Happily Assembling Disjointed Blog for your Pleasure

When the fall sun disappears, Albany quickly chills from a balmy 70 degree afternoon but my riding partner Bronwyn and I don’t notice. We are keeping one another warm as we wheel from Memorial Park back to my apartment. Bronwyn is a 2 and a half year old pistol of a girl who fearlessly headed right for the giant slide along with the big kids as soon as we arrived at the park. I’m visiting on this day with Bronwyn’s mom Lisa and Lisa’s sister Janice who are in from Vancouver for the long weekend. They lived with and took care of their mom who died of ALS many years ago now. Last year they did the ALS walk around Lake Merritt with their other sister Nancy.

Bronwyn’s warm little body is pressed against mine. It’s been so long since I held a kid because first I was afraid to drop them then I couldn’t do it at all. But B is on my lap in the wheelchair with a belt fastening us both safely in. When she starts to fall asleep, listing to the left, her dead weight is too much for my feeble arms so Lisa holds her right arm to pull her back to center. It’s quite comical. At one point I feel overcome and I ask Lisa “Do you ever look at her and wish your mom could have met her?” Lisa very politely does not point out what a “duh” question this is. I feel Bronwyn’s weight on my thigh and try hard to imagine she’s my granddaughter.

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Sunday I met one of our Muselings and her lovely partner. I liked them both instantly. ALS got introduced into their lives via a parent who I hope to one day meet. Either way it was a great experience to meet them. For me, Muselings are this blog’s richest gift.

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I’m going to be interviewed on KCSM Jazz 91 on Fri November 21st at 1:00. It’s my friend Edith’s birthday so all the schools, banks etc will be closed I would imagine, so you can all tune in.

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Mac tells me that Barack Obama’s first act in office will be to reverse several of Bush’s executive orders including the funding of stem cell research. I felt strongly about this before ALS (see Oct 2006 blog ) but now it’s personal. Yes, I know stem cell research has continued anyway and yes I know ALS stem cell research has made great strides but what might have happened with 7 extra years of federal funding? How many more deaths is GW responsible for? It took me 2 days to be able to talk about Barack’s impending reversal without breaking down.

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Allison painted a bench yesterday. My poor sister-in-law has been very nauseous from the chemo drugs and struggling with all the natural feelings that go along with a grave illness but yesterday she sounded alive and present and she painted a bench. Lisa (Bronwyn’s Mom) was telling me how much she liked Allison when she met her this summer, which says something good about them both since Lisa was engaged to my brother at one point.

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I’m drained lately. I’m tired most of the time and little things like getting locked out of my apartment can bring on tears. Today my amazing angels met for a marathon session with P ( from earlier blog On Orange Carpets and Little Deaths) to discuss Proper Care and Maintenance of Your Carla. Some of them couldn’t make it so I’ll write about them another time (this means you Laundry and Legal Department – I love you) I love these women so much I would play Bunko with them in Heaven ( I can make that promise cuz I’m sure there’s no Bunko in Heaven). I love these women so much I would turn Johnny Depp down if he invited me to come live with him in France (fuck their socialized medicine, I won’t leave my girls. ) I love these women so much I will keep writing about how Lisa drives all the way to my house so I can tell her I’m too tired to go the demonstration she was driving me to and doesn’t blink at the waste of time or how she wants to put an Ididerod-style platform on the back of my chair and yell “Mush” at me or how uber-competent rock Kaila shares poems and heartbreak and music and will suddenly explode into tears on my behalf or how Ali and I just stared at each other tonight, both in tears after she told me “You’ll never know how much WE love YOU so THERE!” or how Wendy calls “Hi Cutie-Pooty and arrives bearing multiple gifts and leaves taking things to retrofit with magnets so I don’t have to fumble with buttons. A blur of industry. A Tasmanian devil of love. I’ll keep writing about pretty Kathy with her sharp eye, positive outlook, brilliant mind and iron determination and Barbara who I have gotten to know in a deeper way this year and whose soulful, sound insights open up new vistas for me and of course Edith of a thousand and one tasks whose eyes flash mischievously when she tells how she’s going to make an instruction card for the ATM wheelchair “Japanese style.” This means if you plan to assemble or disassemble that chair, prepare to do it “happily.”