Just like Patrick McGoohan in the famed series Danger Man, I wheeled my sporty little vehicle through the cobbled streets of London meeting danger and intrigue along the way. Like Danger Man I had a beautiful and mysterious woman by my side, though more of a Bond girl as she had that far east flavor. She’s called Lea but here in the US she’s AKA’d as Edith and she needs a TV series of her own.
On day one Rosalie the security agent at SFO feels compelled to regale me with a tail of her menopause woes right up to the live hot flash play by play which further delays us since she has to go get paper towels to wipe herself. It takes half an hour to pat me down but at least I now know that once the weather gets warm enough, Rosalie cuts her hair very short and dyes it red. I’m always telling an incredulous Edith about people who approach me and tell me their life stories – on this trip I offered eyewitness evidence.
At Heathrow among the signs with names that drivers held was one that said Master Bater. Loved it. Our driver was part time a driver for this car service and part time a driver for handicapped people “like me.” Ouch. He hugged and kissed me goodbye at our destination. We handicapped are so loveable, don’t you just want to squeeze our cheeks?
I haven’t quite wrapped my head around that one. It’s like when Endora from Bewitched would transform her son-in-law Darren Stevens into something and everyone could see it but him. I don’t really see that I’m disabled. SAM! (Bewitched reference, which works better if I yell in a nasal voice and shake my fist to the sky.)
Speaking of TV: one night I couldn’t sleep because I couldn’t remember the name of the character Julie Kavner played in Rhoda. I knew I wouldn’t sleep until I did. Hours later: Brenda! Brenda Morgenstern. Thank God! Now did she get married too to that nice guy and what was his…oh fuck. Two more sleepless hours. One night I was kept up wondering if Edith’s oldest brother dyed his hair. I’ve never met the man.
I didn’t sleep or discharge certain bodily functions for the entire trip. 3 uninterrupted hours was my record yet I was mostly cheery.
I won’t tell you about our hosts, Kenji and Julie yet. That’s for later. We had Indian food and I was so tired I could barely negotiate the wheelchair. I also walked like a bowling ball being thrown by Barak obama (if you don’t follow the news he scored in the 30s in bowling which is not a good thing). I was so weak I couldn’t turn the light on (string not switch) flush the toilet or open the bathroom and bedroom doors. That was a fun night for Edith.
We went the next day to the London Eye – a gigantic ferris wheel/observatory that Londoners call “The London Eyesore” It was a very international crowd so no hope finding Rupert, Nigel, Fiona and Basil per my sister-in-law’s instructions. By the way – I will be accepting up to 3 assignments for every future trip unless I deem them dangerous or highly unpleasant. It’s fun to have things you have to do but aren’t site specific.
After the London Eye we went by Big Ben, Westminster Abby and parliament, which was not in session. (Boo.) Edith took my picture with a couple of cops per Mac’s assignment and I bit a lovely cab driver called Richard per Gina’s suggestion. (If you recall, this whole thing started with Gina telling me to “bite a British man.”)
That night we saw a play with some of the best if not the best acting I have ever had the privilege of seeing. I wept at the end of the play as the doomed lovers went off to drown themselves together not so much because I bought the story but because they sold me on the depth of their love and because great great theater is so rare – like a hummingbird –and like a hummingbird it’s life is too damned short and because I still have so much to learn and not enough time to learn it all.
In elementary school I sat on the floor in the library crying one day because I’d never have time to read all the books in the world. I feel that way all the time now.
I’ve had a taste of British Theater and I’m hungry for more.
Tuesday was Hyde Park. We were dropped off at Speaker’s Corner only to find out that incendiary tracts fomenting dissent are only offered on Sundays. Again Boo! We walked through the park and saw the Italian fountains and the Princess Diana Memorial Fountain. Now I was particularly anxious to see this as I expected a tacky horror show like a bust of her head with that hairdo that defines an era of bad fashion and the water would come out of her mouth to commemorate her bulimia (Edith’s idea, not mine). No such luck. It’s a minimalist, tasteful fountain the blends into the surroundings. It’s lovely.
The evening was Picadilly Circus and then a comedy club where we met Kenji who’d spent the day at Wimbledon. Already my wheelchair was showing signs of not making it through the trip. The treads were shreds and the London streets are unforgiving. Somehow miraculously though, whenever we’d hit a bump or curb that Edith couldn’t get us over – just as I was ready to get out and push – one or several men would materialize and lift the chair for us. Thank god we’re so gorgeous.
The bouncer at the comedy club was very helpful, lifting me from lift to chair, lifting the chair up and down the staircase and making Edith cry at his kindness and solicitousness…if that’s a word. Well it is now.
Highlights from the club:
Edith sending a note to the comics' dressing room asking them to announce that the woman in the wheelchair needed to talk to Rupert, Nigel, Basil and Fiona.
and at the top of the show:
John ( comic): Any Americans here?
Edith/Carla: Woo!
John: Woo? By “woo” I see you have severely misunderstood the mood of our nation.
And later, John after a rape joke falls flat:
John: You gave me the topic, don’t boo me now. Besides, I know you ladies SAY you don’t like rape jokes but really you want them.
I am the only woman laughing…I mean howling..at this point.
Finally – coming down the weird old lady lift and being wheeled outside, John says in a loud voice about me “I can’t believe they let those kind in the club.” I wanted to marry him. I chatted briefly with him and a Canadian comic from Calgary who was enamored with the magic mushrooms in Vancouver. Fun guys but sadly no Ruperts, Basils, etc. We had much work to do if I was to avoid plan B of Allison’s assignment which was if we didn't find people with any of those names to either shag or snog a British man.
That’s a good place to end Part One. I can just hear the comments now. “You don’t think she’ll really snog someone do you?” “ No, this is Carla we’re talking about – she’s not going to snog a complete stranger if she can shag them.” “What is snogging anyway?” “Google it.”
Sunday, June 29, 2008
Friday, June 20, 2008
Biting British Men
Unless I squeeze one last one in tomorrow morning, I probably won’t be blogging for the next week. Edith ( featured in the April blog entitled Here I sit broken-hearted at http://carlamuses.blogspot.com/2008/04/here-i-sit-broken-hearted.html) is taking me to London! London, England in case you were wondering. We’ll see some shows, walk around and I’ll endeavor to do the things asked of me ( Mac wants a photo of the “average” British cop and Gina wants me to bite a British man. I myself am hoping to find a “Johnny” or “franger” to add to my international condom collection.
I’ll be back at the end of June with stories to tell and gigs to play. Mark July 11 on your calendars – I’ll be at Anna’s Jazz Island in Berkeley at 8pm!
So much tough news this week, so many tears, so much to hold and yet I feel like a punching bag clown, popping up for more with a grin on my face.
Life is always calling me to come and play.
I’ll be back at the end of June with stories to tell and gigs to play. Mark July 11 on your calendars – I’ll be at Anna’s Jazz Island in Berkeley at 8pm!
So much tough news this week, so many tears, so much to hold and yet I feel like a punching bag clown, popping up for more with a grin on my face.
Life is always calling me to come and play.
Wednesday, June 18, 2008
What Fresh Bullshit is This?
Bella (5 and 11/12s) and Lucy ( 9) came over to watch the Princess Bride. We watched the movie, ate brownies and popcorn, did wheelchair races down my hall and used my new electric lazy boy to see if they could “survive” the chair without being thrown out of it. I laughed so hard watching these gorgeous girls zoom around in the wheelchairs I thought I’d split a gut. Spending time with kids has become so important to me.
Lucy made me a pair of great green earrings and Bella brought over a magic potion. She had asked the tooth fairy to bring her something that could cure a dying person. She got a hunk of gold under her pillow, which she put in a jar filled with water for me to drink. How do you stay dry-eyed for that?
My tongue has started to give me trouble. All of a sudden it is challenging to keep it moving the way it’s supposed to and Lisa said my speech was thicker. The folks at the clinic do not think it is a lithium side-effect, they think it is ALS. I think it’s unfair.
On the upside, I laughed almost as much as I cried today and given what a shitty day it was, that’s pretty cool.
Oh and the butterfly I told you about the other day is still alive!
Lucy made me a pair of great green earrings and Bella brought over a magic potion. She had asked the tooth fairy to bring her something that could cure a dying person. She got a hunk of gold under her pillow, which she put in a jar filled with water for me to drink. How do you stay dry-eyed for that?
My tongue has started to give me trouble. All of a sudden it is challenging to keep it moving the way it’s supposed to and Lisa said my speech was thicker. The folks at the clinic do not think it is a lithium side-effect, they think it is ALS. I think it’s unfair.
On the upside, I laughed almost as much as I cried today and given what a shitty day it was, that’s pretty cool.
Oh and the butterfly I told you about the other day is still alive!
Tuesday, June 17, 2008
This Just in: Czar of Fun to Wed
The picture above displays the core Driving Miss Craisy members minus a couple of women and our two brave men. Today’s featured member (Volunteer of the Week!) is Lisa.
Lisa is the Czar of Fun. Her fertile mind is always dreaming up little “mystery trips” as she calls them to places like Little Kabul in Fremont or hot air ballooning or the like. Lisa is getting married this summer and if it were anyone else I’d be worry about her Czar of Fun status being compromised. So many couples become partners in the business of home-making and forget about the fun they had courting. I’m happy to say that was not one of the problems in my marriage but I see it happen to people and it’s subtle and gradual. Lisa and Alan won’t fall into this trap. They are on a delightful adventure together.
Here’s a sample of the ways Lisa earns her way in the world: stilt-walker, balloon animal making clown, giant dancing cookie, movement teacher, face painter, acting teacher, painter of sculpture guitars, horse rider, elf, improvisor, writer…the list goes on. She is multi-talented, super driven and outlandishly original. Lisa once read that Orson Wells liked a particular brand of cigar from Amsterdam. When she was there, she picked up a box and carried them around in her car in LA thinking to give them to the great director one day. Well one day came when she was doing an event dressed as an elf ( she’s short so it’s plausible that she could actually be an elf though pixie fits better). The party was across from Wells’ apartment so afterwards she showed up at his door and presented him with the cigars…dressed as an elf. Wells died not long after and I imagine him in his boozy decline, reeling to the door only to be met by and elf bearing a box of his favorite cigars. I imagine him waking up in the morning marveling at his crazy dream then spying the cigars on the coffee table. I do believe in fairies. I do.
I remember crashing at Lisa’s house once and she put a mint on the pillow. I hit my head getting into her car ( my coordination is not so great now) so she gave me a “special kid” helmet to wear. She is the queen or whimsy, the Duke of Daring, the Sultan of Silliness.
She is also a hell of a chauffer, organizer of bodywork, maker of practical gadgets, duct-taper of boobs for strapless dresses, transporter of wheelchairs, purchaser of soy chai lattes and dispenser of love. Hardly a day goes by when Lisa doesn’t call with a perky “just a check-in call, no need to call back.” Hardly a favor have I asked that she hasn’t said “yes” before I could finish my request. She almost single-handedly made it possible for me to direct my final show. Without her it wouldn’t have happened.
So when she overestimates my energy or bravery (“Carla, is it okay if we pick you up and put you on the top of the car for a photo?” “No, Lisa.”) I adore her all the more because it’s her relentless optimism and her fervent hope that somehow this is all a bad dream and I’ll return to robust ( though not as robust as Lisa) Carla that keeps that brilliant mind churning with ideas of how to make my last years a magical mystery trip.
Now, don’t you wish you were marrying her?
In other news, my lithium levels are low. I take this as a good sign. Maybe when they get to where they’re supposed to be I’ll notice a “not change.” That would be really nice. Last night my son ( who is reading…for fun… a book on Tort Law) and I took the bus out to dinner and to see Kung Fu Panda. I was so happy to be doing something silly with him. The wheelchair/bus maneuvering is getting easier and easier. Once I get my permanent chair I’ll be able to go out on my own on the bus and give Driving Miss Craisy a well-deserved break.
Sunday, June 15, 2008
butterfly in a box
Last night my friend’s daughter showed me a butterfly. It had landed on her finger and she and her mom had managed to get it into a shoebox. I peeked into the box and saw this beautiful black and yellow butterfly. Its’ colors were this vivid contrast against the scarf which had been lovingly laid in the box. My voice feels like that butterfly. I did a concert last night and with great effort I can still make it beautiful enough to please the audience but like that butterfly it longs to soar and it can’t. Nothing about this disease is more challenging than the way it has clipped my performing wings. And yet if you could see the intensity and passion of this beautiful little girl as she told how the butterfly came to her. How she watched eagerly for our reactions as we peeked into the box, you would see a fierce beauty in the capture of that butterfly. There is a beauty in this slow, slow dying of everything I thought was me and yet I am still here. It got me giddy on the gig, making stupid jokes and cracking up mid song a couple of times – I think it was giddiness from being able to rise above this huge sadness of knowing there are only a few gigs left.
Friday was my first lithium study check-in. I wish I could say I notice an improvement but the last few days have been nearly impossible. My legs, lower arms and hands shake vigorously, walking is more like careening and it’s hard to operate the scooter because of how weak the thumbs are.
I was hoping I had just pushed it too hard on Sunday when I attempted boogie boarding again. The day was initiated by Jonathan – a very nice person and wonderful playwright – who brought along his friend Ingrid and her friend D’Alary ( great name, huh?) who were joined by patron saint of fun, Lisa. They got me into a wet suit, got me onto a board and pushed it around in the water. The hardest part was going out against the big waves and being pounded by them – harder still for all of them to keep me on the board. The wet suit made the water wonderfully tolerable and it did feel lovely to be out there. Didn’t catch any real waves but I know months from now I’ll look back enviously on the time I could do just that. At one point Ingrid had everyone shift the board around so I could see the view. It looked like an oil painting. I cried as they carried me back to shore because it was all so beautiful.
I thought to myself that if my legs and hands didn’t recover it was probably worth it. My doctor, however thinks these new developments have been creeping up and I just noticed it. The good news about that is I can keep doing things like trying to boogie board. The bad news is that this trouble walking and using my hands is probably not temporary. The other bad news was that while I did well on the vital lung capacity test, I didn’t do well at all on the other breathing test, which indicates what I already knew from my trouble singing. My diaphragm is weakening. At my next visit we’ll discuss measuring me for my permanent wheelchair and nighttime breathing machine. Boo! They also tried to get me to leave with a walker ( more stable than the cane) but I couldn’t do it. I think I’d rather crawl.
I got the gift of the century the other day. Maclen told me I had shown him by the way I’m dealing with this how to deal with a tragedy. We had a long real talk about how it’s okay to have fun, happy days in the midst of a horrible situation, that you don’t have to worry about experiencing the grief – it will blindside you when you least expect it.
That’s how it is. Thursday night was the Bay Area Theater Sports benefit. It was wall to wall laughs. They raised over 1200 and I had a ball. So many amazing people helped out but particularly Laura Derry the instigator and Rebecca Stockley. Patron Saint of Fun Lisa helped out as well as a host of amazing improvisers including my colleague Paul Killam who made me pee almost with this game in which he and another improvisor walk blindfolded through a stage of mousetraps while doing a scene. Hysterical. The only time I had trouble was when I remembered at the end why we were all there. The tears came and went quickly. It was a good day.
Several months ago I told my engineer/producer/bass player that I didn’t know if I wanted to live if I couldn’t sing. I was over-reacting. I see the end of singing coming and I will deal. I will absolutely live. I still have this blog, the people I love and the memory of a beautiful little girl who is still young enough to get what a miracle it is to have a butterfly land on your finger.
Friday was my first lithium study check-in. I wish I could say I notice an improvement but the last few days have been nearly impossible. My legs, lower arms and hands shake vigorously, walking is more like careening and it’s hard to operate the scooter because of how weak the thumbs are.
I was hoping I had just pushed it too hard on Sunday when I attempted boogie boarding again. The day was initiated by Jonathan – a very nice person and wonderful playwright – who brought along his friend Ingrid and her friend D’Alary ( great name, huh?) who were joined by patron saint of fun, Lisa. They got me into a wet suit, got me onto a board and pushed it around in the water. The hardest part was going out against the big waves and being pounded by them – harder still for all of them to keep me on the board. The wet suit made the water wonderfully tolerable and it did feel lovely to be out there. Didn’t catch any real waves but I know months from now I’ll look back enviously on the time I could do just that. At one point Ingrid had everyone shift the board around so I could see the view. It looked like an oil painting. I cried as they carried me back to shore because it was all so beautiful.
I thought to myself that if my legs and hands didn’t recover it was probably worth it. My doctor, however thinks these new developments have been creeping up and I just noticed it. The good news about that is I can keep doing things like trying to boogie board. The bad news is that this trouble walking and using my hands is probably not temporary. The other bad news was that while I did well on the vital lung capacity test, I didn’t do well at all on the other breathing test, which indicates what I already knew from my trouble singing. My diaphragm is weakening. At my next visit we’ll discuss measuring me for my permanent wheelchair and nighttime breathing machine. Boo! They also tried to get me to leave with a walker ( more stable than the cane) but I couldn’t do it. I think I’d rather crawl.
I got the gift of the century the other day. Maclen told me I had shown him by the way I’m dealing with this how to deal with a tragedy. We had a long real talk about how it’s okay to have fun, happy days in the midst of a horrible situation, that you don’t have to worry about experiencing the grief – it will blindside you when you least expect it.
That’s how it is. Thursday night was the Bay Area Theater Sports benefit. It was wall to wall laughs. They raised over 1200 and I had a ball. So many amazing people helped out but particularly Laura Derry the instigator and Rebecca Stockley. Patron Saint of Fun Lisa helped out as well as a host of amazing improvisers including my colleague Paul Killam who made me pee almost with this game in which he and another improvisor walk blindfolded through a stage of mousetraps while doing a scene. Hysterical. The only time I had trouble was when I remembered at the end why we were all there. The tears came and went quickly. It was a good day.
Several months ago I told my engineer/producer/bass player that I didn’t know if I wanted to live if I couldn’t sing. I was over-reacting. I see the end of singing coming and I will deal. I will absolutely live. I still have this blog, the people I love and the memory of a beautiful little girl who is still young enough to get what a miracle it is to have a butterfly land on your finger.
Tuesday, June 10, 2008
singing
If you live in the Bay area, please come to the Jazz School this Saturday night at 8pm. I'll be singing songs from the new cd and the now-being-recorded cd as well. Maybe an original or two if I have the courage to share them. Each gig is a gift at this point where I hope the voice and energy will hold out to the next one but recognize there are no guarantees. There is really nothing like singing.
Here are the details. Tell your bay area friends if you're an out-o-towner.
Jazz School
2087 addison st between shattuck and milvia ( reasonable parking lot across the street)
Sat june 14, 8pm
Featuring: me, john r. burr, kai eckhardt, david rokeach, mike zilber.
I'll write a "real" blog soon.
Here are the details. Tell your bay area friends if you're an out-o-towner.
Jazz School
2087 addison st between shattuck and milvia ( reasonable parking lot across the street)
Sat june 14, 8pm
Featuring: me, john r. burr, kai eckhardt, david rokeach, mike zilber.
I'll write a "real" blog soon.
Saturday, June 07, 2008
"You Can Heal Your Life" or "It's All Your Fault, China."
The first time I got sick I read Louise Hay. Louise writes about how we can heal our life by recognizing how our own thought patterns affect the health of our body. Our emotions, you see are the underlying cause of illness and understanding this can rid the body of the disease. Made sense to me.
A friend brought me Louise’s analysis of ALS around the time of my diagnosis. Apparently it is caused by fear of success. This makes sense since who's ever heard of a successful ALS patient. (New rule - you can't bring up Shostakovich, Lou Gehrig, Stephen Hawking, David Niven, Charles Mingus, Jacob Javitz and Mao Tse Tung). Now I knew I had a LACK of success but no idea that I feared it. I even thought I was actually attempting to be successful. Who knew? Even more sobering – one in 100,000 people are apparently fearing success and bringing about this unfortunate illness. Luckily, Louise has affirmations you can utter to address the root cause of your illness. The idea is to replace your “stinkin’ thinkin’” ( "I shun fame and in so doing dare the gods to rain down their motor neuron disease") with positive affirmations ("I embrace my success and welcome it to my life.") thus reprogramming the subconscious to think differently and to automatically react in a more positive way when trigger situations occur in your life.
Now it may surprise you to find out that I have a bone to pick with Louise Hay. There are only about 30,000 people in the US with ALS and we are included in her book. Fair enough. But who is addressing the underlying emotional patterns that causes 28,000 people a year in this country to allow themselves to succumb to a gunshot wound from a random homicide? Arguably there is a far greater risk of dying from the bullet of a mad gunman or irate spouse that to contract ALS and I think people should know what kind of thought patterns are allowing a bullet, - let’s say from an M-16 rifle,- to turn the point of impact ( or in layman’s terms, say “the head”) into hamburger. So it’s only fair to ask: What kind of affirmation will prevent the hydrostatic shock to the body, which occurs when a high-velocity projectile burrows at break neck speed through the body, causing widespread organ damage and disruption of nervous functions?
What kind of affirmation indeed.
In light of Louise Hay’s rather glaring omission, I have a few suggestions. I suggest you employ all of these because you can’t be too careful:
Affirmation 1: I am kind to troubled teens in trenchcoats.
Affirmation 2: I seek help when my husband (who recently lost his job and thinks that Maury Povich is a prophet ) receives secret transmissions through the massage chair’s remote control telling him that he is not the kids’real father
Affirmation 3 :After dark I take a cab.
Affirmation 4: That military recruiter is full of shit.
Affirmation : When you live in the projects, agoraphobia is not such a bad thing.
But what are the underlying fears that cause some people to die from gunshot wounds and others to live? It’s not fear of success – that one is taken. Thanks Louise! It’s not fear of lead - unless we have some proof that gunshot fatality victims had a history before their deaths of insisting on being x-rayed without the heavy protective apron. Is it hubris? A certain superman syndrome? Do we all need to reach a level of emotional evolution equal only to Keanu Reeves’ Neo in The Matrix? Now that dude understood that bullets are all in our mind and unlike Jesus and Ghandi (who could have benefited from Louise Hay, particularly Jesus who clearly had a Christ complex) he didn’t die.
SO what if you do everything that Louse Hay suggests and do her ( and of course my) affirmations daily to safeguard yourself against all diseases, earthquakes, random mortar fire and multiple stab wounds and you still get sick? Well then remember what Morpheus said to Neo in The Matrix: “Fate, it seems, it not without a sense of irony.”
Final thought: do you think Sharon Stone and Louise Hay are in the same support group?
A friend brought me Louise’s analysis of ALS around the time of my diagnosis. Apparently it is caused by fear of success. This makes sense since who's ever heard of a successful ALS patient. (New rule - you can't bring up Shostakovich, Lou Gehrig, Stephen Hawking, David Niven, Charles Mingus, Jacob Javitz and Mao Tse Tung). Now I knew I had a LACK of success but no idea that I feared it. I even thought I was actually attempting to be successful. Who knew? Even more sobering – one in 100,000 people are apparently fearing success and bringing about this unfortunate illness. Luckily, Louise has affirmations you can utter to address the root cause of your illness. The idea is to replace your “stinkin’ thinkin’” ( "I shun fame and in so doing dare the gods to rain down their motor neuron disease") with positive affirmations ("I embrace my success and welcome it to my life.") thus reprogramming the subconscious to think differently and to automatically react in a more positive way when trigger situations occur in your life.
Now it may surprise you to find out that I have a bone to pick with Louise Hay. There are only about 30,000 people in the US with ALS and we are included in her book. Fair enough. But who is addressing the underlying emotional patterns that causes 28,000 people a year in this country to allow themselves to succumb to a gunshot wound from a random homicide? Arguably there is a far greater risk of dying from the bullet of a mad gunman or irate spouse that to contract ALS and I think people should know what kind of thought patterns are allowing a bullet, - let’s say from an M-16 rifle,- to turn the point of impact ( or in layman’s terms, say “the head”) into hamburger. So it’s only fair to ask: What kind of affirmation will prevent the hydrostatic shock to the body, which occurs when a high-velocity projectile burrows at break neck speed through the body, causing widespread organ damage and disruption of nervous functions?
What kind of affirmation indeed.
In light of Louise Hay’s rather glaring omission, I have a few suggestions. I suggest you employ all of these because you can’t be too careful:
Affirmation 1: I am kind to troubled teens in trenchcoats.
Affirmation 2: I seek help when my husband (who recently lost his job and thinks that Maury Povich is a prophet ) receives secret transmissions through the massage chair’s remote control telling him that he is not the kids’real father
Affirmation 3 :After dark I take a cab.
Affirmation 4: That military recruiter is full of shit.
Affirmation : When you live in the projects, agoraphobia is not such a bad thing.
But what are the underlying fears that cause some people to die from gunshot wounds and others to live? It’s not fear of success – that one is taken. Thanks Louise! It’s not fear of lead - unless we have some proof that gunshot fatality victims had a history before their deaths of insisting on being x-rayed without the heavy protective apron. Is it hubris? A certain superman syndrome? Do we all need to reach a level of emotional evolution equal only to Keanu Reeves’ Neo in The Matrix? Now that dude understood that bullets are all in our mind and unlike Jesus and Ghandi (who could have benefited from Louise Hay, particularly Jesus who clearly had a Christ complex) he didn’t die.
SO what if you do everything that Louse Hay suggests and do her ( and of course my) affirmations daily to safeguard yourself against all diseases, earthquakes, random mortar fire and multiple stab wounds and you still get sick? Well then remember what Morpheus said to Neo in The Matrix: “Fate, it seems, it not without a sense of irony.”
Final thought: do you think Sharon Stone and Louise Hay are in the same support group?
Thursday, June 05, 2008
Das aufregend andere condom
Okay, if you’re over 60, or consider yourself in anyway conservative, this is probably not the blog for you. Skip down to the second half of this blog instead or tune in later in the week when I write about Amma or some other lofty topic, because today I’m writing about a special gift I received.
Now don’t get me wrong – I believe one can never have enough copies of Tuesdays With Morrie lying around the house – just in case. It’s a thoughtful gift to be sure. Every once in awhile though, a friend brings me a gift that tickles me. Christina brought back some Billy Boy Condoms from Germany - Das aufregend andere condom or “the other exciting condom”. Not the first gift on most people’s list for the discerning ALS patient but one that cheered me to no end and made me determined to find an opportunity to test drive one while I can.
You only have to look at the picture of Billy Boy to know it is indeed das aufregend andere condom, boasting the German engineering precision and attention to detail that we all desire in our love making endeavors. The condoms are mit extra feucht which means they are extra moist as if the germans anticipated that when one speaks a language wherein one has to spit at one’s partner to say I love you (Ich liebe dicht) one cannot assume that the partner will be um….shall we say self-lubricated? Sexy fits really well before Italian, (as in sexy Italian) Frenchman, Greek, Israeli and of course Canadian but German? Not a common word pairing though I’ve seen some pretty hot german guys who could probably make me extra feucht.
I want to be the spokesmodel for Billy Boy. I would wear a purple peignoir set and hold the box next to my face and sigh seductively “Ah Billy Boy. Sie sind zu meinem Vergnügen so aufmerksam.” ( Oh Billy Boy, you are so attentive to my pleasure) That seems like a german ad, doesn’t it?
I think I want to start a condom collection of condoms from around the globe, which I can then bequeath to Mac. If you’re in a foreign country – bring me back a quirky condom.
Yesterday I had lunch with Kris at Scott’s and had half a glass of wine in the middle of a weekday. I felt like one of the ladies who lunch – it was grand. Funny how in the midst of trying appointments and difficult circumstances that oasis of lunch with someone you love can be such a treat. My friend Andy told me that when she was sick with cancer, after every doctor’s appointment his mother would reward herself with some kind of treat – a lunch, a trinket, whatever. I like that idea.
Kris and her husband will no doubt be listing me as a dependent on their 08 tax return. She has done so much for me, it’s astonishing. I am no longer doing laundry because I can’t get the quarters in the machine so she and some of the other girls take my laundry when they drop off my weeks supply of food from Cecilia. You have never seen anyone fold like Kris can. I could put her folded laundry out as a decoration.
Kris is a paradox. On the one hand she has the whole hostess thing totally dialed in. She cooks gorgeous meals, bakes cookies for the baseball parties, volunteers, plans extravagant parties with perfect decorations. She served us fondue once and we actually had to go into a time machine she had built back to 1975 to eat it. At Christmas her house looks like a tree farm or Martha Stewart’s ranch house. She lives on the same block as her parents’ down what they call “the long hallway” and seems to always be hosting family brunches and other festivities. In short, the energy and industry that are required just to be her is exhausting. But there is another side to her.
It’s the woman who shows up at 10AM to help me paint my house (when I had a house to paint) with a giant can of bud…which she actually drinks! It’s the woman who followed the Dead and who is still in love with her college sweetheart. It’s the avid consumer of diet pepsi and mystery novels who is passionately opposed to the death penalty and smart enough to articulate an intelligent position in the face of those who would advocate for it. It’s the woman whose mix of youthful colloquialisms and mastery of the English language creates a style of madly poetic speech that is unmistakably Kris. Imagine a well-manicured, perfectly accessorized mom of a young child asking the kid “Dude, what is your saga?” before launching into a complex analysis of our fractured democracy. That’s her.
Recently I spent an obscene amount of money on tickets to see Flight of the Conchords. It was worth it. Mac and I both agreed that we wanted to marry that concert and have a long committed relationship with it. I was planning to add an equally obscene amount of money onto the deal to rent a limo to take us to the show since it sucks to wait for a cab and BART was too far away. Kris suggested we instead go with her son and his dad and offered to drive us all to the city to her husband’s office. Remembering my limo plans she showed up in a chauffer’s uniform and served champagne ( in glass flutes) and strawberries and non-dairy whip.
I can’t even list the ways that this woman has shown up for me, running interference on healthcare, legal issues, retirement, etc, offering to fix the flowers on my deck because she knows how much I love sitting out there and of course holding me while I heaved with sobs like a little girl, wrapping her motherly arms around me until I remembered that everything would be okay.
Now don’t get me wrong – I believe one can never have enough copies of Tuesdays With Morrie lying around the house – just in case. It’s a thoughtful gift to be sure. Every once in awhile though, a friend brings me a gift that tickles me. Christina brought back some Billy Boy Condoms from Germany - Das aufregend andere condom or “the other exciting condom”. Not the first gift on most people’s list for the discerning ALS patient but one that cheered me to no end and made me determined to find an opportunity to test drive one while I can.
You only have to look at the picture of Billy Boy to know it is indeed das aufregend andere condom, boasting the German engineering precision and attention to detail that we all desire in our love making endeavors. The condoms are mit extra feucht which means they are extra moist as if the germans anticipated that when one speaks a language wherein one has to spit at one’s partner to say I love you (Ich liebe dicht) one cannot assume that the partner will be um….shall we say self-lubricated? Sexy fits really well before Italian, (as in sexy Italian) Frenchman, Greek, Israeli and of course Canadian but German? Not a common word pairing though I’ve seen some pretty hot german guys who could probably make me extra feucht. I want to be the spokesmodel for Billy Boy. I would wear a purple peignoir set and hold the box next to my face and sigh seductively “Ah Billy Boy. Sie sind zu meinem Vergnügen so aufmerksam.” ( Oh Billy Boy, you are so attentive to my pleasure) That seems like a german ad, doesn’t it?
I think I want to start a condom collection of condoms from around the globe, which I can then bequeath to Mac. If you’re in a foreign country – bring me back a quirky condom.
Yesterday I had lunch with Kris at Scott’s and had half a glass of wine in the middle of a weekday. I felt like one of the ladies who lunch – it was grand. Funny how in the midst of trying appointments and difficult circumstances that oasis of lunch with someone you love can be such a treat. My friend Andy told me that when she was sick with cancer, after every doctor’s appointment his mother would reward herself with some kind of treat – a lunch, a trinket, whatever. I like that idea.
Kris and her husband will no doubt be listing me as a dependent on their 08 tax return. She has done so much for me, it’s astonishing. I am no longer doing laundry because I can’t get the quarters in the machine so she and some of the other girls take my laundry when they drop off my weeks supply of food from Cecilia. You have never seen anyone fold like Kris can. I could put her folded laundry out as a decoration.
Kris is a paradox. On the one hand she has the whole hostess thing totally dialed in. She cooks gorgeous meals, bakes cookies for the baseball parties, volunteers, plans extravagant parties with perfect decorations. She served us fondue once and we actually had to go into a time machine she had built back to 1975 to eat it. At Christmas her house looks like a tree farm or Martha Stewart’s ranch house. She lives on the same block as her parents’ down what they call “the long hallway” and seems to always be hosting family brunches and other festivities. In short, the energy and industry that are required just to be her is exhausting. But there is another side to her.
It’s the woman who shows up at 10AM to help me paint my house (when I had a house to paint) with a giant can of bud…which she actually drinks! It’s the woman who followed the Dead and who is still in love with her college sweetheart. It’s the avid consumer of diet pepsi and mystery novels who is passionately opposed to the death penalty and smart enough to articulate an intelligent position in the face of those who would advocate for it. It’s the woman whose mix of youthful colloquialisms and mastery of the English language creates a style of madly poetic speech that is unmistakably Kris. Imagine a well-manicured, perfectly accessorized mom of a young child asking the kid “Dude, what is your saga?” before launching into a complex analysis of our fractured democracy. That’s her.
Recently I spent an obscene amount of money on tickets to see Flight of the Conchords. It was worth it. Mac and I both agreed that we wanted to marry that concert and have a long committed relationship with it. I was planning to add an equally obscene amount of money onto the deal to rent a limo to take us to the show since it sucks to wait for a cab and BART was too far away. Kris suggested we instead go with her son and his dad and offered to drive us all to the city to her husband’s office. Remembering my limo plans she showed up in a chauffer’s uniform and served champagne ( in glass flutes) and strawberries and non-dairy whip.
I can’t even list the ways that this woman has shown up for me, running interference on healthcare, legal issues, retirement, etc, offering to fix the flowers on my deck because she knows how much I love sitting out there and of course holding me while I heaved with sobs like a little girl, wrapping her motherly arms around me until I remembered that everything would be okay.
Tuesday, June 03, 2008
Monologue from a Dead Person
This is written from the point of view of a dead person. Don’t ask me why this came out, but it did so there you go.
Dead person: “Dead is the new alive” Now I know what you’re thinking. I was just being trendy. After all, more and more people seem to be doing it and I was always one to keep up with the current fashions. But this one is really cool. Trust me. And mark my words, it won’t be long before all of you start to follow my lead.
Now I’m not knocking life – life is good as the over priced t-shirts say. Have you noticed that t-shirts with ironic and acerbic statements cost half that of cute and or inspirational t-shirts. I may be dead, but I still like a bargain so I’d take a Bush Sucks t-shirt over the Life is Good one any day.
But I digress. Since you’re all assembled and probably feeling somewhat bad – I guess about being left behind – I wanted to tell you some things about life I really liked – back when living was “in.”
Dewy grass
Now this is something I remember from childhood. I think all the dewy grass was replaced by Starbucks and Bed, Bath and Beyond because I can’t seem to find any, but when I was young the dew would cling to the grass on a summer morning and I would lie in it and get all wet and look up at the clouds….which I think you still have since Barnes and Nobles hasn’t figured out how to annex the sky yet. At night as the grass got damp it was great to run and shout in it with your friends at the end of an endless day.
Hawaii
Go to Hawaii before you die. Since we don’t get to pick when you die, book a flight immediately and hope the plane doesn’t crash. Go to Napili Bay and swim with the sea turtles and take the road to Hana. Stay in a tree house or a yert.
The Marx Brothers
And other great comedy. I miss it all except Stephen Colbert who is so big that we all stop what we’re doing here in the afterlife and tune in at 8:30 every night. I miss having a belly though. I never realized how great it felt when your belly shook when you laugh. I must think of a great joke right now so you can feel your bellies while you laugh. A pedophile and a young child are walking through the forest. It’s dark and the child says to the pedophile “I’m scared.” To which the pedophile replies “You’re scared? How do you think I feel? I have to walk out of here alone.” If your belly isn’t shaking your head is, I bet.
Great Sex
I don’t miss mediocre sex or bad sex, just the great sex. There’s no gender up in heaven so it’s only this distinction that helps us figure out who was a man and who was a woman. The men even miss the disastrous sex.
Cheese
Can you believe there’s no food in heaven? It’s all down in hell – used to torture people. I remember loving cheese because it was something you ate just for fun and rarely if ever for nutrition.
Moments When Grief and Happiness Collide
I remember this one yoga class when I was sick – that is to say before I died. I couldn’t do most of the poses and my body kept cramping up in tremendous 30 second blasts of pain. I lay back on the mat and fought back the tears when I looked and saw two birds perched on the power line outside the window of the yoga studio. They were deep in conversation with one another, totally at home on this scary electric line, like angels sending me a message. “One day you won’t be able to watch these birds, but today you can” I said to myself and my heart flooded with joy. I miss that sloppy human feeling of grief and the tremendous relief when happiness barges in to save the day. I remember those birds.
You
I miss you.
Dead person: “Dead is the new alive” Now I know what you’re thinking. I was just being trendy. After all, more and more people seem to be doing it and I was always one to keep up with the current fashions. But this one is really cool. Trust me. And mark my words, it won’t be long before all of you start to follow my lead.
Now I’m not knocking life – life is good as the over priced t-shirts say. Have you noticed that t-shirts with ironic and acerbic statements cost half that of cute and or inspirational t-shirts. I may be dead, but I still like a bargain so I’d take a Bush Sucks t-shirt over the Life is Good one any day.
But I digress. Since you’re all assembled and probably feeling somewhat bad – I guess about being left behind – I wanted to tell you some things about life I really liked – back when living was “in.”
Dewy grass
Now this is something I remember from childhood. I think all the dewy grass was replaced by Starbucks and Bed, Bath and Beyond because I can’t seem to find any, but when I was young the dew would cling to the grass on a summer morning and I would lie in it and get all wet and look up at the clouds….which I think you still have since Barnes and Nobles hasn’t figured out how to annex the sky yet. At night as the grass got damp it was great to run and shout in it with your friends at the end of an endless day.
Hawaii
Go to Hawaii before you die. Since we don’t get to pick when you die, book a flight immediately and hope the plane doesn’t crash. Go to Napili Bay and swim with the sea turtles and take the road to Hana. Stay in a tree house or a yert.
The Marx Brothers
And other great comedy. I miss it all except Stephen Colbert who is so big that we all stop what we’re doing here in the afterlife and tune in at 8:30 every night. I miss having a belly though. I never realized how great it felt when your belly shook when you laugh. I must think of a great joke right now so you can feel your bellies while you laugh. A pedophile and a young child are walking through the forest. It’s dark and the child says to the pedophile “I’m scared.” To which the pedophile replies “You’re scared? How do you think I feel? I have to walk out of here alone.” If your belly isn’t shaking your head is, I bet.
Great Sex
I don’t miss mediocre sex or bad sex, just the great sex. There’s no gender up in heaven so it’s only this distinction that helps us figure out who was a man and who was a woman. The men even miss the disastrous sex.
Cheese
Can you believe there’s no food in heaven? It’s all down in hell – used to torture people. I remember loving cheese because it was something you ate just for fun and rarely if ever for nutrition.
Moments When Grief and Happiness Collide
I remember this one yoga class when I was sick – that is to say before I died. I couldn’t do most of the poses and my body kept cramping up in tremendous 30 second blasts of pain. I lay back on the mat and fought back the tears when I looked and saw two birds perched on the power line outside the window of the yoga studio. They were deep in conversation with one another, totally at home on this scary electric line, like angels sending me a message. “One day you won’t be able to watch these birds, but today you can” I said to myself and my heart flooded with joy. I miss that sloppy human feeling of grief and the tremendous relief when happiness barges in to save the day. I remember those birds.
You
I miss you.
Monday, June 02, 2008
Heroically Sportless Aromatic
So two more events are coming up. One is a fundraiser at BATS (Bay Area Theater Sports) on June 12 and the other a gig with my band at The Jazz School on June 14. (The answer is yes, I’ll be very tired. I also have recording and lithium trial business that week.) To find out about BATS’ fundraiser go to http://www.quiltmamas.com/dmc/ways_to_help.html. To buy tickets email the amazing Laura Derry at: batsfriendsofcarla@yahoo.com or call
(415) 759-1304. This is going to be a very funny and entertaining evening with some of the best improvisers around – period. Even if it weren’t a fundraiser I’d recommend it.
A brief digression from plugging: if you only know me from this blog you don’t know that I am bringing the hilarity to ALS – a sorely needed commodity. I’m pretty sure that if you held a summit with Stephen Hawking, Lou Gehrig, Shostokovich, Charles Mingus and David Niven, all of them together couldn’t come up with one ALS joke as funny as my friends and associates and I do on a regular basis. You can spell the word “laugh” out of the letters in amyotrophic lateral sclerosis (or Lou Gherig’s disease) and in fact if you mix up and use all the letters up you get “laugh or hoot my ass sillee - crises are topical, girl…. dss” or something even better than that if you’re smart.
If you just do " amyotrophic lateral sclerosis" you get “heroically sportless aromatic” which is fitting and just "Lou Gehrig’s disease" gets you “She is a sludgier ego.” Okay…
When I digress, I really digress. This is all by way of saying June 12 promises to be highly entertaining and big ups to Laura, Rebecca and Lisa for the legwork, the caring and the vision.
June 14 is a show at the Jazz School to launch the new cd. Info about that show can be found at:
http://www.jazzschool.com/html/events_concerts.html
http://www.quiltmamas.com/dmc/carlas_performances.html
Every singing gig has become sacred to me since I don’t know how quickly the voice, the energy, etc will go and how many gigs are left. Since I was 11 I had a ‘thing” for audiences but now the crush has blown up into an all out love affair. We’ll be doing songs from the cd as well as a new one ( or two if I can get it finished) that I wrote plus one or two from the upcoming cd which I’ll be working on all week prior to the gig. The amazing Kai Eckhardt will be stepping in for Jon Evans on bass and the rest of the band are the usual suspects – Mike Zilber on sax, John R. Burr on piano and David Rokeach on drums. All three of these guys are among the best on their instruments so it’s an honor to get to play with them.
If you’re in town I hope you can make one or both of these or tell your friends about the events.
In other news I checked off another bucket list adventure and I’m running out of things on the list. I still need to take something from a hotel minibar ( there was no minibar at the Vancouver Holiday Inn), Pacific Grove and the butterflies ( oct) Disneyland ( this summer) drive my miata in an abandoned area
(next week) and be reckless about love ( easier said than done). I also need to add to the list just incase there’s some unwritten cosmic law that once you’ve completed your list you die.
So here it is: 1) wheelchair athletics: skiing, whitewater rafting –something adrenaline inducing 2) go to the red light district in Amsterdam 3) go down a snowy slope on a toboggan 4) sleep under the stars out in the world not just on my deck 5) write a book or a screenplay or both 6) go to Vegas as someone else and stay in character the whole time – I want to go as a woman who wears skin tight purple pants and has decals on her really long finger nails. Her name is Dee and she’s from a suburb in Chicago since I like that accent. She likes roulette.
(415) 759-1304. This is going to be a very funny and entertaining evening with some of the best improvisers around – period. Even if it weren’t a fundraiser I’d recommend it.
A brief digression from plugging: if you only know me from this blog you don’t know that I am bringing the hilarity to ALS – a sorely needed commodity. I’m pretty sure that if you held a summit with Stephen Hawking, Lou Gehrig, Shostokovich, Charles Mingus and David Niven, all of them together couldn’t come up with one ALS joke as funny as my friends and associates and I do on a regular basis. You can spell the word “laugh” out of the letters in amyotrophic lateral sclerosis (or Lou Gherig’s disease) and in fact if you mix up and use all the letters up you get “laugh or hoot my ass sillee - crises are topical, girl…. dss” or something even better than that if you’re smart.
If you just do " amyotrophic lateral sclerosis" you get “heroically sportless aromatic” which is fitting and just "Lou Gehrig’s disease" gets you “She is a sludgier ego.” Okay…
When I digress, I really digress. This is all by way of saying June 12 promises to be highly entertaining and big ups to Laura, Rebecca and Lisa for the legwork, the caring and the vision.
June 14 is a show at the Jazz School to launch the new cd. Info about that show can be found at:
http://www.jazzschool.com/html/events_concerts.html
http://www.quiltmamas.com/dmc/carlas_performances.html
Every singing gig has become sacred to me since I don’t know how quickly the voice, the energy, etc will go and how many gigs are left. Since I was 11 I had a ‘thing” for audiences but now the crush has blown up into an all out love affair. We’ll be doing songs from the cd as well as a new one ( or two if I can get it finished) that I wrote plus one or two from the upcoming cd which I’ll be working on all week prior to the gig. The amazing Kai Eckhardt will be stepping in for Jon Evans on bass and the rest of the band are the usual suspects – Mike Zilber on sax, John R. Burr on piano and David Rokeach on drums. All three of these guys are among the best on their instruments so it’s an honor to get to play with them.
If you’re in town I hope you can make one or both of these or tell your friends about the events.
In other news I checked off another bucket list adventure and I’m running out of things on the list. I still need to take something from a hotel minibar ( there was no minibar at the Vancouver Holiday Inn), Pacific Grove and the butterflies ( oct) Disneyland ( this summer) drive my miata in an abandoned area
(next week) and be reckless about love ( easier said than done). I also need to add to the list just incase there’s some unwritten cosmic law that once you’ve completed your list you die.
So here it is: 1) wheelchair athletics: skiing, whitewater rafting –something adrenaline inducing 2) go to the red light district in Amsterdam 3) go down a snowy slope on a toboggan 4) sleep under the stars out in the world not just on my deck 5) write a book or a screenplay or both 6) go to Vegas as someone else and stay in character the whole time – I want to go as a woman who wears skin tight purple pants and has decals on her really long finger nails. Her name is Dee and she’s from a suburb in Chicago since I like that accent. She likes roulette.
Wednesday, May 28, 2008
The Four Bullshit Truths
I began my drug trial on May15 and tomorrow I go in to get my blood levels for lithium tested. It’s anybody’s guess to know how long before we know if the drug is helping slow down the progression of the illness. The hands keep weakening, the neck cramps every day. I don’t believe I will beat ALS. I’ve never had that kind of fighter instinct. At Sports Day in Kindergarten I came in dead last, slowing myself down even more because I was yelling to my best friend at the time “Good luck, Jonathan, I hope you win!” I never pushed my career because of that same lack of killer instinct …or maybe it’s a lack of entitlement. It makes no sense to me that I could beat an incurable disease. And yet, I’m an optimist. Is that weird or what?
My career and relationship dreams never came true. The end of my marriage did not break my heart but events since then most certainly have. My body is betraying me and even when I do what I’m told and move into a wheelchair early, I still get injured, I’m still sore and still shaky from my launch the other day. (By the way, it’s not the flying that’s dangerous, just the landing). I adore my son and face the reality of leaving him and wondering will he allow others to nurture his tender heart when I’m gone? How can I bear to leave him? And yet, I’m an optimist. Go figure.
All the things I mention are true. They are unavoidable. The first noble truth is that suffering is inevitable and on bad days I want the Buddha to have called them the Four Bullshit Truths. But mostly I notice how blue the sky is, how delicious laughter sounds, how great it feels to hold a warm cup of tea in my hands. Mostly, I grab people and hug them and tell them I love them when I have the impulse to do so. Mostly, I see miracles everywhere – in my son’s blogs and jokes, in the earnest joy of little kids, in the beautiful melodrama of teens and college students, in my dad’s tears, in my amazing friends and their support and in loving someone and being loved back.
I had a dream the other night. I was walking down the street with a dear friend and I was walking completely normally. I felt completely normal and healthy. It was a glorious sunny day. I turned to my friend and said “ I don’t know if I’m happy because it’s sunny or it’s sunny because I’m happy.” And my friend said “it’s the latter.” I woke up in the warm glow of love and contentment.
How do I have time to fight ALS when all around me the world invites me to joy?
My career and relationship dreams never came true. The end of my marriage did not break my heart but events since then most certainly have. My body is betraying me and even when I do what I’m told and move into a wheelchair early, I still get injured, I’m still sore and still shaky from my launch the other day. (By the way, it’s not the flying that’s dangerous, just the landing). I adore my son and face the reality of leaving him and wondering will he allow others to nurture his tender heart when I’m gone? How can I bear to leave him? And yet, I’m an optimist. Go figure.
All the things I mention are true. They are unavoidable. The first noble truth is that suffering is inevitable and on bad days I want the Buddha to have called them the Four Bullshit Truths. But mostly I notice how blue the sky is, how delicious laughter sounds, how great it feels to hold a warm cup of tea in my hands. Mostly, I grab people and hug them and tell them I love them when I have the impulse to do so. Mostly, I see miracles everywhere – in my son’s blogs and jokes, in the earnest joy of little kids, in the beautiful melodrama of teens and college students, in my dad’s tears, in my amazing friends and their support and in loving someone and being loved back.
I had a dream the other night. I was walking down the street with a dear friend and I was walking completely normally. I felt completely normal and healthy. It was a glorious sunny day. I turned to my friend and said “ I don’t know if I’m happy because it’s sunny or it’s sunny because I’m happy.” And my friend said “it’s the latter.” I woke up in the warm glow of love and contentment.
How do I have time to fight ALS when all around me the world invites me to joy?
Monday, May 26, 2008
You Were Expecting Maybe Randy Pausch?
This is the speech I gave at the year end banquet at my school. It was also my last banquet period. It's kinda raunchy at times but hey, that's me. I think the underlying message is still good.
Sunday, May 25, 2008
vancouver
I sat next to my father-in-law (he’ll always be my father-in-law) with my head rested in the crook of his arm, our arms around each other. What a funny pair – he slowly losing his amazing mind to Alzheimer’s, me quickly losing my young-for-my-age body to ALS. He came in and out of focus, sometimes making perfect sense, sometimes speaking some divine confused poetry. “I want to take you with me” he told me. To the afterlife, I wondered? We’re in a macabre race he and I, and that day I felt like I was winning. “I better let you go so you can eat” I said. “ I just did” he replied. “The food of love.”
I am still shaky from my first solo flight on the wheelchair – and I do mean flight. I was alone when it happened. The wheelchair hit a bump at warp speed and I flew 6 or so feet, landing on my knees. There was nothing to hold onto so I couldn’t get back up and had to wait for a construction worker to lift me. I was so shaken I didn’t even track if he was cute. I hurt – arms and legs both - but nothing is broken. I am however completely unable to use the left hand right now even for gross motor stuff. The fingers are jitterbugging and completely out of my control even with my brace on.
I worry about writing about this since just the other day I had to convince my dad that I needed to be independent. He and some of you other concerned citizens might read this and think “she shouldn’t be out on her own.” She should. She will. I would fall again for the chance to go find a restaurant, a card shop or a beach – as I tried to do in Robert’s Creek. No sidewalks there so I took the wheelchair along the side main drag of on my own. My father white knuckled it and apparently tried to get others to check on me, but ultimately let me go even if it meant me getting into trouble ( what did he think I’d do, take a flying leap out of the wheelchair? Oh wait….) I couldn’t make it to the beach
( too steep) but sometimes the reward is in the trying.
3 year old Annabel and 1.5 year old Atticus, my adored niece and nephew are the smart ones. They refused a ride on the chair – lap or no lap - but insisting on pushing me in it! I laughed until it hurt. It was so hilarious and a little heartbreaking to have these beauties behind me guiding my chair. The ultimate test in accepting help.
Don’t get me wrong. I accept help every day. I see the day when I need help all the time getting closer and closer. When someone does for me – from grabbing my arm to opening a door- I take in the care behind the gesture and I recognize that it’s a loving act to accept the kindness as well. I just cherish the things I can do on my own and I don’t want to let them go. If I fall down then okay, I fall down. We all fall down.
Still it is other people that matter in the end run and I’m grateful to have them around. I look back at images from my visit and I want to press them between wax paper to preserve them. Even still there were friends and relatives I wasn’t able to see ( such limited energy, have I) and wish they could have been part of my trip.
Here’s some moments from the folks I did see:
Annabel saying “Bravo boundaries Auntie Carla” or looking at a flower bed and saying “Look at this, I LOVE it!”
Snuggling on the sofa in between my brother and sister-in-law after crying because I can’t draw for Annabel anymore.
Weird man in the park remarking that you don’t often see a “hot redhead in a wheelchair.”
My brother walking up to me and putting his head on my shoulder.
My other brother telling us about his volunteer work for people in wheelchairs which entails, as far as I can tell, taking a quadriplegic to a strip club. I’m not kidding. That same brother crying in my arms in the White Spot parking lot.
Atticus throwing his ice cream down on the ground the way football players throw the ball after a touchdown or field goal or whatever it is they do, then grinning proudly or him intently singing “you” at the end of each phrase of Happy Birthday.
My parents leaving me alone to fall even though it goes against all their instincts. This is an act of love.
A dear friend calling from home to put me in touch with a friend of his who is going through his own health crucible. Listening to the message and thinking I might be able to help someone after all the help I’ve received.
Wheeling along the sea wall with my mother, looking out at the blue blue mountains and the sailboats in their slips and the Burrard St. Bridge. Remembering without regret that I used to ride this route on my bike every day to work. I’m still on wheels. Still traveling the same gorgeous path.
My friend Gordon referring to himself as a “tiling savant.”
My mom saying she’s proud of me.
Some lengthier scrapbook items:
My sister-in-law who has undergone that transformation that many women do when they have children. They become mother to the world. She was always a lover of people but now she is such a remarkable mother (they’re both great parents) and their children are so damned happy. She is much taller than me (I’m 5’8” to put that into perspective) so when she holds me, my head is against her chest and I feel very safe. “How am I supposed to get through this?” I ask rather rhetorically since of course there’s no choice. She coos in my ear “You’ll get through by being weak, you’ll get through by being strong. You’ll get through in love and you’ll get through all alone.” Then she kisses my forehead and says “wow, you smell the same” referring to my brother and I. It makes me happy to know I smell like him. Like me he is also funny but if I’m Edward G Robinson with a machine gun spraying jokes like so many wild bullets, he is an elite Israeli sniper, only taking the shot when he is assured of deadly precision. In other words he kills me every time.
My mother and I down at Granville Market. We walk by a theater where I had planned to try to do Wedding Singer Blues. I was about to get wistful when I see the marquee – fucking Tuesdays With Morrie!!! Based on the book about an old teacher with…you guessed it…ALS. That’s some funny shit. My mother suggested she take my picture underneath the poster, which is of course the only thing to be done on such an occasion. If I can figure out how to add the pic, it’ll follow this paragraph even though I don’t look like a “hot redhead in a wheelchair.”
Reunion. In my late teens I loved my best friend so much and she me, that we bemoaned the fact that we were attracted to men. We were madly in love except for the sex part and would consistently close down a restaurant, a bar, you name it. We had a heart-wrenching falling out 14 or 15 years ago but this trip we picked up where we left off – closing a restaurant, spending the day and night walking, wheeling and talking about the real stuff, crying and loving each other. She helped me take my first wheelchair bus adventure and my first wheelchair cab ride. It’s a miracle. After well over a decade of not being friends, I sat across from her and observed how the love gushed out from me and thought “She must immediately meet the DMC girls.” She quizzed me on them – asking for a profile of each of them. She looks the same as she did in the 80s – a couple of crow’s feet that only deepen her great beauty. I am so very very grateful to have her back in my life.
Talking for an hour and a half with Mac on the phone about Robert Byrd, the large number of left-handed presidents and Ted Kennedy’s brain tumor. Missing him. Annabel told her parents at the airport “We’re back to our 4 family now.” I am anxious to return to my 2 family. We have a lot of catching up to do.
I read what I’ve already written and it really feels like unfiltered journal material rather than blog material, but here’s the thing – these snapshots are the important moments. When I have a bad physical day or trauma like the wheelchair launch, I feel very close to the notion of my own mortality and I love this world and its’ inhabitants with a teeth clenching zeal that I see in my niece. I want to hold tight, fiercely to all of it. To all of you. These are, to be sure, just moments that bring great meaning to me and those who were there, but you all have your own moments like that too. I hope you can love and honor them now, even the ones that hurt.
That’s the perk of this disease – I get to be preachy.
I am still shaky from my first solo flight on the wheelchair – and I do mean flight. I was alone when it happened. The wheelchair hit a bump at warp speed and I flew 6 or so feet, landing on my knees. There was nothing to hold onto so I couldn’t get back up and had to wait for a construction worker to lift me. I was so shaken I didn’t even track if he was cute. I hurt – arms and legs both - but nothing is broken. I am however completely unable to use the left hand right now even for gross motor stuff. The fingers are jitterbugging and completely out of my control even with my brace on.
I worry about writing about this since just the other day I had to convince my dad that I needed to be independent. He and some of you other concerned citizens might read this and think “she shouldn’t be out on her own.” She should. She will. I would fall again for the chance to go find a restaurant, a card shop or a beach – as I tried to do in Robert’s Creek. No sidewalks there so I took the wheelchair along the side main drag of on my own. My father white knuckled it and apparently tried to get others to check on me, but ultimately let me go even if it meant me getting into trouble ( what did he think I’d do, take a flying leap out of the wheelchair? Oh wait….) I couldn’t make it to the beach
( too steep) but sometimes the reward is in the trying.
3 year old Annabel and 1.5 year old Atticus, my adored niece and nephew are the smart ones. They refused a ride on the chair – lap or no lap - but insisting on pushing me in it! I laughed until it hurt. It was so hilarious and a little heartbreaking to have these beauties behind me guiding my chair. The ultimate test in accepting help.
Don’t get me wrong. I accept help every day. I see the day when I need help all the time getting closer and closer. When someone does for me – from grabbing my arm to opening a door- I take in the care behind the gesture and I recognize that it’s a loving act to accept the kindness as well. I just cherish the things I can do on my own and I don’t want to let them go. If I fall down then okay, I fall down. We all fall down.
Still it is other people that matter in the end run and I’m grateful to have them around. I look back at images from my visit and I want to press them between wax paper to preserve them. Even still there were friends and relatives I wasn’t able to see ( such limited energy, have I) and wish they could have been part of my trip.
Here’s some moments from the folks I did see:
Annabel saying “Bravo boundaries Auntie Carla” or looking at a flower bed and saying “Look at this, I LOVE it!”
Snuggling on the sofa in between my brother and sister-in-law after crying because I can’t draw for Annabel anymore.
Weird man in the park remarking that you don’t often see a “hot redhead in a wheelchair.”
My brother walking up to me and putting his head on my shoulder.
My other brother telling us about his volunteer work for people in wheelchairs which entails, as far as I can tell, taking a quadriplegic to a strip club. I’m not kidding. That same brother crying in my arms in the White Spot parking lot.
Atticus throwing his ice cream down on the ground the way football players throw the ball after a touchdown or field goal or whatever it is they do, then grinning proudly or him intently singing “you” at the end of each phrase of Happy Birthday.
My parents leaving me alone to fall even though it goes against all their instincts. This is an act of love.
A dear friend calling from home to put me in touch with a friend of his who is going through his own health crucible. Listening to the message and thinking I might be able to help someone after all the help I’ve received.
Wheeling along the sea wall with my mother, looking out at the blue blue mountains and the sailboats in their slips and the Burrard St. Bridge. Remembering without regret that I used to ride this route on my bike every day to work. I’m still on wheels. Still traveling the same gorgeous path.
My friend Gordon referring to himself as a “tiling savant.”
My mom saying she’s proud of me.
Some lengthier scrapbook items:
My sister-in-law who has undergone that transformation that many women do when they have children. They become mother to the world. She was always a lover of people but now she is such a remarkable mother (they’re both great parents) and their children are so damned happy. She is much taller than me (I’m 5’8” to put that into perspective) so when she holds me, my head is against her chest and I feel very safe. “How am I supposed to get through this?” I ask rather rhetorically since of course there’s no choice. She coos in my ear “You’ll get through by being weak, you’ll get through by being strong. You’ll get through in love and you’ll get through all alone.” Then she kisses my forehead and says “wow, you smell the same” referring to my brother and I. It makes me happy to know I smell like him. Like me he is also funny but if I’m Edward G Robinson with a machine gun spraying jokes like so many wild bullets, he is an elite Israeli sniper, only taking the shot when he is assured of deadly precision. In other words he kills me every time.
My mother and I down at Granville Market. We walk by a theater where I had planned to try to do Wedding Singer Blues. I was about to get wistful when I see the marquee – fucking Tuesdays With Morrie!!! Based on the book about an old teacher with…you guessed it…ALS. That’s some funny shit. My mother suggested she take my picture underneath the poster, which is of course the only thing to be done on such an occasion. If I can figure out how to add the pic, it’ll follow this paragraph even though I don’t look like a “hot redhead in a wheelchair.”
Reunion. In my late teens I loved my best friend so much and she me, that we bemoaned the fact that we were attracted to men. We were madly in love except for the sex part and would consistently close down a restaurant, a bar, you name it. We had a heart-wrenching falling out 14 or 15 years ago but this trip we picked up where we left off – closing a restaurant, spending the day and night walking, wheeling and talking about the real stuff, crying and loving each other. She helped me take my first wheelchair bus adventure and my first wheelchair cab ride. It’s a miracle. After well over a decade of not being friends, I sat across from her and observed how the love gushed out from me and thought “She must immediately meet the DMC girls.” She quizzed me on them – asking for a profile of each of them. She looks the same as she did in the 80s – a couple of crow’s feet that only deepen her great beauty. I am so very very grateful to have her back in my life.
Talking for an hour and a half with Mac on the phone about Robert Byrd, the large number of left-handed presidents and Ted Kennedy’s brain tumor. Missing him. Annabel told her parents at the airport “We’re back to our 4 family now.” I am anxious to return to my 2 family. We have a lot of catching up to do.
I read what I’ve already written and it really feels like unfiltered journal material rather than blog material, but here’s the thing – these snapshots are the important moments. When I have a bad physical day or trauma like the wheelchair launch, I feel very close to the notion of my own mortality and I love this world and its’ inhabitants with a teeth clenching zeal that I see in my niece. I want to hold tight, fiercely to all of it. To all of you. These are, to be sure, just moments that bring great meaning to me and those who were there, but you all have your own moments like that too. I hope you can love and honor them now, even the ones that hurt.
That’s the perk of this disease – I get to be preachy.
Monday, May 19, 2008
Partici-blog 3 - because your comments matter!
Here’s the latest idea for a partici-blog ( though not to late to write comments on the first two. Just hit comments at the bottom of this blog and write your list.
Things I never took for granted
1) the northern view of Vancouver on a sunny day – the way the sky and mountains were impossibly blue. For 45 years it’s taken my breath away.
2) Maclen Jacob Zilber – enough said
3) Singing – I loved it even when it was hard
4) The honor of performing in front of an audience
5) Dark chocolate
6) Candlelight – sitting alone or with someone listening to music or dancing
7) The beach on a warm night
8) Peets
9) Kindness of friends (whether I told them or not)
10) My Dad being there whenever I needed him, no questions asked
11) Aretha Franklin, Gladys Knight, James Taylor, Joni Mitchell
12) The BC Ferry – standing on the deck looking at the blanket of evergreens
13) Practical jokes
14) Ocean kayaking at Robert’s Creek
15) Breast feeding
16) Walking on the street in New York City
Things I did take for granted but wished I hadn’t
1) using my body – moving, walking, dancing, yoga
2) simple activities - turning keys, lighting matches, cooking food
3) red hair
4) alcohol
5) attracting the opposite sex
6) down time
7) having the time and funds to travel
8) writing, typing, communicating in any way
9) breathing
10) eating
11) walking dogs
12) dawn breaking
Okay, now you.
Things I never took for granted
1) the northern view of Vancouver on a sunny day – the way the sky and mountains were impossibly blue. For 45 years it’s taken my breath away.
2) Maclen Jacob Zilber – enough said
3) Singing – I loved it even when it was hard
4) The honor of performing in front of an audience
5) Dark chocolate
6) Candlelight – sitting alone or with someone listening to music or dancing
7) The beach on a warm night
8) Peets
9) Kindness of friends (whether I told them or not)
10) My Dad being there whenever I needed him, no questions asked
11) Aretha Franklin, Gladys Knight, James Taylor, Joni Mitchell
12) The BC Ferry – standing on the deck looking at the blanket of evergreens
13) Practical jokes
14) Ocean kayaking at Robert’s Creek
15) Breast feeding
16) Walking on the street in New York City
Things I did take for granted but wished I hadn’t
1) using my body – moving, walking, dancing, yoga
2) simple activities - turning keys, lighting matches, cooking food
3) red hair
4) alcohol
5) attracting the opposite sex
6) down time
7) having the time and funds to travel
8) writing, typing, communicating in any way
9) breathing
10) eating
11) walking dogs
12) dawn breaking
Okay, now you.
Sunday, May 18, 2008
love- the renewable resource
Remember hot summer nights when your parents would let you sleep outside? Pitching a tent was cool but oh so much better with nothing between you and the canopy of stars
(that was before light pollution). Why do we stop doing that except on camping trips? As an adult, I remember one night on a Brooklyn rooftop but that’s it.
I slept on my deck during our last little hot spell. I looked out at the Berkeley Hills and without my contact lenses I could imagine the lights were stars. It was a challenge to be sure to get up and down from the ground to go the bathroom but oh, so worth it. If I had had more than one loaner fan I probably wouldn’t have done it and I would have missed out.
It reminded me of a scene from my friend Kim’s play – I think it was Tattle Tale. All the other girls at the slumber party are running around in their pjs on the street but Kim doesn’t want to get in trouble so she sits in the tent listening to the sounds of the others’ joyful laughter. I’ve been inside that tent too much in my life. Now I want to run wild on the street and damn the consequences. I’m not saying sleeping on the deck is running wild but it’s a start.
We had our annual Drama Banquet on Friday night. My last. The kids tied pieces of muslin around my waist fanning out like the points on a clock. They held me up so I could dance and when I would almost fall they’d pull the muslin the other direction. Mac picked my all time favorite dancing tune and I danced. Magic! You have no idea what a joy it is to dance with abandon when you thought you’d already said goodbye to that part of your life. Later, I got to slow dance with not one cute guy ( a la my bucket list) but a line up of cute guys and one hot blond girl. Each dance had it’s own particular flavor of love and I basked in it all. I don’t even know if they knew they were making my dreams come true. Mac and I stayed up that night to the wee hours talking – tough topics but necessary and rich.
I would rather lose sleep in a painful conversation with him than have 8 uninterrupted hours when he’s out of the house.
Later Mac was too sick to go to his Model UN Conference so my friends rallied to take care of him so I wouldn’t miss my plane to Canada. They also went looking at apartments for me in case my other housing options fall through, emailing me a slide show of the apt and the surrounding coffee shops, raw juice bars, etc. Many of the pics include Edith or Kris waving into Wendy’s camera, looking enthused. Wow. If you read this blog regularly, I needn’t tell you that my friends are an elite squad of super heroes that make the Justice League look like pussies.
I’m both prodded into adventures and covered in a blanket of protection – all on account of love. I feel useful when I can give love and gratefully vulnerable when love is offered to me
Love shape shifts. It blindsides. It comes at you from different angles. You think it’s one thing, then it turns up as something else. It’s tenacious. It’s unpredictable and there appears to be an endless source of it.
Love is bamboo.
(that was before light pollution). Why do we stop doing that except on camping trips? As an adult, I remember one night on a Brooklyn rooftop but that’s it.
I slept on my deck during our last little hot spell. I looked out at the Berkeley Hills and without my contact lenses I could imagine the lights were stars. It was a challenge to be sure to get up and down from the ground to go the bathroom but oh, so worth it. If I had had more than one loaner fan I probably wouldn’t have done it and I would have missed out.
It reminded me of a scene from my friend Kim’s play – I think it was Tattle Tale. All the other girls at the slumber party are running around in their pjs on the street but Kim doesn’t want to get in trouble so she sits in the tent listening to the sounds of the others’ joyful laughter. I’ve been inside that tent too much in my life. Now I want to run wild on the street and damn the consequences. I’m not saying sleeping on the deck is running wild but it’s a start.
We had our annual Drama Banquet on Friday night. My last. The kids tied pieces of muslin around my waist fanning out like the points on a clock. They held me up so I could dance and when I would almost fall they’d pull the muslin the other direction. Mac picked my all time favorite dancing tune and I danced. Magic! You have no idea what a joy it is to dance with abandon when you thought you’d already said goodbye to that part of your life. Later, I got to slow dance with not one cute guy ( a la my bucket list) but a line up of cute guys and one hot blond girl. Each dance had it’s own particular flavor of love and I basked in it all. I don’t even know if they knew they were making my dreams come true. Mac and I stayed up that night to the wee hours talking – tough topics but necessary and rich.
I would rather lose sleep in a painful conversation with him than have 8 uninterrupted hours when he’s out of the house.
Later Mac was too sick to go to his Model UN Conference so my friends rallied to take care of him so I wouldn’t miss my plane to Canada. They also went looking at apartments for me in case my other housing options fall through, emailing me a slide show of the apt and the surrounding coffee shops, raw juice bars, etc. Many of the pics include Edith or Kris waving into Wendy’s camera, looking enthused. Wow. If you read this blog regularly, I needn’t tell you that my friends are an elite squad of super heroes that make the Justice League look like pussies.
I’m both prodded into adventures and covered in a blanket of protection – all on account of love. I feel useful when I can give love and gratefully vulnerable when love is offered to me
Love shape shifts. It blindsides. It comes at you from different angles. You think it’s one thing, then it turns up as something else. It’s tenacious. It’s unpredictable and there appears to be an endless source of it.
Love is bamboo.
Wednesday, May 14, 2008
captain oh my captain
“Don’t it always seem to go, that you don’t know what you’ve got til it’s gone?”
Joni Mitchell
How many times did I think “if only I didn’t have this job, I would have more time for my work?” or “this job is going to kill me” or “it’s impossible to draw boundaries with this job”? I was right on all three counts probably. This semester I co-wrote a full-length musical, wrote several poems and songs, did several gigs ( okay some of them were benefits) and started a screenplay. Plus the blogs. I imagine that’s only going to get easier now that I’ve taught my final class.
I’ve taught my final class. Why can’t I type that without crying? Class ends at 6. Nobody left. “Go away now” I said. “I don’t want to cry.” “But we want to watch you ride off into the sunset on the wheelchair with your red hair flowing” said one of the girls – a poetic nymph who wrote to me that the galaxy had decided to throw a big party and make me the piñata. “I will cry when I pick up the loot” she continued, “ only because the stardust inside is so beautifully, blindingly, brilliant.”
All of their words and smiles are little treasures that expand like sea monkeys when my tears fall on them. Later that night I would come home to check my myspace and another student, a young man, had written a full-length poem which I will immediately put up on the wall with some of my favorites. The line he chose for the book the kids gave me was “loving you is simple, taking in your smile like a child gazing through the night at a mountain, never bothering to wonder what lies beyond.”
They humble me, surprise me, entertain me and occasionally shock me. I always used to accuse them of sucking all my chi but now I realize I was the vampire feasting on their youth and joy to stay eternally young.
We all sat there a little longer, casually chatting. Outside the sun was shining, dinner was waiting, some of them had an improv show to attend or to work on but we just sat. One burgeoning talent played with my hair as she did on the last night of the show. Several of them followed me out to the car and helped Lisa load up the wheelchair ( which fits in the back of a 2 door Honda Civic!!! ) It was unremarkable, quiet and sweet. No tears, just the sunshine and smiles and long luxurious hugs.
Then I drove away from 14 years of my life.
Joni Mitchell
How many times did I think “if only I didn’t have this job, I would have more time for my work?” or “this job is going to kill me” or “it’s impossible to draw boundaries with this job”? I was right on all three counts probably. This semester I co-wrote a full-length musical, wrote several poems and songs, did several gigs ( okay some of them were benefits) and started a screenplay. Plus the blogs. I imagine that’s only going to get easier now that I’ve taught my final class.
I’ve taught my final class. Why can’t I type that without crying? Class ends at 6. Nobody left. “Go away now” I said. “I don’t want to cry.” “But we want to watch you ride off into the sunset on the wheelchair with your red hair flowing” said one of the girls – a poetic nymph who wrote to me that the galaxy had decided to throw a big party and make me the piñata. “I will cry when I pick up the loot” she continued, “ only because the stardust inside is so beautifully, blindingly, brilliant.”
All of their words and smiles are little treasures that expand like sea monkeys when my tears fall on them. Later that night I would come home to check my myspace and another student, a young man, had written a full-length poem which I will immediately put up on the wall with some of my favorites. The line he chose for the book the kids gave me was “loving you is simple, taking in your smile like a child gazing through the night at a mountain, never bothering to wonder what lies beyond.”
They humble me, surprise me, entertain me and occasionally shock me. I always used to accuse them of sucking all my chi but now I realize I was the vampire feasting on their youth and joy to stay eternally young.
We all sat there a little longer, casually chatting. Outside the sun was shining, dinner was waiting, some of them had an improv show to attend or to work on but we just sat. One burgeoning talent played with my hair as she did on the last night of the show. Several of them followed me out to the car and helped Lisa load up the wheelchair ( which fits in the back of a 2 door Honda Civic!!! ) It was unremarkable, quiet and sweet. No tears, just the sunshine and smiles and long luxurious hugs.
Then I drove away from 14 years of my life.
Tuesday, May 13, 2008
The Wendy Lady
It’s not the web savvy, the inventive updates on the DMC site ( linked here as Driving Miss Craisy) or the fact that she buys the voice recognition software and offers to install it plus more RAM on my computer. It’s not the delicious wheat-free, dairy-free baked goods that keep appearing – green, not green – all scrumptious. It’s not all the sewing – making clasps into magnets, rendering un-wearable clothes easy to navigate. It’s not the rides, so many rides, that often come with a snack or the fact that she’s accompanying me to Greece.
It’s the way she sings and dances her heart out to Earth, Wind and Fire, Ohio Players and Prince. It’s her inner “music yenta” that makes her call and insist I buy tickets to Stevie Wonder, Flight of the Conchords, Herbie Hancock, James Taylor. It’s the way she cried before I had a clue I was really sick and pleaded with me to go to the doctor. Then called again the next AM to nag. It’s how she looks like a hobbit bride when she stands at the front door at Mt. Herman and how she’s raised these two amazing girls I love. How her kindness and unforced generosity has leaked into them so that her daughter offers to move into her sister’s room so I can move in. How that daughter phones her mom who is tending to my broken heart and says “I’m making dinner – tell Carla there’s enough for her to join us.” She’s 13 by the way.
It’s how she holds my secrets, urges me on to write ( always has), comes up with solutions to problems I didn’t even know I had. It’s watching her run through a sprinkler in a polka dot bubble dress, offer to bake me special brownies, and it’s her urging me to be more cautious, use the wheelchair more. “I just want to wrap you in bubble wrap and protect you” she says, then after hanging up the phone realizing I’m too stubborn to pay her mind, it’s how her solution is to sew a bubble wrap dress with purple trim. It’s how I know she’s teary right now as she reads this.
But mostly I think, it’s her dancing.
It’s the way she sings and dances her heart out to Earth, Wind and Fire, Ohio Players and Prince. It’s her inner “music yenta” that makes her call and insist I buy tickets to Stevie Wonder, Flight of the Conchords, Herbie Hancock, James Taylor. It’s the way she cried before I had a clue I was really sick and pleaded with me to go to the doctor. Then called again the next AM to nag. It’s how she looks like a hobbit bride when she stands at the front door at Mt. Herman and how she’s raised these two amazing girls I love. How her kindness and unforced generosity has leaked into them so that her daughter offers to move into her sister’s room so I can move in. How that daughter phones her mom who is tending to my broken heart and says “I’m making dinner – tell Carla there’s enough for her to join us.” She’s 13 by the way.
It’s how she holds my secrets, urges me on to write ( always has), comes up with solutions to problems I didn’t even know I had. It’s watching her run through a sprinkler in a polka dot bubble dress, offer to bake me special brownies, and it’s her urging me to be more cautious, use the wheelchair more. “I just want to wrap you in bubble wrap and protect you” she says, then after hanging up the phone realizing I’m too stubborn to pay her mind, it’s how her solution is to sew a bubble wrap dress with purple trim. It’s how I know she’s teary right now as she reads this.
But mostly I think, it’s her dancing.
Sunday, May 11, 2008
mother's day
It’s Mother’s Day, 6:27 pm. I have just gone back and forth – do I blog or watch a stupid movie? I blog. The week has been overwhelming – it occurs to me it has been like a play that only I would write: big fun, belly laughs, boundary crossing, deep unbearable sadness and music – all of it coming at too quick of intervals to process it properly.
Last night Mac told me there would be no Mother’s Day this year. He can’t handle my reaction and keep it together to do what he needs to do. I am so proud to have raised a son that can tell me that. We stayed up until 1am talking about all the things that hurt and haunt him. Oddly enough, that was present enough for me. He is the most beautiful tender soul. When I listened to one of the songs I wrote for him today I had to leave the theater so as not to distract the cast with my crying. I love him so much it hurts.
I watched our show one last time and they knocked it out of the park. I was proud of all of us and more than a little sad that I won’t be doing this anymore. I’m really good at it. At the end of the show the kids brought me up for thanks and gave me gifts – not unusual for a play but under the circumstances very huge for me. Lots of tears – mine and my students – some of us sobbing in each others’ arms. I was moved beyond words. They gave me a spa gift certificate ( yay!!) a framed, signed poster of the show and a little book of inscriptions. The inscriptions were beautiful, heartfelt and profound and the comments on the frame were vile and unrepeatable. That is why I adore them. They are an alarming mishmash of angel and devil, irreverent, sacrilegious and holy.
Well, I’ve run out of things to say – probably stupid movie was a better plan.
So this week – final improv class, lithium baseline appointment and the year end Drama Banquet. Then it’s on to Vancouver and my inevitable collapse once I get to my Dad’s place.
What a lovely ride.
Last night Mac told me there would be no Mother’s Day this year. He can’t handle my reaction and keep it together to do what he needs to do. I am so proud to have raised a son that can tell me that. We stayed up until 1am talking about all the things that hurt and haunt him. Oddly enough, that was present enough for me. He is the most beautiful tender soul. When I listened to one of the songs I wrote for him today I had to leave the theater so as not to distract the cast with my crying. I love him so much it hurts.
I watched our show one last time and they knocked it out of the park. I was proud of all of us and more than a little sad that I won’t be doing this anymore. I’m really good at it. At the end of the show the kids brought me up for thanks and gave me gifts – not unusual for a play but under the circumstances very huge for me. Lots of tears – mine and my students – some of us sobbing in each others’ arms. I was moved beyond words. They gave me a spa gift certificate ( yay!!) a framed, signed poster of the show and a little book of inscriptions. The inscriptions were beautiful, heartfelt and profound and the comments on the frame were vile and unrepeatable. That is why I adore them. They are an alarming mishmash of angel and devil, irreverent, sacrilegious and holy.
Well, I’ve run out of things to say – probably stupid movie was a better plan.
So this week – final improv class, lithium baseline appointment and the year end Drama Banquet. Then it’s on to Vancouver and my inevitable collapse once I get to my Dad’s place.
What a lovely ride.
Friday, May 09, 2008
yoshi's
At the Yoshi’s benefit, I was approached by J., a beautiful young woman who had studied with me last year. At that time she was undergoing radiation treatment for cancer. So anyway, on Tuesday, she brought me a journal, which she had inscribed along with a heartfelt poem she had written. I was preparing to go up on stage in 10 minutes when she hit me with the news: the cancer has spread all over her body. I looked at this gorgeous black-eyed beauty, so quietly determined, hardworking and subtly funny and the waterworks started. When I watched the movie Young at Heart I was struck by how sad I felt when one of the octogenarians would die . Natural order of things my ass. The loss of a bright soul is hard no matter the age. Then this. It DOES smart worse when it’s someone so young and full of promise and possibility. I don’t know how I got on stage at all. All I could do was cry and stroke her hair.
I had a thought in the middle of the night, which was “I’m going to phone J. and see if we can’t think of a bucket list adventure we have in common and go do it pronto.” I think I’ll do that and report back here.
So the night at Yoshi’s was a complicated mix. On stage I had a ball. If I could live on stage I think I’d be happy almost all of the time. I have the most awesome band and my dear friend Andy did a couple of duets with me that rocked. Mac as usual brought the house down with his singular wit and rapping. It was his birthday, which had to suck for him. All the attention on me once again.
Off stage in the audience it was a delight – watching the embarrassing wealth of talent up on stage, laughing, grooving, drinking it all in. Talking to some of the musicians, especially the guys in my band was awesome and my amazing friend Kaila was a radiant light on stage and the rock of Gibralter off stage. I don’t know how she makes that transition so seamlessly.
The day before had been rough – 4 hours at the ALS clinic dealing with heavy stuff, worrying about where the hell I’m going to live which has become a more urgent concern with the recent health developments and just dealing with the general fatigue and challenges of this disease. I thought at about 6pm that I’d have to not go on but somehow it happened and I pulled it off. Talking with Stephanie (treasured friend and wife of the aforementioned Andy) I came to the conclusion I pulled it off because I was bathed in the beams of love light from the audience which included the Driving Miss Craisy crew, College of Marin and Los Medanos College students and faculty, Albany school people, yoga people, theater friends, musician friends and even a large contingent of the folks from the Forbes Norris ALS clinic!!
My ex organized all the musicians and ran the event and Christina, Edith and Kaila among others did an amazing publicity effort. Thanks to all of them and the participating musicians we netted almost 6000 bucks not to mention cd sales for another 500 bucks! Stephanie and Andy are going to help me get the cd on Itunes and it will be available on the website in a week or so by the way.
SO the performers: David Allen Moss, actor, friend and funny man presided over the event and Mike Zilber ( my ex) pulled together a first class big band for me to sing with. There are too many of them to mention in this blog but they were something else. My dear band from the new cd and the upcoming cd were there being their brilliant supportive selves ( Jon evans, John R. Burr and David Rokeach) Roy Zimmerman – greatest living folk political satirist was there bringing down the house (check him out on youtube and at royzimmerman.com), Kaila Flexer and Gari Hegedus, aka Teslim played a couple of magical and haunting numbers from their brand new remarkable cd, (kailaflexer.com) Mike (michaelzilber.com) brought two bands to the stage – his tribute to wayne shorter band and his Billy Collins Project which has mighty writing in it plus the vocal gifts of Andy Kirshner (andykirshner.com). One of the songs made me ball my eyes out during sound check and made Andy cry on stage during the show was a musical rendition of On Turning Ten by Billy Collins. The musical accompaniment for the song is perfect and Andy interprets it beautifully. It’s a poem which made Mac cry when I first read it to him when he was ten and he said “that’s how I feel sometimes.” It goes like this:
The whole idea of it makes me feel
like I'm coming down with something,
something worse than any stomach ache
or the headaches I get from reading in bad light--
a kind of measles of the spirit,
a mumps of the psyche,
a disfiguring chicken pox of the soul.
You tell me it is too early to be looking back,
but that is because you have forgotten
the perfect simplicity of being one
and the beautiful complexity introduced by two.
But I can lie on my bed and remember every digit.
At four I was an Arabian wizard.
I could make myself invisible
by drinking a glass of milk a certain way.
At seven I was a soldier, at nine a prince.
But now I am mostly at the window
watching the late afternoon light.
Back then it never fell so solemnly
against the side of my tree house,
and my bicycle never leaned against the garage
as it does today,
all the dark blue speed drained out of it.
This is the beginning of sadness, I say to myself,
as I walk through the universe in my sneakers.
It is time to say good-bye to my imaginary friends,
time to turn the first big number.
It seems only yesterday I used to believe
there was nothing under my skin but light.
If you cut me I could shine.
But now when I fall upon the sidewalks of life,
I skin my knees. I bleed.
I love a funny poem with a lethal sucker punch.
Our life is so fragile and so brief and we really are only sustained, held up, buoyed, etc by one another. I have felt that so acutely lately. Yesterday Wendy presented me with a dress she’d made for me out of bubble wrap – a gesture to indicate her desire to protect me from all of the falling down. It’s a divine dress (which makes me feel like a POP star!) but in reality, it is all of you – from the nurse I’ve never met who commented on the blog, to my parent’s high school friends, to former colleagues writing in, to my intimate circle, to my family and all of the aforementioned groups who supported me at Yoshi’s – all of you are bubble wrap for me and for each other.
Here’s how it works: I can’t possibly thank you all in a way that does justice to your efforts – I already hear the Academy Awards band playing me off the stage now. Just know how much I love and appreciate all of you – including those I have yet to meet.
I had a thought in the middle of the night, which was “I’m going to phone J. and see if we can’t think of a bucket list adventure we have in common and go do it pronto.” I think I’ll do that and report back here.
So the night at Yoshi’s was a complicated mix. On stage I had a ball. If I could live on stage I think I’d be happy almost all of the time. I have the most awesome band and my dear friend Andy did a couple of duets with me that rocked. Mac as usual brought the house down with his singular wit and rapping. It was his birthday, which had to suck for him. All the attention on me once again.
Off stage in the audience it was a delight – watching the embarrassing wealth of talent up on stage, laughing, grooving, drinking it all in. Talking to some of the musicians, especially the guys in my band was awesome and my amazing friend Kaila was a radiant light on stage and the rock of Gibralter off stage. I don’t know how she makes that transition so seamlessly.
The day before had been rough – 4 hours at the ALS clinic dealing with heavy stuff, worrying about where the hell I’m going to live which has become a more urgent concern with the recent health developments and just dealing with the general fatigue and challenges of this disease. I thought at about 6pm that I’d have to not go on but somehow it happened and I pulled it off. Talking with Stephanie (treasured friend and wife of the aforementioned Andy) I came to the conclusion I pulled it off because I was bathed in the beams of love light from the audience which included the Driving Miss Craisy crew, College of Marin and Los Medanos College students and faculty, Albany school people, yoga people, theater friends, musician friends and even a large contingent of the folks from the Forbes Norris ALS clinic!!
My ex organized all the musicians and ran the event and Christina, Edith and Kaila among others did an amazing publicity effort. Thanks to all of them and the participating musicians we netted almost 6000 bucks not to mention cd sales for another 500 bucks! Stephanie and Andy are going to help me get the cd on Itunes and it will be available on the website in a week or so by the way.
SO the performers: David Allen Moss, actor, friend and funny man presided over the event and Mike Zilber ( my ex) pulled together a first class big band for me to sing with. There are too many of them to mention in this blog but they were something else. My dear band from the new cd and the upcoming cd were there being their brilliant supportive selves ( Jon evans, John R. Burr and David Rokeach) Roy Zimmerman – greatest living folk political satirist was there bringing down the house (check him out on youtube and at royzimmerman.com), Kaila Flexer and Gari Hegedus, aka Teslim played a couple of magical and haunting numbers from their brand new remarkable cd, (kailaflexer.com) Mike (michaelzilber.com) brought two bands to the stage – his tribute to wayne shorter band and his Billy Collins Project which has mighty writing in it plus the vocal gifts of Andy Kirshner (andykirshner.com). One of the songs made me ball my eyes out during sound check and made Andy cry on stage during the show was a musical rendition of On Turning Ten by Billy Collins. The musical accompaniment for the song is perfect and Andy interprets it beautifully. It’s a poem which made Mac cry when I first read it to him when he was ten and he said “that’s how I feel sometimes.” It goes like this:
The whole idea of it makes me feel
like I'm coming down with something,
something worse than any stomach ache
or the headaches I get from reading in bad light--
a kind of measles of the spirit,
a mumps of the psyche,
a disfiguring chicken pox of the soul.
You tell me it is too early to be looking back,
but that is because you have forgotten
the perfect simplicity of being one
and the beautiful complexity introduced by two.
But I can lie on my bed and remember every digit.
At four I was an Arabian wizard.
I could make myself invisible
by drinking a glass of milk a certain way.
At seven I was a soldier, at nine a prince.
But now I am mostly at the window
watching the late afternoon light.
Back then it never fell so solemnly
against the side of my tree house,
and my bicycle never leaned against the garage
as it does today,
all the dark blue speed drained out of it.
This is the beginning of sadness, I say to myself,
as I walk through the universe in my sneakers.
It is time to say good-bye to my imaginary friends,
time to turn the first big number.
It seems only yesterday I used to believe
there was nothing under my skin but light.
If you cut me I could shine.
But now when I fall upon the sidewalks of life,
I skin my knees. I bleed.
I love a funny poem with a lethal sucker punch.
Our life is so fragile and so brief and we really are only sustained, held up, buoyed, etc by one another. I have felt that so acutely lately. Yesterday Wendy presented me with a dress she’d made for me out of bubble wrap – a gesture to indicate her desire to protect me from all of the falling down. It’s a divine dress (which makes me feel like a POP star!) but in reality, it is all of you – from the nurse I’ve never met who commented on the blog, to my parent’s high school friends, to former colleagues writing in, to my intimate circle, to my family and all of the aforementioned groups who supported me at Yoshi’s – all of you are bubble wrap for me and for each other.
Here’s how it works: I can’t possibly thank you all in a way that does justice to your efforts – I already hear the Academy Awards band playing me off the stage now. Just know how much I love and appreciate all of you – including those I have yet to meet.
Thursday, May 08, 2008
zzzzzz
I'm way too wiped to write both a Yoshi's blog and a limo night blog. My right hand fatigues easily and from what I understand it's best not to push it. I have been one-hand typing 50% of the time but now I'm doing 2 fingers on each hand until I train my voice-activated software. In other bullshit, my falling risk has increased because of the weakness in both my hip flexors and ankles and my OT wants me out of my apt and into a more suitable housing situation asap. This is easier said than done.
On the brighter side, lithium trial screening is this friday and the limo night and Yoshi's were amazing. To learn more about limo night go to:
http://seehowwealmostfly.blogspot.com/2008/05/ten-women-of-certain-age-lets-say-long.html
and read alison's account of the evening. She does it much more justice that I ever could....But play some Bachman Turner Overdrive in the background as you read it.
On the brighter side, lithium trial screening is this friday and the limo night and Yoshi's were amazing. To learn more about limo night go to:
http://seehowwealmostfly.blogspot.com/2008/05/ten-women-of-certain-age-lets-say-long.html
and read alison's account of the evening. She does it much more justice that I ever could....But play some Bachman Turner Overdrive in the background as you read it.
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