Becoming Visible

Should I say these things out loud?

Several days ago I decided to let friends and colleagues know about my blog. I sent out a link and asked for feedback.

• And some advised caution about Isabel seeing this blog and suggestesd more anonymity.
• Another pointed out that the content suggested pain that would be better dealt with through other means; my slider bar is really in the wrong place and needs fixing.
• Some felt that sharing this unexpurgated view could be useful for others facing the same predicament.
• I'm certain that others are perplexed and perhaps concerned.

All of this is very helpful. Meanwhile Isabel continues and I continue in an automatic script that pits my desperate desires for her against the reality of what her disability permits her to see.

Although this sounds like a sad realization, coming to this bare bones conclusion may provide the best opportunity for finding a more productive way to support her.

Becoming Undone on Friday

And I held open the door for a woman and her stroller on Friday morning at 6 am at Starbucks. And I remember her not noticing sufficiently and feeling my own attitude assembling towards the woman who felt entitled at 6 am in Concord at Starbucks.

And in line I turned to her stroller and saw a too-large child with coke-bottle glasses making sounds that scared me - that made me realize something was terribly wrong.

And the Starbucks clerk had already poured her drink without asking - knowing from many, many visits what this woman needed. The woman needing to be gone away with as little contact as possible.

I saw this and in 30 seconds I started to cry. I know what those glasses mean. I know what it means to look at a stroller and assess a body that is too large and sounds that are too old and too meaningless.

And I ACTUALLY thought of hugging the woman and telling her I understood - not to run away - not to hide. I stooped to play with the child - to make it all normal. But the woman was anxious to be gone.

In the car again all I could think of was string theory. STRING THEORY.

This is why. The 10+ dimensions that need to be accounted for cause me no concern. I understand parallel universes. I know that perfectly normal people that wait for coffee 10 feet from me have NO IDEA that any other universe of any other set of dimensions exist inches from where they stand.

I know that the reality of Isabel is miles and oceans and nations away from the kind people who wait in line with me, who sit next to me at church, who work next to me. And the gap between us is so immense. They have no idea that any other life exists.

I wanted to cry with this woman. Part of me worried that she would not understand and part of me worried that she WOULD understand without any context needing to be exchanged.

It is late on a Saturday night. S.

The Terrible Slider Bar

Conscious choices about framing the issue

This week I was explaining a recent sense of impatience with Isabel - a deep seated sense of impatience that catches flame too easily. A friend listened for 15 minutes to my monologue. Her reply was:

"Perhaps if you could re-adjust your percentages - your vantage point slider bar - so it was more about how her condition must make her feel and a little less about how it makes you feel - you would be less angry."

More interesting than any reply I had was that I started to reply without really knowing what I was going to say. Usually I follow a sequence that consists of 1) thinking about what someone has just said, 2) determining what I should say about what was just said and 3) compose a reply that is appropriate which consists of what I really think and what I think is acceptable to say. This process usually takes a few minutes unless it's a well worn topic and I have a welll worn position.

And I just started to talk. And was startled by what I heard myself say - which came from some other sentient part of my body that I was unfamiliar with. And that sentient part said:

"If I thought about how she must feel with her life, I could no go on."

"So I have sort of permanently shifted the focus to providing a stream of helpful criticism that assumes that life from her vanatage point is like life from my vantage point. All she needs are a stready stream of helpful hints ("Look people in the eyes when you talk." "Brush your teeth everyday." "Give lavish Christmas gifts to everyone that may have influence over your success in life.")

I was stunned by what I heard myself saying. So stunned, that I am still trying to figure out the enormity of what this means to her and to me with her. And let me tell you quickly that I do NOT have a nostrum with which to end this post. But I am of the belief that this has high importance - even though I don't really know what to do with the information. And I offer the suggestion for parents to ask this question of themselves and their significant parental community and listen to what is said.