The hardest thing about losing things is the questions.
” Do you remember where you had it last?”
Well of course you don't otherwise upon hearing this question, you would go back to that sink counter in the bathroom of the Peruvian restaurant and there it would be – your favorite hammered silver ring, waiting for you just where you left it.
“Why don't you retrace your steps?”
Sure, just wheel backwards and follow the tire tracks until you roll over that black cashmere sweater - the one that goes with everything. Or…
“Why don't you just pick a designated spot for your keys and keep them there? Then you won't lose them.”
Sigh. Because they’re keys, aren't they . By their very nature they must be moved around or you will be locked out of life. And the questions never make any sense, because when you lose things, you're not going to live backwards in time, calmly and dispassionately, like Mr. Spock. You're going to frantically scurry, like an animal trapped in a cage, pacing from corner to corner, desperately trying to retrieve what you've lost.
But not when you lose the big things. There's an eerie calm that comes over you when you lose the unthinkable. You neither retrace your steps nor think about the last time, because it's too unbearable. The last time you'll ever eat sushi, alone in a restaurant with your son. No matter how many times you think about that last time, it’s still lost. When you lose big things, you understand that. You breathe deeply and you try to find a ballast, something to hold on to so that you can sustain the next loss and the next loss and the next one.
Everybody jokes about where the lost socks go. Did the sock monster take them? Is there a sock island where they all congregate? Is there some cad making black market sock monkeys out of socks they’ve pilfered from people' s dryers? You could swear you put socks in there, in pairs, and you come out with a bunch of single useless fucking socks. Imagine, a pile of all the socks that you lost in your whole life. Then imagine that instead of socks those socks are the things that you find most important to you: walking, eating, talking, breathing. And imagine watching that pile grow bigger and bigger until you can't look anywhere in the room without seeing that accumulation of losses. That's what my bad moments feel like.
I said goodbye to Mac not knowing if we would ever go out alone together to eat again, because I can't really feed myself and I don't want him to have to do that. I said goodbye to him not knowing if I could ever watch a movie alone with him again, because it's too hard to try to shimmy myself onto the toilet without help. I said goodbye to him not knowing if when he comes back at winter break, my voice will be intelligible. It's almost too much to bear. I can't really describe it to you. It's just this primal, animal-like grief and that panicky noise you hear inside your head when you don't remember where you put your keys and you've lost the directions for a job interview or the soccer car pool for which you’re late. Only louder. Much louder. It goes to 11.
The hardest part of losing things is not the realization that you never appreciated what you had. It's the very deep understanding that you always did appreciate it, that you were worthy of it, and you still lost it. And somehow, you have to keep going. And you have to keep losing, and you can't give up until you've lost everything. I'm proud that I always knew it was a gift to sing, to be with my friends, and I'm proud that I loved every goddamn minute with my beautiful son. I don't know if that makes this harder or easier. Or it just is.
Sunday, September 20, 2009
Friday, September 18, 2009
Benefit for Me
If you're in the Bay Area, here's a great way to spend a Sunday afternoon. I'll be there with some of my friends and family. And I can vouch that the music is wonderful.
BENEFIT FOR CARLA ZILBERSMITH: The Jazzschool presents an intimate musical afternoon with Bay Area duo TESLIM featuring violinist Kaila Flexer & multi-instrumentalist Gari Hegedus. Teslim’s repertoire includes Greek, Sephardic, Turkish music and original music inspired by these fertile traditions. Sunday, September 27, 2009 at 4:30 p.m.
This afternoon performance will feature Teslim performing two songs Kaila wrote for her dear friend and a world premier of a third piece for Carla: a work by Flexer that will eventually be expanded for chamber orchestra. On hand to play this work-in-progress will be Evan Fraser, percussion, Katrina Wreede, viola and Benito Cortez, violin.
About Teslim:
Teslim (Tes-LEEM) means both 'commit' and 'surrender' in Turkish and features Bay Area musicians, violinist Kaila Flexer and Gari Hegedus on oud, Turkish saz, Greek lauoto. This potent duo performs Greek, Turkish and Sephardic music. In addition, both Flexer and Hegedus are composers who take inspiration from these fertile traditions. You may know Flexer for her productions of Klezmer Mania! and Pomegranates & Figs: A Feast of Jewish Music. Hegedus plays in Stellamara and the Black Olive Babes. For more information about Teslim and to hear music clips, visit www.kailaflexer.com .
Date: Sunday, September 27, 2009
Time: 4:30 pm
Event: Teslim (Kaila Flexer, Gari Hegedus) plus special guests play an afternoon concert of Greek, Turkish Sephardic & original music. This is a benefit concert for Carla Zilbersmith.
Venue: The Jazzschool
Location: 2087 Addison St. Berkeley, CA 94704
Tickets: $15.
For more info: (510) 845-5373 or www.jazzschool.com
BENEFIT FOR CARLA ZILBERSMITH: The Jazzschool presents an intimate musical afternoon with Bay Area duo TESLIM featuring violinist Kaila Flexer & multi-instrumentalist Gari Hegedus. Teslim’s repertoire includes Greek, Sephardic, Turkish music and original music inspired by these fertile traditions. Sunday, September 27, 2009 at 4:30 p.m.
This afternoon performance will feature Teslim performing two songs Kaila wrote for her dear friend and a world premier of a third piece for Carla: a work by Flexer that will eventually be expanded for chamber orchestra. On hand to play this work-in-progress will be Evan Fraser, percussion, Katrina Wreede, viola and Benito Cortez, violin.
About Teslim:
Teslim (Tes-LEEM) means both 'commit' and 'surrender' in Turkish and features Bay Area musicians, violinist Kaila Flexer and Gari Hegedus on oud, Turkish saz, Greek lauoto. This potent duo performs Greek, Turkish and Sephardic music. In addition, both Flexer and Hegedus are composers who take inspiration from these fertile traditions. You may know Flexer for her productions of Klezmer Mania! and Pomegranates & Figs: A Feast of Jewish Music. Hegedus plays in Stellamara and the Black Olive Babes. For more information about Teslim and to hear music clips, visit www.kailaflexer.com
Date: Sunday, September 27, 2009
Time: 4:30 pm
Event: Teslim (Kaila Flexer, Gari Hegedus) plus special guests play an afternoon concert of Greek, Turkish Sephardic & original music. This is a benefit concert for Carla Zilbersmith.
Venue: The Jazzschool
Location: 2087 Addison St. Berkeley, CA 94704
Tickets: $15.
For more info: (510) 845-5373 or www.jazzschool.com
Monday, September 07, 2009
Big Baby
In 17 years, I can probably count on two hands the number of times my son has been unreasonable and I’d probably still have a couple of curled up, useless fingers to spare.
Those of you who are parents or prospective parents of babies, remember this: it sucks to be a baby. You don’t get to go where you want. You don’t get to defecate in any kind of receptacle – you just have to shit or piss in your pants. You sit stuck in a chair, watching people slowly prepare your food. You don’t get to eat when you’re hungry, you don’t get the amount on your spoon that you want, you don’t get to eat at the tempo you want. If your mom or your babysitter or your dad or whoever the fuck is feeding you is distracted, sometimes the fucking spoon doesn’t even make into your mouth. Now you’ve got food all over your cheeks. And whose fault is that? Not yours.
It sucks to be a baby.
If I were a baby, I would be absolutely insane, because my inner monologue would be, “Hurry the fuck up with that food, bitch. How long does it take to puree some squash?” But babies can’t even talk, so all they have left to their devices is to cry, and then we think they’re being unreasonable. Now compound that with the fact that they are so short that all they can see is everybody’s knees. They have to crane their heads up to look at their captors, except when people decide to get right up in their face and ask them stupid questions and they don’t even wait around for the answer.
If you have a baby that you think is being unreasonable I implore you, give me a call, and I can enlighten you on what it’s like from their perspective.
Which brings me to my topic of the day.
Now that I am in the same helplessness class as a baby, I find myself in an awkward situation. I have boundary setting fatigue and request making fatigue, because it’s hard to get people to take a request you made as some sort of global principle and figure out what needs to be done. So I find myself having to ask, every time the toilet paper roll is low, “Will you change the toilet paper roll?” Or, “Can you not get shampoo in my eyes when you wash my hair?” Or, “I don’t eat wheat or dairy.” To compound matters, while I am quite adorable, I’m not quite as adorable as a little baby so I worry that my bitching will get old quickly.
It’s fatiguing to have to give the same information out over and over again. So I find myself in this situation where there are only a small handful of people with whom I can relax and put my guard down, like my close girlfriends who have shifts that they regularly commit to every week to help me out. My other friends, who I love dearly, can’t keep up, not through any fault of their own, but because this disease is so changing and shifting. If you miss a couple of weeks taking care of someone with ALS, then you really can’t keep up with the program. Likewise, it’s challenging with caregivers because, in all but a rare couple of cases, I find that if people haven’t had kids, then they don’t know how to change along with the disease, because they’ve never had to practice that skill. I remember when Mac was a baby that every time I thought I had his routine down he would change it and I would think he was fucking with me but he wasn’t – He was growing up.
My level of anxiety around caregiver issues is increasing as it gets harder to talk. I know pretty soon, I’m going to be like that baby, unable to make demands and unable to articulate what is driving me crazy at any given moment.
Now let me stop and say this does not reflect a change in my attitude about life in general, about my gratitude towards the people in my life, etc., etc. I’m just letting you know that I have a new and deepened understanding about what it’s like to be that baby – crying because there’s something she wants and she cannot effectively communicate to people what that thing is.
Life is not cut and dry. You aren’t either in an untenable situation that you can’t imagine anyone else being able to bear, or in a situation where your circumstances allow you to see what a miracle life is and what a blessing it is just to be alive, sucking oxygen on this gorgeous planet. They both exist for me everyday, albeit the percentage of frustration has definitely increased as the disease has progressed, and why wouldn’t it?
Can you imagine having to ask someone to help you out of bed in the morning? To be forced to meet them at their level of cheeriness, even if you’re headachy, sore, and gasping for breath? To communicate with them, “Now I need the shower water a little hotter. Now a little colder,” and to deal with the fact that half of the time the water is not actually hitting your body? Then imagine your breakfast is served on someone else’s time table, and the coffee is not necessarily as weak or as strong as you like it, the eggs are never cooked quite the way you’d have cooked them if you were doing them yourself, the toast might be a little burned or a little bit underdone, and there’s never going to be the right amount of butter. Unless you micromanage, in which case, halfway through the day, you’re too tired to speak because you’ve shot your wad on breakfast. And you feel like you can’t complain because, by the end of the day, the food is going to be making you choke anyway, and there are only a few meals left, so you really have to enjoy the ones that you’ve got.
Now it’s 11 a.m. and you’ve barely begun your day. Someone joins you in the bathroom when you pee, someone puts you to bed to nap, and there’s ALWAYS somebody around, except on rare, rare occasions. That’s when you need something that you can’t get for yourself and you can’t lift your arm high enough to reach the cupboard, or you don’t have the strength to lift a water bottle and pour a little cup of water that somebody forgot to prepare for you before they left.
It is like running a marathon every day, only it’s 26 miles of good attitude, trying to find a way to set boundaries respectfully so as not to offend people, but strongly enough that people actually respond. Sometimes it’s hard to find the humorous thread in someone’s behavior, rather than succumbing to the lump in your throat you have because people can’t see that leaving something in the middle of the hallway makes it impossible to get from room to room in a wheelchair.
But here’s the kicker: the kicker is that there’s nobody to blame, just this stupid, stupid ALS. Because anybody who didn’t have good intentions towards me is not in my life anymore. The people that are here, whether they are able to take care of me or not, are people who genuinely care about me and who have made great efforts on my behalf. I’m under no illusions in that respect. I know how deeply I am loved, and I know how many sacrifices have been made on my behalf. And I know that there is a tiny minority of my friends who set the bar so astronomically high that Mother Teresa would be, like, “Really? You’ve got to be kidding me. I’m sorry, but I’m not Wendy OK? I’m gonna go back to healing lepers.”
Nonetheless, I am fatigued. I am worn out asking for what I want or accepting things that make me uncomfortable. I handle it the only way I know how, which is to try to distract myself with fun. But even that can feel fraught with peril sometimes.
Nonetheless, here is my solution to what ails me:
I am organizing a fundraiser for ALS research. I am getting 12 ALS patients to pose for a cheesecake calendar that can be sold to raise awareness and make a little bit of green and show people that people like us are just like people like you. I already have several people lined up to pose and wonderful friends who have volunteered to take pictures and to do calendar layout.
I am taking the Fuck Truck camping next weekend with a group of my wonderful friends.
I bought a beach wheelchair. Barbara and her husband took me to the beach yesterday, and I am hoping to get there at least once a week. I think that just breathing the ocean air will be a cure for a lot of what ails me. That and watching the kite boarders.
Some of my friends and I are getting together on Friday nights to watch movies in my backyard projected onto a big screen. We watched “Mystery Men” this week. And the night before, Mac and I sat out in the backyard and watched an episode of “ Rome. ” There is almost nothing I like more than hanging out with Mac and watching something gory and violent.
And speaking of Mac, he leaves September 16, and I will officially be living alone without my buddy. Please, please, please. Don’t write me or call me and tell me you know how I feel, because, unless you have a fatal illness and your actual days with your kid are numbered, you don’t. I’m sure it was sad for you when your kid went off to college, but you probably had a reasonably good expectation of being at his wedding and of hanging out with your grandchildren.
Do I sound bitter? Yeah, I probably do sound bitter today. But I have to listen, on a daily basis, to people who respond to my complaints with, “I know, me too.” If I say, I’m tired, please don’t say, “I know, me too.” I don’t believe you. If you hear me scream out loud and then double over in pain, and say, “I have a cramp,” don’t tell me you know how I feel, you have your period. Trust me, I used to have a period and there is no way that anything that has ever happened in the annals of periods could compare to the cramps that I have.
Wow. I sound like some mean old man today. I guess we’re all entitled to those days, and I guess it’s only fair that I share them with you, since so many of you have this moving but misguided idea of me as some kind of Superwoman on Wheels. It’s your Scooby Doo moment. The mask is off, and I could have gotten away with it too, if it weren’t for you pesky kids and your dog.
Oh, that reminds me. The other way that I am battling despair is I’ve commissioned Nata to paint the van. I love the idea—that gigantic monstrosity being even more of a spectacle, with mudflap girl on wheels, courtesy of Jenny, and any other crazy things I decide to paint on it.
It feels really scary to put so much negativity into one of these blogs especially when today I met a lot of amazing people at the MDA Telethon, including Jason Picetti, whose blog I will link to this one. Jason is younger than me, was diagnosed after me, and he has a gorgeous little baby girl. I’m sure he has his dark moments but he was so positive and upbeat and inspiring. You should read his blog but I caution you that the beautiful way he writes about this wife will make you cry your ass off.
Still I’m going to post the blog without purging it of the complaining… otherwise I won’t be posting this week. (This would be a perfect place to type LOL if I were ever able to bring myself to do so in a non-ironic context. If you are the kind of person that likes text language then you can imagine I said LOL and then you can ROTFLMAO) I get concerned about saying things out loud and giving them more power. I don’t want to give these bad feelings more power than they already have. But at the same time, they’re there no matter what I do.
At least, maybe if I share them with you, you’ll be a little more patient with your baby. Or with someone you love who has ALS or who is elderly or who is just acting like a big baby.
Those of you who are parents or prospective parents of babies, remember this: it sucks to be a baby. You don’t get to go where you want. You don’t get to defecate in any kind of receptacle – you just have to shit or piss in your pants. You sit stuck in a chair, watching people slowly prepare your food. You don’t get to eat when you’re hungry, you don’t get the amount on your spoon that you want, you don’t get to eat at the tempo you want. If your mom or your babysitter or your dad or whoever the fuck is feeding you is distracted, sometimes the fucking spoon doesn’t even make into your mouth. Now you’ve got food all over your cheeks. And whose fault is that? Not yours.
It sucks to be a baby.
If I were a baby, I would be absolutely insane, because my inner monologue would be, “Hurry the fuck up with that food, bitch. How long does it take to puree some squash?” But babies can’t even talk, so all they have left to their devices is to cry, and then we think they’re being unreasonable. Now compound that with the fact that they are so short that all they can see is everybody’s knees. They have to crane their heads up to look at their captors, except when people decide to get right up in their face and ask them stupid questions and they don’t even wait around for the answer.
If you have a baby that you think is being unreasonable I implore you, give me a call, and I can enlighten you on what it’s like from their perspective.
Which brings me to my topic of the day.
Now that I am in the same helplessness class as a baby, I find myself in an awkward situation. I have boundary setting fatigue and request making fatigue, because it’s hard to get people to take a request you made as some sort of global principle and figure out what needs to be done. So I find myself having to ask, every time the toilet paper roll is low, “Will you change the toilet paper roll?” Or, “Can you not get shampoo in my eyes when you wash my hair?” Or, “I don’t eat wheat or dairy.” To compound matters, while I am quite adorable, I’m not quite as adorable as a little baby so I worry that my bitching will get old quickly.
It’s fatiguing to have to give the same information out over and over again. So I find myself in this situation where there are only a small handful of people with whom I can relax and put my guard down, like my close girlfriends who have shifts that they regularly commit to every week to help me out. My other friends, who I love dearly, can’t keep up, not through any fault of their own, but because this disease is so changing and shifting. If you miss a couple of weeks taking care of someone with ALS, then you really can’t keep up with the program. Likewise, it’s challenging with caregivers because, in all but a rare couple of cases, I find that if people haven’t had kids, then they don’t know how to change along with the disease, because they’ve never had to practice that skill. I remember when Mac was a baby that every time I thought I had his routine down he would change it and I would think he was fucking with me but he wasn’t – He was growing up.
My level of anxiety around caregiver issues is increasing as it gets harder to talk. I know pretty soon, I’m going to be like that baby, unable to make demands and unable to articulate what is driving me crazy at any given moment.
Now let me stop and say this does not reflect a change in my attitude about life in general, about my gratitude towards the people in my life, etc., etc. I’m just letting you know that I have a new and deepened understanding about what it’s like to be that baby – crying because there’s something she wants and she cannot effectively communicate to people what that thing is.
Life is not cut and dry. You aren’t either in an untenable situation that you can’t imagine anyone else being able to bear, or in a situation where your circumstances allow you to see what a miracle life is and what a blessing it is just to be alive, sucking oxygen on this gorgeous planet. They both exist for me everyday, albeit the percentage of frustration has definitely increased as the disease has progressed, and why wouldn’t it?
Can you imagine having to ask someone to help you out of bed in the morning? To be forced to meet them at their level of cheeriness, even if you’re headachy, sore, and gasping for breath? To communicate with them, “Now I need the shower water a little hotter. Now a little colder,” and to deal with the fact that half of the time the water is not actually hitting your body? Then imagine your breakfast is served on someone else’s time table, and the coffee is not necessarily as weak or as strong as you like it, the eggs are never cooked quite the way you’d have cooked them if you were doing them yourself, the toast might be a little burned or a little bit underdone, and there’s never going to be the right amount of butter. Unless you micromanage, in which case, halfway through the day, you’re too tired to speak because you’ve shot your wad on breakfast. And you feel like you can’t complain because, by the end of the day, the food is going to be making you choke anyway, and there are only a few meals left, so you really have to enjoy the ones that you’ve got.
Now it’s 11 a.m. and you’ve barely begun your day. Someone joins you in the bathroom when you pee, someone puts you to bed to nap, and there’s ALWAYS somebody around, except on rare, rare occasions. That’s when you need something that you can’t get for yourself and you can’t lift your arm high enough to reach the cupboard, or you don’t have the strength to lift a water bottle and pour a little cup of water that somebody forgot to prepare for you before they left.
It is like running a marathon every day, only it’s 26 miles of good attitude, trying to find a way to set boundaries respectfully so as not to offend people, but strongly enough that people actually respond. Sometimes it’s hard to find the humorous thread in someone’s behavior, rather than succumbing to the lump in your throat you have because people can’t see that leaving something in the middle of the hallway makes it impossible to get from room to room in a wheelchair.
But here’s the kicker: the kicker is that there’s nobody to blame, just this stupid, stupid ALS. Because anybody who didn’t have good intentions towards me is not in my life anymore. The people that are here, whether they are able to take care of me or not, are people who genuinely care about me and who have made great efforts on my behalf. I’m under no illusions in that respect. I know how deeply I am loved, and I know how many sacrifices have been made on my behalf. And I know that there is a tiny minority of my friends who set the bar so astronomically high that Mother Teresa would be, like, “Really? You’ve got to be kidding me. I’m sorry, but I’m not Wendy OK? I’m gonna go back to healing lepers.”
Nonetheless, I am fatigued. I am worn out asking for what I want or accepting things that make me uncomfortable. I handle it the only way I know how, which is to try to distract myself with fun. But even that can feel fraught with peril sometimes.
Nonetheless, here is my solution to what ails me:
I am organizing a fundraiser for ALS research. I am getting 12 ALS patients to pose for a cheesecake calendar that can be sold to raise awareness and make a little bit of green and show people that people like us are just like people like you. I already have several people lined up to pose and wonderful friends who have volunteered to take pictures and to do calendar layout.
I am taking the Fuck Truck camping next weekend with a group of my wonderful friends.
I bought a beach wheelchair. Barbara and her husband took me to the beach yesterday, and I am hoping to get there at least once a week. I think that just breathing the ocean air will be a cure for a lot of what ails me. That and watching the kite boarders.
Some of my friends and I are getting together on Friday nights to watch movies in my backyard projected onto a big screen. We watched “Mystery Men” this week. And the night before, Mac and I sat out in the backyard and watched an episode of “ Rome. ” There is almost nothing I like more than hanging out with Mac and watching something gory and violent.
And speaking of Mac, he leaves September 16, and I will officially be living alone without my buddy. Please, please, please. Don’t write me or call me and tell me you know how I feel, because, unless you have a fatal illness and your actual days with your kid are numbered, you don’t. I’m sure it was sad for you when your kid went off to college, but you probably had a reasonably good expectation of being at his wedding and of hanging out with your grandchildren.
Do I sound bitter? Yeah, I probably do sound bitter today. But I have to listen, on a daily basis, to people who respond to my complaints with, “I know, me too.” If I say, I’m tired, please don’t say, “I know, me too.” I don’t believe you. If you hear me scream out loud and then double over in pain, and say, “I have a cramp,” don’t tell me you know how I feel, you have your period. Trust me, I used to have a period and there is no way that anything that has ever happened in the annals of periods could compare to the cramps that I have.
Wow. I sound like some mean old man today. I guess we’re all entitled to those days, and I guess it’s only fair that I share them with you, since so many of you have this moving but misguided idea of me as some kind of Superwoman on Wheels. It’s your Scooby Doo moment. The mask is off, and I could have gotten away with it too, if it weren’t for you pesky kids and your dog.
Oh, that reminds me. The other way that I am battling despair is I’ve commissioned Nata to paint the van. I love the idea—that gigantic monstrosity being even more of a spectacle, with mudflap girl on wheels, courtesy of Jenny, and any other crazy things I decide to paint on it.
It feels really scary to put so much negativity into one of these blogs especially when today I met a lot of amazing people at the MDA Telethon, including Jason Picetti, whose blog I will link to this one. Jason is younger than me, was diagnosed after me, and he has a gorgeous little baby girl. I’m sure he has his dark moments but he was so positive and upbeat and inspiring. You should read his blog but I caution you that the beautiful way he writes about this wife will make you cry your ass off.
Still I’m going to post the blog without purging it of the complaining… otherwise I won’t be posting this week. (This would be a perfect place to type LOL if I were ever able to bring myself to do so in a non-ironic context. If you are the kind of person that likes text language then you can imagine I said LOL and then you can ROTFLMAO) I get concerned about saying things out loud and giving them more power. I don’t want to give these bad feelings more power than they already have. But at the same time, they’re there no matter what I do.
At least, maybe if I share them with you, you’ll be a little more patient with your baby. Or with someone you love who has ALS or who is elderly or who is just acting like a big baby.
Sunday, September 06, 2009
Mac and I do the Telethon
Tomorrow (labor day), Mac and I will be interviewed live on the Jerry Lewis Telethon. If you are in the Bay Area, tune into KTVU-2. We will be on some time between 3:30 and 3:53 PM pacific time. If you're watching from somewhere else in the country, check this list to see if one of your local stations is carrying the telethon - http://www.mda.org/telethon/FindYourStation.pdf.
If you are unable to access television, you may be able to stream the telethon at the following web address:
http://www.mda.org/telethon/2009telethon/TelLive.html
Happy Labor Day!
If you are unable to access television, you may be able to stream the telethon at the following web address:
http://www.mda.org/telethon/2009telethon/TelLive.html
Happy Labor Day!
Tuesday, August 25, 2009
Vegas, Baby, Vegas!
How is it that I have never been to Vegas? It's said that Salvador Dali spent some time here, but I have to think he was a city planner, because Vegas is…..well…. Dali-esque. Las Vegas is a wheelchair rider's dream. Instead of weaving through a sea of crotches as I so often do, I was a minor character from "WALL*E," just gliding through the conspicuous consumption with the battalion of wheelchairs around me going every which way. Vegas is a triumph of the imagination over good taste and in terms of fantasy it out-Disneys Disney. There is the Statue of Liberty, thrusting somewhat incongruously out of the concrete and evoking the last scene of Planet of the Apes, a castle with a drawbridge…where you go to see strippers…and of course leopard skin as far as the eye can see. I think I love this crazy town more than Frank and Sammy did.
I went to Vegas with my dear high school friend Renee. I had told her that one of my regrets was never having seen the Grand Canyon, so she booked a helicopter tour and off we went to Vegas and over the amazing Grand Canyon.
But I'm getting ahead of myself. First, we went to see the Thunder from Down Under, an Australian strip show. I've never gone to a strip show before. I did hire a stripper for Wendy's baby shower when she had Tessa. He wore a diaper. It was great. But I haven't actually been to a club before. I had asked a friend…let’s just call him Bob….what I could bring back for him from Vegas, and he asked for a sweaty jockstrap from a male stripper. Now, my friends know that you don't just make that request of me and not expect to receive a sweaty jockstrap from a male stripper. Of course I'm going to do everything in my power to get it. Tragically, these strippers don't show penis. They just strip TO their jockstraps. And they don't sell souvenir jockstraps, which wouldn't be sweaty anyway. So I had to use my considerable charm and persuasive talents to leave the club with a sweaty jockstrap belonging to a beautiful Australian man named Donovan. I even got a lap dance thrown in. So all in all, I would say it was a good night. As far as the details go, what happens in Vegas stays in Vegas. Except of course for the jockstrap, which is now safely in the hands of its new owner.
If that scene didn’t take your breath away, let me tell you about the helicopter ride. If you've watched any episodes of "M*A*S*H," you know that helicopters aren't easy vehicles to get in and out of even when you're able-bodied. When you're in a wheelchair it's sheer insanity to even attempt it. So we did. And somehow Renee was able to get me up (sans army stretcher) in the cockpit (again) and then wheel the wheelchair back to a secure undisclosed location.
So, the Canyon, the Canyon. I don't know if there are poems about the Grand Canyon, but whether there are or not, I know I don't have the words to describe the scope, the magnitude, the awe-inspiring depth of that place. It blew my mind completely. The tour was comprised of Renee, myself and a bunch of Germans, so the narration was all in German with kind of bizarre music choices like "Home on the Range" and Top Gun’s "Highway to the Danger Zone" or, in German, Spitzenpistole mit Gefahrenzone. There's something about the German language that makes everything sound at once very serious and very funny. Likewise the music of Wagner (which was oddly omitted).
But the tour caught me by surprise at the end when during our descent, the corny soundtrack ended with Louis Armstrong singing "What a Wonderful World." It felt like, even in this tacky city with this Teutonic soundtrack, the world was conspiring to remind us all how lucky we are. How lucky I am, to get to have an experience like that, and to have friends like Renee and my friends Gord and Kim who pitched in financially to make the trip possible.
You know, there were so many trips I have taken in my life where I was surrounded by awe-inspiring moments and missed them, because I wanted the experience to be even more magical than it was. And I never got it. It wasn't that I'd picked the wrong spot or come at the wrong time. It was me looking in the wrong place for the wrong thing instead of looking at what was right in front of me. I'm really grateful that Renee would take all this time to fulfill a wish of an old friend. I'm really grateful that Gord and Kim would want to help her make that happen. And I'm also really grateful that I've learned over the years to stop, to rave, to look, to listen, and to see how very beautiful almost everything is.
As a dancer I was never Michael Jackson, but what do you expect? Those white guys can really dance. But what I lacked in precision, I made up for in enthusiasm. Often at an event, I would be the last person on the dance floor. One cast party I pulled a muscle in my neck, I was dancing with such enthusiasm. Now I’m in a wheelchair, and I’m still not Michael Jackson, but I’m pretty sure that I would beat the hell out of Christopher Reeve in a dance competition (especially now).
So last night I went to a fundraising event for ALS TDI, which was organized by the Reich family. I mentioned Corey Reich in the blog, Young Soldiers, from a couple of months back. They’re just the loveliest family you could imagine, and they’re getting close to the $1,000,000 mark for ALS fundraising.
It was a moving night. Corey was there, and a young lady named Megan, who is 25 and has familial ALS. I was just struck by what a grounded, composed, graceful, lovely young woman she was. Her mother had dealt with the death of her husband, and now the imminent death of her daughter. I can’t even imagine what it’s like for women like Linda, or like Wendy Reich, who have to endure this relentless assault on their babies.
As I was beginning to fade, Wendy said, “Come on! Come and dance!” So I said, “OK, but only if you come dance with me.” We danced to Prince singing “Kiss” and to the B-52’s “Love Shack,” and I was kind of thunderstruck. This woman, whose beautiful, beautiful young boy is not much older than my own son, and me, dancing. Life goes on. Joy goes on. Exuberance goes on in the face of the absolute worst thing you can imagine, like losing your child, or like losing every piece of you, bit by bit.
When Renee and I were in Vegas, the airline broke my motorized wheelchair. We made it to the hotel with Renee struggling with both of our bags while trying to push a wheelchair that was not intended to be pushed. We checked in. We stayed calm. Then the bellhop Sam said, “We have motorized wheelchairs here that you can rent.” And I started to cry, because I realized that moving forward in a chair is my last act of independence. I cannot feed myself. I cannot dress myself. I cannot get in and out of bed or onto the toilet by myself. But I can move in a chair, and the relief that that was not going to be taken away from me for the weekend was so great that I couldn’t stop the tears.
Even though I have so little left that I can do for myself, I feel like I need to get out there, put on my high heels and my little black dress, dance, laugh, and joke. I’m not the person with a tireless commitment to raising millions of dollars. I’m not like Mary Harrington, who, after her diagnosis, made several trips to New Orleans on relief missions. I am a joker and an entertainer, and a person that can find fun in almost anything. And it’s really important to me to show people that you can have fun and have this disease. But, it’s kind of humbling to pick joking as your contribution to the world when you’re surrounded by people who humble you with their endless capacity for giving.
I sat there at the table with my two nurses, Dallas and Bob, watched their eyes get moist on several occasions, and heard Bob talk about looking at the video and seeing a bunch of his patients all together outside the clinic and how that felt. And it dawned on me, that they don’t have any objective distance from us. They are risking having those difficult feelings, because they want to be fully engaged in the world, and that can be a painful thing. They are heroes. Not just them, but everybody at my clinic. And also Megan, and Corey, and Johnny, and all the people I’ve met with ALS, and all the family members and caregivers who have endured the loss of someone to this fucking disease. They amaze me.
I think about Warren Schiffer, who stayed by his wife’s side, stretched her for as much as two hours a day, took care of all of her needs, moved into the nursing home with her, took time off work and gave everything, because he wanted to. He wanted to be there with her. I think about his wife, who has since died, and her determination, along with his, to raise money for ALS research. And how someone far more advanced in her illness than me, along with her husband, would create a fundraising arm that would eventually raise almost $8,000,000. And I think about the fact that, after enduring a devastating loss, his impulse is to reach out to help other people. Like me.
If there is anything that I’ve learned from having this disease, it’s that people are capable of enormous good when put to the test. I have met people that blow my mind and only a few people have I encountered through this journey that have been dickwads. When I imagine the hearts of Warren, or the Reichs, or Megan and her mom, or a lot of the other great people I’ve met it’s like flying over the Grand Canyon and being awed by the depth and the scope.
I went to Vegas with my dear high school friend Renee. I had told her that one of my regrets was never having seen the Grand Canyon, so she booked a helicopter tour and off we went to Vegas and over the amazing Grand Canyon.
But I'm getting ahead of myself. First, we went to see the Thunder from Down Under, an Australian strip show. I've never gone to a strip show before. I did hire a stripper for Wendy's baby shower when she had Tessa. He wore a diaper. It was great. But I haven't actually been to a club before. I had asked a friend…let’s just call him Bob….what I could bring back for him from Vegas, and he asked for a sweaty jockstrap from a male stripper. Now, my friends know that you don't just make that request of me and not expect to receive a sweaty jockstrap from a male stripper. Of course I'm going to do everything in my power to get it. Tragically, these strippers don't show penis. They just strip TO their jockstraps. And they don't sell souvenir jockstraps, which wouldn't be sweaty anyway. So I had to use my considerable charm and persuasive talents to leave the club with a sweaty jockstrap belonging to a beautiful Australian man named Donovan. I even got a lap dance thrown in. So all in all, I would say it was a good night. As far as the details go, what happens in Vegas stays in Vegas. Except of course for the jockstrap, which is now safely in the hands of its new owner.
If that scene didn’t take your breath away, let me tell you about the helicopter ride. If you've watched any episodes of "M*A*S*H," you know that helicopters aren't easy vehicles to get in and out of even when you're able-bodied. When you're in a wheelchair it's sheer insanity to even attempt it. So we did. And somehow Renee was able to get me up (sans army stretcher) in the cockpit (again) and then wheel the wheelchair back to a secure undisclosed location.
So, the Canyon, the Canyon. I don't know if there are poems about the Grand Canyon, but whether there are or not, I know I don't have the words to describe the scope, the magnitude, the awe-inspiring depth of that place. It blew my mind completely. The tour was comprised of Renee, myself and a bunch of Germans, so the narration was all in German with kind of bizarre music choices like "Home on the Range" and Top Gun’s "Highway to the Danger Zone" or, in German, Spitzenpistole mit Gefahrenzone. There's something about the German language that makes everything sound at once very serious and very funny. Likewise the music of Wagner (which was oddly omitted).
But the tour caught me by surprise at the end when during our descent, the corny soundtrack ended with Louis Armstrong singing "What a Wonderful World." It felt like, even in this tacky city with this Teutonic soundtrack, the world was conspiring to remind us all how lucky we are. How lucky I am, to get to have an experience like that, and to have friends like Renee and my friends Gord and Kim who pitched in financially to make the trip possible.
You know, there were so many trips I have taken in my life where I was surrounded by awe-inspiring moments and missed them, because I wanted the experience to be even more magical than it was. And I never got it. It wasn't that I'd picked the wrong spot or come at the wrong time. It was me looking in the wrong place for the wrong thing instead of looking at what was right in front of me. I'm really grateful that Renee would take all this time to fulfill a wish of an old friend. I'm really grateful that Gord and Kim would want to help her make that happen. And I'm also really grateful that I've learned over the years to stop, to rave, to look, to listen, and to see how very beautiful almost everything is.
As a dancer I was never Michael Jackson, but what do you expect? Those white guys can really dance. But what I lacked in precision, I made up for in enthusiasm. Often at an event, I would be the last person on the dance floor. One cast party I pulled a muscle in my neck, I was dancing with such enthusiasm. Now I’m in a wheelchair, and I’m still not Michael Jackson, but I’m pretty sure that I would beat the hell out of Christopher Reeve in a dance competition (especially now).
So last night I went to a fundraising event for ALS TDI, which was organized by the Reich family. I mentioned Corey Reich in the blog, Young Soldiers, from a couple of months back. They’re just the loveliest family you could imagine, and they’re getting close to the $1,000,000 mark for ALS fundraising.
It was a moving night. Corey was there, and a young lady named Megan, who is 25 and has familial ALS. I was just struck by what a grounded, composed, graceful, lovely young woman she was. Her mother had dealt with the death of her husband, and now the imminent death of her daughter. I can’t even imagine what it’s like for women like Linda, or like Wendy Reich, who have to endure this relentless assault on their babies.
As I was beginning to fade, Wendy said, “Come on! Come and dance!” So I said, “OK, but only if you come dance with me.” We danced to Prince singing “Kiss” and to the B-52’s “Love Shack,” and I was kind of thunderstruck. This woman, whose beautiful, beautiful young boy is not much older than my own son, and me, dancing. Life goes on. Joy goes on. Exuberance goes on in the face of the absolute worst thing you can imagine, like losing your child, or like losing every piece of you, bit by bit.
When Renee and I were in Vegas, the airline broke my motorized wheelchair. We made it to the hotel with Renee struggling with both of our bags while trying to push a wheelchair that was not intended to be pushed. We checked in. We stayed calm. Then the bellhop Sam said, “We have motorized wheelchairs here that you can rent.” And I started to cry, because I realized that moving forward in a chair is my last act of independence. I cannot feed myself. I cannot dress myself. I cannot get in and out of bed or onto the toilet by myself. But I can move in a chair, and the relief that that was not going to be taken away from me for the weekend was so great that I couldn’t stop the tears.
Even though I have so little left that I can do for myself, I feel like I need to get out there, put on my high heels and my little black dress, dance, laugh, and joke. I’m not the person with a tireless commitment to raising millions of dollars. I’m not like Mary Harrington, who, after her diagnosis, made several trips to New Orleans on relief missions. I am a joker and an entertainer, and a person that can find fun in almost anything. And it’s really important to me to show people that you can have fun and have this disease. But, it’s kind of humbling to pick joking as your contribution to the world when you’re surrounded by people who humble you with their endless capacity for giving.
I sat there at the table with my two nurses, Dallas and Bob, watched their eyes get moist on several occasions, and heard Bob talk about looking at the video and seeing a bunch of his patients all together outside the clinic and how that felt. And it dawned on me, that they don’t have any objective distance from us. They are risking having those difficult feelings, because they want to be fully engaged in the world, and that can be a painful thing. They are heroes. Not just them, but everybody at my clinic. And also Megan, and Corey, and Johnny, and all the people I’ve met with ALS, and all the family members and caregivers who have endured the loss of someone to this fucking disease. They amaze me.
I think about Warren Schiffer, who stayed by his wife’s side, stretched her for as much as two hours a day, took care of all of her needs, moved into the nursing home with her, took time off work and gave everything, because he wanted to. He wanted to be there with her. I think about his wife, who has since died, and her determination, along with his, to raise money for ALS research. And how someone far more advanced in her illness than me, along with her husband, would create a fundraising arm that would eventually raise almost $8,000,000. And I think about the fact that, after enduring a devastating loss, his impulse is to reach out to help other people. Like me.
If there is anything that I’ve learned from having this disease, it’s that people are capable of enormous good when put to the test. I have met people that blow my mind and only a few people have I encountered through this journey that have been dickwads. When I imagine the hearts of Warren, or the Reichs, or Megan and her mom, or a lot of the other great people I’ve met it’s like flying over the Grand Canyon and being awed by the depth and the scope.
Thursday, August 20, 2009
Award-winning Blog
Please check out my baby brother's award-winning blog at www.beliefnet.com. He has FINALLY given me the green light to share it with you. I will link him to this site soon. He is brilliant!!!
Tuesday, August 11, 2009
Universal Health Care Is Gonna Kill My Grandma!
The other day I was trying to get a straw out of one of those take-out cups with the plastic lids - a task for which I no longer have the grip. I struggled and struggled and felt my throat getting tight because I couldn’t do this simple thing. Finally with a big lump in my throat, I said to Mac tersely “would you please get this out for me?” He very deliberately placed his hand over the straw as though gripping the hilt of a sword and in one deft movement pulled it out of the cup and over his head, and thrust it towards the ceiling as he said in a deep booming voice “Excalibur! I claim this straw in the name of the Britons!” Of course I completely forgot how frustrated I had been a few seconds earlier. Every day my boy cracks me up. He keeps me going. He is Wart and King Arthur – a kid who has been given a task that he didn’t ask for and didn’t believe he was up for but clearly he is.
Mac told me a statistic the other day that made my blood boil. Of those who are among the top one percent in patient expenditures (that would be me) fifty percent have their policies canceled. Meanwhile among those patients on whom the company makes a profit, less than one in a thousand get their policy canceled. I have a modest proposal: we allow that top one percent of people with serious illnesses who drain these companies of their massive profits, to man the firing squad and on the wrong side of the guns, we line up all the people who make these sick choices (get it? sick?) that favor profit over a basic human need. Then we allow those very sick, terminally sick, chronically sick people (not including me because my trigger finger isn’t strong enough) to shoot those creeps in the knee caps and then get up in their faces as they writhe in pain say, “Ouch, it’s a good thing you have comprehensive health care coverage, because that’s got to hurt” I recommend the patients wait awhile before calling the ambulance. What – too much?
You know, honestly, although I hate the health care system in this silly country more than pretty much anything I hate in the world, I’m not sure the U.S. is ready for a single payer system. I know that sounds negative, but I have been on Medicare for under a year and if that is the best the government can do, I got to tell ya, we are in big trouble folks. I pay upwards of $800 a month, which includes my drugs, and I’m on the phone with people whose comprehension (with some rare and very friendly exceptions) is marginal at best and who are generally indifferent to the fact that they are talking to someone with a debilitating and incurable fatal illness. I deal with poorly worded letters that Edith and I (who as she puts it are “college educated and then some”) can barely make sense of. It’s staggering. And there is no accountability. There is no supervisor to complain to. You can’t call the same person back because they are part of this massive clearinghouse. So even though I think my Canadian friends and relatives have their heads in the sand when they complain about their own health care system and that every non-impoverished-third -world country has a better health care system than the U.S., I don’t hold out a lot of hope. I know that sounds negative and I know I’m going to get a lot of hopeful blog comments and I will delight in them - I will. I really do hope I am wrong. Every day I hope that we can have a health care system in this country like every other fucking country but I’m not so sure it’s going to happen folks. 46% of healthcare costs in this country are ALREADY paid by taxpayers and Americans don’t want socialized medicine? That is some special kind of stupid. So while Obama holds Town Hall meetings that look like a scene from Deliverance, people like me end up relying on the generosity of others and lucky for me there are a lot of generous people in my life.
On Friday I picked up my new van, which was totally free! I was on a waiting list through the Muscular Dystrophy Association and sure enough my name came up and a lovely lady whose husband had died of ALS, drove this van from Mount Shasta to Sacramento to deliver it to me. It is a 1986 Ford whose prior sole purpose, I am sure was to be a shag-mobile in which some ardent Van Halen could get laid. It has plush red velveteen seats, a fold out bed in the back, wood paneling and a custom-built shellacked cassette holder. I shit you not. It is like walking into a time machine. Of course I’m going to put that mud flap girl onto the handicap guy’s wheel chair and write on it “If this van is a rockin, don’t come a knockin!” This may somewhat diminish my pool of suburban mom drivers, but it will be worth it.
In addition to the van, the Forbes Norris Clinic is loaning me a wheel chair for my shower and Medicare is paying for the rental of a hospital bed. It has become too difficult for me to negotiate my queen size bed and a little precarious for caregivers to move me from wheelchair to shower bench, hence the durable medical loot. That brings this week’s bounty to approximately $25,000 worth of swag!
I count my self as somebody very blessed despite what I have had to deal with. This week Kaila and I went to Bodega Bay. I don’t think that I have spent any blog time telling you about Kaila. She is a wonderful violinist and composer and the wonderful mother of 10 year-old Lucy. Kaila has organized fundraisers for me, done fundraisers for me, shopped for me, rubbed my feet, cooked for me, dressed me, donated money to me…I can’t really list all the ways she has been an amazing friend to me and now an all-paid vacation as well. The highlight of the trip was the beach she found that lent out dune buggy style wheelchairs. And let me tell you something; I got to get me one of those!!! For the first time in over a year I was all the way down at the water’s edge. And just to be near crashing waves was the most miraculous feeling. I can’t even begin to describe it. The ocean was turquoise blue and the sun was glinting off of it. You could hear seagulls on the rocks jutting out from the water. And then came the waves. Wave number one and two were, from my perspective quite benign, though they did get Kaila’s feet very wet. Wave number three, however, picked the wheelchair all the way up and took it in the direction of the sea. I could feel myself tilting backwards a bit and I realized that we were no longer in control. Before things got too dramatic, a couple of guys came running to our aid and helped Kaila pull me away from the waves. It was quite an ordeal for everyone but me—I was just giddy about being in the water and having myself a little adventure.
On the way back from the hijinx with Kaila, we stopped at the Forbes-Norris Clinic where Mac and I got interviewed for the Jerry Lewis telethon. As you may know, I’m one of Jerry’s kids and Mac is therefore one of Jerry’s grandkids. The producer asked me about my hopes and dreams and I told her I didn’t have any - that my life was great just the way it is. I mean I had just come back from two days at the beach with a treasured friend who piled love on me and took me to the water’s edge. Who needs hopes and dreams? I know she wanted me to say I hoped for a cure for ALS but one day there will be a cure - whether I hope for it or not - and hoping for it won’t make it come any faster. Afterwards I wished that I had said that my hopes and dreams are that my son has the same kind of experience with love and friendship that I have had. I hope that he is on both the giving and the receiving end of the kind of love I’ve experienced . Plus, my hope and dream, as I have mentioned before, is that all the douche bags that have heretofore made decisions about health care will have their knee caps blown out and live in pain in a wheelchair. Isn’t that a beautiful thought? Finally, my hopes and dreams are that all the many amazing people in my life (you know who you are) can fully comprehend this great thing they have been a part of. This web of care and love is astonishing to me and I don’t know if my loved ones realize how special they are, not just to me.
I wouldn’t wish this disease on anyone, but it is really wonderful to have learned through this experience how much goodness there is in the world. I received a correspondence from a man who’s son has ALS and he said it is hard for him to see any silver lining in all of this except for the wonderful people that he had met and I heartily concur. And I have a shameful confession to make. When in the past a good friend has been seriously sick, the help I have given them is a minuscule drop in the bucket compared to the oceans of help that has been given to me. I always had good intentions but I did not do for Edith, Moira, Christina or Stephanie what they have done for me. They along with my other friends have taught me so much about the capacity we all have for doing good in the world. And it’s too late for me to help them back in any physical way, but I can at least tell all of you about the wonderful, wonderful humans that I know. We get tested at times, Moira said to me, and we get to reveal ourselves to ourselves. The people that I love have shown themselves to me and who they are is nothing short of staggering.
And then there’s that boy who can pull a sword from a paper cup, who in the biggest test of his life, shows me every day what courage is.
Mac told me a statistic the other day that made my blood boil. Of those who are among the top one percent in patient expenditures (that would be me) fifty percent have their policies canceled. Meanwhile among those patients on whom the company makes a profit, less than one in a thousand get their policy canceled. I have a modest proposal: we allow that top one percent of people with serious illnesses who drain these companies of their massive profits, to man the firing squad and on the wrong side of the guns, we line up all the people who make these sick choices (get it? sick?) that favor profit over a basic human need. Then we allow those very sick, terminally sick, chronically sick people (not including me because my trigger finger isn’t strong enough) to shoot those creeps in the knee caps and then get up in their faces as they writhe in pain say, “Ouch, it’s a good thing you have comprehensive health care coverage, because that’s got to hurt” I recommend the patients wait awhile before calling the ambulance. What – too much?
You know, honestly, although I hate the health care system in this silly country more than pretty much anything I hate in the world, I’m not sure the U.S. is ready for a single payer system. I know that sounds negative, but I have been on Medicare for under a year and if that is the best the government can do, I got to tell ya, we are in big trouble folks. I pay upwards of $800 a month, which includes my drugs, and I’m on the phone with people whose comprehension (with some rare and very friendly exceptions) is marginal at best and who are generally indifferent to the fact that they are talking to someone with a debilitating and incurable fatal illness. I deal with poorly worded letters that Edith and I (who as she puts it are “college educated and then some”) can barely make sense of. It’s staggering. And there is no accountability. There is no supervisor to complain to. You can’t call the same person back because they are part of this massive clearinghouse. So even though I think my Canadian friends and relatives have their heads in the sand when they complain about their own health care system and that every non-impoverished-third -world country has a better health care system than the U.S., I don’t hold out a lot of hope. I know that sounds negative and I know I’m going to get a lot of hopeful blog comments and I will delight in them - I will. I really do hope I am wrong. Every day I hope that we can have a health care system in this country like every other fucking country but I’m not so sure it’s going to happen folks. 46% of healthcare costs in this country are ALREADY paid by taxpayers and Americans don’t want socialized medicine? That is some special kind of stupid. So while Obama holds Town Hall meetings that look like a scene from Deliverance, people like me end up relying on the generosity of others and lucky for me there are a lot of generous people in my life.
On Friday I picked up my new van, which was totally free! I was on a waiting list through the Muscular Dystrophy Association and sure enough my name came up and a lovely lady whose husband had died of ALS, drove this van from Mount Shasta to Sacramento to deliver it to me. It is a 1986 Ford whose prior sole purpose, I am sure was to be a shag-mobile in which some ardent Van Halen could get laid. It has plush red velveteen seats, a fold out bed in the back, wood paneling and a custom-built shellacked cassette holder. I shit you not. It is like walking into a time machine. Of course I’m going to put that mud flap girl onto the handicap guy’s wheel chair and write on it “If this van is a rockin, don’t come a knockin!” This may somewhat diminish my pool of suburban mom drivers, but it will be worth it.
In addition to the van, the Forbes Norris Clinic is loaning me a wheel chair for my shower and Medicare is paying for the rental of a hospital bed. It has become too difficult for me to negotiate my queen size bed and a little precarious for caregivers to move me from wheelchair to shower bench, hence the durable medical loot. That brings this week’s bounty to approximately $25,000 worth of swag!
I count my self as somebody very blessed despite what I have had to deal with. This week Kaila and I went to Bodega Bay. I don’t think that I have spent any blog time telling you about Kaila. She is a wonderful violinist and composer and the wonderful mother of 10 year-old Lucy. Kaila has organized fundraisers for me, done fundraisers for me, shopped for me, rubbed my feet, cooked for me, dressed me, donated money to me…I can’t really list all the ways she has been an amazing friend to me and now an all-paid vacation as well. The highlight of the trip was the beach she found that lent out dune buggy style wheelchairs. And let me tell you something; I got to get me one of those!!! For the first time in over a year I was all the way down at the water’s edge. And just to be near crashing waves was the most miraculous feeling. I can’t even begin to describe it. The ocean was turquoise blue and the sun was glinting off of it. You could hear seagulls on the rocks jutting out from the water. And then came the waves. Wave number one and two were, from my perspective quite benign, though they did get Kaila’s feet very wet. Wave number three, however, picked the wheelchair all the way up and took it in the direction of the sea. I could feel myself tilting backwards a bit and I realized that we were no longer in control. Before things got too dramatic, a couple of guys came running to our aid and helped Kaila pull me away from the waves. It was quite an ordeal for everyone but me—I was just giddy about being in the water and having myself a little adventure.
On the way back from the hijinx with Kaila, we stopped at the Forbes-Norris Clinic where Mac and I got interviewed for the Jerry Lewis telethon. As you may know, I’m one of Jerry’s kids and Mac is therefore one of Jerry’s grandkids. The producer asked me about my hopes and dreams and I told her I didn’t have any - that my life was great just the way it is. I mean I had just come back from two days at the beach with a treasured friend who piled love on me and took me to the water’s edge. Who needs hopes and dreams? I know she wanted me to say I hoped for a cure for ALS but one day there will be a cure - whether I hope for it or not - and hoping for it won’t make it come any faster. Afterwards I wished that I had said that my hopes and dreams are that my son has the same kind of experience with love and friendship that I have had. I hope that he is on both the giving and the receiving end of the kind of love I’ve experienced . Plus, my hope and dream, as I have mentioned before, is that all the douche bags that have heretofore made decisions about health care will have their knee caps blown out and live in pain in a wheelchair. Isn’t that a beautiful thought? Finally, my hopes and dreams are that all the many amazing people in my life (you know who you are) can fully comprehend this great thing they have been a part of. This web of care and love is astonishing to me and I don’t know if my loved ones realize how special they are, not just to me.
I wouldn’t wish this disease on anyone, but it is really wonderful to have learned through this experience how much goodness there is in the world. I received a correspondence from a man who’s son has ALS and he said it is hard for him to see any silver lining in all of this except for the wonderful people that he had met and I heartily concur. And I have a shameful confession to make. When in the past a good friend has been seriously sick, the help I have given them is a minuscule drop in the bucket compared to the oceans of help that has been given to me. I always had good intentions but I did not do for Edith, Moira, Christina or Stephanie what they have done for me. They along with my other friends have taught me so much about the capacity we all have for doing good in the world. And it’s too late for me to help them back in any physical way, but I can at least tell all of you about the wonderful, wonderful humans that I know. We get tested at times, Moira said to me, and we get to reveal ourselves to ourselves. The people that I love have shown themselves to me and who they are is nothing short of staggering.
And then there’s that boy who can pull a sword from a paper cup, who in the biggest test of his life, shows me every day what courage is.
Wednesday, July 22, 2009
Check it out - 2 Blogs in 1 Week!
I thought I would be embarrassed the other day. I was wheeling around downtown Berkeley and suddenly and inexplicably I started to cry and I was seriously considering being embarrassed, but Harry Potter’s cloak of invisibility has nothing on a wheelchair. I swear, it’s amazing how nobody notices you if you’re a person alone in a wheelchair. So I just relaxed and let myself cry. It was a nice feeling.
One of the things that makes me luckier than most people is that I have a shitty memory for certain things. Like today, I couldn’t get my jeans button unbuttoned, and I was alone and I didn’t know how I was going to get my pants off, and I was trying to remember if I was ever able to use my left hand to unbutton my jeans, like ever in my life. And I could not visualize unbuttoning my jeans one-handed. I don’t know if that means that people don’t unbutton their jeans left-handed, or if I’ve just forgotten how to do these things so thoroughly. There are all kinds of things that I’ve forgotten, as though I was never able to do them, and I think that’s really a lucky thing. I don’t spend a lot of time bemoaning things that I’ve lost. OK, I spend a little time, but not that much.
On another note: I’m not one to brag, but I can now wipe my own ass. Just saying.
Poor Moira was typing blogs for me. She is so genteel and I am…not. I showed her my business card which I ordered to replace the one that said : Carla Zilbersmith – Good Singer. It made me too sad to give that one out so I got some saying: Carla Zilbersmith - Dying Woman. Moira who is far subtler than I said, “It should say Carla Zilbersmith – Femme Fatale.” Of course it should. That’s better on so many levels.
Moira is from another era. She arrived here in a time machine and I can only imagine that she switched places with some hapless soul born in 1962 who is stuck in the early 1900s, wondering when Twitter will be invented, why no one but Jack the Ripper will fuck her and what people have against the terms “douche bag” and “cock block.” Meanwhile, Moira wanders around the newsroom of her paper, armed only with a parasol, exclaiming “oh my” (and I’m pretty sure I heard a “my word”) while she wonders why her colleagues call her “dainty.”
I went to my friend Alison’s wedding last weekend, and she was a radiant and beautiful bride. Her hair looked great, her dress looked lovely, and I said a silent prayer of thanks to the gods that she heeded my advice and gotten a good bra, because it really made all the difference in the world to the dress. She has some big, beautiful girls and they deserve to be treated right! Her now-husband’s quiet, tender devotion to Alison made me cry. It was really lovely. [If you're reading this blog a second time, I have deleted an amusing story, in deference to a dear friend of mine. I don't regret telling the story, because that's what I do, but my friendship with this lovely woman is more important.]
Unfortunately I wasn’t able to handle staying for the wedding reception. I marvel at the fact that I, former wild woman/extrovert/party animal/big crowd lover, am almost paralyzed with anxiety when I’m in a big crowd. It becomes almost impossible to breathe. I start shaking. It’s crazy. But that’s how it is. And I have not got a bad enough memory to remember being the person that reveled in parties.
I was telling Barbara today that words have defined me -- either the written word or the spoken word -- for my entire life, and words are slowly being taken away from me. First I couldn’t act out words, then I couldn’t sing them. It’s harder and harder to type them, and late in the afternoon, difficult for people to understand me when I speak them. But I can still listen to them. And I’m hoping that I can reshape the way that I’m friends with people, so that they can feel comfortable just offering me their words or reading the words of others to me and not feel weird if I don’t reciprocate. Maybe I’ve talked so much in my lifetime that I used up all my words. (Moira, who is typing this, just said to me, “You don’t talk as much as some people.” Which could be interpreted as “You don’t smell as bad as some people.” OK. I concede that while I don’t hold the land speed record for talking, I love to talk. A whole fucking lot.)
I wonder if the reason I was crying as I wheeled around Berkeley was that I saw all the college students and I saw all the school supplies being sold, and I was reminded that Mac will be leaving soon. I fucking adore him. I know every parent goes through this, or, you know, most parents go through this (some parents probably wish they could go through this when their 40-year-old kids don’t move out, you know who you are, 40 yr old slacker.). But this feels a little more permanent. Mac and I will have our occasional weekends together and maybe a summer together, but not enough.
At least I will have left him lots and lots of words.
One of the things that makes me luckier than most people is that I have a shitty memory for certain things. Like today, I couldn’t get my jeans button unbuttoned, and I was alone and I didn’t know how I was going to get my pants off, and I was trying to remember if I was ever able to use my left hand to unbutton my jeans, like ever in my life. And I could not visualize unbuttoning my jeans one-handed. I don’t know if that means that people don’t unbutton their jeans left-handed, or if I’ve just forgotten how to do these things so thoroughly. There are all kinds of things that I’ve forgotten, as though I was never able to do them, and I think that’s really a lucky thing. I don’t spend a lot of time bemoaning things that I’ve lost. OK, I spend a little time, but not that much.
On another note: I’m not one to brag, but I can now wipe my own ass. Just saying.
Poor Moira was typing blogs for me. She is so genteel and I am…not. I showed her my business card which I ordered to replace the one that said : Carla Zilbersmith – Good Singer. It made me too sad to give that one out so I got some saying: Carla Zilbersmith - Dying Woman. Moira who is far subtler than I said, “It should say Carla Zilbersmith – Femme Fatale.” Of course it should. That’s better on so many levels.
Moira is from another era. She arrived here in a time machine and I can only imagine that she switched places with some hapless soul born in 1962 who is stuck in the early 1900s, wondering when Twitter will be invented, why no one but Jack the Ripper will fuck her and what people have against the terms “douche bag” and “cock block.” Meanwhile, Moira wanders around the newsroom of her paper, armed only with a parasol, exclaiming “oh my” (and I’m pretty sure I heard a “my word”) while she wonders why her colleagues call her “dainty.”
I went to my friend Alison’s wedding last weekend, and she was a radiant and beautiful bride. Her hair looked great, her dress looked lovely, and I said a silent prayer of thanks to the gods that she heeded my advice and gotten a good bra, because it really made all the difference in the world to the dress. She has some big, beautiful girls and they deserve to be treated right! Her now-husband’s quiet, tender devotion to Alison made me cry. It was really lovely. [If you're reading this blog a second time, I have deleted an amusing story, in deference to a dear friend of mine. I don't regret telling the story, because that's what I do, but my friendship with this lovely woman is more important.]
Unfortunately I wasn’t able to handle staying for the wedding reception. I marvel at the fact that I, former wild woman/extrovert/party animal/big crowd lover, am almost paralyzed with anxiety when I’m in a big crowd. It becomes almost impossible to breathe. I start shaking. It’s crazy. But that’s how it is. And I have not got a bad enough memory to remember being the person that reveled in parties.
I was telling Barbara today that words have defined me -- either the written word or the spoken word -- for my entire life, and words are slowly being taken away from me. First I couldn’t act out words, then I couldn’t sing them. It’s harder and harder to type them, and late in the afternoon, difficult for people to understand me when I speak them. But I can still listen to them. And I’m hoping that I can reshape the way that I’m friends with people, so that they can feel comfortable just offering me their words or reading the words of others to me and not feel weird if I don’t reciprocate. Maybe I’ve talked so much in my lifetime that I used up all my words. (Moira, who is typing this, just said to me, “You don’t talk as much as some people.” Which could be interpreted as “You don’t smell as bad as some people.” OK. I concede that while I don’t hold the land speed record for talking, I love to talk. A whole fucking lot.)
I wonder if the reason I was crying as I wheeled around Berkeley was that I saw all the college students and I saw all the school supplies being sold, and I was reminded that Mac will be leaving soon. I fucking adore him. I know every parent goes through this, or, you know, most parents go through this (some parents probably wish they could go through this when their 40-year-old kids don’t move out, you know who you are, 40 yr old slacker.). But this feels a little more permanent. Mac and I will have our occasional weekends together and maybe a summer together, but not enough.
At least I will have left him lots and lots of words.
Saturday, July 18, 2009
Copy That
My son Mac and I are devotees of the TV show “24.” We don’t have an actual television, so we rent the show on Netflix and we’ve watched it for the last year, one season at a time. Somewhere around the third season, we realized that the show was not, as we had assumed, a guilty pleasure, but a compelling show chock-full of moral nuance and complexity. Occasionally the writing can be a little bit lazy, but the acting is really good, and Jack Bauer, the antihero (who is, I feel compelled to add, played by Canadian actor Keifer Sutherland), reflects the evolving zeitgeist of America for the last eight or nine years. All the questions we’ve asked ourselves after 9/11 about due process, civil liberties, and that delicate balance between protecting our citizens and honoring the law are interesting questions to ask. As a result, Mac and I have been thoroughly hooked.
So last night, we were on the final disk of Season 7. It’s not outside the realm of possibility that I will die before Netflix releases Season 8. And so this is probably our last season of watching the show. Mac had mentioned to me earlier that this was our final season and we both did our best not to cry. So there we were, watching the second to the last episode, and Jack Bauer’s daughter Kim was now a mother and she’d named her first-born daughter Terry, after her dead mother who was killed in Season 1. And Maclen says, “What an idiot. Why’d she name her kid after her mom? She needs to move on, It’s been six seasons already.” I responded in a calm, measured way, as any mother would. I said, “You are totally full of shit. What the fuck are you talking about? That’s a wonderful gesture.” And Mac says, “She needs to move on. She can’t spend her whole life grieving her mother.” And I said, “Naming the kid after the mother is a way for her to move on.” We left it at that, but I could tell he was utterly unconvinced.
Finally, we were about to begin the final episode. Episode 24 of Season 7. Before we began I told Mac to pause the DVD player and I said to him, “Sir, it has been an honor to serve with you these past seven seasons. I’m proud to have watched this show with you.” And Mac responded, “As am I, sir. As am I.” And we smiled at each other and watched our very last “24” episode. I know, I know, it's a FOX show with lots of explosions, but this was a heavy event for me.
Much to my disappointment, despite all promises implied ( SPOILER ALERT. DO NOT CONTINUE READING IF YOU WANT TO BE SURPRISED BY THE ENDING. ALSO DO NOT CONTINUE READING THIS SENTENCE IF YOU DON’T WANT TO KNOW THAT TONY SOPRANO IS DEAD. . . . WHOOPS!) Jack Bauer was not killed off at the very end of the season, even though he had a fatal and incurable illness. At the end of the season, his daughter volunteered her body for an experimental and never-been-proven-successful stem cell procedure. So you know he’s going to come back for the final season. I was really disappointed in this plot cop-out, and Mac said to me, “What do you have against last-minute experimental stem cells saving the day and making the main character survive a fatal and incurable illness?” And I had to admit he had a point.
So as I was getting ready for bed, he was helping me as he always does, pulling the blankets over me, putting my breathing machine on for me and right before I said goodnight to him I looked him in the eye and I said, “Mac, after I’m dead, if you have a daughter, it would mean so much to me if you would call her . . . Terry.” And this big grin and one sort of staccato guffaw burst out of Mac and he leaned over himself and slapped his thigh. His eyes beam when he laughs hard, just like they did when he was 3. And he said, “Wow, that will be a tough one to explain to my wife. We have to call her Terry for my mom…Carla”
As I told Edith later, making Mac laugh is like ringing the bell with a giant hammer at the state fair.
So last night, we were on the final disk of Season 7. It’s not outside the realm of possibility that I will die before Netflix releases Season 8. And so this is probably our last season of watching the show. Mac had mentioned to me earlier that this was our final season and we both did our best not to cry. So there we were, watching the second to the last episode, and Jack Bauer’s daughter Kim was now a mother and she’d named her first-born daughter Terry, after her dead mother who was killed in Season 1. And Maclen says, “What an idiot. Why’d she name her kid after her mom? She needs to move on, It’s been six seasons already.” I responded in a calm, measured way, as any mother would. I said, “You are totally full of shit. What the fuck are you talking about? That’s a wonderful gesture.” And Mac says, “She needs to move on. She can’t spend her whole life grieving her mother.” And I said, “Naming the kid after the mother is a way for her to move on.” We left it at that, but I could tell he was utterly unconvinced.
Finally, we were about to begin the final episode. Episode 24 of Season 7. Before we began I told Mac to pause the DVD player and I said to him, “Sir, it has been an honor to serve with you these past seven seasons. I’m proud to have watched this show with you.” And Mac responded, “As am I, sir. As am I.” And we smiled at each other and watched our very last “24” episode. I know, I know, it's a FOX show with lots of explosions, but this was a heavy event for me.
Much to my disappointment, despite all promises implied ( SPOILER ALERT. DO NOT CONTINUE READING IF YOU WANT TO BE SURPRISED BY THE ENDING. ALSO DO NOT CONTINUE READING THIS SENTENCE IF YOU DON’T WANT TO KNOW THAT TONY SOPRANO IS DEAD. . . . WHOOPS!) Jack Bauer was not killed off at the very end of the season, even though he had a fatal and incurable illness. At the end of the season, his daughter volunteered her body for an experimental and never-been-proven-successful stem cell procedure. So you know he’s going to come back for the final season. I was really disappointed in this plot cop-out, and Mac said to me, “What do you have against last-minute experimental stem cells saving the day and making the main character survive a fatal and incurable illness?” And I had to admit he had a point.
So as I was getting ready for bed, he was helping me as he always does, pulling the blankets over me, putting my breathing machine on for me and right before I said goodnight to him I looked him in the eye and I said, “Mac, after I’m dead, if you have a daughter, it would mean so much to me if you would call her . . . Terry.” And this big grin and one sort of staccato guffaw burst out of Mac and he leaned over himself and slapped his thigh. His eyes beam when he laughs hard, just like they did when he was 3. And he said, “Wow, that will be a tough one to explain to my wife. We have to call her Terry for my mom…Carla”
As I told Edith later, making Mac laugh is like ringing the bell with a giant hammer at the state fair.
Tuesday, July 14, 2009
Fundraiser for yours truly
The following message is from my dear friend and a wonderful performer, W. Allen Taylor:
If you are free on Sunday, 7/19 between 3-6pm, please join me for a special musical fundraiser at Anna's Jazz Island. I'll be singing jazz standards and raising money for my good friend and former colleague, Carla Zilbersmith, who is currently battling Amyotrophic Lateral Sclerosis or ALS (Lou Gehrig's Disease).
The band will feature some of the bay area's finest musicians and if you like your jazz straight-ahead, you won't be disappointed...they will definitely be swinging! The suggested donation for the afternoon is $25 (anything above will be greatly appreciated but no one will be turned away for lack of funds).
Anna's Jazz Island is located in downtown Berkeley at 2120 Allston Way (just east of Shattuck Ave.). The best parking garage is on Allston Way between Shattuck and Milvia Street (next block west), although street parking is available if you have good parking karma.
For more information, check out the website of this premiere venue for jazz at www.annasjazzisland.com. Please feel free to forward this info to anyone who loves this music and/or would love to support Carla.
Hope to see you there.
Peace and love,
Allen
Here's me and Allen in a pre-wheelchair publicity photo. Damn, we're good lookin'!:
If you are free on Sunday, 7/19 between 3-6pm, please join me for a special musical fundraiser at Anna's Jazz Island. I'll be singing jazz standards and raising money for my good friend and former colleague, Carla Zilbersmith, who is currently battling Amyotrophic Lateral Sclerosis or ALS (Lou Gehrig's Disease).
The band will feature some of the bay area's finest musicians and if you like your jazz straight-ahead, you won't be disappointed...they will definitely be swinging! The suggested donation for the afternoon is $25 (anything above will be greatly appreciated but no one will be turned away for lack of funds).
Anna's Jazz Island is located in downtown Berkeley at 2120 Allston Way (just east of Shattuck Ave.). The best parking garage is on Allston Way between Shattuck and Milvia Street (next block west), although street parking is available if you have good parking karma.
For more information, check out the website of this premiere venue for jazz at www.annasjazzisland.com. Please feel free to forward this info to anyone who loves this music and/or would love to support Carla.
Hope to see you there.
Peace and love,
Allen
Here's me and Allen in a pre-wheelchair publicity photo. Damn, we're good lookin'!:
Saturday, July 11, 2009
Young Soldiers
If you’ve been following this blog, or if you know me, you know that I never say that ALS is unfair. And you know that I’ve said before that I don’t want to be the person in the position of deciding who gets to live, who gets to die, who suffers, and who has a happy life and I still believe that with respect to me. But on the 4th of July, for the first time, I experienced a profound sense of the unfairness of ALS when I met Corey and Johnny, two absolutely gorgeous young teenage boys, both of whom have ALS. Bobby Abernathy, my favorite cowboy, introduced me first to Johnny’s family. I wasn’t sure which one of them had ALS, except for the very slight shift in the tone of Bobby’s voice when he introduced Johnny. So I asked Johnny, “Are you the one with ALS?” and he responded, “Yeah,” and I said “Well, that’s bullshit!” Bobby quickly said, “You know, Carla uses some colorful language, you’ll have to excuse her.” Johnny and his mom simply said something like, “No, I think bullshit’s a good word.” I spoke briefly to his parents and his dad said, “It’s not fair,” and all of a sudden I realized that my plan of accepting the randomness of ALS had stopped where these 2 boys’ lives began.
Though just as sweet, Corey was a vivid contrast to the quiet Johnny; cheerful, outgoing, willing to stand toe-to-toe with this outrageous middle-aged woman, as he showed me his cane made out of a bull’s penis.
I felt like I was watching young men go off to war.
It has always seemed so stupid to me that we send young, gorgeous people off to die for us when really we should send old people, who’ve already had a chance at life. Also, old people are a lot meaner and crankier in general than young people (yeah, I said it!). Just try to get in front of an old person in the line-up at the grocery store. They will fucking cut you! Those old people can be mean and probably much better at killing the enemy. Plus, they don’t contribute as much to society. They complain all the time about their aches and pains – hell, they could probably kill the enemy just by explaining what’s going on with their joints and I dare you to blog comment without sounding cranky, old people. Simmer down and take your irony supplements.
But I digress as always.
These boys were like beautiful young soldiers and it was all I could do to hold it together. I just tried to do my Tourettes-like joking so I wouldn’t just burst into tears in one of those awkward middle-aged moments that makes teen boys cringe. It made me think of the Archibald MacLeish poem, The Young Dead Soldiers:
“The young dead soldiers do not speak....
They have a silence that speaks for them at night and when the clock counts.
They say: We were young. We have died. Remember us. ….
They say: Our deaths are not ours; they are yours; they will mean what you make them…..
They say: We leave you our deaths. Give them their meaning.
We were young, they say. We have died. Remember us.”
Our deaths are not ours; they are yours. I looked at their parents. I just couldn’t imagine what they were going through and I looked over at my dad and I thought about all those times he wished that he could take the ALS instead of me, and I thought about my son and how easy it would be for me to take a bullet for him or jump in front of a big truck and push him out of the way. I mean really easy – a no-brainer. I wanted to take on some weight for these boys and their families. I wanted to take their ALS from them, but of course I already have it. That may sound like bullshit, but it’s not.
When people talk about their sadness about the death of a young person, they tend to talk about the person they might have become. I don’t. Their loss is sad enough in real time. I don’t need to think about what these two kids might have done, I grieve for who they are right now. There’s nothing to me more beautiful than someone in their teens or early twenties. They were always my favorite age to teach, because they are a journal with mostly blank pages, a walking, talking action adventure, a lesson in sincerity and integrity. That’s what I mourn.
I had a dream the other night about Mac’s wedding. Kathy, Edith, Wendy & Kris were in a circle with him and they were all dancing the mothers- dance-with-grooms dance. When I woke up my face was all wet and my tears were still warm. I don’t really know what is harder: to leave a beautiful boy on his own or to watch him go off to fight a battle that is too many miles away from you. I don’t know how any of this can ever be okay for those 3 young men.
Edith and I went ring shopping yesterday. I’ve never had a really nice piece of jewelry in my life. If I’d had a nice wedding ring, I probably wouldn’t have pitched it into the Bay, I would have just hocked it. But I didn’t. So I got this idea that I really wanted Mac to have a beautiful engagement ring to give to some one, someday and be able to say, “This was my Mom’s.” For some reason, it makes me really happy to think about that. I spent money that I have no business spending and that I should be saving up for the miserable fucking rainy days ahead, but fuck it. If I can’t dance with him at his wedding, at least a part of me will be there.
P.S. If my daughter-in-law is reading this in years to come, it’s okay if you hate the ring and want to get another one.
Though just as sweet, Corey was a vivid contrast to the quiet Johnny; cheerful, outgoing, willing to stand toe-to-toe with this outrageous middle-aged woman, as he showed me his cane made out of a bull’s penis.
I felt like I was watching young men go off to war.
It has always seemed so stupid to me that we send young, gorgeous people off to die for us when really we should send old people, who’ve already had a chance at life. Also, old people are a lot meaner and crankier in general than young people (yeah, I said it!). Just try to get in front of an old person in the line-up at the grocery store. They will fucking cut you! Those old people can be mean and probably much better at killing the enemy. Plus, they don’t contribute as much to society. They complain all the time about their aches and pains – hell, they could probably kill the enemy just by explaining what’s going on with their joints and I dare you to blog comment without sounding cranky, old people. Simmer down and take your irony supplements.
But I digress as always.
These boys were like beautiful young soldiers and it was all I could do to hold it together. I just tried to do my Tourettes-like joking so I wouldn’t just burst into tears in one of those awkward middle-aged moments that makes teen boys cringe. It made me think of the Archibald MacLeish poem, The Young Dead Soldiers:
“The young dead soldiers do not speak....
They have a silence that speaks for them at night and when the clock counts.
They say: We were young. We have died. Remember us. ….
They say: Our deaths are not ours; they are yours; they will mean what you make them…..
They say: We leave you our deaths. Give them their meaning.
We were young, they say. We have died. Remember us.”
Our deaths are not ours; they are yours. I looked at their parents. I just couldn’t imagine what they were going through and I looked over at my dad and I thought about all those times he wished that he could take the ALS instead of me, and I thought about my son and how easy it would be for me to take a bullet for him or jump in front of a big truck and push him out of the way. I mean really easy – a no-brainer. I wanted to take on some weight for these boys and their families. I wanted to take their ALS from them, but of course I already have it. That may sound like bullshit, but it’s not.
When people talk about their sadness about the death of a young person, they tend to talk about the person they might have become. I don’t. Their loss is sad enough in real time. I don’t need to think about what these two kids might have done, I grieve for who they are right now. There’s nothing to me more beautiful than someone in their teens or early twenties. They were always my favorite age to teach, because they are a journal with mostly blank pages, a walking, talking action adventure, a lesson in sincerity and integrity. That’s what I mourn.
I had a dream the other night about Mac’s wedding. Kathy, Edith, Wendy & Kris were in a circle with him and they were all dancing the mothers- dance-with-grooms dance. When I woke up my face was all wet and my tears were still warm. I don’t really know what is harder: to leave a beautiful boy on his own or to watch him go off to fight a battle that is too many miles away from you. I don’t know how any of this can ever be okay for those 3 young men.
Edith and I went ring shopping yesterday. I’ve never had a really nice piece of jewelry in my life. If I’d had a nice wedding ring, I probably wouldn’t have pitched it into the Bay, I would have just hocked it. But I didn’t. So I got this idea that I really wanted Mac to have a beautiful engagement ring to give to some one, someday and be able to say, “This was my Mom’s.” For some reason, it makes me really happy to think about that. I spent money that I have no business spending and that I should be saving up for the miserable fucking rainy days ahead, but fuck it. If I can’t dance with him at his wedding, at least a part of me will be there.
P.S. If my daughter-in-law is reading this in years to come, it’s okay if you hate the ring and want to get another one.
Thursday, July 09, 2009
Thursday, July 02, 2009
Dear Previous Winners of "Survivor": You are all Pussies.
Do you remember the part in the book, “Tuesdays with Morrie” where Mitch Albom wipes his former teacher’s ass after he takes a poop? You don’t? Me neither. I want my money back, ALS!
I was with Jamie the other night, (my former student/ now caregiver) and thinking to myself how each thing that I’ve had to say goodbye to - walking, singing, acting, feeding myself - each one was devastating in its own way, but afterwards I’d think, ‘look, I’m still standing in the ring after all this.’ But when a former student wipes my ass, I have to say that I’m hanging on the ropes, looking over to Burgess Meredith, and imploring him to throw in the towel. “Come on Mick, give me a break!! “ But the towel does not get thrown in. “Oh, c’mon, people! What’s a girl gotta do to get a towel up in this bitch?”
Wendy thought that I wouldn’t write this in the blog because it’s TMI (too much information). You’d think that after 17 years, she would have figured out that TMI barely exists for me!
So yeah, the last week or two, I had a terrible cold, then my caregiver (I’m not saying which one) stepped on my thumb and now I’m wearing a cast that covers my hand and wrist. As a result I cannot do the last few things that I was able to do, because she had the temerity to step on my good hand rather than my bad one! As I told Kris: everyone tells you about how a tennis serve or a free throw is “all in the wrist” but they never tell you the wrist bend is integral to proper butt maintenance. Well, I’m here to tell you that the same tenet applies to wiping. It’s all in the wrist, baby.
Sometimes I just want so hard to believe in god so I can scream “Really God? Really? Now this shit??? Do I look like fucking Chevy Chase? This is not National Lampoon Vacation 12 – a movie series by the way that seriously calls Your existence into question!” And then god (who is sooo arrogant) would say “Clearly the Vacation movies are too subtle for you, Philistine, now stifle or I’ll really give you something to bitch about.”
So I’m going through a lot of my stuff, because I want to make dividing things less complicated for my friends and family and Mac when I die. I have everything labeled so that there are no questions of claim, because just saying “paintings” in the will is a little too vague.
So when I was talking over all of this with Wendy, she said to me “I don’t want any of that stuff, I just want your glasses…” And the tears rushed to my eyes and she said, “because I want to see the world the way you do.” And of course much crying and hugging ensued. When I related that story to Jamie later that night, she, in her own inimitable way, responded “Tell her it doesn’t work that way, things will just look all blurry”. Leave it to somebody young to put everything into perspective. But it’s funny, when I go through all this stuff, it becomes clearer and clearer to me that none of this is going to matter at all to me when I’m gone. So I’m telling everybody “just pretend to humor me and when I’m dead, do whatever the fuck you want with my shit”.
Somehow there’s some comfort in settling my affairs and organizing everything. Probably I’m thinking about this because I’m about to undergo a major loss. Mac will be going away to UCSD for college. The first major ending in my adult life…oh yeah, not counting my marriage…I keep forgetting about that guy.
But I get comfort in taking pictures of pieces of jewelry that I want to save for Mac or making lists of things that I need to take care of before I die. Kind of like when I used to need to tidy up my apartment before I could sit down to write a play. Maybe getting my affairs in order is the apartment, and the play is whatever journey I have to go on next.
My brother wrote this wonderful piece the other day, which I wish I could share with you, but if I am “TMI” he’s “Don’t Ask Don’t Tell”. Anyway, he talked about his restlessness and his need to go from Palm Pre to computer email to cell phone, and how one is not going to find god on that kind of restless technological bender that we’ve all been on. And in the meantime, maybe god is trying to find us, but we’re too busy running around to be found. And It resonated so much for me, because amidst all these hits I’m taking, while I’m lying against the ropes like Rocky Balboa (played by Chevy Chase), there are still these moments of indescribable happiness; like sitting in the garden today and hearing a summer camp full of kids walk by, and how the din of their excitement and yells drowned out everything- the birds chirping in the trees, the whoosh of the water fountain in the backyard, the plums falling onto the ground, and it was a magical moment, so simple and so wonderful. Or watching Mayra up in the tallest branches of the plum tree, shaking it and wondering if she was going to fall and break her neck, but at the same time, being so delighted by this young woman climbing to the top of this tree. And then the hummingbirds. I never imagined such a miraculous thing as living in a place where hummingbirds visit me everyday. It’s magical, this place, and I’ve been so busy running around all my life, until now, the hummingbirds couldn’t find me. But like my brother says, we can’t be found until we can be still,
So here I am, battered and bruised and still life never ever ceases to amaze me. I’ve been going through this over two years (from the 1st fall in May 07) and I’m just stunned at how things can be so horrible and so wonderful at the same time.
It’s like life is The Rocky Horror Picture Show.
I was with Jamie the other night, (my former student/ now caregiver) and thinking to myself how each thing that I’ve had to say goodbye to - walking, singing, acting, feeding myself - each one was devastating in its own way, but afterwards I’d think, ‘look, I’m still standing in the ring after all this.’ But when a former student wipes my ass, I have to say that I’m hanging on the ropes, looking over to Burgess Meredith, and imploring him to throw in the towel. “Come on Mick, give me a break!! “ But the towel does not get thrown in. “Oh, c’mon, people! What’s a girl gotta do to get a towel up in this bitch?”
Wendy thought that I wouldn’t write this in the blog because it’s TMI (too much information). You’d think that after 17 years, she would have figured out that TMI barely exists for me!
So yeah, the last week or two, I had a terrible cold, then my caregiver (I’m not saying which one) stepped on my thumb and now I’m wearing a cast that covers my hand and wrist. As a result I cannot do the last few things that I was able to do, because she had the temerity to step on my good hand rather than my bad one! As I told Kris: everyone tells you about how a tennis serve or a free throw is “all in the wrist” but they never tell you the wrist bend is integral to proper butt maintenance. Well, I’m here to tell you that the same tenet applies to wiping. It’s all in the wrist, baby.
Sometimes I just want so hard to believe in god so I can scream “Really God? Really? Now this shit??? Do I look like fucking Chevy Chase? This is not National Lampoon Vacation 12 – a movie series by the way that seriously calls Your existence into question!” And then god (who is sooo arrogant) would say “Clearly the Vacation movies are too subtle for you, Philistine, now stifle or I’ll really give you something to bitch about.”
So I’m going through a lot of my stuff, because I want to make dividing things less complicated for my friends and family and Mac when I die. I have everything labeled so that there are no questions of claim, because just saying “paintings” in the will is a little too vague.
So when I was talking over all of this with Wendy, she said to me “I don’t want any of that stuff, I just want your glasses…” And the tears rushed to my eyes and she said, “because I want to see the world the way you do.” And of course much crying and hugging ensued. When I related that story to Jamie later that night, she, in her own inimitable way, responded “Tell her it doesn’t work that way, things will just look all blurry”. Leave it to somebody young to put everything into perspective. But it’s funny, when I go through all this stuff, it becomes clearer and clearer to me that none of this is going to matter at all to me when I’m gone. So I’m telling everybody “just pretend to humor me and when I’m dead, do whatever the fuck you want with my shit”.
Somehow there’s some comfort in settling my affairs and organizing everything. Probably I’m thinking about this because I’m about to undergo a major loss. Mac will be going away to UCSD for college. The first major ending in my adult life…oh yeah, not counting my marriage…I keep forgetting about that guy.
But I get comfort in taking pictures of pieces of jewelry that I want to save for Mac or making lists of things that I need to take care of before I die. Kind of like when I used to need to tidy up my apartment before I could sit down to write a play. Maybe getting my affairs in order is the apartment, and the play is whatever journey I have to go on next.
My brother wrote this wonderful piece the other day, which I wish I could share with you, but if I am “TMI” he’s “Don’t Ask Don’t Tell”. Anyway, he talked about his restlessness and his need to go from Palm Pre to computer email to cell phone, and how one is not going to find god on that kind of restless technological bender that we’ve all been on. And in the meantime, maybe god is trying to find us, but we’re too busy running around to be found. And It resonated so much for me, because amidst all these hits I’m taking, while I’m lying against the ropes like Rocky Balboa (played by Chevy Chase), there are still these moments of indescribable happiness; like sitting in the garden today and hearing a summer camp full of kids walk by, and how the din of their excitement and yells drowned out everything- the birds chirping in the trees, the whoosh of the water fountain in the backyard, the plums falling onto the ground, and it was a magical moment, so simple and so wonderful. Or watching Mayra up in the tallest branches of the plum tree, shaking it and wondering if she was going to fall and break her neck, but at the same time, being so delighted by this young woman climbing to the top of this tree. And then the hummingbirds. I never imagined such a miraculous thing as living in a place where hummingbirds visit me everyday. It’s magical, this place, and I’ve been so busy running around all my life, until now, the hummingbirds couldn’t find me. But like my brother says, we can’t be found until we can be still,
So here I am, battered and bruised and still life never ever ceases to amaze me. I’ve been going through this over two years (from the 1st fall in May 07) and I’m just stunned at how things can be so horrible and so wonderful at the same time.
It’s like life is The Rocky Horror Picture Show.
Tuesday, June 30, 2009
Saturday, June 27, 2009
Comments
Someone who reads this blog recently asked me what I think about the blog comments. Now you probably noticed that I don’t comment on comments very often and you probably noticed that on certain blogs there are a large volume of comments. It’s really just too hard for me to comment on them all and although a lot of sites on the internet are intended as a cyber dialogue, this one is really more of a monologue with occasional responses and that’s just how it has to be.
Having said that, I have to tell you that I get really excited every time I see that someone has sent in a comment. And I love getting your comments. I love your kindness and unforced compassion. I love your insights. I love the way you address one another. I love the way you share things about your lives and struggles. In short, the blog comments are an important part of my life, and so you, Muselings, have become part of my wonderful circle of loving friends, whether I know you or not.
A couple of other things about the blog comments -- sometimes people ask me why their comment didn’t get published and I don’t usually feel like I need to answer that because the obvious answer is: it’s my blog, deal with it, but just to let you know, I made a conscious decision to make this blog a place where I don’t back off from talking about the things that scare me or cause me grief but at the same time, I don’t want it to become a negative place. If people want to say bad shit about other people, they can go to yelp.com. I, however, really don’t want that on my blog. Believe me, there are a couple of people in my life –well, at least one…let’s just say there’s not enough band width to go there. So I don’t. This blog is a special place for me and I don’t want to turn it into something ugly.
Another thing about your comments – sometimes people write such complimentary things about me that I get a little scared because I feel like Harold Hill in The Music Man and people are following me as my 76 trombones lead the big parade… of bullshit. Trouble in Blogger City. When people seem to look at me as something bigger than I am, better than I am, I really do feel like a con artist and that Shaggy and Velma and the rest of the Scooby-Doo Gang are going to tear off my mask and reveal me for the average, petty, normal person that I am and I’m going to have to say, “Yeah, and I could’ve gotten away with it, too if it weren’t for you pesky Muselings and your dog.”
Some of this is my insecurity and some of it is because I only reveal one dimension of myself on this blog. You see, this is not an entirely unexpurgated version of my thoughts. I try really hard to be honest but I also leave out the stuff that I think would be hurtful to any individuals (except for Dr. Evan Collier and Julie the receptionist. I’ve made it clear that they’re douche-bags. Or rather, he’s a douche-bag, and she’s a gate-keeping bridge troll,. I’m really proud of that insult.) But other than that, I try as hard as I can to not out the douche-bags in my life, including me because I can be a shit-sack sometimes myself. And if you don’t believe me, just ask my son.
Now I’m rambling. What else do I feel about the blog comments? I feel like I’ve touched a nerve. I’ve hit on a place that I thought was uniquely mine -- my need to find meaning and beauty amidst my suffering, but I realize now that it’s the human condition. We all want to find that. We all want to know that while our time on this earth, may not have a definable purpose, it has moments of grace. And I’m really proud that even though I’m dealing with a lot, I can still offer something to people. So when I say the blog is my lifeline, it’s not even so much about what I write. It’s about knowing that what I write is being heard and that hearing it is helpful to people. I can’t express to you how great a feeling that is.
The internet and cell phones and Facebook and texting and Twitter (the aptly named Twitter, for twits with nothing better to do but boil the complexity of their life into 140 characters – and yes, I know I’ll regret those words when I’m typing with my fucking chin…coming soon!) .All of these things have an alienating quality to me because the more we use them, the more we’re insulated from our own experience with other people. I remember when I was a busy person, feeling a bit of disappointment when I would get an actual person on the phone because I would have to go through the niceties of getting caught up rather than give them “just the facts m’am”. And so we’ve all become this culture of Jack Webb/Joe Fridays, wanting just the facts. What a major Drag...net.
Anyway, I find it amazing that what I think of as alienating has become a public place where we can all meet and connect with each other. It’s just astonishing to me. Even as I draw closer and closer to eschewing electronic forms of communication almost completely and just trying to hug and hold hands and snuggle with people instead; the blog is there and it’s real and it means a lot to me. You mean a lot to me. So for all the times you’ve written and encouraged me, for all the times you’ve boosted me, for all the times you’ve courageously shared something painful that’s happening in your life, I thank you from the bottom of my heart. If you’ve done nothing else, you’ve buoyed me in a difficult time and you’ve left something utterly amazing - in the real sense of the word amazing, - through which my son can remember me. Imagine him looking at your comments or showing them to his children years from now.
Can you think of a greater gift?
And you’ve given that to me.
So I can say without a trace of disingenuousness, I really love you all.
Having said that, I have to tell you that I get really excited every time I see that someone has sent in a comment. And I love getting your comments. I love your kindness and unforced compassion. I love your insights. I love the way you address one another. I love the way you share things about your lives and struggles. In short, the blog comments are an important part of my life, and so you, Muselings, have become part of my wonderful circle of loving friends, whether I know you or not.
A couple of other things about the blog comments -- sometimes people ask me why their comment didn’t get published and I don’t usually feel like I need to answer that because the obvious answer is: it’s my blog, deal with it, but just to let you know, I made a conscious decision to make this blog a place where I don’t back off from talking about the things that scare me or cause me grief but at the same time, I don’t want it to become a negative place. If people want to say bad shit about other people, they can go to yelp.com. I, however, really don’t want that on my blog. Believe me, there are a couple of people in my life –well, at least one…let’s just say there’s not enough band width to go there. So I don’t. This blog is a special place for me and I don’t want to turn it into something ugly.
Another thing about your comments – sometimes people write such complimentary things about me that I get a little scared because I feel like Harold Hill in The Music Man and people are following me as my 76 trombones lead the big parade… of bullshit. Trouble in Blogger City. When people seem to look at me as something bigger than I am, better than I am, I really do feel like a con artist and that Shaggy and Velma and the rest of the Scooby-Doo Gang are going to tear off my mask and reveal me for the average, petty, normal person that I am and I’m going to have to say, “Yeah, and I could’ve gotten away with it, too if it weren’t for you pesky Muselings and your dog.”
Some of this is my insecurity and some of it is because I only reveal one dimension of myself on this blog. You see, this is not an entirely unexpurgated version of my thoughts. I try really hard to be honest but I also leave out the stuff that I think would be hurtful to any individuals (except for Dr. Evan Collier and Julie the receptionist. I’ve made it clear that they’re douche-bags. Or rather, he’s a douche-bag, and she’s a gate-keeping bridge troll,. I’m really proud of that insult.) But other than that, I try as hard as I can to not out the douche-bags in my life, including me because I can be a shit-sack sometimes myself. And if you don’t believe me, just ask my son.
Now I’m rambling. What else do I feel about the blog comments? I feel like I’ve touched a nerve. I’ve hit on a place that I thought was uniquely mine -- my need to find meaning and beauty amidst my suffering, but I realize now that it’s the human condition. We all want to find that. We all want to know that while our time on this earth, may not have a definable purpose, it has moments of grace. And I’m really proud that even though I’m dealing with a lot, I can still offer something to people. So when I say the blog is my lifeline, it’s not even so much about what I write. It’s about knowing that what I write is being heard and that hearing it is helpful to people. I can’t express to you how great a feeling that is.
The internet and cell phones and Facebook and texting and Twitter (the aptly named Twitter, for twits with nothing better to do but boil the complexity of their life into 140 characters – and yes, I know I’ll regret those words when I’m typing with my fucking chin…coming soon!) .All of these things have an alienating quality to me because the more we use them, the more we’re insulated from our own experience with other people. I remember when I was a busy person, feeling a bit of disappointment when I would get an actual person on the phone because I would have to go through the niceties of getting caught up rather than give them “just the facts m’am”. And so we’ve all become this culture of Jack Webb/Joe Fridays, wanting just the facts. What a major Drag...net.
Anyway, I find it amazing that what I think of as alienating has become a public place where we can all meet and connect with each other. It’s just astonishing to me. Even as I draw closer and closer to eschewing electronic forms of communication almost completely and just trying to hug and hold hands and snuggle with people instead; the blog is there and it’s real and it means a lot to me. You mean a lot to me. So for all the times you’ve written and encouraged me, for all the times you’ve boosted me, for all the times you’ve courageously shared something painful that’s happening in your life, I thank you from the bottom of my heart. If you’ve done nothing else, you’ve buoyed me in a difficult time and you’ve left something utterly amazing - in the real sense of the word amazing, - through which my son can remember me. Imagine him looking at your comments or showing them to his children years from now.
Can you think of a greater gift?
And you’ve given that to me.
So I can say without a trace of disingenuousness, I really love you all.
Sunday, June 14, 2009
How Do You Spell Love?
Allison, my sister-in-love, relayed the following story to me:
I was making dinner last night. Atticus and Jason were doing an alphabet puzzle in the yellow room.
Atticus: How do you spell "ear"?I
Jason: e-a-r
Atticus: How do you spell "eye"?
Jason: e-y-e.
Atticus: How do you spell "nose"?
Jason: n-o-s-e
Atticus, climbing up Jason and putting his arms around his neck, nuzzling into him: How do you spell "love"?
I'm sure Jason told him how to spell "love," but I was too busy being choked up to hear it.
Back here in Berkeley, Bella reached over and slipped her tiny hand into mine and patted me on the arm with her spare hand and smiled. A warm feeling gushed through my body. She and Sofia and Matt and I had been watching the demo reel of the documentary being done about me. They drive across the bridge to help and to visit every couple of weeks or so. Matt cooked his delectable cow-free stroganoff and Sofia fed me and helped out with bathroom duty. To watch the demo, Bella had parked my spare wheelchair (the Yugo) next to my big one (the Benz). There we sat, side by side. She is only six – her feet dangle high above the chair’s footplates -yet the depth of her compassion blows my mind. To our right, Sofia started crying about something in the demo and Bella, without glancing over, reached out and offered her mom the other little hand and the three of us just sat there like that, hand in hand in hand.
Earlier that afternoon, Bella read me a story (The Paper Bag Princess - one of my favorites) and she inflected her voice like your favorite elementary school teacher did and gave the titular character, Elizabeth, an English accent. And it was not bad either. I’m still struck by this six-year old girl reading the grownup a story, just as I was struck by my niece and nephew pushing me in my wheel chair. It brings to mind a poem that my friend Alison wrote once called: “Consider the Generosity of a One-year Old.”
In response to an email yesterday asking me to grade my mood and health between one and ten, I had told Kaila, that I was a .5, so this morning I got a call from her daughter, ten-year old Lucy, wanting to know if I had upgraded to a one or higher yet.
Children’s enormous hearts. What can I even say?
Last week was one of those weeks where I wonder if I’m really up for this. If I really have the strength to keep getting up every day and going on and then suddenly, I’m with these kids, playing bumper cars in the wheel chairs, watching a stupid movie, or – amazingly - being shown an open heart - a level of compassion and love that adults like me are often afraid of sharing.
And I think: yeah, I can keep going.
Lee, my respiratory therapist arranged for me to borrow a coughing machine. It’s called the “Cough Assist” and it shoots air down your lungs on the inhale and then sucks everything out of you on the exhale. Most of you Muselings no doubt find it easy to cough, so it’s hard to describe to you what a lifesaver this machine is. Imagine. Someone thought of this machine and invented it and patented it and because of it, I can sorta, kinda talk coherently and breathe properly right now.
And I’m not scared I’ll drown in snot anymore.
I’m grateful to the inventor, but more so to Lee, who along with the other angels at the Forbes Norris Clinic, are another reason why I think yeah, I can keep going.
It’s beauty that keeps me going, beauty like my pretend daughter and caregiver telling me about the difficulties she has with her Dad who has really not been there for her. Her mom died when she was young and in many ways, she’s had to raise herself. And she said very cheerfully to me “But, you know, I’ll end up forgiving him, and I’ll take care of him when he gets old.” And again my heart gushed with love, and then she said ‘But, I’ll probably make him sit in his own poop a little longer than I have to”.
Compassion: it comes in a myriad of forms.
When I was a kid, my brothers and I used to hold our breath when we passed a graveyard. I’m guessing that the origin of this has something to do with The Plague or something, but by the time it reached us in the late sixties and early seventies, it was just the thing we did. I remember as we drove along side the large expanse of green grass and grey tombstones, I would gradually feel like my lungs were going to burst and my eyes were going to pop out and I could barely hold back the giant swelling in my chest. I would watch my face turning colors in the rearview mirror ( Seatbelts? We don’t need no stinking seatbelts!) Finally, I would gasp and the breath would come rushing in like the Mounties to save the day.
It’s different with ALS + cold, because you have absolutely no control over the fact that you can’t breathe. There’s this combined sense of the commonplace because it’s happened so much and the urge to panic because, after all, it’s our nature to breath. And then finally, when the blockage is dislodged, that giant rush of air doesn’t come in like it did as a kid. Instead a raspy little wheeze of breath gasps it’s way in and the sensation feels like drowning might. And then comes the coughing, the gagging and more wheezing. On rare occasions, vomiting. Then later, the sore stomach muscles.
The last time I had a cold, I said that there wouldn’t be a second cold because I’d jump off a bridge first. Well, there was a second cold, but I’m not physically capable of jumping off a bridge and I know enough not to bother asking any of my superfriends to drive me to the bridge and heave me over the railing. So I keep on and I plug away. I put one foot in front of the other, knowing that in a week or so, the veil will lift and I will feel good ( apart from the slow, debilitating fatal illness that is) and I will remember and celebrate all the little joys again.
And I’ll enjoy myself again.
And I’ll breath.
And I’ll keep living my life.
It’s so damned hard to blog but I need to keep carving “Carla was here” all over the internets. I do it for me but don’t worry,- I won’t leave this site without a proper goodbye and after that, I’ve asked Mac to keep you all posted.
I had a dream the other night. It was ‘The Math Dream’ – you know, the generic dream where you’ve been enrolled in a math class all semester but you’ve never actually attended and now you need to take the final exam? I have it periodically. But this time I went to the teacher and I said ‘Please, you have to give me a break, I have ALS, and it took me seven months to get a wheelchair, and I’m in the middle of this nightmare divorce and you have no idea the stress I’m under.’ The teacher looked at me and said ‘Well if you have ALS what are you worried about, you’re not going to finish college anyway.’
And I wonder sometimes: why do I have to take this ALS test? There’s got to be a reason. But there is no reason, it’s just what it is. It’s a random thing – like a music and theater major having the Math Dream 20 years after getting a Master’s Degree. ALS just happened to happen to me. There’s no making sense of it, there’s no finding some powerful purpose in it. I can’t understand it any more than I can understand why a six-year old knows the exact right moment to slip her cool little hand into the hand of a crazy middle-aged dying chick in a wheelchair.
There’re so many ways to spell love, Atticus, and if that’s all that I learn from this experience, maybe that’s enough.
I was making dinner last night. Atticus and Jason were doing an alphabet puzzle in the yellow room.
Atticus: How do you spell "ear"?I
Jason: e-a-r
Atticus: How do you spell "eye"?
Jason: e-y-e.
Atticus: How do you spell "nose"?
Jason: n-o-s-e
Atticus, climbing up Jason and putting his arms around his neck, nuzzling into him: How do you spell "love"?
I'm sure Jason told him how to spell "love," but I was too busy being choked up to hear it.
Back here in Berkeley, Bella reached over and slipped her tiny hand into mine and patted me on the arm with her spare hand and smiled. A warm feeling gushed through my body. She and Sofia and Matt and I had been watching the demo reel of the documentary being done about me. They drive across the bridge to help and to visit every couple of weeks or so. Matt cooked his delectable cow-free stroganoff and Sofia fed me and helped out with bathroom duty. To watch the demo, Bella had parked my spare wheelchair (the Yugo) next to my big one (the Benz). There we sat, side by side. She is only six – her feet dangle high above the chair’s footplates -yet the depth of her compassion blows my mind. To our right, Sofia started crying about something in the demo and Bella, without glancing over, reached out and offered her mom the other little hand and the three of us just sat there like that, hand in hand in hand.
Earlier that afternoon, Bella read me a story (The Paper Bag Princess - one of my favorites) and she inflected her voice like your favorite elementary school teacher did and gave the titular character, Elizabeth, an English accent. And it was not bad either. I’m still struck by this six-year old girl reading the grownup a story, just as I was struck by my niece and nephew pushing me in my wheel chair. It brings to mind a poem that my friend Alison wrote once called: “Consider the Generosity of a One-year Old.”
In response to an email yesterday asking me to grade my mood and health between one and ten, I had told Kaila, that I was a .5, so this morning I got a call from her daughter, ten-year old Lucy, wanting to know if I had upgraded to a one or higher yet.
Children’s enormous hearts. What can I even say?
Last week was one of those weeks where I wonder if I’m really up for this. If I really have the strength to keep getting up every day and going on and then suddenly, I’m with these kids, playing bumper cars in the wheel chairs, watching a stupid movie, or – amazingly - being shown an open heart - a level of compassion and love that adults like me are often afraid of sharing.
And I think: yeah, I can keep going.
Lee, my respiratory therapist arranged for me to borrow a coughing machine. It’s called the “Cough Assist” and it shoots air down your lungs on the inhale and then sucks everything out of you on the exhale. Most of you Muselings no doubt find it easy to cough, so it’s hard to describe to you what a lifesaver this machine is. Imagine. Someone thought of this machine and invented it and patented it and because of it, I can sorta, kinda talk coherently and breathe properly right now.
And I’m not scared I’ll drown in snot anymore.
I’m grateful to the inventor, but more so to Lee, who along with the other angels at the Forbes Norris Clinic, are another reason why I think yeah, I can keep going.
It’s beauty that keeps me going, beauty like my pretend daughter and caregiver telling me about the difficulties she has with her Dad who has really not been there for her. Her mom died when she was young and in many ways, she’s had to raise herself. And she said very cheerfully to me “But, you know, I’ll end up forgiving him, and I’ll take care of him when he gets old.” And again my heart gushed with love, and then she said ‘But, I’ll probably make him sit in his own poop a little longer than I have to”.
Compassion: it comes in a myriad of forms.
When I was a kid, my brothers and I used to hold our breath when we passed a graveyard. I’m guessing that the origin of this has something to do with The Plague or something, but by the time it reached us in the late sixties and early seventies, it was just the thing we did. I remember as we drove along side the large expanse of green grass and grey tombstones, I would gradually feel like my lungs were going to burst and my eyes were going to pop out and I could barely hold back the giant swelling in my chest. I would watch my face turning colors in the rearview mirror ( Seatbelts? We don’t need no stinking seatbelts!) Finally, I would gasp and the breath would come rushing in like the Mounties to save the day.
It’s different with ALS + cold, because you have absolutely no control over the fact that you can’t breathe. There’s this combined sense of the commonplace because it’s happened so much and the urge to panic because, after all, it’s our nature to breath. And then finally, when the blockage is dislodged, that giant rush of air doesn’t come in like it did as a kid. Instead a raspy little wheeze of breath gasps it’s way in and the sensation feels like drowning might. And then comes the coughing, the gagging and more wheezing. On rare occasions, vomiting. Then later, the sore stomach muscles.
The last time I had a cold, I said that there wouldn’t be a second cold because I’d jump off a bridge first. Well, there was a second cold, but I’m not physically capable of jumping off a bridge and I know enough not to bother asking any of my superfriends to drive me to the bridge and heave me over the railing. So I keep on and I plug away. I put one foot in front of the other, knowing that in a week or so, the veil will lift and I will feel good ( apart from the slow, debilitating fatal illness that is) and I will remember and celebrate all the little joys again.
And I’ll enjoy myself again.
And I’ll breath.
And I’ll keep living my life.
It’s so damned hard to blog but I need to keep carving “Carla was here” all over the internets. I do it for me but don’t worry,- I won’t leave this site without a proper goodbye and after that, I’ve asked Mac to keep you all posted.
I had a dream the other night. It was ‘The Math Dream’ – you know, the generic dream where you’ve been enrolled in a math class all semester but you’ve never actually attended and now you need to take the final exam? I have it periodically. But this time I went to the teacher and I said ‘Please, you have to give me a break, I have ALS, and it took me seven months to get a wheelchair, and I’m in the middle of this nightmare divorce and you have no idea the stress I’m under.’ The teacher looked at me and said ‘Well if you have ALS what are you worried about, you’re not going to finish college anyway.’
And I wonder sometimes: why do I have to take this ALS test? There’s got to be a reason. But there is no reason, it’s just what it is. It’s a random thing – like a music and theater major having the Math Dream 20 years after getting a Master’s Degree. ALS just happened to happen to me. There’s no making sense of it, there’s no finding some powerful purpose in it. I can’t understand it any more than I can understand why a six-year old knows the exact right moment to slip her cool little hand into the hand of a crazy middle-aged dying chick in a wheelchair.
There’re so many ways to spell love, Atticus, and if that’s all that I learn from this experience, maybe that’s enough.
Tuesday, June 09, 2009
A Poem
The Farewell
by
Edward Field
They say the ice will hold
so there I go,
forced to believe them by my act of trusting people,
stepping out on it,
and naturally it gaps open
and I, forced to carry on coolly
by my act of being imperturbable,
slide erectly into the water wearing my captain's helmet,
waving to the shore with a sad smile,
"Goodbye my darlings, goodbye dear one,"
as the ice meets again over my head with a click.
by
Edward Field
They say the ice will hold
so there I go,
forced to believe them by my act of trusting people,
stepping out on it,
and naturally it gaps open
and I, forced to carry on coolly
by my act of being imperturbable,
slide erectly into the water wearing my captain's helmet,
waving to the shore with a sad smile,
"Goodbye my darlings, goodbye dear one,"
as the ice meets again over my head with a click.
Sunday, May 31, 2009
This Friday's To-do List
Things that can't really be described:
My friends dressed in prom dresses, drinking tequila well before the sun is over the yard arm, holding tight to my torso and grunting to keep me vertical so I can stick my head and chest out of a limo skylight and shout "Woohoo!"
Watching them dance and how sexy they suddenly are, the wind blowing their dresses and blowing the years off of them until they are the ages of their sons and daughters.
Holding my Wendy as she cries and says "I'm having trouble with you not being out there with us."
Matt arranging for a Johnny Depp look-alike to come to my house and how I can't walk but I can make a Johnny Depp look-alike blush.
Sofia organizing a group of loved ones to stand in a circle and sing "What a Wonderful World."
A baby watching, wide-eyed, as beautiful young women dance, ignoring gravity while sparks of brilliant orange ignite all around them, then die.
Being put to bed with a kiss.
My friends dressed in prom dresses, drinking tequila well before the sun is over the yard arm, holding tight to my torso and grunting to keep me vertical so I can stick my head and chest out of a limo skylight and shout "Woohoo!"
Watching them dance and how sexy they suddenly are, the wind blowing their dresses and blowing the years off of them until they are the ages of their sons and daughters.
Holding my Wendy as she cries and says "I'm having trouble with you not being out there with us."
Matt arranging for a Johnny Depp look-alike to come to my house and how I can't walk but I can make a Johnny Depp look-alike blush.
Sofia organizing a group of loved ones to stand in a circle and sing "What a Wonderful World."
A baby watching, wide-eyed, as beautiful young women dance, ignoring gravity while sparks of brilliant orange ignite all around them, then die.
Being put to bed with a kiss.
Thursday, May 28, 2009
Damn/Dam
I'm sitting here alone in my bed, in the dark talking into this dictation machine and trying to decide whether to be happy that I'm still able to be alone or to be scared that I'm all alone. I fell the other morning around six, banged my knees and knocked my face up a little bit . The bruises will fade but not the reality that it's not safe to be alone. After I fell, I couldn't get back up off the floor, which - more than the falling - was really the hard part.
It's a blow. It means the end of independence is coming.
But I'm lucky because I can choose how to handle these things. When I read the blog comment from the person who's written two books with their chin, I thought "Man I am a whiner! I decided to dwell on the obstacles to writing this blog, meanwhile, this person is writing books with their chin....cheerfully!!! There's always somebody that's worse off than you. And you can feel bad if you really want, but face it: there will always be somebody worse off than you."
So probably about 50 percent of the time or more now, it's just such an effort to bring a fork up to my mouth. The food falls off of it and falls on the floor and I wheel over it and squish it or it's a big mess and my pants are covered with food and either way, my arm is so tired from lifting the damned fork, and blabbity blah blah, that I've finally given in and I'm getting people to feed me. As I told Natta, this is both horrible and beautiful. It's horrible to know you're that dependent on people, that defenseless, that you find it really hard to feed yourself. But it's beautiful because every morsel that someone puts in your mouth feels like love.
I had time today with Edith and Wendy and it was so precious. And I thought: a small number of my friends have really fucked it up for everyone else. Those damned do-gooders! Basically, all of my friends do so much for me and they're all so kind and so wonderful, but I can't grade on a curve, because perceptions are bound to be skewed. There are a couple of my friends that just go so far out of their way, spend so much money on me, go so far beyond the extra mile and anticipate things that I never even realized I needed, it feels like other friends who merely display remarkable kindness, generosity and California king-sized hearts don't get lauded in this blog as much as they would/should otherwise. It's true. So I want to go on record right here and now that I'm so grateful to all of you whether you're named on this blog or not!!! A gazillion thanks!
One of my kind friends, Bryan, has taken 1000s of beautiful photos of me over the years and put hours of work into my various cds. He is working on a remarkable project to raise $5000 to rebuild a dam in a small village in Cambodia. He has only 3 weeks left before he returns to the village to oversee the work. For more info see his website, it will break your heart and inspire you to help. i personally vouch for Bryan ( we go back almost 14 years) and hope you can help him with this great work. Visit:
http://web.me.com/bryanjohnhendon/bryan_john_hendon_photography/Cambodia_Dam_Project_2009.html
It's a blow. It means the end of independence is coming.
But I'm lucky because I can choose how to handle these things. When I read the blog comment from the person who's written two books with their chin, I thought "Man I am a whiner! I decided to dwell on the obstacles to writing this blog, meanwhile, this person is writing books with their chin....cheerfully!!! There's always somebody that's worse off than you. And you can feel bad if you really want, but face it: there will always be somebody worse off than you."
So probably about 50 percent of the time or more now, it's just such an effort to bring a fork up to my mouth. The food falls off of it and falls on the floor and I wheel over it and squish it or it's a big mess and my pants are covered with food and either way, my arm is so tired from lifting the damned fork, and blabbity blah blah, that I've finally given in and I'm getting people to feed me. As I told Natta, this is both horrible and beautiful. It's horrible to know you're that dependent on people, that defenseless, that you find it really hard to feed yourself. But it's beautiful because every morsel that someone puts in your mouth feels like love.
I had time today with Edith and Wendy and it was so precious. And I thought: a small number of my friends have really fucked it up for everyone else. Those damned do-gooders! Basically, all of my friends do so much for me and they're all so kind and so wonderful, but I can't grade on a curve, because perceptions are bound to be skewed. There are a couple of my friends that just go so far out of their way, spend so much money on me, go so far beyond the extra mile and anticipate things that I never even realized I needed, it feels like other friends who merely display remarkable kindness, generosity and California king-sized hearts don't get lauded in this blog as much as they would/should otherwise. It's true. So I want to go on record right here and now that I'm so grateful to all of you whether you're named on this blog or not!!! A gazillion thanks!
One of my kind friends, Bryan, has taken 1000s of beautiful photos of me over the years and put hours of work into my various cds. He is working on a remarkable project to raise $5000 to rebuild a dam in a small village in Cambodia. He has only 3 weeks left before he returns to the village to oversee the work. For more info see his website, it will break your heart and inspire you to help. i personally vouch for Bryan ( we go back almost 14 years) and hope you can help him with this great work. Visit:
http://web.me.com/bryanjohnhendon/bryan_john_hendon_photography/Cambodia_Dam_Project_2009.html
Sunday, May 24, 2009
sneak preview of world's saddest song
I'm almost finished work on two, yes Muselings, TWO new cds one of which I'll release this summer, the other at the end of the year. Here's a teaser - it's a song I wrote to address the need for an ALS song that was neither uplifting nor encouraging. Someone had to do it. I think Edith took the photo.
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