Got Compassion?

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An original piece of my artwork inspired by two beautiful compassionate children – Pippa and Sunna

 

“Oh I don’t know, Tourette’s can be kind of fun. I knew someone with TS and he would throw the “F” word around all the time,” the stranger said with a laugh.

Silence. Suddenly I was bombarded by the image pain of Jake sticking his finger down his throat hundreds of times a day. I was reminded of the time I stood in the kitchen doorway, unknown to him, as he repeatedly punched himself in the stomach, tears running down his face. He was six. I recalled the angry stares of strangers who judged him every time we were out. And I felt my words stick in my throat as they so often do.

Sadly, this is a scenario that has played out in many forms over the years. I have since learned to speak out for Jake and other people like him who live with the suffering that accompanies Tourette’s and OCD. I can assure you none of them are having fun.

When Jake was diagnosed I was under the impression that his biggest problem would be peer bullying. Kids can be cruel. What I have learned instead, is that adults tend to be the worst bullies of all.

Over the years I’ve wondered about this. Why, when adults have so much more life experience, are so many lacking in compassion? How do they justify such insensitive remarks?

As adults we tend to inhabit our own space, both physically and mentally. The longer we remain earthbound, the easier it is for us to grow cynical and care less and less about the “big” world, concentrating instead on our personal lives. Unless a person’s life has been touched in some way by disability, and special needs, I think they just don’t get it. Instead, they are driven by the media’s skewed stereotypes.

All people with Tourette’s curse. False. Less than 10% are afflicted with coprolalia – a tic that causes them to use obscene language. I once met a twelve year old boy who was deaf because one of his tics was to box himself in the ears. I’ve seen a fifteen year old girl in a wheelchair because one of her tics was squatting while she walked. Hilarious,right?

All people with OCD are neat and are germaphobes. Just give them some hand sanitizer and all is well. False. Jake’s OCD immobilizes him at times, making him unable to leave the house. He struggles every day with repetitive thoughts and fears, causing him severe social anxiety. Good times, yeah?

Clearly, there is no humor in these conditions or any others.

So what’s different about how children process these differences. I think that children are simply more connected to the world than we are. They are newer beings on this Earth and are naturally curious. They haven’t been media-trained in the ways of callousness. We have so much to learn from them, and such a responsibility to protect them from becoming hard-edged.

But I think it’s important to note that compassion is more than just caring. As connected Beings we all need to practice empathy more than sympathy. And if we allow ourselves to reconnect with our spiritual side (not religious – that’s completely different and man-made), we will realize that it’s our natural state because we are all connected.

So how about you? Got Compassion?

Just Keep Moving

*This post is honest. It is painful to write, but I feel that it needs to be said for those who can’t say it.

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Jake on a very bad day

My son bears the weight of Obsessive Compulsive Disorder (OCD) daily, but this post is not for him. This post is for the parents and loved ones who must learn how to live with OCD as well. I do not wish to take away from the burden he carries; believe me, I have seen him crippled by this intrusive, invisible bully and I wouldn’t wish it on anyone.

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Half a day’s worth of gloves

But I am here to acknowledge the others who are involved in this journey alongside them. I am here to remind you that we, too, face a bully. However, our bully is easily recognizable every time we pass a mirror.

How often have you retreated behind the safety of a closed, locked door and screamed into a pillow? How many times have you been blinded by the hot tears of frustration as you drive anywhere just to get away? And how familiar is the feeling of guilt that gnaws at you for all the times that you lost it, yelling at your son out of anger? The emotional turmoil is unrelenting.

I have slammed doors and punched pillows.

I have felt so much pent up rage that I’ve resorted to hitting my thighs with fists clenched so tightly that my nails have drawn blood, just so the bruises on my legs hurt more than the ache in my heart.

I have escaped the tension with a few too many glasses of wine. And then slept through my sadness.

I have sat outside my son’s door listening to the quiet of him sleeping, pretending that he’s just like everyone else. Enjoying the silence maybe a bit too much.

 I have driven to an abandoned lot, turned the music up as loud as I can and screamed until my throat was raw and I was out of breath.

And each time I’ve berated myself with ugly, angry words.

The same kind of sharp words I have heard my son use on himself on his worst days as he curls up in his chair, the chair that is off limits to the rest of the family because we aren’t clean enough, and cries until he has nothing but shadows left inside him.

The same words I save for the days when I hate myself most. You are worthless. You are a burden. You can’t even help him. Loser. I can’t do this anymore.

 There are times that I think if only I had done this instead of that. Said these words instead of those. Maybe things wouldn’t be so bad for him. Maybe he would be better. Maybe I’ve made it worse.

I make myself physically ill worrying over the things that I think I did wrong. But the truth is that on any given day, I’m doing the best I can. My best may not be perfect, but I. Am. Trying.

There is a song in the Sondheim musical Sunday in the Park with George that really resonated with me one day when I was out trying to walk off the voices in my head that were telling me how wrong I was.

Stop worrying where you’re going – Move on.

If you can know where you’re going, you’ve gone.

Just keep on moving.

 I chose and my world was shaken- So what?

The choice may have been mistaken,

The choosing was not.

You have to move on.

 As parents and caregivers of kids with special needs, it’s easy for us to forget that the best thing we can do is to keep moving.

Some days we will move backwards, tripping over yesterday’s mistakes. Other days we will move forward full of a hope we can barely see. But the only thing that matters is that we are moving. We may not know where we are going, or how we are going to get there, but we will get there.

Yes, we are exhausted. We are overwhelmed. We are heartbroken. We are afraid. We are angry.

But we are here. We are here and we are moving.