fallout you talk about here. The problem was my disappearances when I was too tired or too sick and then having to explain them. That said, I am not sure I would have the courage to paint if all this had not happened.

    You rock – and you are an inspiration. You have the right thing to say just when I get a little battle weary… Stay strong.

  7. says

    I love that I know you. You are SO inspiring. In fact, you make the word ‘inspiring’ seem insipid because it just doesn’t describe what you actually are.

    Much love. xoxo