Mattilda Bernstein Sycamore

Possibilities and limitations, possibilities in limitations

Filed By Mattilda Bernstein Sycamore | March 17, 2008 8:15 AM | comments

Filed in: Living
Tags: child abuse, fibromyalgia, gender fluidity, incest, transgender

Katia says when she writes something personal, she worries that she'll remember what she wrote and not the actual memory. With me it's the reverse -- I worry that I won't remember anything if I don't write it down. In part that's because I blocked out most of my childhood and writing is such an important part of my process of remembering. And really it does help to write things down as they're happening -- even if I write something different than what actually happened, I look at the writing and I remember the differences.

I'm actually feeling some of that pressure right now -- the pressure to write something down immediately, otherwise I'll forget. Because I had this great conversation with Bruin earlier (two weeks ago) and it stimulated all these ideas -- just like but not just like my conversation with Katia, that just ended (two weeks ago) so it's fresher in my mind and I feel less frenzied. With Bruin the conversation went in so many different directions, I wanted to write an outline right afterwards but my right hand was already twisted in that annoying way that happens after I've cooked, so I didn't want to hurt it more. I thought I would just start writing, but then my head clouded over I got so tired I couldn't think -- ironic but not ironic, because part of what we're talking about was my fatigue and how it impacts my life. So then I did some feldenkrais movements, and Katia called so that was a good escape actually. I mean my brain started working again.

Now maybe I'm more tired, and my right hand is still hurting -- but thanks to the voice activation software I don't have to use my right hand much to write, which is a relief. Except that I just used the mouse to insert "but thanks to the voice activation software." I guess I could have said "select I don't," then "unselect that," but I just had to type that sentence since I don't know how to get the software to type something that's also a command.

I think I'm ready to claim the word disability....

I'm scared of it too, because I'm afraid it means I'll never get to the other side of all this exhaustion and pain and the way it impacts my life in dramatic ways. Even though I know "the other side" doesn't necessarily exist, there are different sides to it every day and some of those I appreciate. Like the way it makes me think about my needs more, and other people's needs, even if sometimes I wish I didn't have any needs and that I could do more for other people. But that's always been the case.

I'm also scared of claiming the word disability because I don't want the place where I am right now to become permanent, and I'm worried about invading other people's spaces that feel more permanent to them or to the outside world. And maybe more inspiring. In some ways it's kind of like claiming transgender, I say that I'm on the transgender continuum, because I'm afraid of taking permanence from those who want it. Even though transgender is not supposed to be an identity about permanence, for many it has become a transition from one identity to another -- I worry that my fluidity makes me less legitimate. Even if fluidity is why I want to embrace transgender. Obviously there are people who don't want the permanence of disability, and I'm afraid of being that shameful figure unable to glow with the possibilities of bodily limitations. In actively working to overcome disability, am I an embarrassment?

Mattilda blogs at

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embarrasment? no, definitely no. aren't our limitations all fluid? i can't do the same things that i could when i was twenty. and i couldn't do at twenty what i do now. be thankful for all that you have and just live....all of life is a journey...

I'm also scared of claiming the word disability because I don't want the place where I am right now to become permanent

I can completely sympathize with this quote. Completely.

Wasn't it George Costanza who said, "I can't be blind, Jerry! The blind are brave!"

I think that all possibility in one way shape or form comes from limitation, which is why I liked the title of this post. I noticed it here too by the ways you describe being limited by language.

Jerindc, good point that so many of our limitations are fluid.

Bil, thanks for the understanding!

And Alex, I like that quote -- and what you say about how possibility comes from limitation...