Plugging Along

I'll get around to writing a blog, hopefully before my gig on Friday, but until then, here's a plug for my weekend gigs. If you live in the Bay Area or LA, I hope you can make one.

They will all feature David Rokeach, John R. Burr and Jon Evans ( my boyz!) with guest appearances by Mac Zilber and Sarah Palin.

Also, I'm tickled by this review of my cd by Don Heckman of the LA Times. Check it out! http://irom.wordpress.com/


Friday September 26th 8pm
Anna’s Jazz Island
2120 Allston Way, Berkeley
510 841- jazz

Saturday September 27th, 1pm
Bay Area ALS Association Ride for Life
(for participants of ride only)
Veterans Home of California
180 California Drive
Yountville, CA 94599
For info on joining ride or donating to ALSA go to:
http://awebba.alsa.org/site/TR/Rides/BayAreaEvent2?fr_id=3600&pg=entry


Friday, October 3rd at 8pm
Steinway Hall @ Fields Pianos 12121 W. Pico Blvd, Los Angeles
Price: $25 suggested contribution
Reservations & Info: Jeannine@FrankEntertainment.com or (310) 471-3979

Depressing Blog

“I read your blog” people tell me. And I can see in their eyes that something in it has moved them. I see it in your blog comments. And I get scared that I can’t live up to this thing I’ve created. I’m scared that when the makeup and the clown nose come off, there is nothing there. Nothing to inspire, nothing to laugh at through the tears, nothing but the banal truth that it is getting harder and harder for me to just roll with the punches.

You see I am attached to the “me” that bravely faces this. I am attached to the wisdom I have gained from this experience and I am deeply threatened by the dark clouds that loom – clouds of fear, sadness, bitterness and frustration.

I want my body back. I want my voice to soar the way it used to. I don’t want to have to depend on people for everything. I worry that I will cease to be me – whoever that is.

I’m not writing this so you will all send me nice and loving comments. I’m writing partly to get through this feeling and partly to warn you that I’m not necessarily who I seem to be. My situation is remarkable, but I’m not.

The fierceness and consistency of the love I’ve experienced from friends and family has been humbling, life changing and overpowering. I feel like any self-pity I indulge in is like spitting in the face of this abundance, but those feeling blow over me like a tsunami and I can’t help but be so hurt and angry that I can’t open my change purse or that my son has to button my coat or that this is just the tip of the iceberg.

I want to go back in time and really experience things I didn’t know were a miracle – crazy dancing with my friend Daniel until I sweat buckets, running in a park with Mac and falling down together in the grass, taking a yoga class with a bunch of girlfriends, braiding my own hair, stage fighting, doing Wedding Singer Blues, boogie boarding and feeling the waves crash over me, opening my own jars and bottles and of course seeing an endless road of possibilities reveal itself to me.

I’ll be happy again, just not tonight.

Cuppla Things

1) I am not going to mention Sept. 11.
2) oops.
3) I'm starting a contest for a name to call you guys. You know, like Bill O'Reilly or Rush Limbaugh call their supporters. Not Truth Seekers or Ditto-Heads - something cool. Winner gets to write a blog on this site.
4) Please pass on the following gig information to your friends and family and if necessary, strong arm them into attending. Hope to see you all there.

I'll be back at Anna’s Jazz Island on Friday September 26th at 8pm with the superb musical stylings of John R. Burr, Jon Evans and David Rokeach. We'll be adding some new songs and some newer, dirtier jokes. Anna's is at 2120 Allston Way in Berkeley
and the info/reservations line is 510 841- jazz.

On the following Friday, October 3rd at 8pm I'll be at Steinway Hall in LA doing a concert produced by the amazing Jeannine Frank previously immortalized on the pages of this blog. Betsy Salkind will open for us (same great band) and her imitation of a squirrel is worth the price of admission. Steinway Hall is at Fields Pianos, 2121 W. Pico Blvd, Los Angeles. For reservations & info contact Jeannine@FrankEntertainment.com or call (310) 471-3979

The band and I will also be doing a fundraiser for the Bay Area ALS Association on Saturday September 27th at 1pm. This is part of the Ride for Life and is for participants of ride only. For info on joining the ride or donating to ALSA go to:
http://awebba.alsa.org/site/TR/Rides/BayAreaEvent2?fr_id=3600&pg=entry

Hope to see you Bay Area folks at Anna's and you LA folks at Steinway!

Sarah Pales-in Comparison (to a qualified candidate)

"I guess a small-town mayor is sort of like a community organizer — except that you have actual responsibilities,"

Sarah “Lady Pistol” Palin


I guess if you don’t know what the fucking Vice-President does then it’s not surprising that you might get a little confused about the duties of a community organizer.

I watched Palin’s speech on my computer (no TV since 97 – don’t miss it) and I have to say a chill ran through me. Remember how those two awesome ladies, Ann Richards and Molly Ivins, now both dead, warned us about underestimating George Bush and his political skill? I think the same can be said about this red-necked, gun-toting, over-zealous breeder. She has an appeal to the Fox News watching, huntin’, debt accruing, trans fat eating American crowd for sure. She made having a special-needs 4 month old an asset (“Those of you with special needs kids will now have an advocate in the White House.”) without mentioning any social programs to help special needs kids that haven’t already been decimated would be further eroded under McCain/Palin. She made her daughter’s impending shotgun marriage ( and Levi knows Mrs. Palin is a good shot and already owns the shotguns, so he had reason to be nervous!) seem like an occasion for joy. She was snarky in that way only cute women can get away with. If Hillary had said some of the stuff she said, she would be “bitter” or “bitchy.” But a cutie like Palin says it and she’s a sassy little rascal. I speak as a cute woman who gets away with a lot of bullshit. I know, believe me.

I hope we can keep focused on the real issues facing this country. I hope Barack will not be driven off message by the pitbull in lipstick. I hope Biden is courteous and subtly condescending in the debates.

In other news, I love watching the action and listening to conversations from of my deck. Why just the other night I watched Raymond Burr haul pieces of his wife out of his apartment in….wait, that was Jimmy Stewart in Rear Window, not me. I was just listening to a toddler on the street melt down to his mom. “Tell me the plan!” he bellowed, face swollen from crying. “TELL….ME…..THE…..PLAN!” I felt for the poor agenda driven waif. Remember when you were a kid and every minute of the day was NOT scheduled? I remember when a mom’s only job in the summertime was to serve you 3 meals and get you to bed on time. Your job was to keep the hell out of her way. Now I’m not suggesting the only alternatives are between
“The Lord of the Flies Parenting Handbook” and a campaign press junket, I’m just saying we’ve got kind of attached to sticking to “THE PLAN” and it’s infected the young-uns.

Meanwhile, two great parents and people I adore more than almost anyone are going through the health crisis of their lives and all I can think about is how much I love them and what I wouldn’t trade to have a week of being able-bodied so I could do their laundry, cook their dinner and distract their kids. Oh precious readers, whatever is plaguing you - how bad can it really be? If you and your family are healthy – go have a great weekend, have fun, eat an extra helping of dessert.

Rumi says: People want you to be happy, don’t keep serving them your pain.

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

This summary is not available. Please click here to view the post.

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.