Saturday, November 21, 2015

A Few Words on Compassion vs. Pity

When your husband drives his wheelchair with his chin, you inevitably get a lot of stares when you're out in public.

When I tell people our story, I am typically met with furrowed brows, often deep concern, and usually looks on faces that say Oh my god; I am so sorry.

Sympathy is a part of our life. Plain and simple.

And that's okay.

Well, mostly okay. Because sympathy is one of those emotions that swings wide.

Here's what I mean.

When people tell me - tell my family - that they are so sorry this has happened to us, that they can't imagine the changes and hardships we've had to endure since my husband's paralysis, that's okay. Because that's compassion. And we've met a lot of compassionate people on this journey who have reminded us of the goodness and kindness that still exists in this often bleak world.

But when people look at us and they in turn begin to wilt like a neglected flower, their faces melting into a mask of frowns - or tell us bluntly that they wouldn't want to live if they had been injured like my husband - that's not okay. Because that's pity.

I'm not here to tell anyone how to think. People are certainly entitled to their own opinions.

But I am here to tell those people who think that our life is pitiful now that my husband is a quadriplegic - who think that his existence and our family's life plan is now meaningless because he is paralyzed from the neck down - that they couldn't be more wrong.

Yes our life is hard - infinitely harder than it used to be.

Yes our life is challenging - who's life isn't?

And yet through all the change, all the tears, and all the stress of flipping our once upside-down world right-side up again, we've discovered that this new life ...

... is still good.

And that's probably because we've worked hard to make it that way.

I remember having a conversation with a new friend shortly after Jeff had returned home after many months in the hospital following his injury. She is married to a ventilator-dependent quadriplegic, and she told me something that at the time I had a hard time understanding, but now makes perfect sense.

She told me to remember that we still have control of our life.

Back then, things were still wildly out of control. I felt we were on a tilt-o-whirl of doom and Life was the cruel ride operator jerking us around and laughing the whole time.

Only in the last several months - almost two and a half years after the injury - have I felt we're finally getting that control back.

We've made big changes in our life. We've moved to a new state. We've modified our home to make things more user friendly. We've established new routines. We've held on to old friends and have learned to communicate with them differently (for example, Jeff still has friends he used to game with on Xbox. Now he plays online chess with them instead). And we've made new friends and new allies in the disabled sector who are living the life we live.

We've done all this because we still have control.

Because we've had help and encouragement from compassionate people.

Because we don't allow pity to be a part of our life.

I was speaking with a neighbor a couple weeks ago when I went out to get the mail. She hadn't yet met Jeff, but she was aware of our situation (word travels fast when you're the only quad on the block). She asked if Jeff was able to use our pool. I told her he wasn't - that we mainly got a house with a pool for our daughter and other family and friends to use.

She further inquired that if we were to install a pool lift, would Jeff be able to go in the water then? I didn't mind the questions. Questions lead to answers, and answers lead to knowledge.

So I explained that because of the ventilator and various other holes and tubes in Jeff's body that getting in the pool was simply out of the question for him.

She looked as if my words had taken the wind right out of her sails. I thought she was going to cry - right there in the middle of the street. I almost felt as if I should comfort her somehow. It was a very bizarro world kind of moment - a near stranger on the verge of falling apart because MY husband is paralyzed and unable to get into a swimming pool.

"So then he can only be in the bed or in the chair?" she asked, in a way that sounded as if she'd just eaten something unappetizing. Her expression mirrored her tone.

It took me a moment to answer, but I eventually got out a "Yep" with a little nod.

I wasn't sad.

But I was rendered almost speechless over how grief-stricken she appeared to be. 

And in that moment, I realized that how she sees Jeff's wheelchair and how I see it are vastly different. 

She sees is as a bona fide electric chair - the one convicted criminals climb into right before they breathe their last breath. A true death sentence.

But I see it as life. Jeff's chair basically functions as his legs. It's how he gets around. It's how he dances with me to 80s music in the living room. It's how he sneaks up on Evie to scare her, even though most of the time she knows he's coming. But sometimes she doesn't, and in those times there's always startled screams and laughter that follows. It's how he gets into our van so that we can get out of the house and experience the world.

His chair is independence. And for someone with zero use of his limbs, his chair is an amazing alternative.

I get why our neighbor looked so bereft when she talked about the chair - I really do. Because I used to be on the other side, too. When Jeff first got into his hospital room at the rehab facility following his accident, parked directly in front of his bed was an empty wheelchair.

The room was silent. It was just me and him and the chair.

And the chair stared at us - at him - like it was the bull and he was the matador. A pissed off bull staring down a paralyzed matador.

"I do not want to drive that thing with my chin," he whispered to me.

"I know," I said quietly. "But you have to. That's why we're here."

And so he did. And he drove it with mad skills right from the beginning. And every day we hated it a little less.

And now the chair is just a part of him. Part of our family. Part of our life.

* * * * * 

You see, things don't have to be picture perfect to be beautiful.

Things don't have to be cut and dry to make sense.

I hate that my husband is paralyzed. But I don't hate our life.

And the stares ... oh the stares. They will always be there. The curious onlookers, the looky-loos, the honey-badger-don't-give-a-shit-open-mouth gawkers. They're just part of this package deal.

So stare if you must - I know it's not every day you see a handsome guy driving a wheelchair with his chin.

But stare to learn.

Not to judge.

If you look closely, Jeff's shirt says: 
Keep staring. I might do a trick!