Wednesday, July 30, 2008

Fundraising my ass

So if you read this blog regularly you know that I recently arranged to have several handsome men drop their pants for my friend Lisa's Bachelorette party. They had MAZEL TOV spelled on their cheeks. They also grabbed me, pulled down my pants and wrote "I love you Lisa" on my rear end. Edith took a photo and jokingly commented on this blog that she would sell the pic for a donation to my medical fund and Wendy took the ball and ran with it. She has now started a silent auction to bid on a photo of my bare white ass. Proceeds will go to my medical fund, which will most likely be used to help pay for an in home aid when the time comes. Since I'm somewhat embarrassed, the bidding starts at $1000.

If a really white ass is the perfect complement to the other pictures on your mantlepiece or if you just want to help out, go to for further details and info.

Sunday, July 27, 2008


Always, always, always joy and grief collide. Saturday I received the nasty blog comment discussed in my last entry, officiated the wedding of one of the most important people in my life and discovered that Randy Pausch had died.

Randy Pausch for those of you who don’t know, was a professor at Carnegie Mellon University who became well-known thanks to Oprah (the closest thing to royalty we have in this country) who showed an annotated version of his last lecture. I watched it before I knew how sick I was but knew something was seriously wrong and I was so moved by his humor and his deep love for his family. Randy died of pancreatic cancer and is survived by a wife and three children. I recommend watching the whole lecture on youtube , which is much richer than the Oprah excerpts.

I think I owe Randy Pausch a debt of gratitude because he showed me a way to face certain death with humor, good nature and acceptance. He showed me that the work you do in the world is still important – maybe just as important or even more important than the private drama you face. Finally, he got me thinking immediately of the notion of a “safety net” for my son’s impending free fall. He expressed it all so eloquently and so humorously and he struck me as a prince among men – more proof that the universe is arbitrary. Einstein said god didn’t play dice with the universe but we can see by his hair and sartorial choices he didn’t know everything.

The anonymous person from the last blog has apologized for what he said and I am choosing to publish that comment as a gesture of good faith though I can’t for the life of me find the humor in his post and I am know to have an okay sense of humor. Still, everyone deserves the benefit of the doubt.

Now for the joy. My heart and eyes are full of Lisa today. Lisa looking breathtaking in her gold and plum sari standing next to Alan in his wine colored shirt and orchid lei. Both of them drunk with love. The food was delicious, the dancing exuberant, the music great and the company a delightful mélange of both their worlds. I loved looking out and seeing improv friends, writing friends, work friends , yoga friends, DMCers, and actors from the last show she and I did together all in one place. I loved that Alan had a catholic nun do the blessing of the Ketubah and thought it was adorable that she called it a “Tekubah.” I loved watching them dance, watching them be lifted onto chairs, watching Mac “Rick Roll” Evan by singing the Rick Astely song for him. I loved dancing with Dennis who held me up so securely so I could attempt to boogie a bit and I deeply appreciated Sofia letting me lean on her, buckling my sandals, putting on my necklaces then coming over to help me undress.

Finally, I loved being in the presence of two people who believe in ever lasting love. They gave a gift to all of us.

Saturday, July 26, 2008

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.

Wednesday, July 23, 2008

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.

Monday, July 21, 2008

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!

Friday, July 18, 2008

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.

Sunday, July 13, 2008

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.

Wednesday, July 09, 2008

Stay Cool

There is a piece about me in today’s SF Chronicle. To check it out, go to
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.

Friday, July 04, 2008

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 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.

Wednesday, July 02, 2008

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.