Butterfly Moments

Whoever is running the universe acted like the perfect hosts and hostesses this weekend, conspiring with one another to show me the best time ever.
“Look, she’s not here for long,” I imagine the amorphous blob in charge saying. “Let’s pull out all the stops.”
The special effects blob perks up. “ I could do that cool shooting star thing if you want.”
“Good. Make it happen.”
And it did. As if the yellow moon hanging low over the water making a golden path between Pacific Grove and Monterey and the sea lions’ barks carrying across the bay and the memory of 15,000 butterflies weren’t enough, we saw a shooting star on the way home. Pure magic.

Not that there were no hitches in the plan. My friend Stephanie traveled all the way from Michigan to accompany me on this trip and the morning after she arrived she caught a cold. My friends mobilized (as you faithful Muselings know by now my friends do) and Stephanie bunked with Kathy. I missed having my time with her but I can’t take another cold. By Saturday morning things looked hopeful but not 100% safe so Kathy drove Stephanie and Edith drove me as we made our way to Pacific Grove to see the butterflies. The Czar of fun (Lisa) was in Half Moon Bay on one of her innumerable wacky adventures and she met up with us for part of the trip regaling us with amusing stories and poetic descriptions of what we were seeing and running reconnaissance missions to insure we were always heading into wheelchair friendly space. Our scout called us Kimosabe, Kimosabo, Kimosaba and Kimosabu. (Hey I looked up the spelling in Wikipedia – this is the best I can do).

So I’ve been looking forward to seeing the butterflies for some time. I have kind of a thing for them, so much so that Ali has threatened an intervention if I buy one more butterfly-related item of clothing or piece of jewelry etc. The love of butterflies is a stark contrast to my persona as foul-mouthed wisecracker but there you have it. Hello, my name is Carla and I have a butterfly fetish.

Hi Carla!

So sometimes, but not very often, everything goes more than right. The universe conspires to show you the time of your life. We stumble on the grove on the best butterfly weekend of the year. It’s unseasonably warm and the monarchs are flying all over. I slump down in my wheelchair and rest the back of my head on the chair so I can look straight up into the tall branches of the eucalyptus trees where the most action is taking place. The sun is bathing the trees in light and the scene looks too magical to actually exist – a cinematographer’s vision of what the world should look like. It also looks like a snapshot you might play in your head just as your dying. Something that encapsulates your sense of what life is in all it’s grace. I look up and I believe in god, but not how you think. I believe we created god so as not to go insane trying to understand that which is incomprehensible. I didn’t want to believe in god before because the one I had invented was merciless and unjust. Now I believe god is just a magic moment, a butterfly, a laugh hanging in the air, a question with no urgent need for an answer. This is a god I can deeply love.
So I look up at this holy scene and it’s too beautiful to take and I weep, leaving a few puzzled butterfly tourists to invent a story about the sad woman in the wheelchair. I bet they all guess right.

I wonder as I weep if Stephanie will feel okay about recording this moment. She is recording our trip and since it is an audio recording she keeps asking “How would you describe this in words?” Lisa describes the sound of butterfly wings as a silk slip rustling under a cotton skirt and Edith describes the moment when 100s of sleeping butterflies simultaneously take flight and scatter in an orange blur as a heart bursting open. (Kathy and I compare the sound to tiny helicopters so no gold star for poetry this time.)

Sometimes the universe drops something in your lap and winks. I meet 2 African Grey parrots named Paco and Chanel at Cannery Row – the ultimate tourist trap. Kathy arranges for their owner to let me hold them – or rather they perch on my arms, which rest on the arms of the wheelchair. Paco has a great personality and I salivate for a bird. More and more I relate to birds, both from a singing and a flying standpoint. I dream about flying like a bird sometimes and my legs just dangle in the air. They’re useless in my dreams but it doesn’t matter. I also think, as my voice slips away, about Maya Angelou’s poem Caged Bird in which she says “The caged bird sings with a fearful trill of things unknown but longed for still….”

I’m hoping I will get through Yoshi’s next week without any wheezing or spasms. That would be nice. I did pretty well over the weekend except when Edith was transferring me from chair to car by holding onto my ass and I started to pitch forward. She grabbed what she thought was my shoulder but was actually my boob. I’m trying not to fall as one of my dearest friends, sister of my heart gropes me in two spots at once and says “we need a guy for this job.” I crack up triggering laryngal spasms and every time I calm down enough to breathe, I crack up again and start wheezing. And repeat. I can’t tell you why it’s hilarious and not horrifying except to say there was one lone guy on the seawall where this occurs and he must have wondered about these women molesting a crippled woman then being very calm as she appeared to be having a scary asthma episode. He’ll be extra vigilant when looking for caregivers for his elderly mother – especially if she has a rack as nice as mine.

Sometimes the universe has a sense of humor.

We are getting out of the car to see harbor seals and sea lions when I drop a water bottle ,which a chubby boy about 9 years old picks up for me. He watches with ferocious intensity as Edith gets me out of the car and into the chair.
“What happened to you?” he asks.
“Oh, I’m sick so my legs and stuff don’t work so well,” I reply.
“Oh. Why are you putting on a seatbelt?”
“Well, this one time I hit a bump and I flew out of my chair. Kind of like if you go over your handlebars on your bike. Did you ever do that?”
“No. Yes.”
“ So I wear the seatbelt so that won’t happen. What’s your name?”
“Cesar.”
“Thanks for picking up my water bottle, Cesar. Are you here to see sea lions?’
“No. What did you hurt when you fell from your chair?”
“I skinned my knees.”
“Then what happened?”
“Well, I was by myself so I had to wait for someone to help me.”
“I would have helped you” he says with all sincerity.
“Thank you, Cesar.”

And with that little hypothetical gesture, Cesar has no idea of the gift he’s given me on this already amazing day. I would have helped you. One stranger reaching out to another for a suspended moment in time. It’s like being visited by an angel.

We go to the beach by the Lighthouse (yes, I know I’m going out of order, girls) and look out at the water. Stephanie a woman who exudes pure love from every pore is down by the water recording ambient sound.

“Do people tell you all the time that you’re adorable?” Edith asks her. Good question. Kathy is balancing precariously on the rocks to collect sea water in a bottle which she brings back along with a sea onion, seaweed and a little sand. She pours the sand and water on my foot. She has brought the beach to me.

It’s not every day that the sun shines down on you like a blessing and you move from marvel to marvel. It’s not every day that nothing goes wrong, the food all tastes good and the traffic is smooth. It’s not every day that something you wanted happens and it’s even better than you’d hoped. That’s why they call them special days.

I tell you what does happen for me every bloody day. Every day someone blesses me with their love and friendship whether that means a check in phone call in the middle of the day, or getting up to help me pee all night, or traveling to help me fulfill a dream or bringing me a beach. I dare you to find someone luckier than me.

Happily Assembling Disjointed Blog for your Pleasure

When the fall sun disappears, Albany quickly chills from a balmy 70 degree afternoon but my riding partner Bronwyn and I don’t notice. We are keeping one another warm as we wheel from Memorial Park back to my apartment. Bronwyn is a 2 and a half year old pistol of a girl who fearlessly headed right for the giant slide along with the big kids as soon as we arrived at the park. I’m visiting on this day with Bronwyn’s mom Lisa and Lisa’s sister Janice who are in from Vancouver for the long weekend. They lived with and took care of their mom who died of ALS many years ago now. Last year they did the ALS walk around Lake Merritt with their other sister Nancy.

Bronwyn’s warm little body is pressed against mine. It’s been so long since I held a kid because first I was afraid to drop them then I couldn’t do it at all. But B is on my lap in the wheelchair with a belt fastening us both safely in. When she starts to fall asleep, listing to the left, her dead weight is too much for my feeble arms so Lisa holds her right arm to pull her back to center. It’s quite comical. At one point I feel overcome and I ask Lisa “Do you ever look at her and wish your mom could have met her?” Lisa very politely does not point out what a “duh” question this is. I feel Bronwyn’s weight on my thigh and try hard to imagine she’s my granddaughter.

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Sunday I met one of our Muselings and her lovely partner. I liked them both instantly. ALS got introduced into their lives via a parent who I hope to one day meet. Either way it was a great experience to meet them. For me, Muselings are this blog’s richest gift.

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I’m going to be interviewed on KCSM Jazz 91 on Fri November 21st at 1:00. It’s my friend Edith’s birthday so all the schools, banks etc will be closed I would imagine, so you can all tune in.

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Mac tells me that Barack Obama’s first act in office will be to reverse several of Bush’s executive orders including the funding of stem cell research. I felt strongly about this before ALS (see Oct 2006 blog ) but now it’s personal. Yes, I know stem cell research has continued anyway and yes I know ALS stem cell research has made great strides but what might have happened with 7 extra years of federal funding? How many more deaths is GW responsible for? It took me 2 days to be able to talk about Barack’s impending reversal without breaking down.

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Allison painted a bench yesterday. My poor sister-in-law has been very nauseous from the chemo drugs and struggling with all the natural feelings that go along with a grave illness but yesterday she sounded alive and present and she painted a bench. Lisa (Bronwyn’s Mom) was telling me how much she liked Allison when she met her this summer, which says something good about them both since Lisa was engaged to my brother at one point.

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I’m drained lately. I’m tired most of the time and little things like getting locked out of my apartment can bring on tears. Today my amazing angels met for a marathon session with P ( from earlier blog On Orange Carpets and Little Deaths) to discuss Proper Care and Maintenance of Your Carla. Some of them couldn’t make it so I’ll write about them another time (this means you Laundry and Legal Department – I love you) I love these women so much I would play Bunko with them in Heaven ( I can make that promise cuz I’m sure there’s no Bunko in Heaven). I love these women so much I would turn Johnny Depp down if he invited me to come live with him in France (fuck their socialized medicine, I won’t leave my girls. ) I love these women so much I will keep writing about how Lisa drives all the way to my house so I can tell her I’m too tired to go the demonstration she was driving me to and doesn’t blink at the waste of time or how she wants to put an Ididerod-style platform on the back of my chair and yell “Mush” at me or how uber-competent rock Kaila shares poems and heartbreak and music and will suddenly explode into tears on my behalf or how Ali and I just stared at each other tonight, both in tears after she told me “You’ll never know how much WE love YOU so THERE!” or how Wendy calls “Hi Cutie-Pooty and arrives bearing multiple gifts and leaves taking things to retrofit with magnets so I don’t have to fumble with buttons. A blur of industry. A Tasmanian devil of love. I’ll keep writing about pretty Kathy with her sharp eye, positive outlook, brilliant mind and iron determination and Barbara who I have gotten to know in a deeper way this year and whose soulful, sound insights open up new vistas for me and of course Edith of a thousand and one tasks whose eyes flash mischievously when she tells how she’s going to make an instruction card for the ATM wheelchair “Japanese style.” This means if you plan to assemble or disassemble that chair, prepare to do it “happily.”

Black President - Check! Puppies - Check! Let's See, What's next? Oh yes, Gay marriage!

Barack Obama beat my friend Terre to the punch as you can see from this piece in the AP:
http://hosted.ap.org/dynamic/stories/M/MUTTS_LIKE_ME?SITE=TNJAC&SECTION=HOME&TEMPLATE=DEFAULT

The Obamas will have a shelter dog!

In the meanwhile I hope to be part of another movement on Tuesday to oust another administration whose impact though not far-reaching like that of the Bush Administration has been devastating to public education. My old college - The College of Marin currently has the most corrupt and incompetent administration and this coming Tuesday, at 5:30 PM, my beloved colleagues will hold a job action to protest the refusal of the Board of Trustees to negotiate their contract which they have been without for 17 months. If you are connected with the College, I urge you to join us outside the cafeteria entrance to the Student Activities building The Musician Action's Group will be performing and I have a renewed sense of optimism that change can come even to Marin where they appear to hate change so much they wouldn't even send me a custom written retirement letter. I got the same one al the 65 year olds got which went something like this:

Dear Carla,

Congratulations on your retirement! We at the College of Marin are so excited about what is in store for you.

Maybe it was custom written and they just hated me that much. They are excited about what's in store for me? Wow. The HR administrator - let's just call her Linda Beam ....because that's her name ....responded to my complaints by saying she was sorry I "took the letter the wrong way." You can't make this shit up. By the way there were only 5 other retirees so, you know, they weren't swamped.

It's a new day though and people are believing that they can be instruments of change.

Meanwhile, I am learning that change often comes whether we want it or not and I'm trying to ride bigger and bigger waves of change without wiping out on the rocks.

I used to be 5'8" with long legs. As a guy I adore said to me "you're long and tall and that's not all." Now I'm 4 foot something with fat wheels. I used to be a half decent cook, now people serve me food. I drop my fork at least once per meal and drink beer from a straw. My bedroom used to be this lush romantic space now it has a commode and a walker and a wheelchair parked by the bed which boasts a bed rail. I had an impeccable home, now chunks of plaster have been knocked out of the wall by a maverick wheelchair driver and the carpet is stained with the many drinks I've dropped. The orange carpet is long gone. SInging gets harder, getting in and out of cars, the shower, the commode all tougher and my energy is limited.

Change comes like it or not. The cure is more change. Every time I do something new I feel powerful to tackle this, be it go on an excursion, start shopping for a pet bird or striking up a conversation with someone new and learning something cool as a result. In those moments it's delicious to be alive.

On Gay Marriage and Puppies

People are hearing the call and rising to the occasion. Two straight couples I know (independent of one another) are investigating how to get very publicly divorced and becoming domestic partners. These are long established couples with kids but do not want to enjoy a privilege that their gay friends are so unjustly being denied. Charlize Theron had already said she wouldn't get married until gay people could. United we stand, divided we have 8 years like the last two bullshit terms.

Another friend is launching a campaign asking all of us to email Barack Obama and asking him to please adopt a puppy instead of buying one from a breeder. What a message that would send. All around me people are thinking about the causes that matter to them and putting their money where there mouths are.

Here's the Barack Obama website: http://www.change.gov/page/s/yourvision

In the meantime, I suggest we all work to ban Republican marriage and enjoy this song by my friend Roy: http://www.youtube.com/watch?v=bja2ttzGOFM

I wish he could retire this song.

Tears of Joy,Tears of Pain

There are now 17 women in the Senate.

Think about that.

We still don't know if we have our fillibuster proof majority but there is hope.

A black first family will live in the White House with their new puppy.

A man of integrity will lead the country.

ANd yet.

In California a basic human right was torn from us - and I mean all of us - because when one group is oppressed we are all diminished. Gay people no longer have the right to marry. Now I am not a fan of straight marriage myself. 50% of marriages end in divorce and those are the lucky ones - the others end in death. Nevertheless, if people want to get married they should be able to. I hurt for all my friends who have been told by this vote that they are second class citizens.

And yet.

In the Castro last night, gay men danced in the street for Obama, putting aside the cruelty and injustice of this decision and looking at the big picture. I watched the TV in admiration as they boogied down and I wept tears of joy and pain.

Rainbows, Hummingbirds and Straight Men Who Like Shopping for Clothes With You

It doesn't happen very often. Mostly in the movies. I cheer and cheer but the Phoenix Suns never seem to triumph and my favorite shows get cancelled after a couple of seasons.

But sometimes, as rare as a rainbow, the good guy wins.

Savor it today. The sun is shining here and we are assured a victory. Savor it as people flood the streets dancing and banging on pots and pans. Savor the moment because it will fly away like a hummingbird and our normal lives will continue and after a couple of weeks we will stop waking up in a state of wonder. But today is our St. Crispins Day and "this story shall the good man teach his son" as Shakespeare ( or Henry V if you will) said. But instead of a "merry few" the whole world is waiting and hoping for this and it's actually going to happen.

It's an amazing day to be alive.

President Barack Obama.

Morning Cup of Poem

Lessons
by Pat Schneider

I have learned
that life goes on,
or doesn't.
That days are measured out
in tiny increments
as a woman in a kitchen
measures teaspoons
of cinnamon, vanilla,
or half a cup of sugar
into a bowl.

I have learned
that moments are as precious as nutmeg,
and it has occurred to me
that busy interruptions
are like tiny grain moths,
or mice.
They nibble, pee, and poop,
or make their little worms and webs
until you have to throw out the good stuff
with the bad.

It took two deaths
and coming close myself
for me to learn
that there is not an infinite supply
of good things in the pantry.

"Lessons" by Pat Schneider from Another River: New and Selected Poems.

My Hero

Barack Obama has stated from the outset that his race was not about a cult of personality but a movement – a movement which requires something of all of us. Like Kennedy said “Ask not what your country can do for you but what you can do for your country.” The next several years will require us to be the best we can be.

It is in that spirit that I emphatically state that Barack Obama is not my hero. My hero is a 16 year old man. This young man has been dealing with his parents’ unnecessarily painful divorce and the fact that his mom has one of the worst illnesses a person could have. He watches as piece by piece she is taken away from him. He cooks all his own meals. He sometimes carries her or buttons her coat. He stays calm if she suddenly can’t breathe or she wakes him up screaming because she’s broken a toe. He has the courage to tell her when life with her feels like “holding a hot poker” and a love of life that allows him to put it behind him at times and just laugh with her.

All that would be enough to make him my hero, but wait – there’s more. This 16 year old has angered some very immature adults who happen to run our small town by having the temerity to disagree with them ( in a measured and balanced way I might add) in his blog on the Albany High site. These “leaders” have called this 16 year old out publicly and accused him (in leaflets dropped on Albany doorsteps) of “Karl Rove-like smear tactics”. Still his response is mature and measured and far more fact-driven than that of these adults, who should be the ones setting the example.

My hero has always combined wisdom and intellect. It was never his amazing brain that got me, but his measured eye and his tender heart - a heart that has been growing like a sea monkey this past year. I’m proud to leave behind some good writing and recordings of my singing but my true legacy, the thing that makes it all worthwhile – is Maclen Zilber.

Another hero is Allison who had a scary allergic reaction to one of her chemo drugs yesterday and as a result will have to have her chemo extended until June. This is a huge disappointment for her and not much to be done for it except perhaps cheery spring hats and lots of love. She is at the beginning of a long and difficult journey.

All you Muselings who write in and tell me about your mom or dad with ALS, your own battles with diseases, the loss of children, loved ones – we all have a story to tell that would break our listener’s heart. If only we could hear that story before we jumped to a conclusion, or took an unfortunate action. The audacity of kindness and understanding.

Hafiz says:

If God
Invited you to a party
And said,

“Everyone
In the ballroom tonight
Will be my special
Guest,”
How would you then treat them
When you
Arrived?

Indeed, indeed!

And Hafiz knows
There is no one in this world

Who
Is not upon
His Jeweled Dance
Floor.

Random Thoughts and Allison

Random thoughts as I wait for the sleeping pill to kick in:

1) Would John and Sarah refer to me as Carla the Canadian, Carla the Singer or Carla the Cripple?
2) New Rule: if I don’t know you and you pat me on the head I’m going to lick your face and hump your leg.
3) My friends keep buying me lovely clothes so I look like something of a dandy….a handi-dandy – get it?
4) I can’t move my left hand much and have lots of trouble with my right hand AND I STILL DO COOLER AIR QUOTES THAN JOHN MCCAIN! He looks like he’s trying to grab a rodent in his talons.
5) The best place I know to get political information is www.albanyhighcougar.com and click on THE MUSE in the top right corner
6) That’s my son’s blog.
7) Allison starts chemo tomorrow so if you like praying, send her courage, humor and a strong tummy. If you don’t like praying, send her positive thoughts and intentions. She’s a tough cookie with a creamy middle and two adorable kids who need her attention. I loved listening to her describe my brother today. “He’s such a nice man” she kept repeating. Good way to feel after 2 kids together. While you’re praying, throw in one for my baby bro.
8) Don’t tell the universe but I’m feeling optimistic today.
9) If you heard that universe, please don’t shit on me.
10) If you only had to feel love for people to be considered a slut I’d be the skankiest whore in town because I love all y’all Muselings.

The Best Damned Medical Team Ever...Period

Dr. Katz suggested I write a blog about him called “The Best Doctor Ever” since
“Worst Doctor Ever” blog shows up on the first page when you google Dr. Collier. What I would prefer to do is refer to the entire Forbes Norris ALS Clinic as “The Best Damned Medical Team Ever…Period.” They are number one. All other teams are number two or lower.

Kathy and Wendy came along to Clinic yesterday – 5 hours plus an hour of commute each way, plus the inevitable folding and unfolding of the chair and other heavy lifting. Kathy taking excruciatingly detailed notes, Wendy asking technical questions and getting marching orders ( like sew loops on blankets since I can’t pull them over myself in the middle of the night without great difficulty and frustration. I have to say I was disappointed in Wendy. It took her an entire 24 hours to complete the blanket retrofit sewing project and all she had to do besides that was pick her dog up from chemotherapy, feed her family, drive my son to his dentist appointment, buy me towels, hand and leg warmers, fill my prescription and have lunch with me, fold and unfold my wheelchair 6 times - 8 if you count the Clinic day. What a slacker! God knows how long it will take her to put magnets on the buttons of the sweater she bought me – it’s already been hours for pete’s sake.

But back to Clinic. Don’t get me wrong – the clinic days are really tough. They are long and offer me an unwelcome glimpse into the future. I need to go to bed immediately upon returning from a day there then I need to turn in early for the night which is hard when I need to wait on an accomplice to undress me. Nevertheless, I love those guys. For the purposes of their privacy, I won’t tell you their name when they are acting outside typical healthcare protocol since I don’t want them to get into trouble, but I will use their names to give flat out kudos or absolutely necessary fashion kudos/critiques.

So I hate my breathing machine and on my list of questions for them I had written just:“fucking bipap” which is what the machine is called ...bipap that is. "Fucking" was an editorial statement of sorts.

“Okay” says a certain gray haired man there whom I love “I’ll go ask about the fucking bipap.”
“I hear you’re having trouble with the fucking bipap” says the next lovely woman who comes in.
What I appreciate ( speaking as a professional) more than anything is the impeccable understated comedic timing.

Likewise, when I was explaining to someone else ( hint – she’s the sexy one) the instructions I was given for my toe she said “Wait –did Dr. Douche tell you to do that?”
Somebody reads the blog.

They are so damned real, funny, human and above all smart. They don’t act like any healthcare professionals I’ve ever encountered. I remember when my friend Bill’s fiancé was in Med School he described the process as “them” attempting to suck all the personality out of her. My anecdotal experience is that usually that works (no, not you Barry) but not with this group of misfits. They could have their own wacky TV dramedy which I should write and make a ton of money.

Carissa - sister redhead referred to me as “my Carla” which makes a gal feel welcome to say the least. Bob can quote from the blog and has a wicked glint in his eye that belies the image of soft-spoken avuncular gentleman. Stacey’s mirror neurons fire so strong that the minute I started crying her big round eyes welled up like an anime characters’. Dr. Katz takes his time. He’s usually outlandishly funny but yesterday he silently held the space for me while I cried, then later had the balls to tease me about a sore spot of mine (actually the sore spot is no longer mine – we split up), which delighted me to no end, If you’re going to tease, go all the way. Mike M ( or as Sarah Palin and John McCain would call him “Mike the Wheelchair Guy” ) has eyes that shine like a lighthouse when he talks about his son and "one take Jake's" music career. It always puts me in a good mood. Bobby (the Cowboy) has enough personality for four people and is supportive, loving and naughty (thank god!) Lee is extremely conscientious and determined to make the fucking bipap work for me.

I didn’t see Jodi, Dallas, Jan, Dee or Cheryl yesterday but they are all awesome as well. And those of you at Clinic that read this – maybe there’s a way – perhaps a fortune cookie message – to convey to Dr. M that when he’s rocking the turtleneck he’s a damned good looking guy but it’s not possible to rock a bow tie unless it’s part of a tux and you’re James Bond about to nail someone ( take that in either context). He looked dashing. 15 years younger AND he was sick with a cold. If something isn’t done about it I may need to make it a “last request.”

“Apparently the last words she blinked were: tell Dr. M – turtlenecks! Then she closed her eyes forever.”

Jeannine's Favorite Things Entry

I love this, partly because Jeannine Frank rhymes so well and partly because she says I'm "fucking pretty" which I take to mean pretty enough to.....you get the idea. Stay tuned tomorrow for a Forbes Norris ALS Clinic Post (it's all done in my head, I just need to type it.)

Here's Jeannine:

Carla writes songs when the goin’ gets shitty
All that she faces – and so fucking pretty!
Tooling around in her really cool chair
Ever the knock-out with “to dye for” hair!

Old friends and strangers just can’t wait to log in
Anxious to read what this genius is bloggin’
Knowing we’re likely to both laugh and cry
Carla reminds us to live til we die

When our stocks plunge
When our friends sponge
When we’re feeling stressed
We click on your site – and we’re good for the night
Just knowing you makes us blessed!

Top Ten Ways to Feel Better after a Shitty Month

I'm too wiped to write a blog today but this is from yesterday. i am also including a poem and an announcement: Jeannine proposes a "My Favorite Things Lyric Contest" in response to my last post. I'll post her entry as soon as she gives me the green light - it's awesome.

here's the other 2 things.

Top Ten Ways to Feel Better after a Shitty Month:

1) Plan a cool Halloween costume. Consider dressing up as Larry Flynt, George Wallace or “Wheelchair-dude-Joe-Biden-told-to-stand-up-and-take-a-bow.”
2) Tattoo “out of order” signs on your feet.
3) Wheel around in nature.
4) Get a super cool cape or a poncho so that when it gets cold, Mac doesn’t have to button your coat for you.
5) Watch debate footage of John McCain wandering around like Grandad in his slippers with his robe hanging open. Do this repeatedly whenever you’re blue. Email the link to Republicans.
6) Dress like a mermaid and tell people you only need a wheelchair when you’re on land.
7) Go someplace by yourself.
8) Skip town.
9) Make a youtube video.
10) Carry a sign with you when you go to Marin that says “ You lose!” and hold it up to those rare cars with McCain/Palin bumper stickers. Don’t forget shit-eating grin.


The Patience of Ordinary Things

by Pat Schneider

It is a kind of love, is it not?
How the cup holds the tea,
How the chair stands sturdy and foursquare,
How the floor receives the bottoms of shoes
Or toes. How soles of feet know
Where they're supposed to be.
I've been thinking about the patience
Of ordinary things, how clothes
Wait respectfully in closets
And soap dries quietly in the dish,
And towels drink the wet
From the skin of the back.
And the lovely repetition of stairs.
And what is more generous than a window?

"The Patience of Ordinary Things" by Pat Schneider from Another River: New and Selected Poems.

My Favorite Things

Can’t seem to kick this cold, which I’ve had for most of this month. The coughing is triggering laryngal spasms, which leave me wheezing and barely breathing. The good news is that I’m told these spasms are in no way life threatening. Dallas at the clinic says “You feel like you’re going to die but you won’t.” Apparently it’s a common ALS symptom. The key is to remain calm so if you’re with me and this happens, just chill. Unfortunately, laughter is a trigger – given the number of times a day I belly-laugh I’d say I’m a high-risk patient.

Jason was here Friday and Saturday. He’s one of the best people I know and I never get to see him. I love how generous he and Allison are with sharing their kids with me and I treasure every story. Thanks to those of you who wrote in with hat suggestions. Looking well-turned out is surprising healing and I should know. I want her to look like a chic New Yorker on the street when she ventures out to greet the world.

Don’t know when I will get to water walk again between the toe (6 weeks in the bloody boot) and the cold. That bums me out immensely BUT here’s the good news: I have a gig at Yoshi’s!! Day before Thanksgiving (November 26th) with my usual cast of characters plus horns. Yoshi’s is really tough to fill so start guilting your Bay Area friends into going now!

I really like my new accomplice. We both love yoga and Johnny Depp and we have the same pink bra from American Apparel. I told her it’s Johnny’s favorite bra. I have 2 night time accomplices, Katie and Desiree who only work 30 minutes a night. They both seem nice too.

So Maggie, one of our wonderful Irish sisters, wrote in with a bittersweet commode story which she prefaced by saying something like “there are no pleasant moments with ALS.” This challenged me to do two things: 1) buy bright red underwear to avoid commode mishaps (okay, they’re also really cute) and 2) come up with a list of pleasant ALS aspects though I must agree with Maggie that ALS moments can only be categorized as bittersweet at best. That being said, here are my favorite things about ALS. Please sing this out loud to the tune of “My Favorite Things.” If possible affect a British accent and dance around like Julie Andrews.

I don’t do dishes and people massage me
Ask for a blog comment, Muselings barrage me
Don’t ever stand on line at Trader Joe’s
ALS has a good side I suppose

I never drive so gas prices don’t phase me
People confide crazy shit to amaze me
Don’t do laundry, don’t fold, don’t touch a vacuum hose
ALS has a good side I suppose

When life blows chunks
There’s this cute hunk
Who cooks all my meals
I sit on my ass, tell a joke, pass some gas
Like the luckiest girl on wheels.

The Worst Doctor Ever

Okay so lately my life has felt like a funnier but equally painful version of a Chevy Chase movie: Terminal Lampoon 3 or something like that. The gods don’t shit this hard on anyone who hasn’t slept with Zeus and incurred Hera’s wrath (which I’m pretty didn’t happen cuz I would have notice a thunderbolt that big) so I’m starting to wonder “what the f$&k?”

So I wrote in my last post about being pain free then immediately wheeled straight into a desk and busted up my big toe. Now it is nearly impossible to go to the bathroom since I can barely balance on two feet, let alone one. My foot throbs, I can’t put any weight on it and I’m even more in need of help than I was before. On top of that, the doctor I saw (let’s just call him Dr. Evan Collier….cuz that’s his name) wins the “I’m a Douche-bag 2008” Award and between George Bush, Sarah Palin and others it was pretty stiff competition this year. Like Palin and Bush, this doctor ( Evan Collier) blends douchebaggery with ignorance as he thought it would be easier to have a broken toe with ALS. “You’re lucky” he said to me. “Yeah,” I said “Apart from the whole fatal illness thing.” “Well, you know” he says “Go Stephen Hawking.” Someone slept through sensitivity training. Because I’m in a wheelchair, my fist was right at the height of his gigantic balls and I wanted so very much to punch them. He had started out the exam admonishing us for coming in on an emergency basis….for a goddamn emergency…and asked couldn’t we have waited until the afternoon when it was better for him. He also repeated the same question about the color of my toes about 3 or 4 times, getting slower, louder and more irritated each time, finally prompting me to say “I’m in a wheelchair, I’m not retarded.”

He better pray that someone else has already bought the domain name www.doctor-evan collier-sucks-and-not-in-a-good-way.com.

Now that I’ve got that off my chest….

With the help of Edith I have now hired an accomplice 3 days a week. This will take some of the burden off of my friends and ease me into the whole idea of someone here helping me. Ironically, I think it might give me more freedom. The young woman we hired is Mayra and she’s smart, strong and beautiful. I like her. I now have a professional person to do my physio 3 days a week and Mayra is a Pilates and Yoga teacher so she will take over 2 days – again freeing my friends to be friends a little more of the time – not that being my friend doesn’t require some heavy lifting.

I was thinking about all of you Muselings and how you buoy me through these challenging moments. I was thinking of you as I was making a choice whether to go back to being miserable in light of recent events or to march onward. I thought about those of you who are true ladies and gentlemen who would never use the kind of language I do chuckling at my calling Dr. Douche out and how you are now commenting to one another and how we have woven a web of connectedness across this impersonal medium and I decided not to be sad – a little pissed off perhaps but not sad.

My son said the other day “You’re like Job only instead of affirming your faith in God you keep yelling “Fuck you, is that the best you’ve got?” Hmmmm. If that’s the case, maybe I need a more diplomatic tactic.

My fabulous brother is due here any minute. I have 48 hours to get in as much Jason time as I can before he returns to Allison who starts chemo soon. If you know of amazing online hat sites, hip me to them. I want her to be the most gorgeous bald woman ever – she’s no Britanny!

Finally – Jay (aka redscoutdog): I won’t be at the walk but I would love to meet your dad. He can look up my friend Alison who will be walking for Driving Miss Craisy or you can send me your contact info ( I won’t publish it) and I’ll be in touch.

I love you Muselings. Have a great weekend.

She Ain't Heavy...

I bought a little IPOD shuffle and a waterproof case with waterproof earplugs. If I am going to be confined to a wheelchair, I need my exercise so as soon as I’m well I intend to water walk every day whilst I listen to my tunes. I cleaned my ITunes out of any random music that I didn’t want to hear on the shuffle since a) I can’t control the buttons on the shuffle by myself and b) I don’t want to hear karaoke versions of Copacabana, toilet flush and gunshot sound effects or yoga lessons while I water walk. While I was cleaning up the tunes I came across a recording of my ex singing a song he had written. His voice sounded sweet and to my surprise I was reminded of the fact that I used to love him very much. It’s so easy to forget that when someone has exhausted all your good will, but there it is. I did love him. Part of me wants so much to invent a past in which I never loved him but I did. Life is messy like that.

There is very little in my life that isn’t full of complications and contradictions and so much effort goes into accepting all of it – the hilarious heartache - the tragic farce. Wendy and I were marveling today at all the hits I’ve taken in the past couple of weeks, yet how quickly I’ve bounced back. Can’t walk? Fine, I’ll go to the pool. Doesn’t work out with a guy I like? Move on. I’m taking the hits and playing rope-a-dope with ALS or the gods or maybe myself, I don’t know. I don’t have time to stay depressed – it’s life in the fast lane (remember that song by the Eagles? “She was terminally pretty…”)

But still the complexity of it all challenges me. I want to be able to make a certain sense and order out of my life like how Kris swoops in to the chaos that is my apartment to organize and label my shelves and drawers. Life is not so simple though and there are things that don’t seem to fit into any large category in my mind, relationships I will no doubt go to the grave without having resolved and things I will never fully understand try as I might to get a handle on them.

What I do know is: it’s another gorgeous day. I’m pain-free. My son is growing up to be the most interesting and committed man. I have the best group of friends that exist in the known universe. I have a family I love that loves me very much and tells me so in no uncertain terms. I’m blessed with a helium spirit and I choose to be happy.

Yesterday Kathy was trying to figure out how to get me into a house they are looking at for me. It is not yet ramped so it would require someone to carry me in to see it. We discovered that Mac can carry me around with great ease. How strange. For years I carried him around and now he is cooking me dinners, helping me with bottles and even lifting me up. There was something oddly comforting about it – when I go, I will leave a strong and capable man behind who happens to be my baby but who is ready and able to carry this weight.

You think ALS Sucks? Try the Common Cold.

Now I know why people with ALS have to avoid colds. Wow. In the daytime it’s a normal awful cold for the most part, punctuating with bouts of wheezing, choking and gagging. Night time is another story. Sheer misery. I’m barely able to breathe, I get winded rolling over in bed ( which takes me some time anyway to be fair) and I get stuff caught in my throat that makes me gag and not be able to breathe at all. Very scary.

First Mac then Kathy pointed out that an email we had gotten from Mary whose husband Brian had ALS (see blog entitled Brian’s Song) said immediately call the doctor at the first sign of a cold. This was of course the one instruction I didn’t follow since I didn’t get the email til AFTER the first sign and I’m very literal. Just kidding. I just hate calling doctors is the thing.

The upshot is I called Dallas, the research nurse in charge of the lithium study I’m on and now I have a plan of action now and I’m doing better- had a decent sleep and no wheezing/choking until morning. Big improvement. As winter comes, the prime directive seems to be stay warm and germ free. Kathy and I were already scheming about clothing that is both warm and easy for someone to help me with in the bathroom since staying germ free means drinking lots of fluids means peeing a lot means lots of muscle power for my accomplices. We came up with skirts with thigh high socks – easy to negotiate yet a little saucy for the naughty cripple in the know. Don’t suggest crotchless panties, please – after all I might catch a draft!

So one of the things I like about being single ( I like almost everything actually) is that if you have a husband, other men don’t help you fix shit because they think your husband can do it which would in my case have been ever so faulty of an assumption. On Friday Jon Evans noticed that the brake and the wheel on my wheelchair weren’t lining up just right. I had noticed this too but ignored it. Upshot is I was about a day away from losing a wheel, which was narrowly averted by his eagle eye and mechanical skills. I whip around pretty fast in that chair so loosing a wheel could have been ugly.

In the meantime I have Wendy’s husband Barry selling my beloved Miata, installing off-set hinges on doors and fixing a loose threshold made looser by my reckless driving. It’s like when you go out of town and they give you an upgrade at the rent-a-car place and you’re driving around in a vastly superior vehicle to your own at home AND you don’t have to take care of it since it belongs to someone else. Rent-a-Man!

I officiated another wedding today and think I would have made it through had the wedding started only half an hour late rather than one and a half hours late. I thought that only happened in romantic comedies. What doesn’t happen in those movies is your minister doesn’t call in a pinch hitter because she can’t be understood. That’s what happened. As I can’t drain the mucus it pools up so I am virtually unintelligible. Luckily Sofia ( who jumped in to pinch-sing at the last wedding when I broke down crying in the middle of the tune) read the service until the point where I could talk again. She also took me home and got me out of my dress which she did at the last wedding too. The next wedding I’m supposed to officiate assuming I can is hers so we need to find a new Sofia before then.

If I ever get a cold again, I’m going hunting with Dick Cheney.

Is that a Wheelchair or a Crazy Magnet?

My close friends say that I’m a crazy person magnet. It’s somewhat true. Strangers say things to me that I would only tell my best friends. In the grocery store line someone will tell me about the special meal they are preparing and why. Waiters will pull up a seat and tell me they are considering dropping out of college. A 70 year old lady at the pool flashed her tits to me ( Oh yes she did and they were outstanding. I know 45 year olds who would be thrilled to have this lady’s rack).

My son, who likes philosophy says that my problem is that I view everyone as “I-you” and no one as “I-it.” I disagree. It’s the red hair. Red heads are by definition mutants. Freaks. Crazy people look at the hair and they see a fellow outcast. Throw in a wheelchair and you have a perfect storm.

Today’s crazy sightings were the flower delivery guy and the wedding site grounds manager. The flower delivery guy – a smooth customer sporting a grey parka and a Borat-style accent says to me:

“Do you get deez flawerz fram your boyFREN?”
“Highly improbable” answer I.
“Well den” he leers “ I weel like to be your boyFREN,.”

Now as much as I love a man who’s missing a tooth or two, this feels a bit sudden to me and I hate to rush into things. I have Kathy on hold for which I’m grateful particularly when he asks me :

“ Do you not have sam wan to help you here?”
“Yes” I reply “This is her on the phone now.”

I don’t know what scares me more – the thought that he was buttering me up for a tip and that was his best play ( for once in my life, I stiffed him) or that he was some kind of wheelchair predator.

Later in the evening I go a wedding rehearsal for this Sunday’s upcoming nuptials where once again, I’m officiating. The wedding is taking place in the heart of the ghetto and the grizzled groundskeeper smells like he lives on one of the nearby streets. Again he is a tooth or two short (swoon) and he has nautical tattoos on his forearms – or at least they appear nautical – they are faded beyond recognition and so is he. After the rehearsal he asks me about my ministry and I explain that I’m ordained by the internet. I am pretty sure this guy hasn’t heard of the internet and he continues to refer to my ministry as though I’m L. Ron Hubbard, despite me insisting I just like marrying people. He himself started a church in his livingroom but ultimately decided to expand to a “sidewalk ministry” which shifts locations periodically. Yep. He’s a crazy man who talks about Jesus on street corners and of the 15 people at the rehearsal he found me.

Then comes the inevitable question about the wheelchair, my answer and the surprising response.

“God chose you for this ministry. You are god’s hand and you bring a great gift to all the people you touch because of how you accept death God chose you because you accept death without complaint.”

“Well I wish I’d gotten that memo because I would have complained like a motherfucker if I had known I could avoid this.”

“God gave you that sense of humor too.”

“Did he give me a sense of humor or did he make human beings so silly you have to laugh at them?”

“You see? Your ministry is so important. People need to hear what you have to say. I hope you can keep preaching for a long time to come.”

At this point I give up trying to convince him I am not a preacher, I have no ministry, I’m not a cute crippled servant of the lord and I just shake hands with him and say “ see you Sunday.”

“I’m not working Sunday.”

Phew.

“Maybe I’ll just stop by and say hello.”

Oy.

Emerging

I’m home with a killer of a cold but also with a sense that things might be turning a corner. I’m only crying a few times a day now, starting to think about making plans again and reconciling myself to wheelchair life and life with an aid. I hate the word aid so I’m going to need to think of a new one. Sidekick? Henchman? Trusty manservant? See, I told you I was getting better. There is dirt under my fingernails and something wriggling up my pants leg but all in all I am clawing my way out of the snake pit.

It helps to perform ( so if you know a good venue in your town….) it helps to travel and it helps to meet people dealing with more than I am and having a great attitude about it. It also helped to spend a concentrated chunk of time in LA with someone I don’t get to see very often, who makes me feel so loved and who is one of the dearest human beings I know.

My heart goes out to people with clinical depression – I don’t think I could take feeling this bad for much longer. One of the ways I generally stay happy is I try not to attach a story to my material circumstances but rather just look at what’s facing me at that particular moment in a Jack webb – just-the-facts-m’am kinda way. That has been impossible the past few weeks – everything provoked a story from the past (painful childhood, crappy marriage) or the future ( it’s only going to get worse then I’ll die) or the unknown (how’s chemo going to be for Allison, what if having me visit compounds their problems?) Whenever I am yanked back into the present I feel better but man was it tough to be there the last couple of weeks.

So now I emerge. I want to go see the butterflies in Pacific Grove with Stephanie. I want to go to Las Vegas with someone who will help me get up to no good. I want to dance if at all humanly possible at Patch’s wedding this weekend. I want to hug my brother in the flesh. I want to go to the pool every day and to get more gigs. I want to hang out with my girlfriends and not have them have to do anything but hang out.

Yes, I’m definitely feeling better.

Broadway Danny Rose

Jeannine Frank is the LA Broadway Danny Rose. She has unerring taste in artists and boasts a handsome roster of talent. She produces shows that have inspired me and made me laugh more than any other shows with the exception of Flight of the Conchords.
( Jeannine by the way refers to herself as a cross between Mel, the crazed fan and Murray the bumbling but tirelessly faithful agent of the Conchords).

She produced the show we did on Friday night, did a silent auction, booked us into a lovely hotel and showered me with love – even going so far as to help me undress and tuck me into bed. In Flight of the Conchords, Murray cautions the band not to be too “rock and roll” in the hotel by doing things like eating from the mini bar. I got very rock and roll on the balcony, backing my wheelchair into a glass table, knocking down the glassware and sending a bottle of Acai juice over the rail from the 5th floor. I’m wild like that but Jeannine doesn’t seem to mind.

The show was fun – Andy Kindler and Betsy Salkind ( one of my favorite comics) opened for us and then we did one set. The guys all sounded great and I couldn’t have felt more supported. I have the best band in the world – they are cuter than all other jazz bands, funnier than most (John R. is THE funniest musician, period, Jon Evans is damned funny on a consistent basis and David is one of those that tells fewer jokes but when he does tell one, it’s so funny a laugh just explodes out of me – sort of a Jason Capone of humor) and they are the kindest and most helpful guys you could hope to meet. Jon sweeps me up and carries me onto the stage and the other two are at the ready for car transfers, help with taking medicinal herbs, opening bottles – you name it. They have the luckiest wives on the planet. It was a great night and in some respects one of the best I can remember.

Performing is one of the only times I forget about all the other stuff. I feel safe and loved on stage and I adore finding the story in each song and telling it. I loved how the band sounded, how we played together, some of the magic moments. I loved meeting new folks and seeing old friends. I met Scott Lew (mentioned in a previous blog and subject of the documentary Living With Lew) and his fabulous wife Anabel and Don Heckman (who wrote the wonderful review) and his wife as well. Scott has had ALS for 7 years and has an amazing attitude. David mentioned that during a quiet duet with John R, Scott’s breathing machine was almost accompanying us it was so loud and Scott’s wife wondered if they should step out but David said “no.” I agree with David. The sound of the machine seemed appropriate to us both.

Lots of adventures. Two nights out of 3 alone in the hotel (yippee!) and a solo flight back home. It was not easy to travel without my Lisa but I managed. One the way she helped me in the airplane bathroom. As we closed the door, I caught the flight attendant’s eye and said “Mile High Club.” “Girl, you are bad!” he gasped. At Rent-a-Wreck, Lisa told Dave the manager why we were there and he decided to give us the car for free. Life is a constant surprise. A gentleman connected to the music school upstairs from the hall gave me a gorgeous photo and love and kindness was everywhere.

I’m still not out of my slump but I feel myself pulling slowly out of the muck and moving into this next phase. I think of Scott, needing this ventilator, having to repeat himself when I can’t understand him, and just so very cool and I think, “Hey girl, you’re lucky. Love this time as much as you can.”

Dear Muselings

I got ALS this weekend. I know, I know. I was diagnosed on December 26th, 2007. It has been confirmed and reconfirmed. I have used up many words discussing it but I didn’t know how good I had it. I am starting to get an inkling of what this disease is now and it’s a whole new ball game.

Now we (me and my super squad of elite action heroes that could make a Navy Seal cry from their disapproving glance) are looking for an aid.

Now we are trying to find a way to pay for an aid (Kathy estimates 11,000 per month).

Now people are over almost all the time tending to the most personal and intimate needs.

Now I’m afraid to walk a few steps on my own.

Now the Vietnamese girls at the nail shop cry and hug me when they see me wheel by.

Now I am shrinking and shrinking so I feel like a character from “Honey, I shrunk the Crip” and expanding and growing so I feel like I am about to have god or Mel Gibson or someone whisper the secret of life into my ear.

I am the Black Knight from Monty Python and the Holy Grail.
I am a float at the Macy’s Parade with a slow leak.
I am a dripping salt water faucet.


I am performing on Friday in Los Angeles. One of my angels, Jeannine Frank has set up the whole thing. I fear it’s the last show. I hope not. If you’re around, come hear it – I won’t be this sad – I know it because I’m never sad when I perform.

I won’t be back until Sunday so no blogs until then.

The show is 8pm at Steinway Hall, 12121 Pico Blvd at Bundy

By the way – you are the Muselings and I love you.

Time to get a shit colored fan

I have had the shittiest couple of weeks I can remember and what sucks the most about it is I haven’t hit rock bottom yet. Friday I found out I had hurt my sister-in-law, which is not something I ever intended to do nor something I will easily get over. She is in the middle of the health crisis of her life, juggling 2 darling kids ( not literally, they’re too big for that) and coping with the grief of transitions, adaptations and of course the fear that cancer always instills – facing our own mortality. Allison is such a remarkable woman and great mom and I love her so much that it is devastating to think I caused her even a thimble full of pain.

But wait, that’s not even the sucky part. Around 5 or so, I was getting ready for my gig and I fell fully backwards, missing my hard headboard by about a foot but landing on the back of my head with huge impact. Of course I had taken off my medic alert bracelet (“Help, I’ve fallen and I can’t get up”) for the gig but I was able to crawl to the cell phone and reach Edith. I lay there on the floor sobbing and wondering how the hell I could possibly perform.

Once I got to the club, I was surrounded by so much love and laughter, I got through it all with the help of brandy and painkillers. Lisa made sure I was well iced and the small number of folks who knew what was happening rallied to the cause. Edith informed me she was sleeping over which I felt was unnecessary until I fell again and again hit the back of my head. Again I sobbed and sobbed – less for the pain that the symbolism. These were the two worst falls since before my diagnosis, so scary, violent and random that even I am now forced to agree with many of the health care professionals I work with and most of my friends. I need to be in the wheelchair almost all the time.

Transitions are hard and this one is a bear.

I don’t want this.

I want to be normal.

Sometimes I wonder how many body blows I can actually stand. Since Allison’s diagnosis I have been sick with grief for her, for my precious and amazing niece and nephew, for my poor family who are already reeling and of course for my beloved baby brother for whom I would happily take a bullet (especially now!) While they have been fighting their battles, I’ve been dealing with my own decline, severing a 25 year tie with someone who has been very unhealthy for me, worrying about the state of my son’s hurting heart and slowly realizing that someone I really like does not reciprocate my feelings – or maybe just finds it way too depressing to date someone with my challenges. Either way it has the same effect.

It’s better if these things aren’t jammed into 2 weeks I think.

But here’s the funny part – blessings abound. The boys in the band offer their superb musicianship and their loving friendship, their wheelchair schlepping services, their jokes, their Carla-lifting and love. At the ALS event on Saturday there was no chair lift as promised and one of the men said “Don’t worry, we have all kinds of people around here trained in lifting people” and my piano player John R said “But they don’t love her like we do, “ and my bass player Jon said “Yeah, we’ll carry her.” Which he did, honeymoon-style up the steep set of stairs.

More love – my mom brought the famous (to this blog) Pat H. to the Bay Area to hear the gig. What a treat to meet her in the flesh!

More love – my dad and brother admitting to crying when they read the recent review, my dad covering my head with kisses after the gig and hearing my drummer David talk about joking with Dad at the urinals. He said something to the effect of “your daughter would say something really funny about now.” No doubt.

More love – my amazing, phenomenal, gorgeous girlfriends swooping in, bossing me around and knowing what’s good for me even when I can’t see it. The way they hold me when I cry, hold the space for me to vent, deal with things I don’t want to, mother me in a way that is so hard for me to accept but so deliciously comforting, look gorgeous in velvet dresses and laugh when I offer to help them bury their husbands.

Yet more love – if you saw me sing Friday night, I wasn’t being brave or faking it. I was just thoroughly loving the moment. It’s a joy, honor and privilege to get to sing and tell Sarah Palin jokes. It just doesn’t get much better than playing with those three guys for all of you.

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

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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.