Susan's Blog

Sunday, September 19, 2010

Open your eyes

The other night I gave a brief talk at an organization called Vinfen. The oddly-named Vinfen offers services, residences, and supports for those with developmental disabilities throughout Massachusetts.  They chose their name (a contraction of the street names “Vining” and “Fenwood” in Boston, where the organization was founded) because it would have absolutely no stigma to it.  I liked Vinfen before I got to know the place, because Nat had gone on some fun social outings with some Vinfen clients who live nearby.  I liked Vinfen even more when I heard about their thoughtfulness around stigma, and how it extended to everything they offered, including how they named themselves.  That night the talk I gave was about stigma, negativity, and the baggage we carry around about ourselves.  The difference we experience when we let it go.

I’ve talked and written about this concept a lot.  In the Survival Guide, I tried to make changing perspective a central theme, that the more we allow our vision to be clouded by negative preconceived notions, the less happy we will be.  I have found time and again that going into something with clear eyes, as much as possible, is mostly a good thing.  The truth is multi-faceted anyway.  Why assume you have the truth in your grasp, when things shift and evolve?  Evolution is the way of all things, from the way Man came to be, to the way you and I came to be.  Cells die and regenerate, dreams die and are reborn, and our own selves reshape according to whom we meet and what we do each day.

My most unhappy moments are when I am stuck, mired in some thought or feeling that will not move forward.  I have always been prone to obsessions, and from time to time, I have been trapped in one obsession or another.  The terrible thing about obsession is that you know in your mind that things are one way, but your gut, your other parts, will not see it that way.  Obsession is one area in my life where my thoughts have no power, my intelligence loses its ability to light the way.

Lately I have been — ironically — thinking a lot about obsession and I see suddenly that it is related to baggage and negativity.  For example, what I tried to illuminate at Vinfen the other night was that by breaking free of the ideas society foists upon us about disability, we can find a new truth.  We can evolve our view of disability by breaking the pattern of destructive thinking.  We do that by deciding it is okay to do that.

During one of the darkest periods of my life, I eventually learned that the only way out was by changing my behavior.  Yet at the same time, I was in therapy, where I was learning all about why this was happening to me.  So I don’t know which came first, the chicken or the egg, the behavior or the awareness, but there was one beautiful shining day when I unstuck myself.  I remember the moment.  I was walking somewhere.  The feeling came over me, to backtrack.  That horrible sweating panic that I had to.  But I did not.  I walked a few steps, realized I was walking forward, and that maybe I was going to do it, to be different this time.  I kept walking.  Soon it was just too late to go back.  I walked, and that was that.  After that, I had that experience to draw upon, where I could say to myself, “You didn’t go back, and you were okay, so you don’t have to go back now.”

The thought followed the action.  But the action was born of great reflection.  And so for years I have been thinking and articulating this idea that we don’t know, we really don’t know all that is true about our children and their disability, their potential.  I am constantly being splashed in the face by Nat’s complexity; he gets me unstuck every time.  Just yesterday, in Starbucks, Ned was asking Nat, bugging him for a bite of his chocolate chip cookie.  These days Nat just does not like to share.  He said, “Nooooooo.” I wondered if he would share with me.  I knew he’d say no, but I also kind of knew that if I begged him or something emotional, he’d say yes.  At least, I hoped he would.

So I asked him for a bite of his cookie:  “Nat, can I have a bite of your cookie?”


“Nat!  What if I cry?”

He quickly thrust the cookie towards me, saying quietly, “Bite, yes.”  I laughed in delight and told him that I was just kidding.  Perfect.  I knew it would happen that way.

Of course we can predict our children’s responses to things, of course we know them the way we know the sun and the ground.  And yet we don’t know them, because there is always the surprise, the growth, the change.  One day soon Nat might be back to sharing with everyone, no guilt necessary.  Like our own bodies’ cells, our children are constantly remaking themselves, reaching tendrils towards the sun.  There cannot possibly be a One Truth about them, because nothing in this life is static — except for our own limited perceptions.


“The thought followed the action. But the action was born of great reflection.” I like that a lot.

— added by Aron Griffis on Sunday, September 19, 2010 at 8:59 pm

Sue, a post lovely and true.

— added by Melinda Coppola on Sunday, September 19, 2010 at 9:01 pm

The same thing happens to me when I ask for a hug or a kiss, get rebuffed, then do a fake “boohoo”. I get some love and a smile every time, and every time I’m both thrilled he complies and “gets” that it’s a game. It’s the little things…

— added by kim mccafferty on Monday, September 20, 2010 at 12:20 pm

…”the way we know the sun and the ground.”

…”so you don’t have to go back now.”

Thank you for the many ways you have influenced my “reflection”.

— added by Timmy's Mom on Tuesday, September 21, 2010 at 5:03 am

%d bloggers like this: