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?
Wednesday, May 28, 2008
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.
Thursday, May 01, 2008
Balloon Liberation
My Mom sent me a bouquet of balloons in between opening weekend of War and PeaceMeal – The Musical and the Yoshi’s benefit on May 6. Now nothing makes me sadder than watching a bunch of helium balloons slowly die, the air sucked out of them until they sag. They are never as beautiful as they are the day of their inflation. They should always either be inhaled or liberated shortly after that. Mac and I did the latter though I wish we’d saved one for inhaling so we could sing a falsetto goodbye to them as they began their ascent. They were remarkably beautiful flying up into infinity….or the Berkeley campus…. becoming brilliant colorful dots against the blue backdrop of the sky. We attached a note to the last one in case it landed somewhere. A mystery for someone to discover. I would love to find a note like that. How much more beautiful things are when we let them go instead of clutching on to something that used to be.
It made me think again about what a mismatch this disease is for me. Not for me the slow, defeated deflation. I want to be popped so I whir in a wild zigzag jig through the sky like a Looney Tunes character, leaving only freckled skin and red hair in a perfect sheath once all the air as been let out of me, I want to have my strings cut like the happy face mylar balloon we watched cheerfully bounce it’s way into oblivion it’s grin intact. I want to be inhaled, absorbed, devoured, to spontaneously combust, to go super nova. Anything but this slow goodbye to my old life.
My right hand is starting to weaken now. I had two dramatic falls – one a full-on face plant. I’m not ready to give up yet but I can see how it’s going to get harder and harder to have fun. If it gets too sad down the road, I hope people will understand if I prefer to cut the strings and fly.
Tonight a few stalwart supporters and I are dressing in 1970s prom dresses, blaring Foreigner and Bachman Turner Overdrive and driving around in a stretch limo. I will report on the results and I will dance even if I take a tooth out falling down.
It made me think again about what a mismatch this disease is for me. Not for me the slow, defeated deflation. I want to be popped so I whir in a wild zigzag jig through the sky like a Looney Tunes character, leaving only freckled skin and red hair in a perfect sheath once all the air as been let out of me, I want to have my strings cut like the happy face mylar balloon we watched cheerfully bounce it’s way into oblivion it’s grin intact. I want to be inhaled, absorbed, devoured, to spontaneously combust, to go super nova. Anything but this slow goodbye to my old life.
My right hand is starting to weaken now. I had two dramatic falls – one a full-on face plant. I’m not ready to give up yet but I can see how it’s going to get harder and harder to have fun. If it gets too sad down the road, I hope people will understand if I prefer to cut the strings and fly.
Tonight a few stalwart supporters and I are dressing in 1970s prom dresses, blaring Foreigner and Bachman Turner Overdrive and driving around in a stretch limo. I will report on the results and I will dance even if I take a tooth out falling down.
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