I am 46 years old and I still can't speak about Terry Fox without crying. He was only a couple of years older than me but he was a giant in my eyes. I have been through some things since then and now I don't see a giant, I see a precious too-young boy with a giant's heart.
I woke up from my nap full of thoughts of Terry, perhaps because of a visit this morning from fellow and former Vancouverites John Zaritsky and his producer Montana Berg. Terry was also from Vancouver and anyone with a particular lilt in their accent reminds me of him. Zaritsky and Berg by the way are going to do a documentary about me, but more on that later.
A few months before I graduated high school, Terry Fox dipped his remaining foot into the Atlantic Ocean. He had lost a leg to cancer and as a consequence decided to run 26 miles PER DAY across Canada. He was to end in Vancouver and this time dip his feet into the more familiar waters of the Pacific.
Like most Canadians, I tuned in to the TV every night to check his progress ( or in Canadian, "proh-gress"). Like most Canadians I was felled by grief when his Marathon of Hope ended after over 3000 miles. He learned in Thunder Bay that the cancer had metastasized to his lungs and he had to return home for treatment which was ultimately unsuccessful.
I can't quite say why I'm sharing this or what I want to say about him except that today, 28 years after his death, my heart is full for Terry. Here he is:
Sunday, March 29, 2009
Terry Fox ESPN
Wednesday, March 25, 2009
Pretty Burden
My voice recognition software thinks I mean to say “burden” instead of bird. While trying to decide if the bird is in fact a burden, I decided to look up the word to refresh my memory. The first definition of burden in the dictionary is "a load being carried" and one of the later definitions is “a chorus of a song”. I wonder if the loads we carry
( our pets, our projects, our pet projects…) and the songs we sing ( our dreams and aspirations) are what makes us want to keep on living and maybe when our body is the only burden left, its time to go. It is sad when someone like Natasha Richardson (who died after a seemingly minor fall on a beginner ski slope) leaves the earth with so many remaining “songs and burdens”. It also sad when someone who has shed all their burdens except for their body is left languishing on earth without relief.
I have been thinking a lot about the death of Natasha Richardson and how she died doing something fun and - judging from the fact that she was on a beginner slope when she fell - something new. She was a year younger than me. Her sons were 3 and 4 years younger than Mac. I’ve also been thinking about my physical life – the life of my body. It is letting me down at unpredictable times – like the other morning when I fell trying to get from the wheelchair to toilet. I am lucky to have gotten away with only minor aches and I’m trying to console myself with the knowledge that although my body is now very uncooperative, it did a lot of wondrous things at one point (thanks for that reminder, Garrick) –perhaps enough for a lifetime.
Here are some things that my body has done:
I t has stood up on a surfboard.
It has fallen off of a surf board and gotten a big black bruise on its’ little white ass.
It has jumped during an improv scene, from a 10 foot ladder and into the buff arms of an unsuspecting fellow actor’s body, warning him only by yelling "Lookout, catch!" And it leapt.
It has gone boogieboarding in 18 foot waves in Waikiki.
It has danced in parking lots, on beaches, alone in the apartment, and on stage.
It has run headlong blindfolded as fast as it could into a line of people.
My body has walked along the third story ledge of a dormitory for the sole purpose of executing a practical joke.
It continued to make snow angels and be buried in the sand long after it matured and would do so with or without children present.
Prior to my illness, it stood upside down (since 2002 that is) on hands or head, almost every day.
It used to run into the arms of men I liked (even just a little) and leap, wrapping legs around waists and arms around necks. It tended to get their attention.
It briefly rode a bicycle for a living….and rode a bicycle in a skirt and high heels…and rode a bicycle under-the-influence.
There are so many fun and silly things this body has done that able-bodied people I know have yet to do and may never do. It was never the healthiest or the strongest or the most flexible of bodies but it was mine and I made the most of it. I will continue to do so, lugging my blessed burdens along with me and croaking out my songs too. Even if on occasion, I have to fall.
And by the way, Matt Dick-taste thinks Natasha is spelled either “net nausea” or “NASCAR.”
( our pets, our projects, our pet projects…) and the songs we sing ( our dreams and aspirations) are what makes us want to keep on living and maybe when our body is the only burden left, its time to go. It is sad when someone like Natasha Richardson (who died after a seemingly minor fall on a beginner ski slope) leaves the earth with so many remaining “songs and burdens”. It also sad when someone who has shed all their burdens except for their body is left languishing on earth without relief.
I have been thinking a lot about the death of Natasha Richardson and how she died doing something fun and - judging from the fact that she was on a beginner slope when she fell - something new. She was a year younger than me. Her sons were 3 and 4 years younger than Mac. I’ve also been thinking about my physical life – the life of my body. It is letting me down at unpredictable times – like the other morning when I fell trying to get from the wheelchair to toilet. I am lucky to have gotten away with only minor aches and I’m trying to console myself with the knowledge that although my body is now very uncooperative, it did a lot of wondrous things at one point (thanks for that reminder, Garrick) –perhaps enough for a lifetime.
Here are some things that my body has done:
I t has stood up on a surfboard.
It has fallen off of a surf board and gotten a big black bruise on its’ little white ass.
It has jumped during an improv scene, from a 10 foot ladder and into the buff arms of an unsuspecting fellow actor’s body, warning him only by yelling "Lookout, catch!" And it leapt.
It has gone boogieboarding in 18 foot waves in Waikiki.
It has danced in parking lots, on beaches, alone in the apartment, and on stage.
It has run headlong blindfolded as fast as it could into a line of people.
My body has walked along the third story ledge of a dormitory for the sole purpose of executing a practical joke.
It continued to make snow angels and be buried in the sand long after it matured and would do so with or without children present.
Prior to my illness, it stood upside down (since 2002 that is) on hands or head, almost every day.
It used to run into the arms of men I liked (even just a little) and leap, wrapping legs around waists and arms around necks. It tended to get their attention.
It briefly rode a bicycle for a living….and rode a bicycle in a skirt and high heels…and rode a bicycle under-the-influence.
There are so many fun and silly things this body has done that able-bodied people I know have yet to do and may never do. It was never the healthiest or the strongest or the most flexible of bodies but it was mine and I made the most of it. I will continue to do so, lugging my blessed burdens along with me and croaking out my songs too. Even if on occasion, I have to fall.
And by the way, Matt Dick-taste thinks Natasha is spelled either “net nausea” or “NASCAR.”
Saturday, March 21, 2009
Hello, how are you?
It took me half-an-hour to write two paragraphs of a blog, only to get Mac’s dreaded spinning wheel of death. I had to re-boot Matt Dictate and start all over. Nobody can call me a quitter.... at least not yet.
It’s difficult for me when someone I haven’t seen for awhile asks "How are you?" “Good” I will answer and mean it. "Really?" is often the skeptical response. How can I explain? Life is amazing and terrible, and hilarious and sad. Every day I face new hurdles and every day I laugh out loud.
I am in awe of the magnolia tree outside my window. I love my bird, who just foiled my voice recognition attempts by yelling “fuck ya" when I said "I love my bird," and who is continually messing up the program’s train of thought by shrieking "HI!" The bird forgets that she can’t fly and she falls rather unceremoniously, landing with a crash and squawking "Hello, how are you!" every time. She falls so much I would swear she has ALS. She is so adorable that she helps me remember to be good-natured when I fall.
It is really all a matter of attitude and perception isn't it? My niece hands my nephew some imaginary seeds, which she’s been carefully holding. She plants the imaginary seeds in an imaginary plot and shows her brother where he should plant the rest. He says no. She tells him he must plant them as she has instructed. Again he refuses so she grabs the imaginary seeds from him and walks away. My nephew is bereft . He cries tears only a toddler can cry as he displays his now empty palm to my brother who then has to ask his daughter to give back the non-existent seeds. This manages to placate my nephew. The power of the mind.
When I hear stories about my niece and nephew, I’m great. When I see the look on my brother’s face as he recounts them to me, I’m awesome.
So of course when I say "I'm good" it's true. Annabel and Atticus were playing a game and Annabel threw her hands up in the air and cried "I win!" And Atticus in turn threw his hands up in the air and shouted "I lose!" With equal delight. That’s how I feel – I mean like both of them.
Case in point: this bucking software drives me insane. (Matt Dictate wants me to call it “bucking software.” Sigh. Fine.) It takes forever to write one bucking sentence, then it gets the bucking names Annabel and Atticus correct on the first try.
What the buck?!!?
Okay, but if you look at it another way, how in the hell is it even possible that I am talking into a little microphone and words are instantly being typed? That is totally mind blowing. If I had had this disease even 10 years ago, how much harder would it have sucked?
Case 2: Sure I waited a ridiculous length of time for my wheelchair to be approved by DoucheNet….I mean HealthNet... but it arrives on Tuesday and it is chili pepper red!
I can choose how to look at things. That is the one thing this disease can’t take from me. That and love.
At least that’s what I tell myself as it gets harder and harder to feed myself and impossible to do most other basic tasks. It’s so surreal – I am so handicapped and yet I'm so damned good lookin'. (Please don't come after me for that one, PC disability police -it's a joke.)
But seriously folks....
It's helps me deal with the not so fun aspects of my life knowing how so many of you have shared with me that my illness has brought you in touch with your sense of gratitude. Knowing that so many friends and cyber friends recognize what an awesome gift it is to breathe, to eat, to walk, to type and simply to observe the life around us makes the bullshit go down a little smoother (and no, that is not intended as a mixed metaphor.)
I have to say though, all gratitude aside, I wish Matt Dictate were a person so I could give him a piece of my mind before kicking him in the balls. I bucking hate you Matt Dictate! (I'm feebly attempting to shake my fist. Matt appears un-phased.) By the way my friend, whose name I won't mention in case the ladies in her PTA read this blog, did not blog comment me the following, because she likes to pretend to be demure. As if. She e-mailed me and suggested that since it was MY software it should be called Max Dick taste.
So if you're wondering how I am, I am good. I am terrible. I am in love with so many things and I am so tired and so sad and so scared. Sometimes I want it to all be over soon and sometimes I want to pull the world to me with my hands on either side of it, draw it close and put my lips to it.
I want to stick my tongue in the mouth of the world.
It’s difficult for me when someone I haven’t seen for awhile asks "How are you?" “Good” I will answer and mean it. "Really?" is often the skeptical response. How can I explain? Life is amazing and terrible, and hilarious and sad. Every day I face new hurdles and every day I laugh out loud.
I am in awe of the magnolia tree outside my window. I love my bird, who just foiled my voice recognition attempts by yelling “fuck ya" when I said "I love my bird," and who is continually messing up the program’s train of thought by shrieking "HI!" The bird forgets that she can’t fly and she falls rather unceremoniously, landing with a crash and squawking "Hello, how are you!" every time. She falls so much I would swear she has ALS. She is so adorable that she helps me remember to be good-natured when I fall.
It is really all a matter of attitude and perception isn't it? My niece hands my nephew some imaginary seeds, which she’s been carefully holding. She plants the imaginary seeds in an imaginary plot and shows her brother where he should plant the rest. He says no. She tells him he must plant them as she has instructed. Again he refuses so she grabs the imaginary seeds from him and walks away. My nephew is bereft . He cries tears only a toddler can cry as he displays his now empty palm to my brother who then has to ask his daughter to give back the non-existent seeds. This manages to placate my nephew. The power of the mind.
When I hear stories about my niece and nephew, I’m great. When I see the look on my brother’s face as he recounts them to me, I’m awesome.
So of course when I say "I'm good" it's true. Annabel and Atticus were playing a game and Annabel threw her hands up in the air and cried "I win!" And Atticus in turn threw his hands up in the air and shouted "I lose!" With equal delight. That’s how I feel – I mean like both of them.
Case in point: this bucking software drives me insane. (Matt Dictate wants me to call it “bucking software.” Sigh. Fine.) It takes forever to write one bucking sentence, then it gets the bucking names Annabel and Atticus correct on the first try.
What the buck?!!?
Okay, but if you look at it another way, how in the hell is it even possible that I am talking into a little microphone and words are instantly being typed? That is totally mind blowing. If I had had this disease even 10 years ago, how much harder would it have sucked?
Case 2: Sure I waited a ridiculous length of time for my wheelchair to be approved by DoucheNet….I mean HealthNet... but it arrives on Tuesday and it is chili pepper red!
I can choose how to look at things. That is the one thing this disease can’t take from me. That and love.
At least that’s what I tell myself as it gets harder and harder to feed myself and impossible to do most other basic tasks. It’s so surreal – I am so handicapped and yet I'm so damned good lookin'. (Please don't come after me for that one, PC disability police -it's a joke.)
But seriously folks....
It's helps me deal with the not so fun aspects of my life knowing how so many of you have shared with me that my illness has brought you in touch with your sense of gratitude. Knowing that so many friends and cyber friends recognize what an awesome gift it is to breathe, to eat, to walk, to type and simply to observe the life around us makes the bullshit go down a little smoother (and no, that is not intended as a mixed metaphor.)
I have to say though, all gratitude aside, I wish Matt Dictate were a person so I could give him a piece of my mind before kicking him in the balls. I bucking hate you Matt Dictate! (I'm feebly attempting to shake my fist. Matt appears un-phased.) By the way my friend, whose name I won't mention in case the ladies in her PTA read this blog, did not blog comment me the following, because she likes to pretend to be demure. As if. She e-mailed me and suggested that since it was MY software it should be called Max Dick taste.
So if you're wondering how I am, I am good. I am terrible. I am in love with so many things and I am so tired and so sad and so scared. Sometimes I want it to all be over soon and sometimes I want to pull the world to me with my hands on either side of it, draw it close and put my lips to it.
I want to stick my tongue in the mouth of the world.
Saturday, March 14, 2009
Meet Matt Dictate
Greetings, Muselings! I’m writing to you with the help of voice recognition software, which calls itself Matt Dictate. You know you’re in trouble when your MacDictate program doesn’t know it’s own bloody name. Matt it is.
The other day I moved a refrigerator with my wheelchair. Now you need to understand that I can’t even comb my own hair, but I can move a frickin’ refrigerator. I think that sums up my life pretty well. It took me almost a week to write a blog about health care. It got accidentally deleted. My hands are aching from the effort several days later and the damned blog has disappeared into the ether. Fuck. It was a great one too. An indictment of the fart joke we call a medical system in this country. Damn it was funny. I don't think I will ever be able to find quite as insulting a description of Julie, the gatekeeping bridge-troll from Dr. Gjeltema’'s office. You see, I was finally approved by the mega-corporation, Health Net (who reached me from their flagship office on the Death Star) for my own wheelchair. Health Net has yanked my chain about this chair for seven months. When they aren't torturing cripples, Health Net likes to take candy from babies (By the way, my voice recognition software thinks I said “can be thrown babies.”)
Now, apart from moving refrigerators, wheelchairs are great for getting cripples from point A to point B. (Yes, I am a cripple. I am not “differently-abled” except perhaps on the moon.) I wonder how they thought I was getting around without a chair? Lucky for me, the Muscular Dystrophy Association lends durable medical equipment to people who are Jerry's Kids like me. Thanks Jerry, I almost forgive you for your homophobic public comments. As I love to tell people, whether they want to hear it or not, Jerry Lewis should not be afraid of gay sex since he can already fit his head up his ass. By the way – at this point, I would like run over Matt Dictate with my newly approved wheelchair. After all it can move refrigerators so it should be able crush Matt Dictate.
Matt Dictate will not let me say “fuck” or “cock sucker” or “head up his ass”. It says “fox” instead of “fuck” and when I let loose with a rant including a series of the aforementioned curse words here is what Mac Dick thinks I said. Read all the way through, trust me:
Cheney a hot pink thought they won't they had up to that good as that look at this as a pp in his head very is not a prayer gay sex than they are in a head to bed did have all cake out in wall they thought a long day and out of the bag as that would at this as a new depicting students at his wings' skull of a fluke or so a little studio soon as a new news and say a for him his own he was asked about in what it calls a and contributed to his for a wife's is and I clitoris for life and also the choice right run it like you should read or choose life for Jews that modeling by the show's life good new rules went off solo wound you believe that abortion is the choice of what and are absolute stuff with the choice of sites noting you don't need the film is from the because you've been designing and conducting fell for that what I can't say when like that I can flit in and from a
I did not make any of this up – how could I?
Along that absurd same vein, I ordered a “blanket cradle” from the medical supply place. It’s for people who can’t move blankets with their feet or legs. Wendy opened the box, which contained the blanket cradle and a flyer for dildos and vibrators!!! Not even special handicap friendly dildos (chin strap-on?) but your garden variety able-bodied sex toys. I’m pretty sure I’m this company’s youngest customer and even I was taken aback so what gives?
Kathy made a wheelchair bird perch for Ronald who enjoys hanging out with me flitting from perch to lap to the big perch. The other day while seated on the perch she set off my life alert alarm with her beak! Fortunately, the operator found it amusing. Perhaps I need to teach Ronnie to say “Help, I’ve fallen and I can’t get up!”
I’m trying to teach her to yell “Freebird!”
So my right hand is almost gone. I tried to give Mayra the “thumbs up” sign the other day to indicate I was fine and my hand cramped up something awful. Just imagine how much it would hurt to high five!
Joni Mitchell said “Laughing and crying, you know it’s the same release.” Or as Matt Dictate would say: “Land less than an and know his name in the release.”
ALS is fucking hilarious. Stay tuned for more "mac-a-propisms."
The other day I moved a refrigerator with my wheelchair. Now you need to understand that I can’t even comb my own hair, but I can move a frickin’ refrigerator. I think that sums up my life pretty well. It took me almost a week to write a blog about health care. It got accidentally deleted. My hands are aching from the effort several days later and the damned blog has disappeared into the ether. Fuck. It was a great one too. An indictment of the fart joke we call a medical system in this country. Damn it was funny. I don't think I will ever be able to find quite as insulting a description of Julie, the gatekeeping bridge-troll from Dr. Gjeltema’'s office. You see, I was finally approved by the mega-corporation, Health Net (who reached me from their flagship office on the Death Star) for my own wheelchair. Health Net has yanked my chain about this chair for seven months. When they aren't torturing cripples, Health Net likes to take candy from babies (By the way, my voice recognition software thinks I said “can be thrown babies.”)
Now, apart from moving refrigerators, wheelchairs are great for getting cripples from point A to point B. (Yes, I am a cripple. I am not “differently-abled” except perhaps on the moon.) I wonder how they thought I was getting around without a chair? Lucky for me, the Muscular Dystrophy Association lends durable medical equipment to people who are Jerry's Kids like me. Thanks Jerry, I almost forgive you for your homophobic public comments. As I love to tell people, whether they want to hear it or not, Jerry Lewis should not be afraid of gay sex since he can already fit his head up his ass. By the way – at this point, I would like run over Matt Dictate with my newly approved wheelchair. After all it can move refrigerators so it should be able crush Matt Dictate.
Matt Dictate will not let me say “fuck” or “cock sucker” or “head up his ass”. It says “fox” instead of “fuck” and when I let loose with a rant including a series of the aforementioned curse words here is what Mac Dick thinks I said. Read all the way through, trust me:
Cheney a hot pink thought they won't they had up to that good as that look at this as a pp in his head very is not a prayer gay sex than they are in a head to bed did have all cake out in wall they thought a long day and out of the bag as that would at this as a new depicting students at his wings' skull of a fluke or so a little studio soon as a new news and say a for him his own he was asked about in what it calls a and contributed to his for a wife's is and I clitoris for life and also the choice right run it like you should read or choose life for Jews that modeling by the show's life good new rules went off solo wound you believe that abortion is the choice of what and are absolute stuff with the choice of sites noting you don't need the film is from the because you've been designing and conducting fell for that what I can't say when like that I can flit in and from a
I did not make any of this up – how could I?
Along that absurd same vein, I ordered a “blanket cradle” from the medical supply place. It’s for people who can’t move blankets with their feet or legs. Wendy opened the box, which contained the blanket cradle and a flyer for dildos and vibrators!!! Not even special handicap friendly dildos (chin strap-on?) but your garden variety able-bodied sex toys. I’m pretty sure I’m this company’s youngest customer and even I was taken aback so what gives?
Kathy made a wheelchair bird perch for Ronald who enjoys hanging out with me flitting from perch to lap to the big perch. The other day while seated on the perch she set off my life alert alarm with her beak! Fortunately, the operator found it amusing. Perhaps I need to teach Ronnie to say “Help, I’ve fallen and I can’t get up!”
I’m trying to teach her to yell “Freebird!”
So my right hand is almost gone. I tried to give Mayra the “thumbs up” sign the other day to indicate I was fine and my hand cramped up something awful. Just imagine how much it would hurt to high five!
Joni Mitchell said “Laughing and crying, you know it’s the same release.” Or as Matt Dictate would say: “Land less than an and know his name in the release.”
ALS is fucking hilarious. Stay tuned for more "mac-a-propisms."
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