Frog Princess

“You’re a frog in slowly heating water”my son told me the other day. It’s an apt analogy. I find myself impressed when Kris can pull a pillowcase off a pillow in a matter of seconds or when Mac easily removes a plastic wrapper in one deft movement. It’s like I can’t remember that I could do these things and more just less than a year ago. These are now challenging tasks for me but I never seem to get angry. Well, there was that one time when I really wanted some wine and I had a wee melt down when I couldn’t open the screw cap, but that was made all better when I discovered tiny juice box-sized wine at Lucky’s. Even at Lucky’s it’s weird when the chick in the wheelchair jubilantly shouts “Yay! Wine-in-a-BOX!” Yes, I'm a frog. Guess that explains my eagerness to get kissed. I am waiting for that one kiss that will transform me from frog back to the woman who did headstands.

A brief digression: I’m on my deck and two young men are having a heated altercation on the street. One of them just said “ Ah’m gonna SHIT on your balls, dude!” To which the other guy replied “Hey woah….woah!”

Call me old fashioned but I think it’s far more efficient to kick the crap out of someone or punch them into a new time zone or call them an arugula-eating elitist since none of these involve dropping your pants or relying on impeccably timed bodily functions. I am sorely tempted to point this out to them. I love living on a relatively hopping street. It ain’t New York, but there is action.

I had a day out on Thursday. Took the bus to Berkeley where I met my friend Gerry for a movie. I like getting out on the bus and I like all the fascinating people I meet. Got into a detailed conversation with a guy from India, implausibly named Jim, a crazy woman in a wheelchair (no, I wasn’t talking to myself) and finally the bus driver on the way home. She was admiring my butterfly tattoo and told me she wanted to get one herself with her son’s name inside the butterfly. He had died 4 years ago. I don’t know what possessed me to do this but I just knew it was what she wanted to hear so I told her I had a fatal illness and that I didn’t know if I believed in an afterlife, but if there was one, I would look her son up. She started to cry and clutch her heart and said “thank you” and “god bless you” over and over. “His name is Damion,” she told me. “Look at me, I can’t stop crying – we was meant to meet.” We both put our hands over our hearts and I got teary while she full on cried. I don’t know why I told her about my illness and why I suggested something I don’t think is possible. I just knew it was the right thing to do as weird as it sounds.

Two days in a row I’ve fallen backwards. This is worse than falling forwards because of the lack of control coupled with no visual warning about what you’ll hit. I hit soft carpet and found myself chuckling at the falls because although it scares me a bit, the comic element of the backwards fall cannot be ignored. I have got to keep finding the funny in all of this.

Speaking of funny, the ass-picture auction has ended. We made some good money for a small amount of effort ( and sadly, a small ass). Thanks to Wendy and Edith for making it happen!

Variations on a Theme: The Sufis and a bit of Ovid thrown in for good measure

I

I wonder if Hafiz had regrets.
Or did he live like his poems until the very end?
Did he open his arms to the Dear One and passionately embrace his passing?
Or did his lips stiffen and pucker and his eyes fill while he tried to hold back a sob
Bargaining with the Beloved for

Just

One

More

Day.


II


“Death’s not so bad”, Rumi told me
Though not exactly in those words
“And this world? Hell, after the first couple of centuries you hardly miss it.”
Easy enough for him –dead now for 735 years
Doesn’t the Beloved get boring after all that time?
I love the Dear One too
But I also want to see other people.


III

Rumi says “Die and be quiet
Quietness is the surest sign that you have died”
But there are symphonies inside me
Trombones and French horns
And electric guitars
And unruly, bellowing “I love yous” perch on my tongue waiting to fly
to someone whose heart is waiting


IV
Last night my son allowed me to rub his neck and shoulders
My nearly useless hands dug into the hardened places and tried to offer some release
It was a moment to savor
But instead
I longed to grab him up in my arms
I longed to whisk him back to a time when my hands and words and kisses
could heal all his wounds.
I longed to hold his hand and walk forward confidently with him into a bright future
“Didn’t I tell you?” Rumi asked me, shaking his head in mock reprisal
“Longing is the core of mystery. Longing itself brings the cure. The only rule is, Suffer the pain..
Geez, Rumi , I get it. I get it, okay?
Now you see this is why I prefer hanging out with Hafiz.


V
“The path will follow you if you are true”
Pretty words, Hafiz, but I’m tired of blazing this trail
There are roots and branches and fallen trees in my way
And a temptation to turn around like Orpheus in reverse
When Orpheus returned, broken hearted from his journey to the underworld
I’ll bet the beauty of his music
Was almost too much to bear.
But I travel a different path
And though I sing as I walk along
My voice shakes

President Obama

A black family stood in front of 84,000 people in a stadium last night as the likely next first family. While he understood the historic nature of the event intellectually, my 16 year old, raised in the progressive Bay area and born shortly before Clinton was elected (first black president my ass) doesn’t necessarily understand why I was fighting back the tears for the 40 minutes this amazing man spoke.

He balanced it all – a bit of brilliant number-crunching policy wonk, a bit of stirring orator, a bit of gentlemanly consensus builder and a new trick –fire-breathing populist. He reminded me of the gentle dad who finally blows his lid and everyone stops what they’re doing when he hollered “Enough!” And of course he brought it home in the end with a little MLK action – the elongated vowels, the sing song pitch of the voice the forward propulsion of the speech – an almost necessary homage given it was the anniversary of that famous speech

Obama never acknowledged outright that he was black. I think it was a good move. It’s clear to look at him he’s black but more than that, more than most of us (especially me) he’s American. He’s black and white, a Christian who went briefly to a Muslim school (by the way, Microsoft Word automatically capitalizes Christian but not Muslim) he’s lived in Kansas, Hawaii, Chicago and abroad …this is a nation of people with vastly different experiences from vastly different cultures and who better to represent us than a man who as Whitman would say “contains multitudes.” I listened to him, hoped no crazy man would take a shot at him and felt a little hope start to chip away at my political cynicism.

Back in January my dear friend Lisa and I drove along 80 towards the Bay Bridge and she told me that in one of her bargaining moods she put it out to the universe as a trade: 4 more years of Republicans in exchange for me not having ALS. I know now more than ever I wouldn’t take that trade if it were offered.

It was a damn fine speech.

Jimmy "JJ" Walker Danced With Me

One of my bright stars from my teaching days has gone back to school on the East Coast. Another has headed off to rainy Seattle. Another is here on break briefly before returning to study acting at the school she calls “Harvard University in Cambridge, Mass” In case we hadn’t heard of it, I guess.

A pang of envy leavened with maternal pride. Oh to be someplace that has a real fall! To watch the leaves turn and to smell new beginnings in the air. Do you notice how different the air smells at different points of the day? During different seasons? Oh to be signing up for classes, seeing friends you haven’t seen all summer or meeting new ones, moving into new digs ( what an old fogey word!) to be moving into a new crib ( nope, trying too hard) to be squeezing your ratty futon frame through the door of the new apartment (wait – I STILL have a ratty futon frame. I’m so immature.) Oh to see the future as a piece of fruit – ripe with possibility – that you deftly pluck off a low hanging branch.

I love the Bay area but damn I miss fall. All the years of teaching make me think of it as the real new year, the real time for resolutions, recharging and rugelah. I am doing some “resolutin’ “ of my own – adding water walking to my routine (in, not on), trying to finish numerous dangling projects and enjoying time with friends and family. In the meantime I’ll somehow endure 2 more months of glorious hot sun giving way to more slightly cooler glorious sun.

Spoke with the social security office yesterday. Hilarious. Here’s some sample questions , more or less IN ORDER:

Do you own stocks, bonds, other investments?
Do you have a retirement fund?
Do you have a working stove and refrigerator?
Do you have any cash under your mattress?
Do you own a funeral plot or urn? (Carla: not yet)
How many hours a day did you walk, stand, kneel, crawl, stoop?
Did you have anyone working under you (Insert predictable Carla dirty joke here more for Kris’ benefit for having to sit through this than for the intake guy. My answer is immediately followed by:
Do you have mental problems? (Me: Is that a follow up or is that really the order of the questions? Him: that’s just the order. Me: No mental problems.)
Do you take any medications? (Me: lithium. So much for no mental problems sounding credible!)

Yesterday my shuffle was on and up came “Let’s Get it On” by Mr. Marvin Gaye. Now I guess I’ll find out eventually but as it stands now, I don’t know how anyone listens to that song and doesn’t dance. I looked over at my dreaded walker and discovered that I could boogie to the best of my ability within its’ bars. I thought of the elderly neighbor my dad spoke so admiringly of who would pull weeds from her walker and I thought “if Lisa paints this thing leopard print, I could stand and boogie for a song or two.” Then of course I over did it – but at least I know I’ve got one dance in me and I will bust a move as long as my walker ( newly named Jimmy “JJ” Walker) or someone else can hold me up.

Camp Idol

If you can, please tell me your name when you comment and a little bit about yourself because I love what you have to say and want to know you better or maybe I just don’t know that I already know you. I do love all of you though and believe me, pre-ALS Carla would have thrown up into her mouth a little bit to hear ALS Carla say that. People change. Thank goodness.

Meanwhile back in ALS land I had a good clinic appt. Besides the Maximum Inspiratory Pressure or MIP score, which dropped from 52-35 and the tongue problems which Dr. K could clearly see but not hear (big ups to voice training!) I’m holding my own and have a lot of strength in my arms (not hands) and legs. My lithium dose has been reduced and I’m back to an every 3 months visit instead of every 2 months. Jodi, the mama-bear clinic manager and OT lent me a documentary about a comic writer in LA named Scott Lew. Funny cat. I saw a lot of my decline – the way he made use of his hand, the way he walked using his Dad’s shoulder, napping with the annoying bipap machine etc and I also saw myself in the way he laughed through it all until the tears would ambush him. I could really relate to him though I am not looking forward to what clearly lies ahead. If you want to be inspired, I’d check out the DVD which is called “LIVING WITH LEW.”
( http://www.livingwithlew.com/news.htm) I’m not up for watching that kind of documentary in general but in this case I’m glad I did.

I spent the last two days at the Muscular Dystrophy Camp learning from 52 gurus – kids from 6- teens with muscular dystrophy. Some of them had symptoms so mild you would never know they had a disease and one girl had a 24 hour nurse, a tracheotomy and oxygen machine and almost no movement at all. I fell in love with several of them including Angelina – a pretty dark haired girl with streaks of green and yellow in her hair who sized me up with a somewhat inscrutable look then asked “Are you riding that wheelchair for fun or is something wrong with you?” “ I have ALS” I said. “ I can walk but I fall down and get tired.” “Me too” she replied. Once I passed her sniff test, she and her buddies – a couple of live wires themselves – coached me on how to be Paula Abdul for “Camp Idol” where I was to be a celebrity judge. “If you don’t like someone’s singing, just compliment their shoes” she told me.

I also loved Adrian and Callum – both 7 year old rappers. Adrian rocked the mic so hard from his wheelchair I threw my scarf on stage ( it takes wayyyyy to long to get my underwear off nowadays and it might scar him for life anyway). Callum – a round, pugnacious little fellow straight out of Little Rascals did a hilarious wriggle that was meant to be a “hyphy” dance and said things like “All the babes say YA.” My eyes filled with tears of fury when I was told that this little kid asked his doc for a power wheelchair because he wasn’t fast enough to escape his tormentors at school on his wobbly feet. I wanted to go to that school and scare the shit out of each and every one of those little bastards. The angel doctor is getting him the power chair.

I sang at the camp at the request of the director the perhaps ill-advised choice of Kiss by Prince. I’ve now been hooted at and catcalled by kids in wheelchairs with fatal diseases. I can die content. I would sing “I just want your extra time and your…” and they would holler “KISS!” Heaven. I was aware of how much my voice has deteriorated even since the last time I sang it and just when I felt the dark clouds descend, I looked at Hannah who can’t breathe on her own and V who may not make it long enough to be back at camp next year and Daniel who fell down while singing and just laughed and kept going and I got over myself real quick.

If I’m physically able to, I’ll be back to camp next year because I was genuinely sorry to only have 2 days with these awesome kids.

Another Retort

"Your task is not to seek for love, but merely to seek and find all the barriers within yourself that you have built against it. " Rumi

So someone wrote me recently to take me to task about a few things. One concern she had was my use of the word “dying” instead of “living with”. Fair enough. We heard that a lot in the 80s with AIDS. Just one problem. We are all dying. Life is a terminal condition and being in touch with that inevitability has its upside. Just ask Buddhists who meditate on their own deaths. Now I haven’t wasted time on TV since 97, but there were lots of other time sucks in my life. Knowing I have a fatal illness makes me think hard about what I want to do. I think that’s a good thing. Think about it: if you knew your time on this planet was limited would you sit at home watching TV or get the hell out there and live some life? I respect people that don’t want to believe they will die, that don’t want to contemplate any other realm than this one and I get it, believe me I do. I love life. But I also love the truth.

The other thing this person was upset about was the auction of the picture of my ass. Now I bet a lot of readers don’t think that’s the greatest idea either but they realize that we all have our way of traveling through this world and if no one is hurt, why expect people to live just like you do? It would be boring if we all auctioned our ass and I wouldn’t dream of imposing it on other ALS patients. Likewise, I wouldn’t take someone to task if they did a BINGO fundraiser and accuse them of making ALS patients look as dull as dirt. That perspective is mine alone. Likewise, BINGO-oriented people should let me do my thing.

Finally, this well-intentioned lady read the blog and thought I was presenting myself as a “victim.” Say what? I am alive, living fiercely, loving intensely, laughing loud and drinking it all in. I am making music, making whoopee, making blogs and making plans. I am drunk with love for this beautiful, flawed, silly, tragic, hilarious world and I’m damned proud of how I’m coping. I love so many people -even this woman who may be judgmental and a bit of a buzz kill but she has also lived with ALS for a long time and that makes her very courageous and worthy of my love in my book (though I don’t want to meet her as she suggests.)

I’m not here to be the spokesmodel for ALS. I don’t write this blog to inspire the ALS community or anyone for that matter. I write it because I’m an artist and we take the events of our lives and try to make sense of them by turning them into something. I write it because I had some bad luck and I’m struggling to understand it while accepting that I can’t. I write it because I think people need to read about flawed and funny people. Yes, it’s got a lot to do with ALS – it’s only been 9 months – give me time – but more than that, I want to write about, celebrate, sing about, BE IN life. I am Carla - I am NOT ALS.

This lady also asked me to think about my son. I do. Every damned day. And I am setting the best example for him I know how. I am showing him that people can mess up and be loved, can endure hardship and laugh themselves stupid, can lose it all and gain more.

So to those of you who write your encouraging and loving comments – whether you are a friend or a stranger, I love you and please don't write angry blog comments to this lady - she thinks she's doing the right thing. For those of you who don’t like what I have to say or how I’m living up in this bitch, I might still love you but implore you: don’t read the blog then you’ll be happy and I’ll be happy.

As for me, I am going to keep snogging and mooning and telling evil jokes and loving and laughing and one day I’ll get cremated in a tight red dress, pushup bra and fuckme pumps and a mischievous grin on my face.

Advice to My Son

When I look back on my life, it’s clear to me that the single most successful relationship I ever had was with you. With you I was able to give without expectation of getting something back. I was able to give you room to be yourself and to love whoever showed up. I never needed you to show your love in a specific way for me to be sure it existed. I was never afraid of your anger, your grief, you annoyance. Maybe it would have been tougher with a girl but from day one I saw you as an individual and never needed you to think and feel the way I did.

You taught me how to be better in relationships and I use those skills now in my friendships with others.

You never ever called me “mommy”, always “Carla,” no matter how anyone tried to persuade you. After a time, I came to hear “Carla” from you as “mommy” and my heart swelled in the middle of the night when you would scream “Carla!” after a nightmare.

From this I learned – let people be in relationship with you and express their feelings for you the way they are able to. Don’t make assumptions based on how you would do things.

Every time you get angry with me ( which is not often) there is a part of me that is so relieved that you trust me enough to express the scary feelings. I try to see beneath what you’re saying to hear what you’re feeling. I rarely feel defensive and I try ( not always successfully) to never answer you with “Yeah, but you….”

I don’t have such luck in other relationships but I’m working on it. People need room to have their feelings and it’s so hard to give them that room.

Since you were the kid and I was the grownup, I had to learn to be clear with you if something didn’t work for me. Banging pots and pans around in a sullen way hoping you would read my mind was not going to work. Yelling would be abusive. I had to say “When you do _____ it makes me feel______. I would like you to ______.” It always worked – not because I was a childrearing expert (“Do you hear that Ben, he wants to rear your child” – Knocked Up) but because you were and are so utterly reasonable.

I have not been so clear in relationships. I thought that passive aggressive jabs would adequately convey my displeasure and failing that the silent treatment. I could go months not talking to someone and they didn’t even know they were being “punished.” You taught me to tell people what did and didn’t work for me.

You taught me how to just enjoy the present moment with the person I’m with instead of letting future plans or past issues mar our time. I remember watching a ladybug make it’s way down the sidewalk with you once. We watched that bug for a half an hour and it never flew away. You were so fully present with that damned ladybug I finally succumbed and enjoyed the experience. It was delicious. When I can summon that kind of presence with my friends my time with them is so much richer.

Finally, I never ever thought “what can this kid do for me?” It just doesn’t factor in. As a parent all you think about is how you can help your kid move along the path of life – sometimes by helping and sometimes by getting the hell out of the way and sometimes by painfully standing by as they make mistakes, experience hardships and endure injustice and learn for themselves.

I am no longer in a position where I can be of much help to my friends but in those rare times when I can do something for one of them I experience a deep deep joy. It’s actually true that it’s better to give than receive.

You are already such a remarkable person, but I still want to offer this unsolicited advice to you – especially if it helps you avoid some of the rough times I’ve encountered:

1) Let people show up for you the way they can. Don’t set up a friendship litmus test – everyone will fail.
2) Don’t be afraid to let people share their negative feelings – just don’t take them on yourself and don’t let someone emotionally abuse you. But if someone says “it bugs me when you’re late” let them share that.
3) Express your needs, boundaries, and expectations clearly. Don’t expect people to read your mind.
4) Be in the moment. If you’re hanging out with someone, really hang out with that person.
5) Be generous of spirit. Don’t judge all your friendships based on what you want.


There are so many other things I’ve missed but maybe people will blog comment their friendship advice.

You’ve only been gone a day and I miss your jokes, your political updates and just you.

Poets say it better than I can

Migration

by Tony Hoagland

This year Marie drives back and forth
from the hospital room of her dying friend
to the office of the adoption agency.

I bet sometimes she doesn't know
What threshold she is waiting at—

the hand of her sick friend, hot with fever;
the theoretical baby just a lot of paperwork so far.

But next year she might be standing by a grave,
wearing black with a splash of
banana vomit on it,

the little girl just starting to say Sesame Street
and Cappuccino latte grand Mommy.
The future ours for a while to hold, with its heaviness—

and hope moving from one location to another
like the holy ghost that it is.

"Migration" by Tony Hoagland from What Narcissism Means To Me © Graywolf Press, 2003.

The Worst Days

The worst days are the days when it hits you in the face that you don’t want this. When a series of events just sucker punches you into the realization that this is really happening. When you say out loud to someone ( and surprise yourself that it just occurred to you now) “I don’t want to die.”

The worst days are when you’re mad at your son for getting upset about stupid little things when you are dealing with something so huge, then you realize that he’s getting upset about stupid little things BECAUSE what you’re dealing with is so huge and it is tearing him apart. You are still mad but all you can do is listen and try to understand. He doesn’t miss anything and that’s a blessing and a curse. You are an expert at stuffing anger and finally you can put that skill to good use.

The worst days are the days that you know are going to come closer and closer together. The worst days are the days that you will fondly reminisce about because even though it was hard and you locked yourself in, you were able to get to the bathroom on your own. The worst days have rays of sunshine – your extremely mature brother sending you a filthy song over the internet, your dad writing a deeply moving blog comment, your former students coming over and laughing a lot, a kiss from a very handsome man and of course homemade guacamole.

The worst days come after the best days and if you squint your eyes tight enough, off in the distance you can see another best day in the distance, gradually looming larger and larger.

Give me excess of it

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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 www.quiltmamas.com/dmc/ways_to_help.html for further details and info.

Weddings

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.

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.