Tuesday, July 19, 2011

Day 11 - A deceased person you wish you could talk to

Granny,

I wish I could talk to you. I wish there was some way I could have come out to you (and Vana Isa). I wish I could have talked to you about things, like being crazy, and fashion, and what things were really like for you. I know you wouldn't have talked to me about them, because you had so much of what they used to call "class", and what we would now term stoicism.

You must have hurt so badly, and you were a victim of misogyny, and the patriarchal medical establishment, and buerocracy, and yet I remember you as being so wonderful, and beautiful, and fancy, and comforting, and elegant, and kind.

I also remember you being very regulated and regimented, like many people from that generation, keeping your demons at bay with a whole series of rules, designed to maintain safety and illusions.

I wonder.  And I miss you.

L.

Saturday, July 16, 2011

Day 10 - Someone you don't talk to as much as you'd like to

Dear L,

I miss you. I miss talking to you, and just hanging out. We make sense to each other in lots of ways, and I miss having someone who gets those weird neurotic parts of me. You're also lots of fun.

I miss getting to just hang out.  Proximity was great for that, because being closer meant that we could just get together without it having to be for something, and I miss that too.  Being so far away kind of sucks.

I need a big dose of just hanging out and doing nothing much together.  Cooking, cleaning, whatever.  I feel like you're a good influence on me, and I miss that too.

Hugs,

Me.

Wednesday, July 13, 2011

Day 09 - Someone you wish you could meet

It's authors, really, and family members. 

Douglas Adams, except he's dead, so I don't want to meet him anymore, all decayed, and Stephen Fry, because I'd love to talk to him, and Patrick Califia, who is such a hero, and I'm sure just a person, albeit an incredible one.

I'd like to talk to my father's mom, who I never met, and Granny's mom, and I'd like to be able to come out to my grandparents, and have them understand.

On my more whimsical days I'd like to meet a cat, and really understand it, or a bird, or a fish, or whatever.

I would have said it was Richard Dawkins, but this whole *"sexism doesn't exist or matter in the western world because opression is so much bigger elsewhere", delivered in sarcastic condescension, just got my back up, and I'm not certain that we, as atheists need to be antagonizing each other as well as everybody else.

So, I'd like to meet some of these people instead, thanks all the same.

Cheers,

me

Monday, July 11, 2011

Day 08 - Your favorite internet friend

Dear 'french girl',

Your blogs have kept me laughing, crying, empathizing, terrified with worry, and wondering how you are for years now, and I don't think I've met you more than that once, years ago, when I shook your hand at a party.

We were both insanely young, and I doubt you remember me.  I was with someone else, and you were too, and it was a whole lifetime ago.

I have been so inspired by you.  You keep going despite living through hell, repeatedly, and you just have this incredible spark, and sparkle to you.  I hope you know that. I hope you know how much you mean to people, even if they're just some random grrl, half a country away.

I'm glad you're doing ok, again.  It's been a tough while, and I know what that's like.  You're amazing, and I know you're going to come out on top of things, there's no way that you could fail to succeed, how could you?  You're devastatingly smart, and gorgeous, and you'll make a fantastic go of it.

So, that's it.  My semi-anonymous pep-talk, to you,

Hugs,

Me.

Access Intimacy - A response...

 Access intimacy is defined in this incredible article as "the closeness I would feel with people who my disabled body just felt a little bit safer and at ease with."

It's not the complete definition, and you should definitely go read the thing itself, but the idea makes perfect sense.  There's something to be said for just feeling at home in your skin.

When you're someone with a disability that becomes something rather more fraught.  There's more fear around disclosure, more stress around limitations, and more worry on everyone's part.

Issues I've encountered are:
1. I want to seem fine so people keep asking me to things, don't want to slow people down/ruin the experience, or the mood, or otherwise be an impediment.
2. My pain or fatigue causes me to be less enthusiastic than I might have been otherwise, and I worry about being seen as a "downer"
3. Others worry about me, and that interferes with their enjoyment.
4. Others worry about me, and that interferes with my enjoyment.
5. It is hard to admit to not being able to do things, and so I seem flaky because I sometimes cancel or change plans at the last minute
6. My health is unpredictable, so I seem flaky because I cancel at the last minute.
7. I want people to like me, so I don't talk about what's going on with me as much as I should, and seem standoffish when really I'm just in pain.

It's such a fine line to ask others to walk as well:

Care about me, but not so that I feel smothered.
Offer to help, but not so much that I feel helpless. 
Understand that I can't always do things, but don't coun't me out in advance.
Don't take it personally when I'm bitchy because of being in pain, but when I'm bitchy, don't discount it, asking "are you in pain?"