Now You've Made me Angry

Today the blog offers no inspiration and will involve the liberal use of derogatory compound words. It that’s not your thing, read no further.

I received a very toxic blog comment this morning from a man ( yes I’m sure it’s a man) accusing me of faking ALS to what end I’m not sure. Apparently this motherfucker thinks a publicity stunt is worth breaking the hearts of my family, possibly bankrupting my dad and taxing my friends beyond all reasonable measure.

Apparently, getting attention is so important to me that the fact that I got a TON of it on stage and in the classroom in my cushy tenured job I’ve had to leave ,that I would eagerly ruin my son’s life, fill my pretty apartment with ugly durable medical equipment, be awake, and truly alone and in tears at 4am, aspirate on food and water, spend money I don’t have on a recording where I fake sounding worse than I ever have before, eliminate the possibility that any man would be interested in a long term relationship, watch my body get flabby from inactivity, live in fear of falling when no one’s around, be sore from not being able to move said body around, be stuck in a fucking bathroom for half an hour because I can’t open the door, sit apart from the rest of a group because I can’t get up or down the stairs and noting that the lithium doesn’t seem to be working because I’m progressing rapidly.

How dare you?

Maybe I did you some wrong or perceived wrong but how does that make saying such things okay? What did I do to you to justify this bullshit? If your feelings are legit, why the cowardly anonymous comment, why not tell me to my face? You are a douche bag, that’s why.

On behalf of my friends who work so damn hard for me, for my son who faces losing his mother, for my brother and his family too far away to help, my parents and other brother, particularly my dad who can’t sleep at night and who dreamt I had ALS before I was even diagnosed I would like to emphatically state: “Get some therapy you sick fuck and get a life.”

PS – you mention that part of my scam is a miracle cure. Well guess what? I would happily have a hundred motherfuckers like you accusing me of faking this if I could find a cure so I could watch my son turn into a man, meet my grandchildren, outlive my parents and die with gray hair. Furthermore – I deal with ALS every day with a smile on my face and a laugh for the world.. Do you really think a cruel cocksucker’s anonymous late night ramblings can drag me down? You underestimate me, shitbag.

I love you comment people

So early on I gave up on commenting on blog comments since I had no way of knowing if the folks in question would return to the comments to see if I commented….confused yet? I am.

I want you all to know how loved I feel when I get your comments, how tickled I am when some Brit in Kansas offers a “decent” snot, how moved I am when a widow of someone with ALS reaches out, how warm it makes me feel when friends ( whom I’ve never met) of my parents check in regularly. The Mazel Tov comments rocked!

I don’t know you but I love you all – maybe not enough to go to Kansas, but a lot.

Michelle from the clinic came by yesterday and spent time with a few friends and myself making suggestions about how to “Carla proof” the apartment a bit. She is so cool. Then I was interviewed for another newspaper profile and then I slept a lot. I need to save my strength for Saturday and the big wedding.

Today I went clothes shopping all by myself. I know it doesn’t sound like a big deal
(especially when you consider it was just Shoe Pavilion and Ross Dress for Less) but it was a huge kick for me. I got home, had a nice catnap and then settled into a night of writing music.

My friend Ali calls me “the busiest person with a fatal illness” she knows and our mutual friend Gerry came up with a great James Brown-esque tag based on that: “The busiest dying person in show business.” I like it.

Mazel Tov!

My friend Kim did a play reading last night. I was too tired to exist but I really wanted to be there. As the actors assembled I thought “Maybe I can just close my eyes for a minute or two…” Then they began and almost immediately I was drawn into the world being created. That’s how life is now. I summon up the energy when I can, knowing I will pay the price but glad to be out there in the world. It was also the second night in a row that a cute guy carried me down a flight of stairs so that alone was worth the effort.

Kim’s play is unflinching in it’s portrayal of the dark shadowy side of motherhood and of being an artist. I almost feel compelled to turn my head away from the painful scenes she offers up. Then these noble and profound moments shine through which make me hear them more because the messenger is flawed. I hope I do that with this blog – show you a flawed and often frivolous person – vain, boy-crazy, reckless – who still has a message to deliver from the other side.

Here’s what Kim’s character “Woman” has to say:

But here’s the sad secret of the living, we’re squanderers. And these gifts? They fade.

For just that one dazzling moment you stand briefly in the threshold between both worlds, pausing in the door frame, and you can see ALL that you have and ALL that you have to lose and then someone jostles you, “excuse me, pardon me, coming through,” and suddenly you’ve crossed over, back to the land of the oblivious. You swore you would never forget! You would never take anything for granted again. But then one day you look up and you think, wouldn’t another trip on the ocean be nice.
Doesn’t that light look pretty sparkling off those waves . . . “If only…”

I love when a play makes me cry. I love when words make me cry. I read Ali’s account of our time at Harbin and I cried just feeling the love that went into taking me up there and handling all the complex logistics of steep stone stairwells, naked helpers and the emotions that inevitably boil up when you know you’re doing something for the last time. I won’t be back to Harbin, this I know.

We laughed and cried so hard – sometimes at the same time. Ali is engaged which is so rewarding since I have seen her through so many bad dates, jerky guys and the sense of hopelessness about finding “the one.” I remember her showing up on my doorstep, face puffy saying “ I have lamb chops and a broken heart. Can I stay here and cook them?” I loved her so much at that moment.

Ali has commented on her blog about the irony of my lack of gray hair ( makes me wonder - will I die before I have to dye?) At Harbin she noted that despite nursing my boobs have held up ( modesty prevents me from quoting her exactly) and then later she said rather emphatically “Oh my god, you have no cellulite” to which I replied “Just another reason I have to DIE!” Most people would have tsk tsked me or just looked pityingly at me for being afflicted not only with ALS but also with a horrible sense of humor. Not Ali. We laughed heartily if painfully. I like making her laugh even though she almost killed me the next day at Lisa’s Bachelorette party which took place at Edith’s house.

One of the women was talking about a drug dealer she had –ahem—been with – ahem -and how she at the time was also a drug dealer and Ali said “Oh so you were colleagues.” I did a colossal spit take, inhaled some of the water and aspirated so dramatically that I couldn’t breathe for what felt like an eternity at which point Kim ( not knowing how bad it was) said “Well this puts a whole new tragic twist on the spit take, doesn’t it?” I thought how cool it would be to go out that way – with a bunch of hilarious women cracking wise. Then I started to cough and we went back to telling scandalous ( and I do mean scandalous) stories.

I had arranged for 4 former students I know from my teaching days to come to the party, do a sexy dance for Lisa and then drop their pants to reveal the words “MAZEL TOV” printed on their butt cheeks. They were all guys in case you’re wondering. Sofia did the honors of magic markering the asses and I did quality control inspections. Once done, Sofia and Theo ( who is – thank God – gay) grabbed me, pulled my pants down and wrote “I love you Lisa” on my ass. I have never in my 45years allowed something like that to happen and I thought “you’ve snogged a complete stranger – how much worse is this really?” So after the guys did their thing, I dropped my pants for Lisa to reveal my true feelings for her to the shock of the young men. “I can do this,” I told them “I’m not your teacher anymore.” To which Nate replied “ I know you can and let me just say, I’ve been dreaming of this moment since my first class with you so I for one would just like to say thank you ALS for making this moment possible.”

I kinda felt the same way.

It’s going to be a busy week. I’m marrying Lisa and Alan ( I’m an internet minister) so there’s a lot to be done before Saturday. Woohoo!

Home Safe from Nude-land

A friend of mine was asked by her son “when do people die?” She is known for her pithy remarks, which are proudly reported to me by her piano player husband. One of my favorites is when she referred to her son’s accident as an “out of potty experience.” On this occasion however she was particularly deft and answered “People have to live their whole lives before they die.”

I like that.

So I’m up at Harbin (nudie capital of Northern California) living my life and Ali and I came to this startling revelation: I am having a great life right now. Yes, I have this fucking disease but I’m having fun. I don’t work, I have a super kid, I like where I live, I have an embarrassment of wonderful friends and family who would do anything for me, I do crazy antics, fun gigs, write about things I love, get love in all kinds of forms, make lots of music, have nice men who are interested in me – the list goes on. Who wouldn’t love my life?

Since the Chronicle article I have had numerous people write this blog with their suggestions of how to cure me. I am grateful for the concern but wish I could make people understand I’m not interested. I liken it to betting on a sports team. Would you throw your money at the Boston Celtics or the Atlanta Hawks? Boston of course since hell will freeze over before the Hawks win…for now. The Celtics are cancer and the Hawks are ALS. The bet money is my time. I’d waste my time on a cure for cancer because there’s a good shot at success. With ALS the majority of my time is best spent enjoying myself. And who’s to say which cure is the right one? Should I try them all? Pick one out of a hat? Use the I Ching? What if they cancel one another out? Some of the cures propose a diet that I have more or less been on since 2001 – does that mean the diet actually causes ALS?

I don’t mean to sound ungrateful but I need to emphatically state a few things.
First of all, I believe healing and curing are very different. I have been on a healing path for some time now and I’m grateful for it. Second of all, this is my life and it’s shaping up to be too damned short. I get to pick how I do this – no one else. Third of all I want to spend every blessed minute I can in sweet surrender to whatever this life has in store for me. I will take the shit and make shit-ade.

late night gratitude

It’s so remarkably beautiful on my deck. The lights on the Berkeley Hills glitter like stars, the BART train passing is oddly comforting.

Here’s some other things I’m appreciating tonight:

Looking out into the audience and seeing I’ve totally cracked Edith up by rhyming “steeple” with “Japanese people” in an improv song.

Singing Circle Game and feeling like it went as well as it could go.

Doing a rare duet with an awesome drummer.

Meeting new audience members and getting to perform for them.

Matt sweeping me up into his arms and running down the stairs with me, twirling me around then trying to kick my hat up off the ground to land on my head while still holding me while I squeal like a teenager. Finally – the upside of ALS! I told his fiancée that if the hat had landed on my head I’d have had to kill her and marry him and she said that if the hat had landed on my head she would have just stepped aside and let me marry him since I wouldn’t last long anyway and she could wait. That’s some funny shit.

6 year old Bella asking my son to help fight the bad guys and him responding by asking her “what exactly would that entail?”

Maclen asking me to please call if I’m going to be out later than midnight.

Singing in the studio with Jon Evans, not being able to do what I hear and realizing that it’s okay.

Hanging out with Mac and Dennis and having them alternate cracking me up.

Having someone blog comment that one of my jokes made the front page of the Doonesbury website.

Letting people take my weight and feeling the love when they hold me.

Stay Cool

There is a piece about me in today’s SF Chronicle. To check it out, go to
http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2008/07/09/DDP811L35D.DTL
It's a plug for Friday's gig which you can read about in the blog below.

I’m sitting on my deck, which has been beautifully re-imagined by Kris and Wendy. The wind chimes are chatting to one another and a moppy headed dude just rode by on his bike and waved up to me and said “stay cool” in a most endearing and comical way. It’s starting to cool off and slow down and for the first time in I don’t know how long I’m alone and not sleepy. It feels great. I’m happy.

I love being alone. I love writing this blog, staring out at the hills, listening to music – you name it. I never feel lonely when I’m alone but I often feel lonely at a party. Go figure.

Monday was clinic day. Dr. M has been appointed ( by my heart) the health professional with whom I cry. We talked about breathing machines, more time in wheelchairs and her concern that I’m alone too much. That’s where the crying started. I am not ready to give up my independence, my chance at a love life ( I can’t walk good but I’m real cute!) and my alone time with my son. I know it’s coming but not yet, please, not yet. Dr. M is a tiny slip of a thing with absolutely enormous eyes and blond hair. I found it cute at the last visit when she told me I needed to gain weight because I’ve got about 30 pounds on her. She’s so tiny that if I sat on her she’d look like a cartoon pancake doctor. She’s very thorough and informative and compassionate and I just love how totally different all the various personalities at the clinic are.

I also saw Michelle the pt, who is this tall dark sexy woman who could be the super villain in a spy movie who seduces the otherwise invulnerable hero with her impossibly long legs and sleepy bedroom eyes. (Don’t worry, Michelle, I’m straight) . She’s very laid back but also incredibly thorough, with a good sense of humor and incredibly supportive.

We bumped into Dr. K in the hallway, who never fails to make me laugh. I absolutely adore his lack of decorum, which humanizes this whole crappy deal immensely. I imagine he’s quite brilliant because he doesn’t have a doctor-type demeanor (unless your baseline is Scrubs) and I can’t visualize him kissing ass or eating shit ( thank god – what a thing to visualize!)

Got measured for the permanent wheelchair (the permobile) which will be chili-pepper red with red hubcaps. Alas, no spinning rims. My triumph of the day was making Mike the wheelchair expert (and drummer) blush. That’s my second Forbes Norris blushing victim! I’ve still got it!

I’m usually wiped out for a day or two after the clinic. I expect it now. A routine-ness has set in around this slow losing of everything. It’s hard to describe how unbearable and how banal these milestones are. Life is a chugging train that’s hard to derail just because you happen to be having a bad week. There are still birthdays, gigs, weddings, calls to answer, errands to complete, dishes to wash and so on. I find it comforting and sometimes so frustrating that I want to scream then I realize I am screaming at the top of my lungs but no sound is coming out and when I look in the mirror, I’m actually smiling.

Anna's Jazz Island

One week from today is a maybe-I-sure-hope-not-last gig. It will be at Anna’s Jazz Island, Friday July 11 at 8pm. Anna's is at 2120 Allston Way in Berkeley and for more info you can go to www.annasjazzisland.com. Anna's mom died of ALS and she's been particularly supportive of my music so I'm hoping I can get her to give me another date quick given the circumstances. In the meantime I'll go back into the studio at the end of the month with the wonderful band and do some of my original tunes ( A couple of which I'm trying out on the gig). Yay.

Next week's gig will feature old tunes, new tunes and of course my beloveds John R. Burr, Jon Evans and David Rokeach with founding DMCer Allen Taylor sitting in fresh back from NYC where he was doing his solo show.

If you only know me from the blog and you come to the gig, please say "hi." I love to meet people who read this thing.

People's Parties

Joni Mitchell visited me in my dreams in the early hours of the morning. My ALS had advanced so I couldn’t communicate but for some reason I could communicate with her. She held my hand and made eye contact and was very warm and maternal.

Interestingly enough, I did meet Joni once, backstage at one of her concerts. Lisa, Czar of Fun had set it up. I had been looking forward to it for weeks then the night before the show I broke my foot and it was too swollen to put in a cast so I was hopping around with an unset, swollen, broken foot. The hospital had armed me with pain killers and either Lisa or Mike had procured a wheelchair. They stacked large bags of ice on me and I wore a winter parka because the ice was so cold and pain makes me cold too. The meeting with Joni was short and perfunctory as you might expect given she was doing a show. Roseanna Arquette’s toddler ran around breathing in the second hand smoke and I felt vaguely nauseous. Thanks to the vicodin I slept through my hero’s set.

But back to the dream. Joni wanted to know how I could bear being so lonely and I said I’m alone not lonely and aren’t you alone a lot otherwise how could you write what you do? Still, she said, it has to be hard and I said I’ve always spent a lot of time alone even when I was young and she said how did you stand it and I said I had you. You saved me.

Then I woke up and remembered how I would listen to Joni sing People’s Parties like she was whispering in my ear.

London Summer Day

On Wednesday, Edith and I hung out in Camden ( Amy Winehouse country) at a famous British coffee shop called Starbucks while Edith tried to patch my tires with crazy glue. It was fun to sit by the canal without a wheelchair and people watch. Alex, a psychotic Caribbean man gave Edith further evidence of my weirdo magnet status. He was compelled to sing horribly to me and tell me that I shone bright like the Caribbean. Jilted by me he turned his attentions to Edith who he rightly found to be beautiful but alas for Alex, he didn’t have any more luck with her than with me. Camden is a little like Canal Street in New York. Learned about Banksy the graffiti artist who makes Keith Haring look like Charles Schultz. His stuff is truly amazing.

The wheels of the chair were so trashed that I decided to push the chair as an ersatz walker over the roughly cobbled sidewalks. I had a bit of a meltdown because I realized that I now need my leg braces to not fall as my ankles are shot. I had 2 falls that day and I felt the need to cry a bit. I stumbled along a little further until Edith stopped the chair and said “okay, at the risk of losing our friendship….get in the chair.” We laughed and I got in the chair. Truth is, I will take lots of chances if I’m on my own but not when I’m with someone else who will have to pick up the pieces. That’s not fair.


This was no vacation for Edith. I was having great trouble with both my hands and legs, I was waking up every couple of hours, it was challenging getting my chair from place to place – she had to deal with the brunt of all of it. She dismantled and put the chair back together several times a day, she lifted it over innumerable curbs, she helped me in and out of chairs, cabs, toilets, she helped me up and down stairs ( and I’m so much bigger than her, I could crush her…if I fell on her that is), she made me breakfast, did my stretches, buttoned buttons, put on jewelry and held me in the middle of the night on Wed while I sobbed uncontrollably. Truth is, I can’t say her name or even type it or think of her face right now without having to fight back the tears. Somewhere along the way I pulled a thorn out of a lion’s paw or something – I don’t know what – because I have the best group of friends in the known universe. I am one lucky sod.

Thursday was the Globe – one of the highlights of the trip for me. Now intellectually I know that the theater is all of 11 years old almost to the day, but emotionally, I felt the history of the original Globe and imagined the real Groundlings with their beer and hazelnuts and I was so deeply moved. The play was delightful as well, as was walking along the Thames, across the Millennium Bridge to St. Pauls. I felt bad at one point when I rather casually mentioned that I may not be alive by the time of the 2010 Olympics and kind of blindsided Edith with that little factoid. She looked like I feel when I get new information about this disease – like someone just knocked the wind out of her. I do need to be realistic though. There is not much time left for elaborate trips like this – they’re physically challenging for me and for my companion. And physical realities keep encroaching. That’s just a fact.

So it takes me a long while to write these blogs nowadays and I tend to stop to give my hands a break. I’ll start the voice activated software soon though I’m afraid it will be tough too because of my annoying tongue. Anyhow, I just took a break and read my daily Writer’s Almanac email and wouldn’t you know it featured one of my favorite poems, which I excerpt here now since it seems germane with respect to the last paragraph. It’s by Mary Oliver and it’s called The Summer Day. Here’s the second half:

I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?

My other highlights of London include Indian food and hijinx. Our hosts Kenji and Julie went with us for an Indian food, which was SUPPOSED to be my treat but Edith and Kenji’s mom beat me to it. It was the best Indian food I’ve ever had and the company was great. Julie wears Charlie perfume which is fitting somehow ( Kinda young, Kinda now, Charlie, Kinda fresh, kinda WOW, Charlie). She’s an energetic dynamo, cheery, empathetic, generous and good natured. She’s in banking but you’d never know it. Kenji is literally an international man of mystery. He has the softest voice of anyone I’ve ever met and his broad smile does not come easy but it’s lovely. He’s lived all over the world, he has a wicked sense of humor and he clearly adores his wife. At one point during dinner Edith left to go the bathroom and I tried (unsuccessfully) to tell them how amazing she was without losing it. I lost it and Julie reached over and grabbed my hand while Kenji said “Don’t cry. She’s really not that nice.”

So after dinner we had our first rain of the trip so Edith needed to push the wheelchair which doesn’t like rain. I asked her to cross the street to the Kings Head Pub where several men were drinking outside under the awning.

Edith: You’re not going to…
Carla: Oh yes I am. Wheel me right up to them. (to the crowd) Excuse me gentlemen, I have an announcement. I am from the US and I’m dying and my friends have given me some tasks to fulfill while I’m here, one of which is to have a snog with a British man. Is anyone here willing to help me out?
Swarthy guy: You picked the wrong pub. Most of us aren’t British.
Pasty-faced guy with glasses: I’m British.
Carla: Will you snog then?
Pasty-faced guy with glasses: Sure (he proceeds to try to dislodge my fillings with his nicotine flavored tongue as Edith and Julie laugh uncontrollably.)
Scruffy and equally unappealing British guy: Are you sure your friend didn’t say shag?
Carla: Why are you offering?
Scruffy and equally unappealing British guy: (somewhat nonplussed by brazen redhead with fatal illness in wheelchair): Naw, just checking, really.

We departed, Edith and Julie still laughing and Kenji saying “Well, I guess we’ll never set foot in that pub again.


I almost forgot to buy the condoms for my international collection so I stopped in at the airport pharmacy and got Boots condoms. The humorless lady at the counter asked me “What airline are you traveling on today?” I replied “Virgin…but not for long with my Boots Condoms!” She didn’t laugh.

Someone sent me an email message offering to talk to me about their “Christian World View.” It irks me when people think that because something has saved their life it’s going to save yours if they sell you on it. Truth is, I don’t need Jesus (though I’m sure he was a hellofa guy) because everywhere I look there are miracles – the way the sun shines through the roof of the Globe, the ancient brick buildings telling their stories, Edith’s laugh, my son writing “biting a British man…that’s disturbing”, the ingenuity of friends and their crazy ideas, the love and generosity that greets me every single day. The whole world is a beautiful temple filled with art so inspiring it will both break your heart and send the broken pieces soaring to the heavens like helium balloons.

Danger Woman

Just like Patrick McGoohan in the famed series Danger Man, I wheeled my sporty little vehicle through the cobbled streets of London meeting danger and intrigue along the way. Like Danger Man I had a beautiful and mysterious woman by my side, though more of a Bond girl as she had that far east flavor. She’s called Lea but here in the US she’s AKA’d as Edith and she needs a TV series of her own.

On day one Rosalie the security agent at SFO feels compelled to regale me with a tail of her menopause woes right up to the live hot flash play by play which further delays us since she has to go get paper towels to wipe herself. It takes half an hour to pat me down but at least I now know that once the weather gets warm enough, Rosalie cuts her hair very short and dyes it red. I’m always telling an incredulous Edith about people who approach me and tell me their life stories – on this trip I offered eyewitness evidence.

At Heathrow among the signs with names that drivers held was one that said Master Bater. Loved it. Our driver was part time a driver for this car service and part time a driver for handicapped people “like me.” Ouch. He hugged and kissed me goodbye at our destination. We handicapped are so loveable, don’t you just want to squeeze our cheeks?

I haven’t quite wrapped my head around that one. It’s like when Endora from Bewitched would transform her son-in-law Darren Stevens into something and everyone could see it but him. I don’t really see that I’m disabled. SAM! (Bewitched reference, which works better if I yell in a nasal voice and shake my fist to the sky.)

Speaking of TV: one night I couldn’t sleep because I couldn’t remember the name of the character Julie Kavner played in Rhoda. I knew I wouldn’t sleep until I did. Hours later: Brenda! Brenda Morgenstern. Thank God! Now did she get married too to that nice guy and what was his…oh fuck. Two more sleepless hours. One night I was kept up wondering if Edith’s oldest brother dyed his hair. I’ve never met the man.

I didn’t sleep or discharge certain bodily functions for the entire trip. 3 uninterrupted hours was my record yet I was mostly cheery.

I won’t tell you about our hosts, Kenji and Julie yet. That’s for later. We had Indian food and I was so tired I could barely negotiate the wheelchair. I also walked like a bowling ball being thrown by Barak obama (if you don’t follow the news he scored in the 30s in bowling which is not a good thing). I was so weak I couldn’t turn the light on (string not switch) flush the toilet or open the bathroom and bedroom doors. That was a fun night for Edith.

We went the next day to the London Eye – a gigantic ferris wheel/observatory that Londoners call “The London Eyesore” It was a very international crowd so no hope finding Rupert, Nigel, Fiona and Basil per my sister-in-law’s instructions. By the way – I will be accepting up to 3 assignments for every future trip unless I deem them dangerous or highly unpleasant. It’s fun to have things you have to do but aren’t site specific.

After the London Eye we went by Big Ben, Westminster Abby and parliament, which was not in session. (Boo.) Edith took my picture with a couple of cops per Mac’s assignment and I bit a lovely cab driver called Richard per Gina’s suggestion. (If you recall, this whole thing started with Gina telling me to “bite a British man.”)

That night we saw a play with some of the best if not the best acting I have ever had the privilege of seeing. I wept at the end of the play as the doomed lovers went off to drown themselves together not so much because I bought the story but because they sold me on the depth of their love and because great great theater is so rare – like a hummingbird –and like a hummingbird it’s life is too damned short and because I still have so much to learn and not enough time to learn it all.

In elementary school I sat on the floor in the library crying one day because I’d never have time to read all the books in the world. I feel that way all the time now.

I’ve had a taste of British Theater and I’m hungry for more.

Tuesday was Hyde Park. We were dropped off at Speaker’s Corner only to find out that incendiary tracts fomenting dissent are only offered on Sundays. Again Boo! We walked through the park and saw the Italian fountains and the Princess Diana Memorial Fountain. Now I was particularly anxious to see this as I expected a tacky horror show like a bust of her head with that hairdo that defines an era of bad fashion and the water would come out of her mouth to commemorate her bulimia (Edith’s idea, not mine). No such luck. It’s a minimalist, tasteful fountain the blends into the surroundings. It’s lovely.

The evening was Picadilly Circus and then a comedy club where we met Kenji who’d spent the day at Wimbledon. Already my wheelchair was showing signs of not making it through the trip. The treads were shreds and the London streets are unforgiving. Somehow miraculously though, whenever we’d hit a bump or curb that Edith couldn’t get us over – just as I was ready to get out and push – one or several men would materialize and lift the chair for us. Thank god we’re so gorgeous.

The bouncer at the comedy club was very helpful, lifting me from lift to chair, lifting the chair up and down the staircase and making Edith cry at his kindness and solicitousness…if that’s a word. Well it is now.

Highlights from the club:

Edith sending a note to the comics' dressing room asking them to announce that the woman in the wheelchair needed to talk to Rupert, Nigel, Basil and Fiona.

and at the top of the show:

John ( comic): Any Americans here?
Edith/Carla: Woo!
John: Woo? By “woo” I see you have severely misunderstood the mood of our nation.

And later, John after a rape joke falls flat:

John: You gave me the topic, don’t boo me now. Besides, I know you ladies SAY you don’t like rape jokes but really you want them.

I am the only woman laughing…I mean howling..at this point.

Finally – coming down the weird old lady lift and being wheeled outside, John says in a loud voice about me “I can’t believe they let those kind in the club.” I wanted to marry him. I chatted briefly with him and a Canadian comic from Calgary who was enamored with the magic mushrooms in Vancouver. Fun guys but sadly no Ruperts, Basils, etc. We had much work to do if I was to avoid plan B of Allison’s assignment which was if we didn't find people with any of those names to either shag or snog a British man.

That’s a good place to end Part One. I can just hear the comments now. “You don’t think she’ll really snog someone do you?” “ No, this is Carla we’re talking about – she’s not going to snog a complete stranger if she can shag them.” “What is snogging anyway?” “Google it.”

Biting British Men

Unless I squeeze one last one in tomorrow morning, I probably won’t be blogging for the next week. Edith ( featured in the April blog entitled Here I sit broken-hearted at http://carlamuses.blogspot.com/2008/04/here-i-sit-broken-hearted.html) is taking me to London! London, England in case you were wondering. We’ll see some shows, walk around and I’ll endeavor to do the things asked of me ( Mac wants a photo of the “average” British cop and Gina wants me to bite a British man. I myself am hoping to find a “Johnny” or “franger” to add to my international condom collection.

I’ll be back at the end of June with stories to tell and gigs to play. Mark July 11 on your calendars – I’ll be at Anna’s Jazz Island in Berkeley at 8pm!

So much tough news this week, so many tears, so much to hold and yet I feel like a punching bag clown, popping up for more with a grin on my face. Life is always calling me to come and play.

What Fresh Bullshit is This?

Bella (5 and 11/12s) and Lucy ( 9) came over to watch the Princess Bride. We watched the movie, ate brownies and popcorn, did wheelchair races down my hall and used my new electric lazy boy to see if they could “survive” the chair without being thrown out of it. I laughed so hard watching these gorgeous girls zoom around in the wheelchairs I thought I’d split a gut. Spending time with kids has become so important to me.

Lucy made me a pair of great green earrings and Bella brought over a magic potion. She had asked the tooth fairy to bring her something that could cure a dying person. She got a hunk of gold under her pillow, which she put in a jar filled with water for me to drink. How do you stay dry-eyed for that?

My tongue has started to give me trouble. All of a sudden it is challenging to keep it moving the way it’s supposed to and Lisa said my speech was thicker. The folks at the clinic do not think it is a lithium side-effect, they think it is ALS. I think it’s unfair.

On the upside, I laughed almost as much as I cried today and given what a shitty day it was, that’s pretty cool.

Oh and the butterfly I told you about the other day is still alive!

This Just in: Czar of Fun to Wed

The picture above displays the core Driving Miss Craisy members minus a couple of women and our two brave men. Today’s featured member (Volunteer of the Week!) is Lisa.

Lisa is the Czar of Fun. Her fertile mind is always dreaming up little “mystery trips” as she calls them to places like Little Kabul in Fremont or hot air ballooning or the like. Lisa is getting married this summer and if it were anyone else I’d be worry about her Czar of Fun status being compromised. So many couples become partners in the business of home-making and forget about the fun they had courting. I’m happy to say that was not one of the problems in my marriage but I see it happen to people and it’s subtle and gradual. Lisa and Alan won’t fall into this trap. They are on a delightful adventure together.

Here’s a sample of the ways Lisa earns her way in the world: stilt-walker, balloon animal making clown, giant dancing cookie, movement teacher, face painter, acting teacher, painter of sculpture guitars, horse rider, elf, improvisor, writer…the list goes on. She is multi-talented, super driven and outlandishly original. Lisa once read that Orson Wells liked a particular brand of cigar from Amsterdam. When she was there, she picked up a box and carried them around in her car in LA thinking to give them to the great director one day. Well one day came when she was doing an event dressed as an elf ( she’s short so it’s plausible that she could actually be an elf though pixie fits better). The party was across from Wells’ apartment so afterwards she showed up at his door and presented him with the cigars…dressed as an elf. Wells died not long after and I imagine him in his boozy decline, reeling to the door only to be met by and elf bearing a box of his favorite cigars. I imagine him waking up in the morning marveling at his crazy dream then spying the cigars on the coffee table. I do believe in fairies. I do.

I remember crashing at Lisa’s house once and she put a mint on the pillow. I hit my head getting into her car ( my coordination is not so great now) so she gave me a “special kid” helmet to wear. She is the queen or whimsy, the Duke of Daring, the Sultan of Silliness.

She is also a hell of a chauffer, organizer of bodywork, maker of practical gadgets, duct-taper of boobs for strapless dresses, transporter of wheelchairs, purchaser of soy chai lattes and dispenser of love. Hardly a day goes by when Lisa doesn’t call with a perky “just a check-in call, no need to call back.” Hardly a favor have I asked that she hasn’t said “yes” before I could finish my request. She almost single-handedly made it possible for me to direct my final show. Without her it wouldn’t have happened.

So when she overestimates my energy or bravery (“Carla, is it okay if we pick you up and put you on the top of the car for a photo?” “No, Lisa.”) I adore her all the more because it’s her relentless optimism and her fervent hope that somehow this is all a bad dream and I’ll return to robust ( though not as robust as Lisa) Carla that keeps that brilliant mind churning with ideas of how to make my last years a magical mystery trip.

Now, don’t you wish you were marrying her?

In other news, my lithium levels are low. I take this as a good sign. Maybe when they get to where they’re supposed to be I’ll notice a “not change.” That would be really nice. Last night my son ( who is reading…for fun… a book on Tort Law) and I took the bus out to dinner and to see Kung Fu Panda. I was so happy to be doing something silly with him. The wheelchair/bus maneuvering is getting easier and easier. Once I get my permanent chair I’ll be able to go out on my own on the bus and give Driving Miss Craisy a well-deserved break.

butterfly in a box

Last night my friend’s daughter showed me a butterfly. It had landed on her finger and she and her mom had managed to get it into a shoebox. I peeked into the box and saw this beautiful black and yellow butterfly. Its’ colors were this vivid contrast against the scarf which had been lovingly laid in the box. My voice feels like that butterfly. I did a concert last night and with great effort I can still make it beautiful enough to please the audience but like that butterfly it longs to soar and it can’t. Nothing about this disease is more challenging than the way it has clipped my performing wings. And yet if you could see the intensity and passion of this beautiful little girl as she told how the butterfly came to her. How she watched eagerly for our reactions as we peeked into the box, you would see a fierce beauty in the capture of that butterfly. There is a beauty in this slow, slow dying of everything I thought was me and yet I am still here. It got me giddy on the gig, making stupid jokes and cracking up mid song a couple of times – I think it was giddiness from being able to rise above this huge sadness of knowing there are only a few gigs left.

Friday was my first lithium study check-in. I wish I could say I notice an improvement but the last few days have been nearly impossible. My legs, lower arms and hands shake vigorously, walking is more like careening and it’s hard to operate the scooter because of how weak the thumbs are.

I was hoping I had just pushed it too hard on Sunday when I attempted boogie boarding again. The day was initiated by Jonathan – a very nice person and wonderful playwright – who brought along his friend Ingrid and her friend D’Alary ( great name, huh?) who were joined by patron saint of fun, Lisa. They got me into a wet suit, got me onto a board and pushed it around in the water. The hardest part was going out against the big waves and being pounded by them – harder still for all of them to keep me on the board. The wet suit made the water wonderfully tolerable and it did feel lovely to be out there. Didn’t catch any real waves but I know months from now I’ll look back enviously on the time I could do just that. At one point Ingrid had everyone shift the board around so I could see the view. It looked like an oil painting. I cried as they carried me back to shore because it was all so beautiful.

I thought to myself that if my legs and hands didn’t recover it was probably worth it. My doctor, however thinks these new developments have been creeping up and I just noticed it. The good news about that is I can keep doing things like trying to boogie board. The bad news is that this trouble walking and using my hands is probably not temporary. The other bad news was that while I did well on the vital lung capacity test, I didn’t do well at all on the other breathing test, which indicates what I already knew from my trouble singing. My diaphragm is weakening. At my next visit we’ll discuss measuring me for my permanent wheelchair and nighttime breathing machine. Boo! They also tried to get me to leave with a walker ( more stable than the cane) but I couldn’t do it. I think I’d rather crawl.

I got the gift of the century the other day. Maclen told me I had shown him by the way I’m dealing with this how to deal with a tragedy. We had a long real talk about how it’s okay to have fun, happy days in the midst of a horrible situation, that you don’t have to worry about experiencing the grief – it will blindside you when you least expect it.

That’s how it is. Thursday night was the Bay Area Theater Sports benefit. It was wall to wall laughs. They raised over 1200 and I had a ball. So many amazing people helped out but particularly Laura Derry the instigator and Rebecca Stockley. Patron Saint of Fun Lisa helped out as well as a host of amazing improvisers including my colleague Paul Killam who made me pee almost with this game in which he and another improvisor walk blindfolded through a stage of mousetraps while doing a scene. Hysterical. The only time I had trouble was when I remembered at the end why we were all there. The tears came and went quickly. It was a good day.

Several months ago I told my engineer/producer/bass player that I didn’t know if I wanted to live if I couldn’t sing. I was over-reacting. I see the end of singing coming and I will deal. I will absolutely live. I still have this blog, the people I love and the memory of a beautiful little girl who is still young enough to get what a miracle it is to have a butterfly land on your finger.

singing

If you live in the Bay area, please come to the Jazz School this Saturday night at 8pm. I'll be singing songs from the new cd and the now-being-recorded cd as well. Maybe an original or two if I have the courage to share them. Each gig is a gift at this point where I hope the voice and energy will hold out to the next one but recognize there are no guarantees. There is really nothing like singing.
Here are the details. Tell your bay area friends if you're an out-o-towner.

Jazz School
2087 addison st between shattuck and milvia ( reasonable parking lot across the street)
Sat june 14, 8pm
Featuring: me, john r. burr, kai eckhardt, david rokeach, mike zilber.

I'll write a "real" blog soon.

"You Can Heal Your Life" or "It's All Your Fault, China."

The first time I got sick I read Louise Hay. Louise writes about how we can heal our life by recognizing how our own thought patterns affect the health of our body. Our emotions, you see are the underlying cause of illness and understanding this can rid the body of the disease. Made sense to me.

A friend brought me Louise’s analysis of ALS around the time of my diagnosis. Apparently it is caused by fear of success. This makes sense since who's ever heard of a successful ALS patient. (New rule - you can't bring up Shostakovich, Lou Gehrig, Stephen Hawking, David Niven, Charles Mingus, Jacob Javitz and Mao Tse Tung). Now I knew I had a LACK of success but no idea that I feared it. I even thought I was actually attempting to be successful. Who knew? Even more sobering – one in 100,000 people are apparently fearing success and bringing about this unfortunate illness. Luckily, Louise has affirmations you can utter to address the root cause of your illness. The idea is to replace your “stinkin’ thinkin’” ( "I shun fame and in so doing dare the gods to rain down their motor neuron disease") with positive affirmations ("I embrace my success and welcome it to my life.") thus reprogramming the subconscious to think differently and to automatically react in a more positive way when trigger situations occur in your life.

Now it may surprise you to find out that I have a bone to pick with Louise Hay. There are only about 30,000 people in the US with ALS and we are included in her book. Fair enough. But who is addressing the underlying emotional patterns that causes 28,000 people a year in this country to allow themselves to succumb to a gunshot wound from a random homicide? Arguably there is a far greater risk of dying from the bullet of a mad gunman or irate spouse that to contract ALS and I think people should know what kind of thought patterns are allowing a bullet, - let’s say from an M-16 rifle,- to turn the point of impact ( or in layman’s terms, say “the head”) into hamburger. So it’s only fair to ask: What kind of affirmation will prevent the hydrostatic shock to the body, which occurs when a high-velocity projectile burrows at break neck speed through the body, causing widespread organ damage and disruption of nervous functions?

What kind of affirmation indeed.

In light of Louise Hay’s rather glaring omission, I have a few suggestions. I suggest you employ all of these because you can’t be too careful:

Affirmation 1: I am kind to troubled teens in trenchcoats.

Affirmation 2: I seek help when my husband (who recently lost his job and thinks that Maury Povich is a prophet ) receives secret transmissions through the massage chair’s remote control telling him that he is not the kids’real father

Affirmation 3 :After dark I take a cab.

Affirmation 4: That military recruiter is full of shit.

Affirmation : When you live in the projects, agoraphobia is not such a bad thing.

But what are the underlying fears that cause some people to die from gunshot wounds and others to live? It’s not fear of success – that one is taken. Thanks Louise! It’s not fear of lead - unless we have some proof that gunshot fatality victims had a history before their deaths of insisting on being x-rayed without the heavy protective apron. Is it hubris? A certain superman syndrome? Do we all need to reach a level of emotional evolution equal only to Keanu Reeves’ Neo in The Matrix? Now that dude understood that bullets are all in our mind and unlike Jesus and Ghandi (who could have benefited from Louise Hay, particularly Jesus who clearly had a Christ complex) he didn’t die.

SO what if you do everything that Louse Hay suggests and do her ( and of course my) affirmations daily to safeguard yourself against all diseases, earthquakes, random mortar fire and multiple stab wounds and you still get sick? Well then remember what Morpheus said to Neo in The Matrix: “Fate, it seems, it not without a sense of irony.”

Final thought: do you think Sharon Stone and Louise Hay are in the same support group?

Das aufregend andere condom

Okay, if you’re over 60, or consider yourself in anyway conservative, this is probably not the blog for you. Skip down to the second half of this blog instead or tune in later in the week when I write about Amma or some other lofty topic, because today I’m writing about a special gift I received.

Now don’t get me wrong – I believe one can never have enough copies of Tuesdays With Morrie lying around the house – just in case. It’s a thoughtful gift to be sure. Every once in awhile though, a friend brings me a gift that tickles me. Christina brought back some Billy Boy Condoms from Germany - Das aufregend andere condom or “the other exciting condom”. Not the first gift on most people’s list for the discerning ALS patient but one that cheered me to no end and made me determined to find an opportunity to test drive one while I can. You only have to look at the picture of Billy Boy to know it is indeed das aufregend andere condom, boasting the German engineering precision and attention to detail that we all desire in our love making endeavors. The condoms are mit extra feucht which means they are extra moist as if the germans anticipated that when one speaks a language wherein one has to spit at one’s partner to say I love you (Ich liebe dicht) one cannot assume that the partner will be um….shall we say self-lubricated? Sexy fits really well before Italian, (as in sexy Italian) Frenchman, Greek, Israeli and of course Canadian but German? Not a common word pairing though I’ve seen some pretty hot german guys who could probably make me extra feucht.

I want to be the spokesmodel for Billy Boy. I would wear a purple peignoir set and hold the box next to my face and sigh seductively “Ah Billy Boy. Sie sind zu meinem Vergnügen so aufmerksam.” ( Oh Billy Boy, you are so attentive to my pleasure) That seems like a german ad, doesn’t it?

I think I want to start a condom collection of condoms from around the globe, which I can then bequeath to Mac. If you’re in a foreign country – bring me back a quirky condom.

Yesterday I had lunch with Kris at Scott’s and had half a glass of wine in the middle of a weekday. I felt like one of the ladies who lunch – it was grand. Funny how in the midst of trying appointments and difficult circumstances that oasis of lunch with someone you love can be such a treat. My friend Andy told me that when she was sick with cancer, after every doctor’s appointment his mother would reward herself with some kind of treat – a lunch, a trinket, whatever. I like that idea.

Kris and her husband will no doubt be listing me as a dependent on their 08 tax return. She has done so much for me, it’s astonishing. I am no longer doing laundry because I can’t get the quarters in the machine so she and some of the other girls take my laundry when they drop off my weeks supply of food from Cecilia. You have never seen anyone fold like Kris can. I could put her folded laundry out as a decoration.

Kris is a paradox. On the one hand she has the whole hostess thing totally dialed in. She cooks gorgeous meals, bakes cookies for the baseball parties, volunteers, plans extravagant parties with perfect decorations. She served us fondue once and we actually had to go into a time machine she had built back to 1975 to eat it. At Christmas her house looks like a tree farm or Martha Stewart’s ranch house. She lives on the same block as her parents’ down what they call “the long hallway” and seems to always be hosting family brunches and other festivities. In short, the energy and industry that are required just to be her is exhausting. But there is another side to her.

It’s the woman who shows up at 10AM to help me paint my house (when I had a house to paint) with a giant can of bud…which she actually drinks! It’s the woman who followed the Dead and who is still in love with her college sweetheart. It’s the avid consumer of diet pepsi and mystery novels who is passionately opposed to the death penalty and smart enough to articulate an intelligent position in the face of those who would advocate for it. It’s the woman whose mix of youthful colloquialisms and mastery of the English language creates a style of madly poetic speech that is unmistakably Kris. Imagine a well-manicured, perfectly accessorized mom of a young child asking the kid “Dude, what is your saga?” before launching into a complex analysis of our fractured democracy. That’s her.

Recently I spent an obscene amount of money on tickets to see Flight of the Conchords. It was worth it. Mac and I both agreed that we wanted to marry that concert and have a long committed relationship with it. I was planning to add an equally obscene amount of money onto the deal to rent a limo to take us to the show since it sucks to wait for a cab and BART was too far away. Kris suggested we instead go with her son and his dad and offered to drive us all to the city to her husband’s office. Remembering my limo plans she showed up in a chauffer’s uniform and served champagne ( in glass flutes) and strawberries and non-dairy whip.





I can’t even list the ways that this woman has shown up for me, running interference on healthcare, legal issues, retirement, etc, offering to fix the flowers on my deck because she knows how much I love sitting out there and of course holding me while I heaved with sobs like a little girl, wrapping her motherly arms around me until I remembered that everything would be okay.

Monologue from a Dead Person

This is written from the point of view of a dead person. Don’t ask me why this came out, but it did so there you go.

Dead person: “Dead is the new alive” Now I know what you’re thinking. I was just being trendy. After all, more and more people seem to be doing it and I was always one to keep up with the current fashions. But this one is really cool. Trust me. And mark my words, it won’t be long before all of you start to follow my lead.

Now I’m not knocking life – life is good as the over priced t-shirts say. Have you noticed that t-shirts with ironic and acerbic statements cost half that of cute and or inspirational t-shirts. I may be dead, but I still like a bargain so I’d take a Bush Sucks t-shirt over the Life is Good one any day.

But I digress. Since you’re all assembled and probably feeling somewhat bad – I guess about being left behind – I wanted to tell you some things about life I really liked – back when living was “in.”

Dewy grass
Now this is something I remember from childhood. I think all the dewy grass was replaced by Starbucks and Bed, Bath and Beyond because I can’t seem to find any, but when I was young the dew would cling to the grass on a summer morning and I would lie in it and get all wet and look up at the clouds….which I think you still have since Barnes and Nobles hasn’t figured out how to annex the sky yet. At night as the grass got damp it was great to run and shout in it with your friends at the end of an endless day.

Hawaii
Go to Hawaii before you die. Since we don’t get to pick when you die, book a flight immediately and hope the plane doesn’t crash. Go to Napili Bay and swim with the sea turtles and take the road to Hana. Stay in a tree house or a yert.

The Marx Brothers
And other great comedy. I miss it all except Stephen Colbert who is so big that we all stop what we’re doing here in the afterlife and tune in at 8:30 every night. I miss having a belly though. I never realized how great it felt when your belly shook when you laugh. I must think of a great joke right now so you can feel your bellies while you laugh. A pedophile and a young child are walking through the forest. It’s dark and the child says to the pedophile “I’m scared.” To which the pedophile replies “You’re scared? How do you think I feel? I have to walk out of here alone.” If your belly isn’t shaking your head is, I bet.

Great Sex
I don’t miss mediocre sex or bad sex, just the great sex. There’s no gender up in heaven so it’s only this distinction that helps us figure out who was a man and who was a woman. The men even miss the disastrous sex.

Cheese
Can you believe there’s no food in heaven? It’s all down in hell – used to torture people. I remember loving cheese because it was something you ate just for fun and rarely if ever for nutrition.


Moments When Grief and Happiness Collide
I remember this one yoga class when I was sick – that is to say before I died. I couldn’t do most of the poses and my body kept cramping up in tremendous 30 second blasts of pain. I lay back on the mat and fought back the tears when I looked and saw two birds perched on the power line outside the window of the yoga studio. They were deep in conversation with one another, totally at home on this scary electric line, like angels sending me a message. “One day you won’t be able to watch these birds, but today you can” I said to myself and my heart flooded with joy. I miss that sloppy human feeling of grief and the tremendous relief when happiness barges in to save the day. I remember those birds.

You
I miss you.

Heroically Sportless Aromatic

So two more events are coming up. One is a fundraiser at BATS (Bay Area Theater Sports) on June 12 and the other a gig with my band at The Jazz School on June 14. (The answer is yes, I’ll be very tired. I also have recording and lithium trial business that week.) To find out about BATS’ fundraiser go to http://www.quiltmamas.com/dmc/ways_to_help.html. To buy tickets email the amazing Laura Derry at: batsfriendsofcarla@yahoo.com or call
(415) 759-1304. This is going to be a very funny and entertaining evening with some of the best improvisers around – period. Even if it weren’t a fundraiser I’d recommend it.

A brief digression from plugging: if you only know me from this blog you don’t know that I am bringing the hilarity to ALS – a sorely needed commodity. I’m pretty sure that if you held a summit with Stephen Hawking, Lou Gehrig, Shostokovich, Charles Mingus and David Niven, all of them together couldn’t come up with one ALS joke as funny as my friends and associates and I do on a regular basis. You can spell the word “laugh” out of the letters in amyotrophic lateral sclerosis (or Lou Gherig’s disease) and in fact if you mix up and use all the letters up you get “laugh or hoot my ass sillee - crises are topical, girl…. dss” or something even better than that if you’re smart.
If you just do " amyotrophic lateral sclerosis" you get “heroically sportless aromatic” which is fitting and just "Lou Gehrig’s disease" gets you “She is a sludgier ego.” Okay…

When I digress, I really digress. This is all by way of saying June 12 promises to be highly entertaining and big ups to Laura, Rebecca and Lisa for the legwork, the caring and the vision.


June 14 is a show at the Jazz School to launch the new cd. Info about that show can be found at:

http://www.jazzschool.com/html/events_concerts.html
http://www.quiltmamas.com/dmc/carlas_performances.html

Every singing gig has become sacred to me since I don’t know how quickly the voice, the energy, etc will go and how many gigs are left. Since I was 11 I had a ‘thing” for audiences but now the crush has blown up into an all out love affair. We’ll be doing songs from the cd as well as a new one ( or two if I can get it finished) that I wrote plus one or two from the upcoming cd which I’ll be working on all week prior to the gig. The amazing Kai Eckhardt will be stepping in for Jon Evans on bass and the rest of the band are the usual suspects – Mike Zilber on sax, John R. Burr on piano and David Rokeach on drums. All three of these guys are among the best on their instruments so it’s an honor to get to play with them.

If you’re in town I hope you can make one or both of these or tell your friends about the events.

In other news I checked off another bucket list adventure and I’m running out of things on the list. I still need to take something from a hotel minibar ( there was no minibar at the Vancouver Holiday Inn), Pacific Grove and the butterflies ( oct) Disneyland ( this summer) drive my miata in an abandoned area
(next week) and be reckless about love ( easier said than done). I also need to add to the list just incase there’s some unwritten cosmic law that once you’ve completed your list you die.

So here it is: 1) wheelchair athletics: skiing, whitewater rafting –something adrenaline inducing 2) go to the red light district in Amsterdam 3) go down a snowy slope on a toboggan 4) sleep under the stars out in the world not just on my deck 5) write a book or a screenplay or both 6) go to Vegas as someone else and stay in character the whole time – I want to go as a woman who wears skin tight purple pants and has decals on her really long finger nails. Her name is Dee and she’s from a suburb in Chicago since I like that accent. She likes roulette.

The Four Bullshit Truths

I began my drug trial on May15 and tomorrow I go in to get my blood levels for lithium tested. It’s anybody’s guess to know how long before we know if the drug is helping slow down the progression of the illness. The hands keep weakening, the neck cramps every day. I don’t believe I will beat ALS. I’ve never had that kind of fighter instinct. At Sports Day in Kindergarten I came in dead last, slowing myself down even more because I was yelling to my best friend at the time “Good luck, Jonathan, I hope you win!” I never pushed my career because of that same lack of killer instinct …or maybe it’s a lack of entitlement. It makes no sense to me that I could beat an incurable disease. And yet, I’m an optimist. Is that weird or what?

My career and relationship dreams never came true. The end of my marriage did not break my heart but events since then most certainly have. My body is betraying me and even when I do what I’m told and move into a wheelchair early, I still get injured, I’m still sore and still shaky from my launch the other day. (By the way, it’s not the flying that’s dangerous, just the landing). I adore my son and face the reality of leaving him and wondering will he allow others to nurture his tender heart when I’m gone? How can I bear to leave him? And yet, I’m an optimist. Go figure.

All the things I mention are true. They are unavoidable. The first noble truth is that suffering is inevitable and on bad days I want the Buddha to have called them the Four Bullshit Truths. But mostly I notice how blue the sky is, how delicious laughter sounds, how great it feels to hold a warm cup of tea in my hands. Mostly, I grab people and hug them and tell them I love them when I have the impulse to do so. Mostly, I see miracles everywhere – in my son’s blogs and jokes, in the earnest joy of little kids, in the beautiful melodrama of teens and college students, in my dad’s tears, in my amazing friends and their support and in loving someone and being loved back.

I had a dream the other night. I was walking down the street with a dear friend and I was walking completely normally. I felt completely normal and healthy. It was a glorious sunny day. I turned to my friend and said “ I don’t know if I’m happy because it’s sunny or it’s sunny because I’m happy.” And my friend said “it’s the latter.” I woke up in the warm glow of love and contentment.

How do I have time to fight ALS when all around me the world invites me to joy?

You Were Expecting Maybe Randy Pausch?

This is the speech I gave at the year end banquet at my school. It was also my last banquet period. It's kinda raunchy at times but hey, that's me. I think the underlying message is still good.

vancouver

I sat next to my father-in-law (he’ll always be my father-in-law) with my head rested in the crook of his arm, our arms around each other. What a funny pair – he slowly losing his amazing mind to Alzheimer’s, me quickly losing my young-for-my-age body to ALS. He came in and out of focus, sometimes making perfect sense, sometimes speaking some divine confused poetry. “I want to take you with me” he told me. To the afterlife, I wondered? We’re in a macabre race he and I, and that day I felt like I was winning. “I better let you go so you can eat” I said. “ I just did” he replied. “The food of love.”

I am still shaky from my first solo flight on the wheelchair – and I do mean flight. I was alone when it happened. The wheelchair hit a bump at warp speed and I flew 6 or so feet, landing on my knees. There was nothing to hold onto so I couldn’t get back up and had to wait for a construction worker to lift me. I was so shaken I didn’t even track if he was cute. I hurt – arms and legs both - but nothing is broken. I am however completely unable to use the left hand right now even for gross motor stuff. The fingers are jitterbugging and completely out of my control even with my brace on.

I worry about writing about this since just the other day I had to convince my dad that I needed to be independent. He and some of you other concerned citizens might read this and think “she shouldn’t be out on her own.” She should. She will. I would fall again for the chance to go find a restaurant, a card shop or a beach – as I tried to do in Robert’s Creek. No sidewalks there so I took the wheelchair along the side main drag of on my own. My father white knuckled it and apparently tried to get others to check on me, but ultimately let me go even if it meant me getting into trouble ( what did he think I’d do, take a flying leap out of the wheelchair? Oh wait….) I couldn’t make it to the beach
( too steep) but sometimes the reward is in the trying.

3 year old Annabel and 1.5 year old Atticus, my adored niece and nephew are the smart ones. They refused a ride on the chair – lap or no lap - but insisting on pushing me in it! I laughed until it hurt. It was so hilarious and a little heartbreaking to have these beauties behind me guiding my chair. The ultimate test in accepting help.

Don’t get me wrong. I accept help every day. I see the day when I need help all the time getting closer and closer. When someone does for me – from grabbing my arm to opening a door- I take in the care behind the gesture and I recognize that it’s a loving act to accept the kindness as well. I just cherish the things I can do on my own and I don’t want to let them go. If I fall down then okay, I fall down. We all fall down.

Still it is other people that matter in the end run and I’m grateful to have them around. I look back at images from my visit and I want to press them between wax paper to preserve them. Even still there were friends and relatives I wasn’t able to see ( such limited energy, have I) and wish they could have been part of my trip.

Here’s some moments from the folks I did see:

Annabel saying “Bravo boundaries Auntie Carla” or looking at a flower bed and saying “Look at this, I LOVE it!”

Snuggling on the sofa in between my brother and sister-in-law after crying because I can’t draw for Annabel anymore.

Weird man in the park remarking that you don’t often see a “hot redhead in a wheelchair.”

My brother walking up to me and putting his head on my shoulder.

My other brother telling us about his volunteer work for people in wheelchairs which entails, as far as I can tell, taking a quadriplegic to a strip club. I’m not kidding. That same brother crying in my arms in the White Spot parking lot.

Atticus throwing his ice cream down on the ground the way football players throw the ball after a touchdown or field goal or whatever it is they do, then grinning proudly or him intently singing “you” at the end of each phrase of Happy Birthday.

My parents leaving me alone to fall even though it goes against all their instincts. This is an act of love.

A dear friend calling from home to put me in touch with a friend of his who is going through his own health crucible. Listening to the message and thinking I might be able to help someone after all the help I’ve received.

Wheeling along the sea wall with my mother, looking out at the blue blue mountains and the sailboats in their slips and the Burrard St. Bridge. Remembering without regret that I used to ride this route on my bike every day to work. I’m still on wheels. Still traveling the same gorgeous path.

My friend Gordon referring to himself as a “tiling savant.”

My mom saying she’s proud of me.

Some lengthier scrapbook items:

My sister-in-law who has undergone that transformation that many women do when they have children. They become mother to the world. She was always a lover of people but now she is such a remarkable mother (they’re both great parents) and their children are so damned happy. She is much taller than me (I’m 5’8” to put that into perspective) so when she holds me, my head is against her chest and I feel very safe. “How am I supposed to get through this?” I ask rather rhetorically since of course there’s no choice. She coos in my ear “You’ll get through by being weak, you’ll get through by being strong. You’ll get through in love and you’ll get through all alone.” Then she kisses my forehead and says “wow, you smell the same” referring to my brother and I. It makes me happy to know I smell like him. Like me he is also funny but if I’m Edward G Robinson with a machine gun spraying jokes like so many wild bullets, he is an elite Israeli sniper, only taking the shot when he is assured of deadly precision. In other words he kills me every time.

My mother and I down at Granville Market. We walk by a theater where I had planned to try to do Wedding Singer Blues. I was about to get wistful when I see the marquee – fucking Tuesdays With Morrie!!! Based on the book about an old teacher with…you guessed it…ALS. That’s some funny shit. My mother suggested she take my picture underneath the poster, which is of course the only thing to be done on such an occasion. If I can figure out how to add the pic, it’ll follow this paragraph even though I don’t look like a “hot redhead in a wheelchair.”



Reunion. In my late teens I loved my best friend so much and she me, that we bemoaned the fact that we were attracted to men. We were madly in love except for the sex part and would consistently close down a restaurant, a bar, you name it. We had a heart-wrenching falling out 14 or 15 years ago but this trip we picked up where we left off – closing a restaurant, spending the day and night walking, wheeling and talking about the real stuff, crying and loving each other. She helped me take my first wheelchair bus adventure and my first wheelchair cab ride. It’s a miracle. After well over a decade of not being friends, I sat across from her and observed how the love gushed out from me and thought “She must immediately meet the DMC girls.” She quizzed me on them – asking for a profile of each of them. She looks the same as she did in the 80s – a couple of crow’s feet that only deepen her great beauty. I am so very very grateful to have her back in my life.

Talking for an hour and a half with Mac on the phone about Robert Byrd, the large number of left-handed presidents and Ted Kennedy’s brain tumor. Missing him. Annabel told her parents at the airport “We’re back to our 4 family now.” I am anxious to return to my 2 family. We have a lot of catching up to do.

I read what I’ve already written and it really feels like unfiltered journal material rather than blog material, but here’s the thing – these snapshots are the important moments. When I have a bad physical day or trauma like the wheelchair launch, I feel very close to the notion of my own mortality and I love this world and its’ inhabitants with a teeth clenching zeal that I see in my niece. I want to hold tight, fiercely to all of it. To all of you. These are, to be sure, just moments that bring great meaning to me and those who were there, but you all have your own moments like that too. I hope you can love and honor them now, even the ones that hurt.

That’s the perk of this disease – I get to be preachy.

Partici-blog 3 - because your comments matter!

Here’s the latest idea for a partici-blog ( though not to late to write comments on the first two. Just hit comments at the bottom of this blog and write your list.

Things I never took for granted

1) the northern view of Vancouver on a sunny day – the way the sky and mountains were impossibly blue. For 45 years it’s taken my breath away.
2) Maclen Jacob Zilber – enough said
3) Singing – I loved it even when it was hard
4) The honor of performing in front of an audience
5) Dark chocolate
6) Candlelight – sitting alone or with someone listening to music or dancing
7) The beach on a warm night
8) Peets
9) Kindness of friends (whether I told them or not)
10) My Dad being there whenever I needed him, no questions asked
11) Aretha Franklin, Gladys Knight, James Taylor, Joni Mitchell
12) The BC Ferry – standing on the deck looking at the blanket of evergreens
13) Practical jokes
14) Ocean kayaking at Robert’s Creek
15) Breast feeding
16) Walking on the street in New York City

Things I did take for granted but wished I hadn’t

1) using my body – moving, walking, dancing, yoga
2) simple activities - turning keys, lighting matches, cooking food
3) red hair
4) alcohol
5) attracting the opposite sex
6) down time
7) having the time and funds to travel
8) writing, typing, communicating in any way
9) breathing
10) eating
11) walking dogs
12) dawn breaking

Okay, now you.

love- the renewable resource

Remember hot summer nights when your parents would let you sleep outside? Pitching a tent was cool but oh so much better with nothing between you and the canopy of stars
(that was before light pollution). Why do we stop doing that except on camping trips? As an adult, I remember one night on a Brooklyn rooftop but that’s it.

I slept on my deck during our last little hot spell. I looked out at the Berkeley Hills and without my contact lenses I could imagine the lights were stars. It was a challenge to be sure to get up and down from the ground to go the bathroom but oh, so worth it. If I had had more than one loaner fan I probably wouldn’t have done it and I would have missed out.

It reminded me of a scene from my friend Kim’s play – I think it was Tattle Tale. All the other girls at the slumber party are running around in their pjs on the street but Kim doesn’t want to get in trouble so she sits in the tent listening to the sounds of the others’ joyful laughter. I’ve been inside that tent too much in my life. Now I want to run wild on the street and damn the consequences. I’m not saying sleeping on the deck is running wild but it’s a start.

We had our annual Drama Banquet on Friday night. My last. The kids tied pieces of muslin around my waist fanning out like the points on a clock. They held me up so I could dance and when I would almost fall they’d pull the muslin the other direction. Mac picked my all time favorite dancing tune and I danced. Magic! You have no idea what a joy it is to dance with abandon when you thought you’d already said goodbye to that part of your life. Later, I got to slow dance with not one cute guy ( a la my bucket list) but a line up of cute guys and one hot blond girl. Each dance had it’s own particular flavor of love and I basked in it all. I don’t even know if they knew they were making my dreams come true. Mac and I stayed up that night to the wee hours talking – tough topics but necessary and rich.

I would rather lose sleep in a painful conversation with him than have 8 uninterrupted hours when he’s out of the house.

Later Mac was too sick to go to his Model UN Conference so my friends rallied to take care of him so I wouldn’t miss my plane to Canada. They also went looking at apartments for me in case my other housing options fall through, emailing me a slide show of the apt and the surrounding coffee shops, raw juice bars, etc. Many of the pics include Edith or Kris waving into Wendy’s camera, looking enthused. Wow. If you read this blog regularly, I needn’t tell you that my friends are an elite squad of super heroes that make the Justice League look like pussies.

I’m both prodded into adventures and covered in a blanket of protection – all on account of love. I feel useful when I can give love and gratefully vulnerable when love is offered to me

Love shape shifts. It blindsides. It comes at you from different angles. You think it’s one thing, then it turns up as something else. It’s tenacious. It’s unpredictable and there appears to be an endless source of it.

Love is bamboo.

captain oh my captain

“Don’t it always seem to go, that you don’t know what you’ve got til it’s gone?”
Joni Mitchell

How many times did I think “if only I didn’t have this job, I would have more time for my work?” or “this job is going to kill me” or “it’s impossible to draw boundaries with this job”? I was right on all three counts probably. This semester I co-wrote a full-length musical, wrote several poems and songs, did several gigs ( okay some of them were benefits) and started a screenplay. Plus the blogs. I imagine that’s only going to get easier now that I’ve taught my final class.

I’ve taught my final class. Why can’t I type that without crying? Class ends at 6. Nobody left. “Go away now” I said. “I don’t want to cry.” “But we want to watch you ride off into the sunset on the wheelchair with your red hair flowing” said one of the girls – a poetic nymph who wrote to me that the galaxy had decided to throw a big party and make me the piñata. “I will cry when I pick up the loot” she continued, “ only because the stardust inside is so beautifully, blindingly, brilliant.”

All of their words and smiles are little treasures that expand like sea monkeys when my tears fall on them. Later that night I would come home to check my myspace and another student, a young man, had written a full-length poem which I will immediately put up on the wall with some of my favorites. The line he chose for the book the kids gave me was “loving you is simple, taking in your smile like a child gazing through the night at a mountain, never bothering to wonder what lies beyond.”

They humble me, surprise me, entertain me and occasionally shock me. I always used to accuse them of sucking all my chi but now I realize I was the vampire feasting on their youth and joy to stay eternally young.

We all sat there a little longer, casually chatting. Outside the sun was shining, dinner was waiting, some of them had an improv show to attend or to work on but we just sat. One burgeoning talent played with my hair as she did on the last night of the show. Several of them followed me out to the car and helped Lisa load up the wheelchair ( which fits in the back of a 2 door Honda Civic!!! ) It was unremarkable, quiet and sweet. No tears, just the sunshine and smiles and long luxurious hugs.

Then I drove away from 14 years of my life.

The Wendy Lady

It’s not the web savvy, the inventive updates on the DMC site ( linked here as Driving Miss Craisy) or the fact that she buys the voice recognition software and offers to install it plus more RAM on my computer. It’s not the delicious wheat-free, dairy-free baked goods that keep appearing – green, not green – all scrumptious. It’s not all the sewing – making clasps into magnets, rendering un-wearable clothes easy to navigate. It’s not the rides, so many rides, that often come with a snack or the fact that she’s accompanying me to Greece.

It’s the way she sings and dances her heart out to Earth, Wind and Fire, Ohio Players and Prince. It’s her inner “music yenta” that makes her call and insist I buy tickets to Stevie Wonder, Flight of the Conchords, Herbie Hancock, James Taylor. It’s the way she cried before I had a clue I was really sick and pleaded with me to go to the doctor. Then called again the next AM to nag. It’s how she looks like a hobbit bride when she stands at the front door at Mt. Herman and how she’s raised these two amazing girls I love. How her kindness and unforced generosity has leaked into them so that her daughter offers to move into her sister’s room so I can move in. How that daughter phones her mom who is tending to my broken heart and says “I’m making dinner – tell Carla there’s enough for her to join us.” She’s 13 by the way.

It’s how she holds my secrets, urges me on to write ( always has), comes up with solutions to problems I didn’t even know I had. It’s watching her run through a sprinkler in a polka dot bubble dress, offer to bake me special brownies, and it’s her urging me to be more cautious, use the wheelchair more. “I just want to wrap you in bubble wrap and protect you” she says, then after hanging up the phone realizing I’m too stubborn to pay her mind, it’s how her solution is to sew a bubble wrap dress with purple trim. It’s how I know she’s teary right now as she reads this.

But mostly I think, it’s her dancing.

mother's day

It’s Mother’s Day, 6:27 pm. I have just gone back and forth – do I blog or watch a stupid movie? I blog. The week has been overwhelming – it occurs to me it has been like a play that only I would write: big fun, belly laughs, boundary crossing, deep unbearable sadness and music – all of it coming at too quick of intervals to process it properly.

Last night Mac told me there would be no Mother’s Day this year. He can’t handle my reaction and keep it together to do what he needs to do. I am so proud to have raised a son that can tell me that. We stayed up until 1am talking about all the things that hurt and haunt him. Oddly enough, that was present enough for me. He is the most beautiful tender soul. When I listened to one of the songs I wrote for him today I had to leave the theater so as not to distract the cast with my crying. I love him so much it hurts.

I watched our show one last time and they knocked it out of the park. I was proud of all of us and more than a little sad that I won’t be doing this anymore. I’m really good at it. At the end of the show the kids brought me up for thanks and gave me gifts – not unusual for a play but under the circumstances very huge for me. Lots of tears – mine and my students – some of us sobbing in each others’ arms. I was moved beyond words. They gave me a spa gift certificate ( yay!!) a framed, signed poster of the show and a little book of inscriptions. The inscriptions were beautiful, heartfelt and profound and the comments on the frame were vile and unrepeatable. That is why I adore them. They are an alarming mishmash of angel and devil, irreverent, sacrilegious and holy.

Well, I’ve run out of things to say – probably stupid movie was a better plan.

So this week – final improv class, lithium baseline appointment and the year end Drama Banquet. Then it’s on to Vancouver and my inevitable collapse once I get to my Dad’s place.

What a lovely ride.

yoshi's

At the Yoshi’s benefit, I was approached by J., a beautiful young woman who had studied with me last year. At that time she was undergoing radiation treatment for cancer. So anyway, on Tuesday, she brought me a journal, which she had inscribed along with a heartfelt poem she had written. I was preparing to go up on stage in 10 minutes when she hit me with the news: the cancer has spread all over her body. I looked at this gorgeous black-eyed beauty, so quietly determined, hardworking and subtly funny and the waterworks started. When I watched the movie Young at Heart I was struck by how sad I felt when one of the octogenarians would die . Natural order of things my ass. The loss of a bright soul is hard no matter the age. Then this. It DOES smart worse when it’s someone so young and full of promise and possibility. I don’t know how I got on stage at all. All I could do was cry and stroke her hair.

I had a thought in the middle of the night, which was “I’m going to phone J. and see if we can’t think of a bucket list adventure we have in common and go do it pronto.” I think I’ll do that and report back here.

So the night at Yoshi’s was a complicated mix. On stage I had a ball. If I could live on stage I think I’d be happy almost all of the time. I have the most awesome band and my dear friend Andy did a couple of duets with me that rocked. Mac as usual brought the house down with his singular wit and rapping. It was his birthday, which had to suck for him. All the attention on me once again.

Off stage in the audience it was a delight – watching the embarrassing wealth of talent up on stage, laughing, grooving, drinking it all in. Talking to some of the musicians, especially the guys in my band was awesome and my amazing friend Kaila was a radiant light on stage and the rock of Gibralter off stage. I don’t know how she makes that transition so seamlessly.

The day before had been rough – 4 hours at the ALS clinic dealing with heavy stuff, worrying about where the hell I’m going to live which has become a more urgent concern with the recent health developments and just dealing with the general fatigue and challenges of this disease. I thought at about 6pm that I’d have to not go on but somehow it happened and I pulled it off. Talking with Stephanie (treasured friend and wife of the aforementioned Andy) I came to the conclusion I pulled it off because I was bathed in the beams of love light from the audience which included the Driving Miss Craisy crew, College of Marin and Los Medanos College students and faculty, Albany school people, yoga people, theater friends, musician friends and even a large contingent of the folks from the Forbes Norris ALS clinic!!

My ex organized all the musicians and ran the event and Christina, Edith and Kaila among others did an amazing publicity effort. Thanks to all of them and the participating musicians we netted almost 6000 bucks not to mention cd sales for another 500 bucks! Stephanie and Andy are going to help me get the cd on Itunes and it will be available on the website in a week or so by the way.

SO the performers: David Allen Moss, actor, friend and funny man presided over the event and Mike Zilber ( my ex) pulled together a first class big band for me to sing with. There are too many of them to mention in this blog but they were something else. My dear band from the new cd and the upcoming cd were there being their brilliant supportive selves ( Jon evans, John R. Burr and David Rokeach) Roy Zimmerman – greatest living folk political satirist was there bringing down the house (check him out on youtube and at royzimmerman.com), Kaila Flexer and Gari Hegedus, aka Teslim played a couple of magical and haunting numbers from their brand new remarkable cd, (kailaflexer.com) Mike (michaelzilber.com) brought two bands to the stage – his tribute to wayne shorter band and his Billy Collins Project which has mighty writing in it plus the vocal gifts of Andy Kirshner (andykirshner.com). One of the songs made me ball my eyes out during sound check and made Andy cry on stage during the show was a musical rendition of On Turning Ten by Billy Collins. The musical accompaniment for the song is perfect and Andy interprets it beautifully. It’s a poem which made Mac cry when I first read it to him when he was ten and he said “that’s how I feel sometimes.” It goes like this:

The whole idea of it makes me feel
like I'm coming down with something,
something worse than any stomach ache
or the headaches I get from reading in bad light--
a kind of measles of the spirit,
a mumps of the psyche,
a disfiguring chicken pox of the soul.

You tell me it is too early to be looking back,
but that is because you have forgotten
the perfect simplicity of being one
and the beautiful complexity introduced by two.
But I can lie on my bed and remember every digit.
At four I was an Arabian wizard.
I could make myself invisible
by drinking a glass of milk a certain way.
At seven I was a soldier, at nine a prince.

But now I am mostly at the window
watching the late afternoon light.
Back then it never fell so solemnly
against the side of my tree house,
and my bicycle never leaned against the garage
as it does today,
all the dark blue speed drained out of it.

This is the beginning of sadness, I say to myself,
as I walk through the universe in my sneakers.
It is time to say good-bye to my imaginary friends,
time to turn the first big number.

It seems only yesterday I used to believe
there was nothing under my skin but light.
If you cut me I could shine.
But now when I fall upon the sidewalks of life,
I skin my knees. I bleed.

I love a funny poem with a lethal sucker punch.

Our life is so fragile and so brief and we really are only sustained, held up, buoyed, etc by one another. I have felt that so acutely lately. Yesterday Wendy presented me with a dress she’d made for me out of bubble wrap – a gesture to indicate her desire to protect me from all of the falling down. It’s a divine dress (which makes me feel like a POP star!) but in reality, it is all of you – from the nurse I’ve never met who commented on the blog, to my parent’s high school friends, to former colleagues writing in, to my intimate circle, to my family and all of the aforementioned groups who supported me at Yoshi’s – all of you are bubble wrap for me and for each other.

Here’s how it works: I can’t possibly thank you all in a way that does justice to your efforts – I already hear the Academy Awards band playing me off the stage now. Just know how much I love and appreciate all of you – including those I have yet to meet.

zzzzzz

I'm way too wiped to write both a Yoshi's blog and a limo night blog. My right hand fatigues easily and from what I understand it's best not to push it. I have been one-hand typing 50% of the time but now I'm doing 2 fingers on each hand until I train my voice-activated software. In other bullshit, my falling risk has increased because of the weakness in both my hip flexors and ankles and my OT wants me out of my apt and into a more suitable housing situation asap. This is easier said than done.

On the brighter side, lithium trial screening is this friday and the limo night and Yoshi's were amazing. To learn more about limo night go to:
http://seehowwealmostfly.blogspot.com/2008/05/ten-women-of-certain-age-lets-say-long.html
and read alison's account of the evening. She does it much more justice that I ever could....But play some Bachman Turner Overdrive in the background as you read it.

Balloon Liberation

My Mom sent me a bouquet of balloons in between opening weekend of War and PeaceMeal – The Musical and the Yoshi’s benefit on May 6. Now nothing makes me sadder than watching a bunch of helium balloons slowly die, the air sucked out of them until they sag. They are never as beautiful as they are the day of their inflation. They should always either be inhaled or liberated shortly after that. Mac and I did the latter though I wish we’d saved one for inhaling so we could sing a falsetto goodbye to them as they began their ascent. They were remarkably beautiful flying up into infinity….or the Berkeley campus…. becoming brilliant colorful dots against the blue backdrop of the sky. We attached a note to the last one in case it landed somewhere. A mystery for someone to discover. I would love to find a note like that. How much more beautiful things are when we let them go instead of clutching on to something that used to be.

It made me think again about what a mismatch this disease is for me. Not for me the slow, defeated deflation. I want to be popped so I whir in a wild zigzag jig through the sky like a Looney Tunes character, leaving only freckled skin and red hair in a perfect sheath once all the air as been let out of me, I want to have my strings cut like the happy face mylar balloon we watched cheerfully bounce it’s way into oblivion it’s grin intact. I want to be inhaled, absorbed, devoured, to spontaneously combust, to go super nova. Anything but this slow goodbye to my old life.

My right hand is starting to weaken now. I had two dramatic falls – one a full-on face plant. I’m not ready to give up yet but I can see how it’s going to get harder and harder to have fun. If it gets too sad down the road, I hope people will understand if I prefer to cut the strings and fly.

Tonight a few stalwart supporters and I are dressing in 1970s prom dresses, blaring Foreigner and Bachman Turner Overdrive and driving around in a stretch limo. I will report on the results and I will dance even if I take a tooth out falling down.