Monday, June 30, 2008

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.

Sunday, June 29, 2008

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 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.”

Friday, June 20, 2008

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 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.

Wednesday, June 18, 2008

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!

Tuesday, June 17, 2008

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.

Sunday, June 15, 2008

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.

Tuesday, June 10, 2008


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.

Saturday, June 07, 2008

"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?

Thursday, June 05, 2008

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.

Tuesday, June 03, 2008

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.

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.

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.

I miss you.

Monday, June 02, 2008

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 To buy tickets email the amazing Laura Derry at: 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:

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.