Saturday, October 22, 2011


I have lived with an illusion for most of my life – one I may need to let go.

The illusion is that if I can explain something well enough, I can help others understand that something – and not just understand it but empathize with those most affected.

Faith in my communicative power and capacity to unleash empathy has been great – greater than it is today. And I am not certain of what has made it less now or even how the lessening happened. I am also not sure whether it is a temporary or permanent condition.

As I said, I may need to let go of an illusion or simply ride out a bout of disillusionment.

Perhaps chronic egotism is to blame: I believe I have the power to impact change. That belief alone is not egotistic, for every life impacts change, and such change occurs both actively and passively. It just does. But I may also harbor arrogance about my capacity to influence change.

May? Delete that word. I do.

I arrogantly believe I can influence change for the better, and I believe I can use the power of language – descriptive words and storytelling – to help someone transcend apathy, misinformation, disbelief and denial. I believe in the power of communication. I believe communication aids understanding, and that understanding births empathy. Empathy moves people to action. Maybe.

I am not too hard on myself for holding these beliefs. For I have made a career of persuasive writing. It’s what respected public relations practitioners do with intention and integrity. I hope I am respected by those with whom I have worked. I hope so.

I know that I could not write about a company, an organization or a cause that I didn’t believe in. I could not. Integrity requires me to align my soul with my role. More likely something greater than integrity should be credited, yet I lack the word for what that might be. (So much for my language skills.)

Imagine my thrill when I have made a positive impact – when I have helped increase attendance or donations or supporters for something I believe in. Or greater still: understanding.

But it doesn’t always work. And sadly, it often doesn’t work when something important is at stake. Like helping someone of power or influence understand how his or her thoughts shape decisions and actions that affect the lives of those more vulnerable. Like persons with disabilities. Especially children and adults with both intellectual and physical disabilities.

When financial decisions are at stake, when laws that regulate care are at stake, when attitudes about what might be possible are at stake, who has the power to communicate? What – exactly – is at stake? Quality of life – both for those living with disabilities and for those fortunate not to be.

When I attempt to communicate on this topic, language often fails me. Rather I fail at using the only language I know. And the process of even trying feels muddled. The weight of the potential impact is crushing.

And then passion congeals with frustration.
Anger mingles with aggravation.
Good intentions ramble past impact.

Finally, failure fuels futility.

It is never about fairness.
Yet, somehow, what is at stake should my words fail isn’t fair.

I want to tell you what it is like raising a child – now technically a man – whose life will forever be shaped by what he can and cannot do because of his birth condition. And what I can and cannot do for the same reason.

I want to communicate to you my lack of regret over his life and my great regret about circumstances that others cannot understand. I would hope you could understand without bearing the stigmas and prejudices and injustices that come because of those circumstances. But I am not sure that is possible.

I want you to care about things you do not know.

But I carry no illusion that is possible. Not anymore. Still, I don’t want to be so disillusioned that I quit trying.

Sometime soon I will tell you about spending the night with my 20-year-old son during his sleep study at the Mayo Clinic in Rochester, Minn. How I laid awake for an hour listening to him breathe and listening to the gaps of time when he wasn’t breathing. And how I wondered if the doll he still sleeps beside will outlive me and continue to remain close to him. And how I imagined bestowing that doll with mystical power so it can watch over him and keep him safe. Especially when his father and I cannot be around.

Sometime I will attempt to share that.

Or maybe I just did.

I carry no illusions that what I want you to know and feel is possible for you to attain. But I want to try. And if words fail me, perhaps moving pictures will do.

I don’t know. I can only try. Because I certainly am not good at letting go.


1 comment:

Mrs. Olson said...

Wow, Joy. This is beautifully do have a gift. Never doubt that. I wish we lived in a generous nation where people believed that we have a responsibility to care for those who can't care for themselves...who felt the lucky should share with the less fortunate...who held compassion and commitment to these values...but the US has disappeared, it seems. To be a "bleeding heart liberal" means to be some type of freak, and to scream for smaller government is a must to be elected. Until they need help themselves, they will object to it, I think. My life is what it is because our government helps families whose father is dying (and later died), whose children need financial help going to college, whose mother must raise a child alone because his father died. But, those who have blessed lives seem to think it's because they somehow did things right. I guess I'm rambling...I need to blog, too. Really beautiful stuff here, Joy. Keep trying.