So much of my life is about this gradual loss, this slow dying. So much is out of my control. So little of what happens to me is chosen by me. I think I am going to choose to quit singing now. I know many will try to talk me out of it. I know none of us want to believe that what will happen to me is going to happen. But I believe it. I feel the changes every day and I can't ignore them. That's why I want to walk away from singing with the memory of a good gig and on my own terms. i want my last show to have been with David Rokeach, Jon Evans and John R Burr. There can be no substitutes for them and I've been on a lucky roll having them available, that has to end sometime.
I kept saying to myself at Yoshi's "just be here, Carla" and I was. I basked in it. I felt the warm golden glow of the lights, I thrilled when the band locked into a groove, I was moved by how many former students - some going back more than ten years - were in the audience. I gobbled up Jon's virtuosity and utter commitment on Big Yellow Taxi and I was moved by his songlike solo on I'll be seeing you, I was in awe of David's amazing groove and his passion in executing it and the way his kick drum lands in the perfect spot every fucking time and how it sounds so rich, powerful and resonant. I was grateful for his smile when we did our little duet . John R.'s remarkable versatility was killing me. From his chop-laden solo on The Way You Look Tonight to his bouncy stride on Smile to his unabashedly beautiful solo on Circle Game, he slayed me. I basked in it. The love from the audience poured over me. At one point i thought I couldn't go on and I saw Jay in the audience - someone I only just met from this blog - and I knew I would be okay. I felt bathed in love and I was right there and it was all so beautiful I could barely muster up a good joke all night.
As John R. carried me off stage I realized it was probably the last time and I lost it. It was a momentous night in my life.
It is a rare privilege to get to perform for people - to make them laugh and cry. Except for friends, family and my beautiful boy, nothing has made me happier. I didn't have a choice when I had to quit performing Wedding Singer Blues and I truly thought "dying can't be half as bad as this". If I choose when to stop singing, at least I'll have some control.
My voice used to soar. I felt like I was taking flight when I sang. Now it's all I can do to get the notes out. I know I sound okay but it breaks my heart to remember how I used to sound and know that's no longer possible. It's hard to explain.
It's so hard for us to let go of who we were, what we had and what we dreamt we would be. I wanted to "make it" as a performer, to find "the one" and live happily ever after and of course to watch my son get married and have kids that I could swear in front of. None of that is going to happen for me and yet I feel like a success. Go figure.
I will of course sing now and then - a tune here or there while I can- but I pray I can have the strength to be like those Buddhist Monks destroying the elaborate sand mandalas they just completed. I imagine them hiking up their robes, joyfully kicking up sand and laughing.
Thursday, November 27, 2008
Wednesday, November 26, 2008
Giving Thanks
Mayra my accomplice is pulling my pants down so I can use the commode when I collapse on top of her. She is holding me up – barely – and she says “Whoa, don’t fall in love with me.” “Too late” I reply. A minute or two later she is trying to get me back in the wheelchair. I do a wild pivot and land kerplunk in the chair with Mayra on top of me. “Don’t fall in love with me” I warn her. “Too late,” she responds.
My legs are shakier and less dependable all the time it seems. The night time commode trips are precarious. Bed to chair in the morning is an adventure as my knees lock and my legs stiffen like boards and I generally fall backwards onto the bed. The day I pitch forward is going to suck. Good thing my knees hyper extend – harder to fall forward I think. My wrists are losing strength as is my right hand. Eating is hard, tiring and messy. The lady at the Thai restaurant automatically brings me a straw now. Soon I’ll be too embarrassed to eat out. Soon I’ll need help eating.
The elevator in my building was out briefly this morning and I connected with that part of me that feels very vulnerable. I don’t usually think that way. I get up and try to walk to a calendar, I offer to meet friends places rather than get a ride all the time. I forget that I’m now a handicapped person.
Okay so here’s the weird part. I’m in a good mood. On the outside it looks grim – not enough money, no man, very handicapped, lousy living situation, no job, my singing career is coming to an end…. But here’s the thing. I have this amazing kid who entertains me and lets me take him clothes shopping, who tells me if there’s a fire he’ll carry me down the stairs and who laughs and says “don’t worry, I’ve got you” when I call for help because I forgot I can’t walk and I walked to (and landed partway in) my closet. “How do you forget something like that?’ he asks me.
And here’s another thing – my parents fly from Canada to see my gig and understands that I can’t hang out with them until the gig is over. My brother calls to tell me it breaks his heart not to be there, my sister in law calls mid chemo misery and we share a loving half hour together. I’d say something about my friends but I’ll sound like a broken record. I am blessed at every turn.
Do I sound full of shit when I say that? I hope not because it’s really true. ALS has torn my heart wide open and there are unimaginable gifts in this disease. If I read this 2 years ago I would have thought I was a self-deluding, kelp eating weirdo but here it is.
This weekend Jupiter an Venus are closer together than they’ve been in modern times. George Bush has pardoned his last turkey. I get to sing tonight in front of a loving audience with the most supportive and talented band imaginable and I found great red shoes. There is a lot to be thankful for.
In Kindergarten, Mac was watching the older kids do a pageant portraying the mythical meal between Pilgrims and Indians (pre-small pox blankets etc) and at the end the narrator said “And to this day there are Native Americans living among us.” And little Mac yelled out angrily “Not very many!” The next day we still celebrated Thanksgiving despite its sketchy origins. We sat down and ate a great turkey dinner and talked about what we were thankful for. That’s life is it not? Good, evil, joy, grief, tears and laughter – give me all of it.
So this Thanksgiving I am thankful for ALS. No bullshit. (But check back in a few months, no doubt I'll change my tune!)
Hope to see you at Yoshis.
My legs are shakier and less dependable all the time it seems. The night time commode trips are precarious. Bed to chair in the morning is an adventure as my knees lock and my legs stiffen like boards and I generally fall backwards onto the bed. The day I pitch forward is going to suck. Good thing my knees hyper extend – harder to fall forward I think. My wrists are losing strength as is my right hand. Eating is hard, tiring and messy. The lady at the Thai restaurant automatically brings me a straw now. Soon I’ll be too embarrassed to eat out. Soon I’ll need help eating.
The elevator in my building was out briefly this morning and I connected with that part of me that feels very vulnerable. I don’t usually think that way. I get up and try to walk to a calendar, I offer to meet friends places rather than get a ride all the time. I forget that I’m now a handicapped person.
Okay so here’s the weird part. I’m in a good mood. On the outside it looks grim – not enough money, no man, very handicapped, lousy living situation, no job, my singing career is coming to an end…. But here’s the thing. I have this amazing kid who entertains me and lets me take him clothes shopping, who tells me if there’s a fire he’ll carry me down the stairs and who laughs and says “don’t worry, I’ve got you” when I call for help because I forgot I can’t walk and I walked to (and landed partway in) my closet. “How do you forget something like that?’ he asks me.
And here’s another thing – my parents fly from Canada to see my gig and understands that I can’t hang out with them until the gig is over. My brother calls to tell me it breaks his heart not to be there, my sister in law calls mid chemo misery and we share a loving half hour together. I’d say something about my friends but I’ll sound like a broken record. I am blessed at every turn.
Do I sound full of shit when I say that? I hope not because it’s really true. ALS has torn my heart wide open and there are unimaginable gifts in this disease. If I read this 2 years ago I would have thought I was a self-deluding, kelp eating weirdo but here it is.
This weekend Jupiter an Venus are closer together than they’ve been in modern times. George Bush has pardoned his last turkey. I get to sing tonight in front of a loving audience with the most supportive and talented band imaginable and I found great red shoes. There is a lot to be thankful for.
In Kindergarten, Mac was watching the older kids do a pageant portraying the mythical meal between Pilgrims and Indians (pre-small pox blankets etc) and at the end the narrator said “And to this day there are Native Americans living among us.” And little Mac yelled out angrily “Not very many!” The next day we still celebrated Thanksgiving despite its sketchy origins. We sat down and ate a great turkey dinner and talked about what we were thankful for. That’s life is it not? Good, evil, joy, grief, tears and laughter – give me all of it.
So this Thanksgiving I am thankful for ALS. No bullshit. (But check back in a few months, no doubt I'll change my tune!)
Hope to see you at Yoshis.
Thursday, November 20, 2008
International Hug-an-Edith Day
By the time most of you read this post it will be Friday November 21st, better known as International Hug-an Edith Day. If you know an Edith, commence to huggin'. If you know or know of my Edith, now would be the perfect time to write a comment telling her how awesome she is. Now I could write about all the rides, commode bag changes, last minute rescues, getting up more times a night to help me than I got up with my newborn, endless durable medical equipment purchases, medical fund management, thank you card making, poster making, stretching, showering, food buying, woman lifting, trip organizing, reality checks and listening that she does but I'd rather tell you some cool things about her:
1) She has an unnaturally strong love for carrots.
2) She changes purses almost every day.
3) She leaves weird and funny post-its for my son.
4) If she doesn't like a joke of mine, she hits me.
5) She has a friend named Big Johnson. No really.
6) All of her undergarments are the same color.
7) She can pack away 3 entrees in one sitting and still order desert.
8) As you can see from the picture this has not had the ruinous effect one might expect. (This is my favorite shot of her)
9) If she were vetted for VP, I would be her only dark secret. Apart from groping my lady parts, this gal is clean as a whistle.
10)She could be captain of USA's Olympic Shopping Team.
11) Her sense of humor is stealthy and horribly evil.
It is my great honor to know her and I urge you to blog comment a Happy Birthday Message here.
Happy Birthday Beautiful. I'll be sure to say something horrible about you on the radio!
1) She has an unnaturally strong love for carrots.
2) She changes purses almost every day.
3) She leaves weird and funny post-its for my son.
4) If she doesn't like a joke of mine, she hits me.
5) She has a friend named Big Johnson. No really.
6) All of her undergarments are the same color.
7) She can pack away 3 entrees in one sitting and still order desert.
8) As you can see from the picture this has not had the ruinous effect one might expect. (This is my favorite shot of her)
9) If she were vetted for VP, I would be her only dark secret. Apart from groping my lady parts, this gal is clean as a whistle.
10)She could be captain of USA's Olympic Shopping Team.
11) Her sense of humor is stealthy and horribly evil.
It is my great honor to know her and I urge you to blog comment a Happy Birthday Message here.
Happy Birthday Beautiful. I'll be sure to say something horrible about you on the radio!
Tuesday, November 18, 2008
Butterfly Moments
Whoever is running the universe acted like the perfect hosts and hostesses this weekend, conspiring with one another to show me the best time ever.
“Look, she’s not here for long,” I imagine the amorphous blob in charge saying. “Let’s pull out all the stops.”
The special effects blob perks up. “ I could do that cool shooting star thing if you want.”
“Good. Make it happen.”
And it did. As if the yellow moon hanging low over the water making a golden path between Pacific Grove and Monterey and the sea lions’ barks carrying across the bay and the memory of 15,000 butterflies weren’t enough, we saw a shooting star on the way home. Pure magic.
Not that there were no hitches in the plan. My friend Stephanie traveled all the way from Michigan to accompany me on this trip and the morning after she arrived she caught a cold. My friends mobilized (as you faithful Muselings know by now my friends do) and Stephanie bunked with Kathy. I missed having my time with her but I can’t take another cold. By Saturday morning things looked hopeful but not 100% safe so Kathy drove Stephanie and Edith drove me as we made our way to Pacific Grove to see the butterflies. The Czar of fun (Lisa) was in Half Moon Bay on one of her innumerable wacky adventures and she met up with us for part of the trip regaling us with amusing stories and poetic descriptions of what we were seeing and running reconnaissance missions to insure we were always heading into wheelchair friendly space. Our scout called us Kimosabe, Kimosabo, Kimosaba and Kimosabu. (Hey I looked up the spelling in Wikipedia – this is the best I can do).
So I’ve been looking forward to seeing the butterflies for some time. I have kind of a thing for them, so much so that Ali has threatened an intervention if I buy one more butterfly-related item of clothing or piece of jewelry etc. The love of butterflies is a stark contrast to my persona as foul-mouthed wisecracker but there you have it. Hello, my name is Carla and I have a butterfly fetish.
Hi Carla!
So sometimes, but not very often, everything goes more than right. The universe conspires to show you the time of your life. We stumble on the grove on the best butterfly weekend of the year. It’s unseasonably warm and the monarchs are flying all over. I slump down in my wheelchair and rest the back of my head on the chair so I can look straight up into the tall branches of the eucalyptus trees where the most action is taking place. The sun is bathing the trees in light and the scene looks too magical to actually exist – a cinematographer’s vision of what the world should look like. It also looks like a snapshot you might play in your head just as your dying. Something that encapsulates your sense of what life is in all it’s grace. I look up and I believe in god, but not how you think. I believe we created god so as not to go insane trying to understand that which is incomprehensible. I didn’t want to believe in god before because the one I had invented was merciless and unjust. Now I believe god is just a magic moment, a butterfly, a laugh hanging in the air, a question with no urgent need for an answer. This is a god I can deeply love.
So I look up at this holy scene and it’s too beautiful to take and I weep, leaving a few puzzled butterfly tourists to invent a story about the sad woman in the wheelchair. I bet they all guess right.
I wonder as I weep if Stephanie will feel okay about recording this moment. She is recording our trip and since it is an audio recording she keeps asking “How would you describe this in words?” Lisa describes the sound of butterfly wings as a silk slip rustling under a cotton skirt and Edith describes the moment when 100s of sleeping butterflies simultaneously take flight and scatter in an orange blur as a heart bursting open. (Kathy and I compare the sound to tiny helicopters so no gold star for poetry this time.)
Sometimes the universe drops something in your lap and winks. I meet 2 African Grey parrots named Paco and Chanel at Cannery Row – the ultimate tourist trap. Kathy arranges for their owner to let me hold them – or rather they perch on my arms, which rest on the arms of the wheelchair. Paco has a great personality and I salivate for a bird. More and more I relate to birds, both from a singing and a flying standpoint. I dream about flying like a bird sometimes and my legs just dangle in the air. They’re useless in my dreams but it doesn’t matter. I also think, as my voice slips away, about Maya Angelou’s poem Caged Bird in which she says “The caged bird sings with a fearful trill of things unknown but longed for still….”
I’m hoping I will get through Yoshi’s next week without any wheezing or spasms. That would be nice. I did pretty well over the weekend except when Edith was transferring me from chair to car by holding onto my ass and I started to pitch forward. She grabbed what she thought was my shoulder but was actually my boob. I’m trying not to fall as one of my dearest friends, sister of my heart gropes me in two spots at once and says “we need a guy for this job.” I crack up triggering laryngal spasms and every time I calm down enough to breathe, I crack up again and start wheezing. And repeat. I can’t tell you why it’s hilarious and not horrifying except to say there was one lone guy on the seawall where this occurs and he must have wondered about these women molesting a crippled woman then being very calm as she appeared to be having a scary asthma episode. He’ll be extra vigilant when looking for caregivers for his elderly mother – especially if she has a rack as nice as mine.
Sometimes the universe has a sense of humor.
We are getting out of the car to see harbor seals and sea lions when I drop a water bottle ,which a chubby boy about 9 years old picks up for me. He watches with ferocious intensity as Edith gets me out of the car and into the chair.
“What happened to you?” he asks.
“Oh, I’m sick so my legs and stuff don’t work so well,” I reply.
“Oh. Why are you putting on a seatbelt?”
“Well, this one time I hit a bump and I flew out of my chair. Kind of like if you go over your handlebars on your bike. Did you ever do that?”
“No. Yes.”
“ So I wear the seatbelt so that won’t happen. What’s your name?”
“Cesar.”
“Thanks for picking up my water bottle, Cesar. Are you here to see sea lions?’
“No. What did you hurt when you fell from your chair?”
“I skinned my knees.”
“Then what happened?”
“Well, I was by myself so I had to wait for someone to help me.”
“I would have helped you” he says with all sincerity.
“Thank you, Cesar.”
And with that little hypothetical gesture, Cesar has no idea of the gift he’s given me on this already amazing day. I would have helped you. One stranger reaching out to another for a suspended moment in time. It’s like being visited by an angel.
We go to the beach by the Lighthouse (yes, I know I’m going out of order, girls) and look out at the water. Stephanie a woman who exudes pure love from every pore is down by the water recording ambient sound.
“Do people tell you all the time that you’re adorable?” Edith asks her. Good question. Kathy is balancing precariously on the rocks to collect sea water in a bottle which she brings back along with a sea onion, seaweed and a little sand. She pours the sand and water on my foot. She has brought the beach to me.
It’s not every day that the sun shines down on you like a blessing and you move from marvel to marvel. It’s not every day that nothing goes wrong, the food all tastes good and the traffic is smooth. It’s not every day that something you wanted happens and it’s even better than you’d hoped. That’s why they call them special days.
I tell you what does happen for me every bloody day. Every day someone blesses me with their love and friendship whether that means a check in phone call in the middle of the day, or getting up to help me pee all night, or traveling to help me fulfill a dream or bringing me a beach. I dare you to find someone luckier than me.
“Look, she’s not here for long,” I imagine the amorphous blob in charge saying. “Let’s pull out all the stops.”
The special effects blob perks up. “ I could do that cool shooting star thing if you want.”
“Good. Make it happen.”
And it did. As if the yellow moon hanging low over the water making a golden path between Pacific Grove and Monterey and the sea lions’ barks carrying across the bay and the memory of 15,000 butterflies weren’t enough, we saw a shooting star on the way home. Pure magic.
Not that there were no hitches in the plan. My friend Stephanie traveled all the way from Michigan to accompany me on this trip and the morning after she arrived she caught a cold. My friends mobilized (as you faithful Muselings know by now my friends do) and Stephanie bunked with Kathy. I missed having my time with her but I can’t take another cold. By Saturday morning things looked hopeful but not 100% safe so Kathy drove Stephanie and Edith drove me as we made our way to Pacific Grove to see the butterflies. The Czar of fun (Lisa) was in Half Moon Bay on one of her innumerable wacky adventures and she met up with us for part of the trip regaling us with amusing stories and poetic descriptions of what we were seeing and running reconnaissance missions to insure we were always heading into wheelchair friendly space. Our scout called us Kimosabe, Kimosabo, Kimosaba and Kimosabu. (Hey I looked up the spelling in Wikipedia – this is the best I can do).
So I’ve been looking forward to seeing the butterflies for some time. I have kind of a thing for them, so much so that Ali has threatened an intervention if I buy one more butterfly-related item of clothing or piece of jewelry etc. The love of butterflies is a stark contrast to my persona as foul-mouthed wisecracker but there you have it. Hello, my name is Carla and I have a butterfly fetish.
Hi Carla!
So sometimes, but not very often, everything goes more than right. The universe conspires to show you the time of your life. We stumble on the grove on the best butterfly weekend of the year. It’s unseasonably warm and the monarchs are flying all over. I slump down in my wheelchair and rest the back of my head on the chair so I can look straight up into the tall branches of the eucalyptus trees where the most action is taking place. The sun is bathing the trees in light and the scene looks too magical to actually exist – a cinematographer’s vision of what the world should look like. It also looks like a snapshot you might play in your head just as your dying. Something that encapsulates your sense of what life is in all it’s grace. I look up and I believe in god, but not how you think. I believe we created god so as not to go insane trying to understand that which is incomprehensible. I didn’t want to believe in god before because the one I had invented was merciless and unjust. Now I believe god is just a magic moment, a butterfly, a laugh hanging in the air, a question with no urgent need for an answer. This is a god I can deeply love.
So I look up at this holy scene and it’s too beautiful to take and I weep, leaving a few puzzled butterfly tourists to invent a story about the sad woman in the wheelchair. I bet they all guess right.
I wonder as I weep if Stephanie will feel okay about recording this moment. She is recording our trip and since it is an audio recording she keeps asking “How would you describe this in words?” Lisa describes the sound of butterfly wings as a silk slip rustling under a cotton skirt and Edith describes the moment when 100s of sleeping butterflies simultaneously take flight and scatter in an orange blur as a heart bursting open. (Kathy and I compare the sound to tiny helicopters so no gold star for poetry this time.)
Sometimes the universe drops something in your lap and winks. I meet 2 African Grey parrots named Paco and Chanel at Cannery Row – the ultimate tourist trap. Kathy arranges for their owner to let me hold them – or rather they perch on my arms, which rest on the arms of the wheelchair. Paco has a great personality and I salivate for a bird. More and more I relate to birds, both from a singing and a flying standpoint. I dream about flying like a bird sometimes and my legs just dangle in the air. They’re useless in my dreams but it doesn’t matter. I also think, as my voice slips away, about Maya Angelou’s poem Caged Bird in which she says “The caged bird sings with a fearful trill of things unknown but longed for still….”
I’m hoping I will get through Yoshi’s next week without any wheezing or spasms. That would be nice. I did pretty well over the weekend except when Edith was transferring me from chair to car by holding onto my ass and I started to pitch forward. She grabbed what she thought was my shoulder but was actually my boob. I’m trying not to fall as one of my dearest friends, sister of my heart gropes me in two spots at once and says “we need a guy for this job.” I crack up triggering laryngal spasms and every time I calm down enough to breathe, I crack up again and start wheezing. And repeat. I can’t tell you why it’s hilarious and not horrifying except to say there was one lone guy on the seawall where this occurs and he must have wondered about these women molesting a crippled woman then being very calm as she appeared to be having a scary asthma episode. He’ll be extra vigilant when looking for caregivers for his elderly mother – especially if she has a rack as nice as mine.
Sometimes the universe has a sense of humor.
We are getting out of the car to see harbor seals and sea lions when I drop a water bottle ,which a chubby boy about 9 years old picks up for me. He watches with ferocious intensity as Edith gets me out of the car and into the chair.
“What happened to you?” he asks.
“Oh, I’m sick so my legs and stuff don’t work so well,” I reply.
“Oh. Why are you putting on a seatbelt?”
“Well, this one time I hit a bump and I flew out of my chair. Kind of like if you go over your handlebars on your bike. Did you ever do that?”
“No. Yes.”
“ So I wear the seatbelt so that won’t happen. What’s your name?”
“Cesar.”
“Thanks for picking up my water bottle, Cesar. Are you here to see sea lions?’
“No. What did you hurt when you fell from your chair?”
“I skinned my knees.”
“Then what happened?”
“Well, I was by myself so I had to wait for someone to help me.”
“I would have helped you” he says with all sincerity.
“Thank you, Cesar.”
And with that little hypothetical gesture, Cesar has no idea of the gift he’s given me on this already amazing day. I would have helped you. One stranger reaching out to another for a suspended moment in time. It’s like being visited by an angel.
We go to the beach by the Lighthouse (yes, I know I’m going out of order, girls) and look out at the water. Stephanie a woman who exudes pure love from every pore is down by the water recording ambient sound.
“Do people tell you all the time that you’re adorable?” Edith asks her. Good question. Kathy is balancing precariously on the rocks to collect sea water in a bottle which she brings back along with a sea onion, seaweed and a little sand. She pours the sand and water on my foot. She has brought the beach to me.
It’s not every day that the sun shines down on you like a blessing and you move from marvel to marvel. It’s not every day that nothing goes wrong, the food all tastes good and the traffic is smooth. It’s not every day that something you wanted happens and it’s even better than you’d hoped. That’s why they call them special days.
I tell you what does happen for me every bloody day. Every day someone blesses me with their love and friendship whether that means a check in phone call in the middle of the day, or getting up to help me pee all night, or traveling to help me fulfill a dream or bringing me a beach. I dare you to find someone luckier than me.
Wednesday, November 12, 2008
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.
*********************************************************************
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.
*********************************************************************
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.”
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.
*********************************************************************
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.
*********************************************************************
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.
*********************************************************************
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.
*********************************************************************
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.
*********************************************************************
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.”
Saturday, November 08, 2008
Black President - Check! Puppies - Check! Let's See, What's next? Oh yes, Gay marriage!
Barack Obama beat my friend Terre to the punch as you can see from this piece in the AP:
http://hosted.ap.org/dynamic/stories/M/MUTTS_LIKE_ME?SITE=TNJAC&SECTION=HOME&TEMPLATE=DEFAULT
The Obamas will have a shelter dog!
In the meanwhile I hope to be part of another movement on Tuesday to oust another administration whose impact though not far-reaching like that of the Bush Administration has been devastating to public education. My old college - The College of Marin currently has the most corrupt and incompetent administration and this coming Tuesday, at 5:30 PM, my beloved colleagues will hold a job action to protest the refusal of the Board of Trustees to negotiate their contract which they have been without for 17 months. If you are connected with the College, I urge you to join us outside the cafeteria entrance to the Student Activities building The Musician Action's Group will be performing and I have a renewed sense of optimism that change can come even to Marin where they appear to hate change so much they wouldn't even send me a custom written retirement letter. I got the same one al the 65 year olds got which went something like this:
Dear Carla,
Congratulations on your retirement! We at the College of Marin are so excited about what is in store for you.
Maybe it was custom written and they just hated me that much. They are excited about what's in store for me? Wow. The HR administrator - let's just call her Linda Beam ....because that's her name ....responded to my complaints by saying she was sorry I "took the letter the wrong way." You can't make this shit up. By the way there were only 5 other retirees so, you know, they weren't swamped.
It's a new day though and people are believing that they can be instruments of change.
Meanwhile, I am learning that change often comes whether we want it or not and I'm trying to ride bigger and bigger waves of change without wiping out on the rocks.
I used to be 5'8" with long legs. As a guy I adore said to me "you're long and tall and that's not all." Now I'm 4 foot something with fat wheels. I used to be a half decent cook, now people serve me food. I drop my fork at least once per meal and drink beer from a straw. My bedroom used to be this lush romantic space now it has a commode and a walker and a wheelchair parked by the bed which boasts a bed rail. I had an impeccable home, now chunks of plaster have been knocked out of the wall by a maverick wheelchair driver and the carpet is stained with the many drinks I've dropped. The orange carpet is long gone. SInging gets harder, getting in and out of cars, the shower, the commode all tougher and my energy is limited.
Change comes like it or not. The cure is more change. Every time I do something new I feel powerful to tackle this, be it go on an excursion, start shopping for a pet bird or striking up a conversation with someone new and learning something cool as a result. In those moments it's delicious to be alive.
http://hosted.ap.org/dynamic/stories/M/MUTTS_LIKE_ME?SITE=TNJAC&SECTION=HOME&TEMPLATE=DEFAULT
The Obamas will have a shelter dog!
In the meanwhile I hope to be part of another movement on Tuesday to oust another administration whose impact though not far-reaching like that of the Bush Administration has been devastating to public education. My old college - The College of Marin currently has the most corrupt and incompetent administration and this coming Tuesday, at 5:30 PM, my beloved colleagues will hold a job action to protest the refusal of the Board of Trustees to negotiate their contract which they have been without for 17 months. If you are connected with the College, I urge you to join us outside the cafeteria entrance to the Student Activities building The Musician Action's Group will be performing and I have a renewed sense of optimism that change can come even to Marin where they appear to hate change so much they wouldn't even send me a custom written retirement letter. I got the same one al the 65 year olds got which went something like this:
Dear Carla,
Congratulations on your retirement! We at the College of Marin are so excited about what is in store for you.
Maybe it was custom written and they just hated me that much. They are excited about what's in store for me? Wow. The HR administrator - let's just call her Linda Beam ....because that's her name ....responded to my complaints by saying she was sorry I "took the letter the wrong way." You can't make this shit up. By the way there were only 5 other retirees so, you know, they weren't swamped.
It's a new day though and people are believing that they can be instruments of change.
Meanwhile, I am learning that change often comes whether we want it or not and I'm trying to ride bigger and bigger waves of change without wiping out on the rocks.
I used to be 5'8" with long legs. As a guy I adore said to me "you're long and tall and that's not all." Now I'm 4 foot something with fat wheels. I used to be a half decent cook, now people serve me food. I drop my fork at least once per meal and drink beer from a straw. My bedroom used to be this lush romantic space now it has a commode and a walker and a wheelchair parked by the bed which boasts a bed rail. I had an impeccable home, now chunks of plaster have been knocked out of the wall by a maverick wheelchair driver and the carpet is stained with the many drinks I've dropped. The orange carpet is long gone. SInging gets harder, getting in and out of cars, the shower, the commode all tougher and my energy is limited.
Change comes like it or not. The cure is more change. Every time I do something new I feel powerful to tackle this, be it go on an excursion, start shopping for a pet bird or striking up a conversation with someone new and learning something cool as a result. In those moments it's delicious to be alive.
Friday, November 07, 2008
On Gay Marriage and Puppies
People are hearing the call and rising to the occasion. Two straight couples I know (independent of one another) are investigating how to get very publicly divorced and becoming domestic partners. These are long established couples with kids but do not want to enjoy a privilege that their gay friends are so unjustly being denied. Charlize Theron had already said she wouldn't get married until gay people could. United we stand, divided we have 8 years like the last two bullshit terms.
Another friend is launching a campaign asking all of us to email Barack Obama and asking him to please adopt a puppy instead of buying one from a breeder. What a message that would send. All around me people are thinking about the causes that matter to them and putting their money where there mouths are.
Here's the Barack Obama website: http://www.change.gov/page/s/yourvision
In the meantime, I suggest we all work to ban Republican marriage and enjoy this song by my friend Roy: http://www.youtube.com/watch?v=bja2ttzGOFM
I wish he could retire this song.
Another friend is launching a campaign asking all of us to email Barack Obama and asking him to please adopt a puppy instead of buying one from a breeder. What a message that would send. All around me people are thinking about the causes that matter to them and putting their money where there mouths are.
Here's the Barack Obama website: http://www.change.gov/page/s/yourvision
In the meantime, I suggest we all work to ban Republican marriage and enjoy this song by my friend Roy: http://www.youtube.com/watch?v=bja2ttzGOFM
I wish he could retire this song.
Wednesday, November 05, 2008
Tears of Joy,Tears of Pain
There are now 17 women in the Senate.
Think about that.
We still don't know if we have our fillibuster proof majority but there is hope.
A black first family will live in the White House with their new puppy.
A man of integrity will lead the country.
ANd yet.
In California a basic human right was torn from us - and I mean all of us - because when one group is oppressed we are all diminished. Gay people no longer have the right to marry. Now I am not a fan of straight marriage myself. 50% of marriages end in divorce and those are the lucky ones - the others end in death. Nevertheless, if people want to get married they should be able to. I hurt for all my friends who have been told by this vote that they are second class citizens.
And yet.
In the Castro last night, gay men danced in the street for Obama, putting aside the cruelty and injustice of this decision and looking at the big picture. I watched the TV in admiration as they boogied down and I wept tears of joy and pain.
Think about that.
We still don't know if we have our fillibuster proof majority but there is hope.
A black first family will live in the White House with their new puppy.
A man of integrity will lead the country.
ANd yet.
In California a basic human right was torn from us - and I mean all of us - because when one group is oppressed we are all diminished. Gay people no longer have the right to marry. Now I am not a fan of straight marriage myself. 50% of marriages end in divorce and those are the lucky ones - the others end in death. Nevertheless, if people want to get married they should be able to. I hurt for all my friends who have been told by this vote that they are second class citizens.
And yet.
In the Castro last night, gay men danced in the street for Obama, putting aside the cruelty and injustice of this decision and looking at the big picture. I watched the TV in admiration as they boogied down and I wept tears of joy and pain.
Tuesday, November 04, 2008
Rainbows, Hummingbirds and Straight Men Who Like Shopping for Clothes With You
It doesn't happen very often. Mostly in the movies. I cheer and cheer but the Phoenix Suns never seem to triumph and my favorite shows get cancelled after a couple of seasons.
But sometimes, as rare as a rainbow, the good guy wins.
Savor it today. The sun is shining here and we are assured a victory. Savor it as people flood the streets dancing and banging on pots and pans. Savor the moment because it will fly away like a hummingbird and our normal lives will continue and after a couple of weeks we will stop waking up in a state of wonder. But today is our St. Crispins Day and "this story shall the good man teach his son" as Shakespeare ( or Henry V if you will) said. But instead of a "merry few" the whole world is waiting and hoping for this and it's actually going to happen.
It's an amazing day to be alive.
President Barack Obama.
But sometimes, as rare as a rainbow, the good guy wins.
Savor it today. The sun is shining here and we are assured a victory. Savor it as people flood the streets dancing and banging on pots and pans. Savor the moment because it will fly away like a hummingbird and our normal lives will continue and after a couple of weeks we will stop waking up in a state of wonder. But today is our St. Crispins Day and "this story shall the good man teach his son" as Shakespeare ( or Henry V if you will) said. But instead of a "merry few" the whole world is waiting and hoping for this and it's actually going to happen.
It's an amazing day to be alive.
President Barack Obama.
Monday, November 03, 2008
Morning Cup of Poem
Lessons
by Pat Schneider
I have learned
that life goes on,
or doesn't.
That days are measured out
in tiny increments
as a woman in a kitchen
measures teaspoons
of cinnamon, vanilla,
or half a cup of sugar
into a bowl.
I have learned
that moments are as precious as nutmeg,
and it has occurred to me
that busy interruptions
are like tiny grain moths,
or mice.
They nibble, pee, and poop,
or make their little worms and webs
until you have to throw out the good stuff
with the bad.
It took two deaths
and coming close myself
for me to learn
that there is not an infinite supply
of good things in the pantry.
"Lessons" by Pat Schneider from Another River: New and Selected Poems.
by Pat Schneider
I have learned
that life goes on,
or doesn't.
That days are measured out
in tiny increments
as a woman in a kitchen
measures teaspoons
of cinnamon, vanilla,
or half a cup of sugar
into a bowl.
I have learned
that moments are as precious as nutmeg,
and it has occurred to me
that busy interruptions
are like tiny grain moths,
or mice.
They nibble, pee, and poop,
or make their little worms and webs
until you have to throw out the good stuff
with the bad.
It took two deaths
and coming close myself
for me to learn
that there is not an infinite supply
of good things in the pantry.
"Lessons" by Pat Schneider from Another River: New and Selected Poems.
Saturday, November 01, 2008
My Hero
Barack Obama has stated from the outset that his race was not about a cult of personality but a movement – a movement which requires something of all of us. Like Kennedy said “Ask not what your country can do for you but what you can do for your country.” The next several years will require us to be the best we can be.
It is in that spirit that I emphatically state that Barack Obama is not my hero. My hero is a 16 year old man. This young man has been dealing with his parents’ unnecessarily painful divorce and the fact that his mom has one of the worst illnesses a person could have. He watches as piece by piece she is taken away from him. He cooks all his own meals. He sometimes carries her or buttons her coat. He stays calm if she suddenly can’t breathe or she wakes him up screaming because she’s broken a toe. He has the courage to tell her when life with her feels like “holding a hot poker” and a love of life that allows him to put it behind him at times and just laugh with her.
All that would be enough to make him my hero, but wait – there’s more. This 16 year old has angered some very immature adults who happen to run our small town by having the temerity to disagree with them ( in a measured and balanced way I might add) in his blog on the Albany High site. These “leaders” have called this 16 year old out publicly and accused him (in leaflets dropped on Albany doorsteps) of “Karl Rove-like smear tactics”. Still his response is mature and measured and far more fact-driven than that of these adults, who should be the ones setting the example.
My hero has always combined wisdom and intellect. It was never his amazing brain that got me, but his measured eye and his tender heart - a heart that has been growing like a sea monkey this past year. I’m proud to leave behind some good writing and recordings of my singing but my true legacy, the thing that makes it all worthwhile – is Maclen Zilber.
Another hero is Allison who had a scary allergic reaction to one of her chemo drugs yesterday and as a result will have to have her chemo extended until June. This is a huge disappointment for her and not much to be done for it except perhaps cheery spring hats and lots of love. She is at the beginning of a long and difficult journey.
All you Muselings who write in and tell me about your mom or dad with ALS, your own battles with diseases, the loss of children, loved ones – we all have a story to tell that would break our listener’s heart. If only we could hear that story before we jumped to a conclusion, or took an unfortunate action. The audacity of kindness and understanding.
Hafiz says:
If God
Invited you to a party
And said,
“Everyone
In the ballroom tonight
Will be my special
Guest,”
How would you then treat them
When you
Arrived?
Indeed, indeed!
And Hafiz knows
There is no one in this world
Who
Is not upon
His Jeweled Dance
Floor.
It is in that spirit that I emphatically state that Barack Obama is not my hero. My hero is a 16 year old man. This young man has been dealing with his parents’ unnecessarily painful divorce and the fact that his mom has one of the worst illnesses a person could have. He watches as piece by piece she is taken away from him. He cooks all his own meals. He sometimes carries her or buttons her coat. He stays calm if she suddenly can’t breathe or she wakes him up screaming because she’s broken a toe. He has the courage to tell her when life with her feels like “holding a hot poker” and a love of life that allows him to put it behind him at times and just laugh with her.
All that would be enough to make him my hero, but wait – there’s more. This 16 year old has angered some very immature adults who happen to run our small town by having the temerity to disagree with them ( in a measured and balanced way I might add) in his blog on the Albany High site. These “leaders” have called this 16 year old out publicly and accused him (in leaflets dropped on Albany doorsteps) of “Karl Rove-like smear tactics”. Still his response is mature and measured and far more fact-driven than that of these adults, who should be the ones setting the example.
My hero has always combined wisdom and intellect. It was never his amazing brain that got me, but his measured eye and his tender heart - a heart that has been growing like a sea monkey this past year. I’m proud to leave behind some good writing and recordings of my singing but my true legacy, the thing that makes it all worthwhile – is Maclen Zilber.
Another hero is Allison who had a scary allergic reaction to one of her chemo drugs yesterday and as a result will have to have her chemo extended until June. This is a huge disappointment for her and not much to be done for it except perhaps cheery spring hats and lots of love. She is at the beginning of a long and difficult journey.
All you Muselings who write in and tell me about your mom or dad with ALS, your own battles with diseases, the loss of children, loved ones – we all have a story to tell that would break our listener’s heart. If only we could hear that story before we jumped to a conclusion, or took an unfortunate action. The audacity of kindness and understanding.
Hafiz says:
If God
Invited you to a party
And said,
“Everyone
In the ballroom tonight
Will be my special
Guest,”
How would you then treat them
When you
Arrived?
Indeed, indeed!
And Hafiz knows
There is no one in this world
Who
Is not upon
His Jeweled Dance
Floor.
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