Looking at a picture of Mac from Friday night's sneak peek and noticing that he can still smile until his eyes twinkle despite everything he has been through.
Having had my Dad three blocks away these past three months.
Knowing that I'll be spending Thanksgiving with a bunch of my caregivers and family. Knowing that is what I want to be doing on Thanksgiving.
Fire dancing.
People.
The Forbes Norris ALS Clinic. Not because they are going to save my ass, because they won't, but because they are all great at their jobs and wonderful, funny and compassionate human beings.
The faculty and staff at The College of Marin who have not forgotten a colleague and continue to help.
The documentary sneak peek at The College of Marin.
Ronald cooing " I lo-ove you - I'm gonna kiiiiilll you" and then counting to 4.
I'm grateful for the students who have made me laugh for 16 years, who show up a dozen years after having a class with me to let me know they haven't forgotten me and for continuing to be in my life. For making me proud.
I'm grateful that one of my students became my caregiver and is traveling back here all the way from New York for Thanksgiving.
My friends. Always my friends. I'm grateful for them when I wake up in the morning and when I go to bed at night because they could have bailed, but instead they have chosen to take on this painful journey. Lots of people have not been able to hack it but many of my girlfriends show up every week. Thinking about ways to help me occupies time when they aren't with me. I don't even want to think about how much money they have spent on me. Its amazing to know that you can send out an email or make a phone call and whatever you need will be taken care of by the end of the day. About a month ago I sent an email to my brother and to several of my close friends saying that I was having a hard time and I didn't know if I could keep going without losing it. It was about 9 or 9:30am. The first one through the door was Edith at around 11. Kathy, Wendy and Kris showed up shortly after. Kaila came by at 12:30. While they were all there my brother called. Let me emphasize I had not asked anyone to call or come over. It's nothing short of miraculous to me to have people just show up.
My friends. I have friends I don't get to see as much because of their work schedules, young kids, etc. I'm grateful for their phone calls and their emails with youtube links and interesting forwards (well not the forwards that make you send them on to ten strong beautiful women you know and not emails of adorable kittens or puppies in the body of the email. I must admit - even if somebody had sent me a chain email saying "Please send this to 10 of your best friends or you will get ALS" I'm pretty sure I wouldn't have forwarded the email...wait a minute, maybe that's what happened.) Anyway, I'm grateful to those friends for showing up in the way that they can.
Pricks I'm not in relationships with. I'm grateful to all the pricks out there who are not currently in a relationship with me. Thank you from the bottom of my heart for not being my prick boyfriend that I should dump but I don't. I'm not grateful to all the really great guys who are not my boyfriend, unless they are somebody else's boyfriend. Awkward!
Psychos who are no longer my caregiver. Thanks for that.
I'm grateful to my new friends who have ALS. Because I hate acronyms, I won't call you my PALS , but I will pal around with you and even get a tattoo with you. Yes, I'm talking to you Gimp Girl.
Muselings.
Music.
I'm grateful that Mac calls me pretty much every day and tells me things I don't understand about politics. I'm grateful for his heavy breathing as he talks on speaker phone while riding his bike across the campus, for the loud music rattling through the cafeteria and distorting his voice and for the interruptions as he orders fettucini or greets roommates, because all of those background noises help me picture what his world looks like now. I am particularly grateful that he is away at school. It would have been great to have him around but its sweeter to know he is thriving and happy and creating a future for himself.
I'm grateful for all the friends and family from out of town who make the time to come and see me. I'm grateful for the extremely magical time with Stephanie who sat through a visit which included me being sick from a medication, exhausted from stress, having the most toxic and volatile parting with a caregiver since James Caan and Kathy Bates in Misery, a sneak peek of the movie where she had to share me with 500 other people and a subsequent day of me being barely able to lift my head from fatigue, nausea and dizziness. The weird part about the visit is that we both had a great time with each other. Not so surprising for me since it's a low bar these days, but for her to have had a good time in those circumstances gives you some idea of what kind of person she is. No, not masochistic, just really good.
I'm grateful for all the young people in my life from Mac and his friends to former students to my unique group of caregivers who run the gamut from artist to dancer to connoisseur of all things weed related to gun toting tattooed sweetie pies.
Unless this Jesus guy is everything he's cracked up to be and his supporters haven't given up praying to him on my behalf then this is my last Thanksgiving. Would you believe that this is the one I'm most grateful for? See that's the trick about gratitude. It doesn't count if you are only grateful on the good days. It's a cumulative thing and it spreads and it grows and it's a fuck of a lot better to be grateful when everything is shitty than to be thinking about how shitty it is.
Everything gets harder, every day more challenging but loving this life and the people it has brought to me paradoxically gets easier and easier. If I had a time machine I would go back to when I was a teenager and I would whisper in my own ear all the things I've learned in my almost two years with ALS and you know what... I probably wouldn't listen to me. Some things you need to learn your own self.
And it's all worth it. And it's a privilege to be here.
Message to god (If that's your name): Yo G! We cool.
Wednesday, November 25, 2009
Friday, November 20, 2009
More Public Humiliation For Edith
A little less than one year ago, I performed for the last time. It was November 26, the day before Thanksgiving, and I knew part way through the gig that this would be the last time I performed on a stage. This as you can imagine was the unkindest cut of all. I don’t think anything has been harder, nor will anything be harder until I’m no longer able to talk, which if you know me is something that I do really well. If there were a competitive talking event in the Olympics I would get the judges’ highest scores for quantity of words, inexhaustibility, and a perfect 10 for creativity.
And so as we got closer and closer to Thanksgiving this year I wondered with dread if I could find a place of genuine gratitude. After all, I’ve lost so many things this last year. It gets harder to harder to do simple tasks and leave it to me to be the ALS anomaly with random symptoms like vomiting. You let me down internet. You didn’t mention vomiting as an ALS symptom. Every day it gets a little harder to be cheerful and look at ALS with that hazy, sepia lens they use on TV for flashbacks of happy childhoods and Kodak commercials.
Good new though: this time of year (today to be exact) marks the anniversary of the birth of Edith Muroga Morrow. I would tell you which anniversary but she would kill me. So in the interest of not angering her, let’s just leave it at she’s very old. (That crack is for Edith’s siblings in case they read this. By throwing the first punch I’ve saved her from a much crueler blow.)
Now those of you who are faithful readers of this blog know that next to talking, the most remarkable thing about me is my award-winning collection of friends. Each one is unique. Each one is gifted. Each one has his or her own peculiar quirk or anxiety that makes them not quite perfect so I’m less envious of them than I might otherwise be. Edith is perhaps the least neurotic and quirky of my friends which is a remarkable accomplishment since she grew up with a man who covered his office windows in tin foil.
Edith has an inscrutable look that takes years to figure out. Her doppelganger Kathy has this disapproving eyebrow cock and lurching forward of the forehead with the chin tucked in which would make most men’s scrotum’s recede and which chills the very heart of this poor cripple. Edith’s disapproving look however is far more subtle. It’s more of a complexion change than anything else. In another life she must have been one of those Gary Cooper type cowboys. I imagine her on the plains facing her down her foe, who, searching her face for the “tell,” never sees her hand reach for the Colt 45. Her eyes don’t even follow the poor slob as he drops to the ground. She just blows across the business end of her pistol, twirls it three and one quarter times on her index finger and it lands perfectly in her gold and oyster brocade holster. She doesn’t blink.
But that’s really only one side of her. Inside her calm cool-as-ice demeanor beats one of the warmest hearts this side of the Pecos. Edith is at my house a minimum of once a week. I’ve called her on her cell phone from another county, and said, “I’m at this party and I’ve locked myself in the bathroom because I’m freaking out.” And she has simply said, “ I’ll be right there.” And she’s always right there. She has listened to me complain bitterly and at great lengths about all kinds of things both serious and petty and she seems to have the misfortune of being the one that’s around during at least three quarters of my completely Vesuvian explosions. She is apparently incapable of spewing molten lava herself and tends to explode more like a bottle of seltzer water that someone had in their knapsack--mildly explosive, and a little soggy but nothing that can’t be quickly cleaned up.
I’ve seen Edith deal with things that nobody should ever have to deal with. I remember Kris, Wendy and myself sitting on the floor of Kris’s empty new house. We were supposed to be putting contact paper into the cupboards and unloading boxes and instead we were sobbing in each other’s arms because Edith’s son had been diagnosed with leukemia. I’ve never seen anyone deal with something so horrible with such grace as she did then. In the midst of cleaning stents, watching her baby get spinal taps and chemo, and discovering that if that wasn’t enough, he also had something wrong with his fucking heart, Edith dealt directly and bravely with the situation. She cried when she had to but she still went out for birthday dinners, indulged in retail therapy, and treated Nick like a regular kid whenever she could. She and her husband (who is very shy so I won’t mention him by name in this blog… let’s just call him…“Guy,”) did such a great job with Nick that he doesn’t remember being sick at all. A kid who had been sick at the same time as Nick recently died. Edith was extremely upset but when she went into Nick’s room to check on him and ask him if he was okay, he answered, “About what?” They have not raised him to be the kid who had leukemia and Edith never seemed to revel in the role of the tireless martyr mom of sick kid. She has always done what needs to be done. She has always had the common sense to take a break when she needs it.
She’s like that with me. I never get the sense from my inner circle of friends that any of them are trying to rack up friendship points in some weird ALS themed video game. Edith just kind of quietly takes care of things that need to get taken care of and some that don’t. For example: I can’t drink from a normal cup anymore so I need to use a straw. The other day Edith shows up at my house with a crate of 3,000 straws. I think I’m going to put it in my will that whatever straws are left should go to build a memorial straw sculpture made by Edith herself. I think a fitting tribute to me would be a giant straw man that people could knock down in my honor. Edith would probably give it a giant straw penis because she also has a very cruel and wicked sense of humor. I love watching her eyes when she says something hilarious yet mean to me because there’s this naughty twinkle that takes about 15 years off of her… which still means she’s very, very old.
By the way, she would blame the straw man’s penis on me. Don’t let her get away with that bullshit.
So as the days get shorter and nights get colder and we creep up toward Thanksgiving, the first blessing that I’m going to write about is my friend Edith. Glamorous, good, creative, and a real smart ass. I love you Edith. Happy Birthday.
And so as we got closer and closer to Thanksgiving this year I wondered with dread if I could find a place of genuine gratitude. After all, I’ve lost so many things this last year. It gets harder to harder to do simple tasks and leave it to me to be the ALS anomaly with random symptoms like vomiting. You let me down internet. You didn’t mention vomiting as an ALS symptom. Every day it gets a little harder to be cheerful and look at ALS with that hazy, sepia lens they use on TV for flashbacks of happy childhoods and Kodak commercials.
Good new though: this time of year (today to be exact) marks the anniversary of the birth of Edith Muroga Morrow. I would tell you which anniversary but she would kill me. So in the interest of not angering her, let’s just leave it at she’s very old. (That crack is for Edith’s siblings in case they read this. By throwing the first punch I’ve saved her from a much crueler blow.)
Now those of you who are faithful readers of this blog know that next to talking, the most remarkable thing about me is my award-winning collection of friends. Each one is unique. Each one is gifted. Each one has his or her own peculiar quirk or anxiety that makes them not quite perfect so I’m less envious of them than I might otherwise be. Edith is perhaps the least neurotic and quirky of my friends which is a remarkable accomplishment since she grew up with a man who covered his office windows in tin foil.
Edith has an inscrutable look that takes years to figure out. Her doppelganger Kathy has this disapproving eyebrow cock and lurching forward of the forehead with the chin tucked in which would make most men’s scrotum’s recede and which chills the very heart of this poor cripple. Edith’s disapproving look however is far more subtle. It’s more of a complexion change than anything else. In another life she must have been one of those Gary Cooper type cowboys. I imagine her on the plains facing her down her foe, who, searching her face for the “tell,” never sees her hand reach for the Colt 45. Her eyes don’t even follow the poor slob as he drops to the ground. She just blows across the business end of her pistol, twirls it three and one quarter times on her index finger and it lands perfectly in her gold and oyster brocade holster. She doesn’t blink.
But that’s really only one side of her. Inside her calm cool-as-ice demeanor beats one of the warmest hearts this side of the Pecos. Edith is at my house a minimum of once a week. I’ve called her on her cell phone from another county, and said, “I’m at this party and I’ve locked myself in the bathroom because I’m freaking out.” And she has simply said, “ I’ll be right there.” And she’s always right there. She has listened to me complain bitterly and at great lengths about all kinds of things both serious and petty and she seems to have the misfortune of being the one that’s around during at least three quarters of my completely Vesuvian explosions. She is apparently incapable of spewing molten lava herself and tends to explode more like a bottle of seltzer water that someone had in their knapsack--mildly explosive, and a little soggy but nothing that can’t be quickly cleaned up.
I’ve seen Edith deal with things that nobody should ever have to deal with. I remember Kris, Wendy and myself sitting on the floor of Kris’s empty new house. We were supposed to be putting contact paper into the cupboards and unloading boxes and instead we were sobbing in each other’s arms because Edith’s son had been diagnosed with leukemia. I’ve never seen anyone deal with something so horrible with such grace as she did then. In the midst of cleaning stents, watching her baby get spinal taps and chemo, and discovering that if that wasn’t enough, he also had something wrong with his fucking heart, Edith dealt directly and bravely with the situation. She cried when she had to but she still went out for birthday dinners, indulged in retail therapy, and treated Nick like a regular kid whenever she could. She and her husband (who is very shy so I won’t mention him by name in this blog… let’s just call him…“Guy,”) did such a great job with Nick that he doesn’t remember being sick at all. A kid who had been sick at the same time as Nick recently died. Edith was extremely upset but when she went into Nick’s room to check on him and ask him if he was okay, he answered, “About what?” They have not raised him to be the kid who had leukemia and Edith never seemed to revel in the role of the tireless martyr mom of sick kid. She has always done what needs to be done. She has always had the common sense to take a break when she needs it.
She’s like that with me. I never get the sense from my inner circle of friends that any of them are trying to rack up friendship points in some weird ALS themed video game. Edith just kind of quietly takes care of things that need to get taken care of and some that don’t. For example: I can’t drink from a normal cup anymore so I need to use a straw. The other day Edith shows up at my house with a crate of 3,000 straws. I think I’m going to put it in my will that whatever straws are left should go to build a memorial straw sculpture made by Edith herself. I think a fitting tribute to me would be a giant straw man that people could knock down in my honor. Edith would probably give it a giant straw penis because she also has a very cruel and wicked sense of humor. I love watching her eyes when she says something hilarious yet mean to me because there’s this naughty twinkle that takes about 15 years off of her… which still means she’s very, very old.
By the way, she would blame the straw man’s penis on me. Don’t let her get away with that bullshit.
So as the days get shorter and nights get colder and we creep up toward Thanksgiving, the first blessing that I’m going to write about is my friend Edith. Glamorous, good, creative, and a real smart ass. I love you Edith. Happy Birthday.
Monday, November 16, 2009
How to Piss Off the Fatally Ill
How to talk to someone with ALS: The Do’s and Don’ts
1) If someone tells you that they have ALS, do not respond by saying, “You know I’ve been getting these headaches. Do you think I have ALS?” I’m not saying never do this. You may do this if the ALS patient to whom you’re addressing is, let’s say, A FUCKING NEUROSURGEON. You may also say, “You know I’ve been getting these headaches. Do you think I have ALS?” if you’re okay with the response, “No. I don’t think you have ALS. I’m pretty sure you have an inoperable brain tumor.” This will probably not offend you because if you said, “You know I’ve been getting these headaches. Do you think I have ALS?” you no doubt have a very small brain. Which means you are a DUMBASS. Other than these 2 examples, it’s really better not to ask someone with ALS to give you this complex diagnosis that takes some neurologists years to figure out.
2) Here are the circumstances under which you can say, “I know how you feel,” “Tell me about it,” or “Girl, I’ve been there” to someone with ALS. The circumstances are: If you are an asthmatic quadriplegic with a speech impediment who has created an incendiary piece of art that has inflamed the Muslim community and caused them to put a fatwah with a price of 5,000,000 dinar on your head. Let me check, yep. That’s pretty much the only circumstance that you can say those things.
Please note: If you are an extremist Muslim, say, a Wahhabist, and take offense at this, PLEASE put a fatwah out on me. That sounds like a much more interesting way to die than ALS.
3) Do not tell someone with ALS what death and the afterlife are like, unless you went through a dark tunnel following a white light at the end of which you were met by Elvis, who told you to go back because it wasn’t your time yet and you were needed on Earth to make rock’n’roll history. If this has not happened to you, I am kind of confused as to how you could make any claims about the afterlife and, in fact, I will go so far as to say that if you make these claims to me, I will make it my personal mission to haunt you and make shitty predictions about what will happen to you during the course of any given day. When I’m wrong, I’ll say things like, “Hey, how was I supposed to know? I’ve never sky-dived.”
4) Please do not volunteer advice to someone with ALS about forgiving former boyfriends, family members, etc. I’m pretty sure that if I hang on to a grudge with you-know-who-you-are (oh no, you don’t, because you don’t read this blog). Anyway, I’m pretty sure that if I hang on to a grudge with the aforementioned you-know-who-you-are, it will not prolong my life. If it did, I would get me some more grudges and stay bitter until stem cells are perfected. Truth is, people who die of gunshot wounds do not forgive the bullet, the gun, or the asshole that shot them. And they still die.
5) Don't call me differently-abled. I used to walk and feed myself and dress myself. I'm not different now. I'm worse-abled. It kind of sucks to lose abilities. It's not just different. I know I sound demanding and bitchy, but that's me putting the "dis" in "disabled."
6) Ixnay on the Esus-Jay.
Here are a few Do’s.
1) You can say or do almost anything if you’re saying or doing it from the heart. You can even say really banal and clichéd things that you only read on greeting cards with pictures of sunsets, and if you really mean it, and if you’re saying it as much for the revelatory nature the words have in the context of crippling illness and untimely death, then you can say things like, “Make every moment count” and it will be okay. Please note: While I agree that it is important to make a lot of moments count, I don’t think it’s fair to tell someone to make every moment count, because they will fail. A lot of people with ALS are type A over-achievers (except of course for slackers. Yes, I’m talking to you, Stephen Hawking. Come on! You live 40+ years with a disease that has a life expectancy of 2 to 5 years and all you can come up with is A BRIEF History of Time? Hell, if I had that long, I could come up with A Relentless and Tediously Long History of Time. Ooooh snap! Stephen Hawking, you’ve been served!), so if you tell them to make every moment count, they’re going to feel guilty when they sit glassy-eyed in front of the TV watching episode upon episode of MI 5. How about, “Make a shit load of moments count, but leave time for TV, tanning beds and masturbation.” Just a thought.
2) You can say tasteless things. See above.
3) If you say something stupid, try to make it so colossally stupid that the person with ALS gets the indescribable joy of repeating your faux pas to everyone that will listen and, perhaps, even write a blog about what an idiot you are. A fatal illness does not cure one of being judgmental, gossipy, or prone to Schadenfreude. One of my favorite reactions, no make it two of my favorite reactions, to me telling someone I had ALS was a guy who brushed me away with a wave of his hand and said a word that can’t be spelled, though might be spell-able in Yiddish. The word is “Ach!” The context was, 1) wave of hand and brush off gesture, 2) emitting of sound, “Ach!” 3) departing bellowing the words “Stem cells!” The other guy who did this was an actual medical doctor. For more bout him, see my blog titled, “The Worst Doctor Ever.” His response was, “Go stem cells!” in a kind of Inspector Gadget, “Go Go Gadget” way. I must have told a hundred people about these two guys. It brings me great joy to see the look of horror and disbelief on people’s faces when they realize that actual carbon-based life forms would say that to other carbon-based life forms. I also love love love the lady from Shanghai who also dismissed me with a wave of her hand and said, “Dohn worry. Darri Rama say you gohna have anuda rife.” It was oddly comforting in an absurd way.
So let’s review: Don’t be a little bit stupid. Be really REALLY stupid. Don’t worry about what you’re saying because if you’re worrying about what you’re saying, you’re probably getting it wrong. Do make tasteless and inappropriate jokes if the occasion requires. Don’t ask for a diagnosis from anyone other than a licensed professional. Don’t mistake yourself for a military chaplain on the front lines or a guy in a cave on the mountaintop dispensing deep spiritual shit. If I want that, I will find an ADA accessible cave complete with ascetic monk. Empathize with extreme caution. And do your own forgiving. I’ll do mine.
I know I missed out some crucial Do’s an Don’ts. If you have ALS and you have something to add to this missive, please blog comment.
PS: To the person who was offended by my comments about Lou Gehrig’s sex appeal. I’m sorry you were offended. However, I’m pretty sure that there is not a man out there who is bummed out when he hears that somebody in the world would totally do him. As a matter of fact, any man who hates it when he finds out a person thinks he’s hot, please write a blog comment and enlighten us. I don’t think it disgraces his honor to point out that he was a hottie. In fact, I heard - probably in one of his biographies - that he was hung like an Iron Horse. At least I think I got that right.
1) If someone tells you that they have ALS, do not respond by saying, “You know I’ve been getting these headaches. Do you think I have ALS?” I’m not saying never do this. You may do this if the ALS patient to whom you’re addressing is, let’s say, A FUCKING NEUROSURGEON. You may also say, “You know I’ve been getting these headaches. Do you think I have ALS?” if you’re okay with the response, “No. I don’t think you have ALS. I’m pretty sure you have an inoperable brain tumor.” This will probably not offend you because if you said, “You know I’ve been getting these headaches. Do you think I have ALS?” you no doubt have a very small brain. Which means you are a DUMBASS. Other than these 2 examples, it’s really better not to ask someone with ALS to give you this complex diagnosis that takes some neurologists years to figure out.
2) Here are the circumstances under which you can say, “I know how you feel,” “Tell me about it,” or “Girl, I’ve been there” to someone with ALS. The circumstances are: If you are an asthmatic quadriplegic with a speech impediment who has created an incendiary piece of art that has inflamed the Muslim community and caused them to put a fatwah with a price of 5,000,000 dinar on your head. Let me check, yep. That’s pretty much the only circumstance that you can say those things.
Please note: If you are an extremist Muslim, say, a Wahhabist, and take offense at this, PLEASE put a fatwah out on me. That sounds like a much more interesting way to die than ALS.
3) Do not tell someone with ALS what death and the afterlife are like, unless you went through a dark tunnel following a white light at the end of which you were met by Elvis, who told you to go back because it wasn’t your time yet and you were needed on Earth to make rock’n’roll history. If this has not happened to you, I am kind of confused as to how you could make any claims about the afterlife and, in fact, I will go so far as to say that if you make these claims to me, I will make it my personal mission to haunt you and make shitty predictions about what will happen to you during the course of any given day. When I’m wrong, I’ll say things like, “Hey, how was I supposed to know? I’ve never sky-dived.”
4) Please do not volunteer advice to someone with ALS about forgiving former boyfriends, family members, etc. I’m pretty sure that if I hang on to a grudge with you-know-who-you-are (oh no, you don’t, because you don’t read this blog). Anyway, I’m pretty sure that if I hang on to a grudge with the aforementioned you-know-who-you-are, it will not prolong my life. If it did, I would get me some more grudges and stay bitter until stem cells are perfected. Truth is, people who die of gunshot wounds do not forgive the bullet, the gun, or the asshole that shot them. And they still die.
5) Don't call me differently-abled. I used to walk and feed myself and dress myself. I'm not different now. I'm worse-abled. It kind of sucks to lose abilities. It's not just different. I know I sound demanding and bitchy, but that's me putting the "dis" in "disabled."
6) Ixnay on the Esus-Jay.
Here are a few Do’s.
1) You can say or do almost anything if you’re saying or doing it from the heart. You can even say really banal and clichéd things that you only read on greeting cards with pictures of sunsets, and if you really mean it, and if you’re saying it as much for the revelatory nature the words have in the context of crippling illness and untimely death, then you can say things like, “Make every moment count” and it will be okay. Please note: While I agree that it is important to make a lot of moments count, I don’t think it’s fair to tell someone to make every moment count, because they will fail. A lot of people with ALS are type A over-achievers (except of course for slackers. Yes, I’m talking to you, Stephen Hawking. Come on! You live 40+ years with a disease that has a life expectancy of 2 to 5 years and all you can come up with is A BRIEF History of Time? Hell, if I had that long, I could come up with A Relentless and Tediously Long History of Time. Ooooh snap! Stephen Hawking, you’ve been served!), so if you tell them to make every moment count, they’re going to feel guilty when they sit glassy-eyed in front of the TV watching episode upon episode of MI 5. How about, “Make a shit load of moments count, but leave time for TV, tanning beds and masturbation.” Just a thought.
2) You can say tasteless things. See above.
3) If you say something stupid, try to make it so colossally stupid that the person with ALS gets the indescribable joy of repeating your faux pas to everyone that will listen and, perhaps, even write a blog about what an idiot you are. A fatal illness does not cure one of being judgmental, gossipy, or prone to Schadenfreude. One of my favorite reactions, no make it two of my favorite reactions, to me telling someone I had ALS was a guy who brushed me away with a wave of his hand and said a word that can’t be spelled, though might be spell-able in Yiddish. The word is “Ach!” The context was, 1) wave of hand and brush off gesture, 2) emitting of sound, “Ach!” 3) departing bellowing the words “Stem cells!” The other guy who did this was an actual medical doctor. For more bout him, see my blog titled, “The Worst Doctor Ever.” His response was, “Go stem cells!” in a kind of Inspector Gadget, “Go Go Gadget” way. I must have told a hundred people about these two guys. It brings me great joy to see the look of horror and disbelief on people’s faces when they realize that actual carbon-based life forms would say that to other carbon-based life forms. I also love love love the lady from Shanghai who also dismissed me with a wave of her hand and said, “Dohn worry. Darri Rama say you gohna have anuda rife.” It was oddly comforting in an absurd way.
So let’s review: Don’t be a little bit stupid. Be really REALLY stupid. Don’t worry about what you’re saying because if you’re worrying about what you’re saying, you’re probably getting it wrong. Do make tasteless and inappropriate jokes if the occasion requires. Don’t ask for a diagnosis from anyone other than a licensed professional. Don’t mistake yourself for a military chaplain on the front lines or a guy in a cave on the mountaintop dispensing deep spiritual shit. If I want that, I will find an ADA accessible cave complete with ascetic monk. Empathize with extreme caution. And do your own forgiving. I’ll do mine.
I know I missed out some crucial Do’s an Don’ts. If you have ALS and you have something to add to this missive, please blog comment.
PS: To the person who was offended by my comments about Lou Gehrig’s sex appeal. I’m sorry you were offended. However, I’m pretty sure that there is not a man out there who is bummed out when he hears that somebody in the world would totally do him. As a matter of fact, any man who hates it when he finds out a person thinks he’s hot, please write a blog comment and enlighten us. I don’t think it disgraces his honor to point out that he was a hottie. In fact, I heard - probably in one of his biographies - that he was hung like an Iron Horse. At least I think I got that right.
Wednesday, November 11, 2009
no time to die
Every now and then I wonder what possesses me to take on impossible tasks. I do, after all, have a fatal illness, though you wouldn't know it because I am so good lookin' and I have no fucking time to die. If anyone has earned a break it's me. But the truth is my projects are what keep me going. I live for seeing the inate and ridiculous possibility in something and then making it happen. I love the moment when " what if " is transformed into " it's on! " And so it was with the Always Looking Sexy Calendar. I mean it makes utter sense. Lou Gehrig was dead sexy. If I were alive in his day, the only thing that would stop me from having sex with him would be...a bed full of young Willie Mays. (He could " say hey" to me any day.)
ALS folks are often sexy (David Niven, Shostakovich, me ). Often brilliant (Stephen Hawking, Charles Mingus, me). And
often very persuasive (Mao Tse Tung and well...me.) Unless Shostakovich was persuasive, I am claiming exclusive bragging rights on all three.
But back to the ALS calendar. Because I took on this ludicrous project, I have had the rare honor of filling my life with heroes and no, I don't use that word lightly. Jason Picetti, father of 19 month old Emma can barely speak but his voice is stronger than most through his warm intimate and upbeat writing. Likewise expectant father of twins, Scott Lew, whose prolific output of screenplays combined with a quicksilver wit puts most " full -fingered" artists to shame. Scott was describing the humility and courage of Lou Gehrig to me and I didn't want to embarrass him, but I thought " Dude, that 's totally you! " Sarah Ezekiel works tirelessly to promote ALS despite being a single mother relying on technology for all her communication.
Oh, I desperately want you to know these people. I want you to fall in love with beautiful, wickedly funny Megan Mishork and be delighted with sweet and charming Corey Reich -tennis coach and super fund-raiser. Or Dennis Myrick who implausably is still working even though he's on a ventilator. Not to mention the hot and hunky Gary Temoyan, the charming and funny Steve White and a few folks I don't know as well (yet) like Jim Cullie, Dianne Kendall, Augie Nieto and Marilyn Silva-inspiring one and all.
Now I am not trying to suggest that people with ALS are inherently more heroic than anyone else or that we suffer more or that our cause is more cause-worthy than poverty, pancreatic cancer or Derek Zoolander's School for Kids Who Don't Read Good and Want to do Other Things Good Too. I am just sharing. These people and my Forbes Norris care providers (fuck you managed care - you just made me use your euphemism) and my loved ones have taught me more about hero's journeys than Joseph Campbell ever dreamt of.
I am in awe of the bravery I am priviledged to witness in these people. I know they have the same dark days that I do. I imagine those with advanced ALS would have gotten it when I said yesterday to Kris after a day that felt like my caregiver issues were straight out of a plot of a David Fincher film, " Lungs, please fail me now! "
I can only speak for myself, but there are days I feel like I'm impatiently waiting for death to come and free my hands and feet from the railroad ties and that my increasing helplessness is an oncoming train. And then I am rescued by a project or by an elaborate practical joke or a mad scheme and suddenly I am George Peppard in the A-Team, loving it when a plan comes together.
I began the calendar project rather impulsively, justifying it as I went along, convincing myself that it was philanthropic after the fact. I got it wrong. These people feed me. The response to the project buoys me. I keep learning and learning how little I know - how little I have always known. I said when I was diagnosed that I would not become a "spokesmodel for ALS"... on the Internet in front of witnesses no less... and this year I am the fucking poster girl for the International ALS Alliance. I do not shit you. Look it up! (on a side note, I asked Dee Norris to tell the Alliance that I was dying to be a poster girl but she said no. )
I have been on this remarkable journey and though I know the end is near, it ain't over yet. There are still so many things to be wrong about,so many ways to shock and provoke both for cause-worthy and frivolous purposes. I still have time to wheel around Berkeley with a bumper sticker on my wheelchair that reads " Paraplegics are Pussies", and see if I get my ass handed to me,which is quite likely since paraplegics have mighty arms... for pussies. There is time to explore the endless sight gag potential of durable medical equipment and to get thirty more years of dirty jokes and silly stories told in the short time I have left. Finally, there is time to harass and cajole you all into buying an absurd number of calendars. The link to the calendar website is now on this page under links.
After that, I can finally pencil in some time to die on my own calendar and when I'm gone, you can tell your kids and grandkids "Do you hear that bell? They say that every time a bell rings, an angel is making out with Lou Gehrig." Please note how I softened that bit for the kids.
And PS: don't forget the sneak peak of Leave them Laughing on November 20th!
ALS folks are often sexy (David Niven, Shostakovich, me ). Often brilliant (Stephen Hawking, Charles Mingus, me). And
often very persuasive (Mao Tse Tung and well...me.) Unless Shostakovich was persuasive, I am claiming exclusive bragging rights on all three.
But back to the ALS calendar. Because I took on this ludicrous project, I have had the rare honor of filling my life with heroes and no, I don't use that word lightly. Jason Picetti, father of 19 month old Emma can barely speak but his voice is stronger than most through his warm intimate and upbeat writing. Likewise expectant father of twins, Scott Lew, whose prolific output of screenplays combined with a quicksilver wit puts most " full -fingered" artists to shame. Scott was describing the humility and courage of Lou Gehrig to me and I didn't want to embarrass him, but I thought " Dude, that 's totally you! " Sarah Ezekiel works tirelessly to promote ALS despite being a single mother relying on technology for all her communication.
Oh, I desperately want you to know these people. I want you to fall in love with beautiful, wickedly funny Megan Mishork and be delighted with sweet and charming Corey Reich -tennis coach and super fund-raiser. Or Dennis Myrick who implausably is still working even though he's on a ventilator. Not to mention the hot and hunky Gary Temoyan, the charming and funny Steve White and a few folks I don't know as well (yet) like Jim Cullie, Dianne Kendall, Augie Nieto and Marilyn Silva-inspiring one and all.
Now I am not trying to suggest that people with ALS are inherently more heroic than anyone else or that we suffer more or that our cause is more cause-worthy than poverty, pancreatic cancer or Derek Zoolander's School for Kids Who Don't Read Good and Want to do Other Things Good Too. I am just sharing. These people and my Forbes Norris care providers (fuck you managed care - you just made me use your euphemism) and my loved ones have taught me more about hero's journeys than Joseph Campbell ever dreamt of.
I am in awe of the bravery I am priviledged to witness in these people. I know they have the same dark days that I do. I imagine those with advanced ALS would have gotten it when I said yesterday to Kris after a day that felt like my caregiver issues were straight out of a plot of a David Fincher film, " Lungs, please fail me now! "
I can only speak for myself, but there are days I feel like I'm impatiently waiting for death to come and free my hands and feet from the railroad ties and that my increasing helplessness is an oncoming train. And then I am rescued by a project or by an elaborate practical joke or a mad scheme and suddenly I am George Peppard in the A-Team, loving it when a plan comes together.
I began the calendar project rather impulsively, justifying it as I went along, convincing myself that it was philanthropic after the fact. I got it wrong. These people feed me. The response to the project buoys me. I keep learning and learning how little I know - how little I have always known. I said when I was diagnosed that I would not become a "spokesmodel for ALS"... on the Internet in front of witnesses no less... and this year I am the fucking poster girl for the International ALS Alliance. I do not shit you. Look it up! (on a side note, I asked Dee Norris to tell the Alliance that I was dying to be a poster girl but she said no. )
I have been on this remarkable journey and though I know the end is near, it ain't over yet. There are still so many things to be wrong about,so many ways to shock and provoke both for cause-worthy and frivolous purposes. I still have time to wheel around Berkeley with a bumper sticker on my wheelchair that reads " Paraplegics are Pussies", and see if I get my ass handed to me,which is quite likely since paraplegics have mighty arms... for pussies. There is time to explore the endless sight gag potential of durable medical equipment and to get thirty more years of dirty jokes and silly stories told in the short time I have left. Finally, there is time to harass and cajole you all into buying an absurd number of calendars. The link to the calendar website is now on this page under links.
After that, I can finally pencil in some time to die on my own calendar and when I'm gone, you can tell your kids and grandkids "Do you hear that bell? They say that every time a bell rings, an angel is making out with Lou Gehrig." Please note how I softened that bit for the kids.
And PS: don't forget the sneak peak of Leave them Laughing on November 20th!
Monday, November 09, 2009
The Little Mermaid
As you can see from the picture below, I don't have much time before I have to get back into the sea so I'll make this brief: The calendar is coming. The website will be up in a day or two so you can order all of your Christmas and Hanukah presents. If you order 100 or more I'll throw in a bottle of hand lotion. Yeah, I said it.
Tuesday, November 03, 2009
A Call to Action
Love is not so much a feeling as a call to action. If you and your partner are healthy and prospering don't think you are off the hook. Love is still a call to action. A call to wake up every morning and really, really see the person you love because isn't that the first spark? To be really seen? Love the person in front of you, not the imaginary one you have decided is somehow superior.
If your partner is ill, love is a call to action. Love wakes parents up in the middle of the night. It caused a man I know to risk tenure because his mom was sick half way across the country in Cleveland. It invited my friends to discover the bottomless depths of their generosity and compassion. Yes. Yes. Love is not so much a feeling as an alarm bell, a runner's gun, a reminder that we are only as good as the good we do for one another.
Love is not so much a feeling as a call to action.
My brother’s wife lay in the ICU almost one year ago. He didn't know what to do. His wife was hours away and a huge snowstorm was due. If he went to see her, their children could be alone with neither parent should he get stranded in the storm. But his wife might die. How does someone choose? How do you live day after day with such stress and no end in sight? Love, true love, kicks your fucking ass!
If you knew you were going to die, who would you want to be with and how would you spend your time together? What are you waiting for? From my vantage point I can see that there is no time to delay -no time to deny the people we love of our time, our attention or our action.
My dad has moved here to help take care of me. I am often a big, stubborn and cranky project and there's no " World's Greatest Dad " T-shirt waiting after he returns from the third Target Store. He helps because that 's what parents do - without expectation and often without hope of rewards.
Love is not so much a feeling as a call to action.
We are all so blessed and we don't remember that as much as we should but right now I'm Tom Hanks in Saving Private Ryan and the healthy among you are Matt Damon and I am telling you without a trace of irony: " Earn this. "
If your partner is ill, love is a call to action. Love wakes parents up in the middle of the night. It caused a man I know to risk tenure because his mom was sick half way across the country in Cleveland. It invited my friends to discover the bottomless depths of their generosity and compassion. Yes. Yes. Love is not so much a feeling as an alarm bell, a runner's gun, a reminder that we are only as good as the good we do for one another.
Love is not so much a feeling as a call to action.
My brother’s wife lay in the ICU almost one year ago. He didn't know what to do. His wife was hours away and a huge snowstorm was due. If he went to see her, their children could be alone with neither parent should he get stranded in the storm. But his wife might die. How does someone choose? How do you live day after day with such stress and no end in sight? Love, true love, kicks your fucking ass!
If you knew you were going to die, who would you want to be with and how would you spend your time together? What are you waiting for? From my vantage point I can see that there is no time to delay -no time to deny the people we love of our time, our attention or our action.
My dad has moved here to help take care of me. I am often a big, stubborn and cranky project and there's no " World's Greatest Dad " T-shirt waiting after he returns from the third Target Store. He helps because that 's what parents do - without expectation and often without hope of rewards.
Love is not so much a feeling as a call to action.
We are all so blessed and we don't remember that as much as we should but right now I'm Tom Hanks in Saving Private Ryan and the healthy among you are Matt Damon and I am telling you without a trace of irony: " Earn this. "
Sunday, November 01, 2009
Guest Post: Maclen Muses
This Special Guest Post Was Written By Maclen Zilber
Hello Muselings, most of you know me, but for those of you who don't, I'm Carla's son, Maclen. You can all call me Mac (Except for you...yes you, the one reading this on a 2003-era E-machine, wearing those shoes with the shiny plastic that went out of style around the time that your E-Machine broke for the second time...One reader probably just said to him/herself, "Hey, why me?" I'm just messing with you, hypothetical person...but seriously, an E-Machine?).
Carla has asked me to introduce myself to all of you, for three reasons, two with levity, and one that is more sobering.
The first reason is that, as some of you know, I am now attending UC San Diego, meaning that I am no longer helping care for her, and guest-posting in her blog allows me to save her the time of summarizing what is going on in my life. Additionally, it allows me to assure those who don't know her as well that she is very well cared for by friends and caregivers in my stead. If that weren't the case, I would have postponed my education.
The second reason, which goes hand in hand with the first, is that you'll like me. Well, most of you will (except for you, e-machine user), and the rest of you will pretend you do.
The third reason, and the more sobering one, is that, when the time comes that my mother passes away, I will make a series of conclusory posts on this blog to let you all know. None of us want to think about this, but Carla and I both feel that, when it happens, it would be better for you to be informed by somebody you are familiar with (through the blogs and the movie, if nothing else), rather than hearing through a stranger, or through hearsay. However, I don't want readers to think, "Oh my god, this must mean that she has passed on" every time I make a post on here, so I will promise to you that that final post, on that unhappy day, will be titled "Carla Anne Zilber-Smith: In Memoriam." That should save you all a few heart palpitations. Any post I make here without that title is just another run-of-the-mill guest post. (Well, that's assuming that anybody could honestly call a guest post of mine "run-of-the-mill," which would be on par with saying that Usain Bolt with a wind turbine factory on his back isn't run-of-the-mill**.)
Do we have a deal?
Good.
(What was that, E-Machine user? You're not agreeing to the deal? That's awful petty...Okay, what if I let you call me Mac? Now You agree? Good. I like unanimity...though that was a pretty tough concession to make...)
Now that we've gotten past the introductions, and now that my name will be inseparable from mortality in the minds of many of you, I'll end this post on a lighter note: My life in La Jolla
I had a jarring pair of thoughts the other day. You see, the first half of the pair of thoughts was, "wow, I am surrounded by Southern California kids." That was disgruntling enough. Then I had an even stranger thought. "I guess I am a Southern California kid now." You see, about a month and a half ago, I left the Bay Area to begin attending UC San Diego.
The physical environment I'm in is something of a dream come true. To begin with, I'm in pretty much the only city in the country with better weather than the Bay Area. It's never too hot, it's never too cold, and it has a beach so enticing that two recent presidential candidates own vacation houses here. People always warned me that when I moved away from home I'd be unable to deal with weather that wasn't the Bay Area. I hate to say that I hate to say I told you so, because it's simply not true. I love to say I told you so, and I totally did.
The intellectual environment here is also something of a dream come true. It's a little known fact, but UCSD spends more money on research than Harvard, Yale, Stanford, Cal, or MIT. It's known as traditionally just a science school, but its Political Science department, where I'm studying, is an exception to that rule (ranking ahead of MIT, UCLA, Northwestern, and Duke). As an exemplification of the high quality of the department, one of my professors this semester is Sam Popkin, the man who was jailed over the pentagon papers, was a top pollster for 6 presidential campaigns (including three winning presidential campaigns), and has been the head of polling for both CBS and The Economist.
The residential environment I'm in is something like a Patrick McGoohan acid trip come true...in a good way. As a preface, for those of you who don't know, I skipped three grades, which makes me the second youngest transfer in the graduating class of 2011. Luckily, the 1st, 3rd, and 4th youngest transfers in the class of 2011 are my roommates (in other words, we have skipped 10 grades between the four of us). It's a veritable mini-think-tank, probably thrown together by the university as some sort of social experiment. Luckily, there's still enough sophomoric humor in the apartment to make my mother proud.
I'm also fitting in well in terms of extra-curriculars. I'm currently settling in to the position of Director of Policy Initiatives in the school's student government, a position that allows me to help make a difference in a number of different areas. Currently, our work includes establishing a men's football team and a women's LaCrosse team at UCSD, founding an umbrella organization for all of the student governments in San Diego County to lobby in Sacramento on behalf of students, and setting up a speaker's series at UCSD with a number of prominent public officials and politicians.
Up next on my list is to join the improvised theater club on campus. A future guest post will discuss the profound impact that being involved in Carla's improv groups had on myself and so many others.
Thanks for tuning in! I'd like to thank all of you for the support system that you have provided for Carla over this rough period of time. You are truly wonderful people. Even the person with the E-Machine. I'm looking forward to seeing some of you at the upcoming preview of Carla's show at College of Marin on November 20th.
**Question of the day, since I'm in the business of making "run-of-the-mill" puns. Are any readers confident enough in their literary and economic knowhow to know how a "run on the mill" could lead to inflation in a specific one of Mark Twain's novels? And no, the internet won't help you with this one.
Hello Muselings, most of you know me, but for those of you who don't, I'm Carla's son, Maclen. You can all call me Mac (Except for you...yes you, the one reading this on a 2003-era E-machine, wearing those shoes with the shiny plastic that went out of style around the time that your E-Machine broke for the second time...One reader probably just said to him/herself, "Hey, why me?" I'm just messing with you, hypothetical person...but seriously, an E-Machine?).
Carla has asked me to introduce myself to all of you, for three reasons, two with levity, and one that is more sobering.
The first reason is that, as some of you know, I am now attending UC San Diego, meaning that I am no longer helping care for her, and guest-posting in her blog allows me to save her the time of summarizing what is going on in my life. Additionally, it allows me to assure those who don't know her as well that she is very well cared for by friends and caregivers in my stead. If that weren't the case, I would have postponed my education.
The second reason, which goes hand in hand with the first, is that you'll like me. Well, most of you will (except for you, e-machine user), and the rest of you will pretend you do.
The third reason, and the more sobering one, is that, when the time comes that my mother passes away, I will make a series of conclusory posts on this blog to let you all know. None of us want to think about this, but Carla and I both feel that, when it happens, it would be better for you to be informed by somebody you are familiar with (through the blogs and the movie, if nothing else), rather than hearing through a stranger, or through hearsay. However, I don't want readers to think, "Oh my god, this must mean that she has passed on" every time I make a post on here, so I will promise to you that that final post, on that unhappy day, will be titled "Carla Anne Zilber-Smith: In Memoriam." That should save you all a few heart palpitations. Any post I make here without that title is just another run-of-the-mill guest post. (Well, that's assuming that anybody could honestly call a guest post of mine "run-of-the-mill," which would be on par with saying that Usain Bolt with a wind turbine factory on his back isn't run-of-the-mill**.)
Do we have a deal?
Good.
(What was that, E-Machine user? You're not agreeing to the deal? That's awful petty...Okay, what if I let you call me Mac? Now You agree? Good. I like unanimity...though that was a pretty tough concession to make...)
Now that we've gotten past the introductions, and now that my name will be inseparable from mortality in the minds of many of you, I'll end this post on a lighter note: My life in La Jolla
I had a jarring pair of thoughts the other day. You see, the first half of the pair of thoughts was, "wow, I am surrounded by Southern California kids." That was disgruntling enough. Then I had an even stranger thought. "I guess I am a Southern California kid now." You see, about a month and a half ago, I left the Bay Area to begin attending UC San Diego.
The physical environment I'm in is something of a dream come true. To begin with, I'm in pretty much the only city in the country with better weather than the Bay Area. It's never too hot, it's never too cold, and it has a beach so enticing that two recent presidential candidates own vacation houses here. People always warned me that when I moved away from home I'd be unable to deal with weather that wasn't the Bay Area. I hate to say that I hate to say I told you so, because it's simply not true. I love to say I told you so, and I totally did.
The intellectual environment here is also something of a dream come true. It's a little known fact, but UCSD spends more money on research than Harvard, Yale, Stanford, Cal, or MIT. It's known as traditionally just a science school, but its Political Science department, where I'm studying, is an exception to that rule (ranking ahead of MIT, UCLA, Northwestern, and Duke). As an exemplification of the high quality of the department, one of my professors this semester is Sam Popkin, the man who was jailed over the pentagon papers, was a top pollster for 6 presidential campaigns (including three winning presidential campaigns), and has been the head of polling for both CBS and The Economist.
The residential environment I'm in is something like a Patrick McGoohan acid trip come true...in a good way. As a preface, for those of you who don't know, I skipped three grades, which makes me the second youngest transfer in the graduating class of 2011. Luckily, the 1st, 3rd, and 4th youngest transfers in the class of 2011 are my roommates (in other words, we have skipped 10 grades between the four of us). It's a veritable mini-think-tank, probably thrown together by the university as some sort of social experiment. Luckily, there's still enough sophomoric humor in the apartment to make my mother proud.
I'm also fitting in well in terms of extra-curriculars. I'm currently settling in to the position of Director of Policy Initiatives in the school's student government, a position that allows me to help make a difference in a number of different areas. Currently, our work includes establishing a men's football team and a women's LaCrosse team at UCSD, founding an umbrella organization for all of the student governments in San Diego County to lobby in Sacramento on behalf of students, and setting up a speaker's series at UCSD with a number of prominent public officials and politicians.
Up next on my list is to join the improvised theater club on campus. A future guest post will discuss the profound impact that being involved in Carla's improv groups had on myself and so many others.
Thanks for tuning in! I'd like to thank all of you for the support system that you have provided for Carla over this rough period of time. You are truly wonderful people. Even the person with the E-Machine. I'm looking forward to seeing some of you at the upcoming preview of Carla's show at College of Marin on November 20th.
**Question of the day, since I'm in the business of making "run-of-the-mill" puns. Are any readers confident enough in their literary and economic knowhow to know how a "run on the mill" could lead to inflation in a specific one of Mark Twain's novels? And no, the internet won't help you with this one.
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