So sorry couldn't really blog at all recently since I am in training and wouldn't get much chance to update much after training done also cz in training for 31st July performance for my company!
For the readers, who are actually supporting thank you very much for the support given but hold on because I will be back with more interesting posts! Including the birth of my bro, Ricardo Ho on the 6th July!!
Updates coming up soon guys!! Hang on!!
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Donnerstag, 8. Juli 2010
Sonntag, 10. August 2008
Reason #7: The Tangible Friendships I have built…with you. Plus my surprise!
Okay, back to the 15 reasons I have for living (if you don't know what I am talking about and just joining, read the previous post - I am going to live, EFM has spoken!).
#7) The physical and tangible relationships I have built up with people around the world.
Having a blog and sending out postcards has had people take a chance, take effort and reach out to me, sometimes sending a postcard back, sending a card, sending a package, a gift, a drawing. There starts and builds a relationship becuase I have parts of them and they have parts of me, things we each made for each other. And I love getting mail as much as the next person. Why would I want to die, when I have to keep waiting for tomorrow, to find out what the post delivery person might bring?
Much, much more on that but first a little aside about me and my health, I thought I would take a picture to show you the “dark patches” I was talking about. Linda took the pictures and said, “Wow, this is great, these ones look TERRIBLE.” I decided not to use those, I mean, I know in real life I look emaciated and such but come-on, I do have some pride. Today I was going to wear a cream colored top when Linda gave me a dark one instead saying, “You look pasty and ill in the other one.” So, uh, goth isn’t just a fashion statement, it is what makes me look the most healthy? How is that for irony? So here is the BEST pic.
Now, because of my seizures (I worked too hard today as it was Chores Day, and had a big old Grand Mal earlier so I am a bit punked and will be more punk later), as well as that stroke I have what is called my BRAIN BOX. That is a box of all the post/mail I have received in the order I received it so that I have an idea when sending a postcard who has written and what they said, even if I have forgotten it a few times. Of course to MAKE this blog post, I had to scatter bits of MY BRAIN, I mean my brain box all over the table so now the chronological order is all mixed up. Still here are some of the postcards that I have received.
The one thing that the postcard project does is that I get post from all over the world (Mexican Hello Kitty?). So the cards are from everywhere (see the Pippi one!). Which is kinda fun, because while I SEND cards all over the world, I actually only live in one town, so getting post from other continents and places is fun.
I want to make clear that this is a SELECTION of what I have received, I didn’t have the time or space to put up all the cards I have gotten. Also, the cards and other items are all anonymous. That means, if you didn’t send me a postcard, this is not a guilt trip, this is just an insight into some of the things which keep me going during the dark times, of which we have to admit there have been many over the last year. Here is another selection of cards
(if you look carefully you can see someone noticed my closely guarded secret that I am a lesbian).
What it also means is that if I haven’t thanked you for your card or gift, I am sorry, so let me say, thank you, all the gifts and cards have made an individual, and a daily difference! The fact that I regularly get a mind wipe doesn’t change that! But the anonymous part means I am not going to name individuals behind the gifts, so I hope you understand. You are invited however to pester me by email after seeing you gift in a picture going, “You DID get it and I never heard from you!” and get a groveling email back about how I am truly a grateful person with exceedingly poor social skills like saying “thank you” right away. A few gifts are anonymous, so I would LIKE to know who they are from (gargoyle?) Here is another set of postcards I have received, including one sent from a place I lived for a time, North Battleford (shudder!), even spending minutes there you can feel the poison in the permafrost burning into you....uh, I mean "Thanks, great postcard!).
Also, there have been a few people who have taken it upon themselves to have a postcard project of their own, and I AM the project. They send postcards with a regular intensity that I can’t match. Though I have determined to try and get a few postcards back to them in this war! (When someone sends you a postcard, that’s nice; when someone sends you a postcard a day covered with puns like: “Do bakers with a sense of humor bake wry bread?”, “Hickory Dickory Dock, The elephant ran up the clock, The clock is being repaired.” And “Did you know that people tend to tell worse puns as they get older? That’s why they’re groan-ups!” – that’s war! And I going to get some shots in! What is odd is that Linda and I do call these jokes “groaners!”). So see, if you want more postcards, just keep sending them, I can’t get them out as fast as you, but I try!
Now, some people have gone to the extent of MAKING their own cards in order that I have some post. Which is so labor intensive that I am somewhat guilty receiving them (so pretty!), particularly when they put such craft and even do drawings. Here is a selection of some of the cards I have received, many are hand-made and as you see, feed my inner (and OUTER) goth!
So, that’s a pretty good reason to live right? But wait, that’s not all! “Cliff, show us what is behind door number two!” (sorry, I was channeling Bob Barker there for a moment).
What I want to add is that people, often people who have just been reading and I haven’t even sent a card to just up and send me a gift. Wow! Now, what you may not know is that when I was aged four I made a list of “How to be a good grown-up!” because I thought grown ups forgot what fun was. And I think number one or number two on that list was, “Give Random gifts!” Because there was nothing better than when my father would come home from work with a random gift, didn’t matter really what it was, just that tangible evidence that he had thought of me. So to be getting that with other people, that is a bond, and it is just plain cool!
Here are some of the gifts I have received.
As you can see, several people have contributed toward the Postcard Project. One donated more Hello Kitty Stickers (good as I was running out!), another sent me some hand made stationary to use (love stationary, but who doesn’t!), and another send me a card….to show how to fence in high heels and a bra and panty set? Err…I mean, one sent a card combining my love of fencing and red headed women! Then we have the Anarchist Angel cards, and socks for my feet with Reynauds, but socks that have cool skulls on them (another person sent socks with skulls too but I didn’t photograph them because I was wearing them today!). The Butterflies in the center are from the Victoria and Albert, a Chinese art booklet of coloured papercuts Butterfly – wow! One person even sent origami in the post and it arrived perfect! While another sent Hello Kitty Red Hots, and one person sent some anime postcards, blank on the back in order to contribute to the project.
It is a bit like a possible Xmas/Birthday everyday, right, which is why, when I keep alluding to working on the “surprise”, I have been trying to give back by putting together little gift packs for some/most of my readers, at least the ones I know. The problem is that the postcards take time, but to put a gift pack together takes about three to five hours minimum (thats once I FIND and get the stuff shipped to me), so I am having a little problem getting a bunch out. I get some people to do wrapping (not with my hands sorry). And I started ordering things, or finding things on the net, months ago, I guess including the items back from Japan, since April and started my “Summer Surprise” sending about a month ago, but I still am like, half way through the list. Obviously I am not going to show you what I am mostly sending because where is the SURPRISE in that, but here is an example of some unique items, that will likely go out in the next week or two to different people in collective packs. I guess I also wanted you to know I am not sitting up here just sucking down the gifts, I do try to give back, it just works on Disability Time, which means it takes a while.
So in this pic we have a reproduction Victorian “Sliding View” card, a Ghibli still brand new puzzle from the film Totoro (if you haven’t seen this, please do so, as it has a CATBUS for one thing). The puzzle has its own little handle. There is also some Japanese candy and a pack of Hello Kitty playing cards (in this case Hello Kitty Angels) and then some Angel Hello Kitty stickers (appearing on a postcard near you!). And in the top middle, all that pack of candy…it isn’t candy, they are erasers, they just look like candy, shipped in from Japan (cool huh?). Do not lick the erasers...they are erasers...not candy.
First off, I LIKE giving, I mean making up the packages, trying to figure out the right gift for the right person is fun, and then hoping they enjoy it when they open it. Plus, so many people have been so generous to me in both time and gifts themselves. For example here is a gift of a drawing I received from a reader from the Anime Chobits (this is Dark Chobit).
This person spent the time to draw this for me! I guess that kind of attitude is catching because I want to give things too!
I admit, my gifts aren’t expensive, I get them from around the world, and it often takes a couple months to collect everything even for just one package, but that is also how I save up and afford it, patience and finding unique items or rare items or different items.
So here is the Totoro Puzzle again with the velcro opened to put the pieces in, and it shows another scene from the film. Also I have pulled the tab on the Victorian Sliding View card – that is what it is, you pull the tab and it moves from on view to another (cool, sadly I only have ONE!). Here are some of the postcards I got in this week, a series of boys and girls with angel wings. So that will go out soon. And a Hello Kitty Angel Pencil with an attached figure (okay, this just happens to be an Angel themed Picture, I am NOT obsessed with Angels, so please no books on them quite yet!). I also finally found my Goth Lolita Packing Tape, took me over a month and half and a little too much money because the tape and the entire line was discontinued soon after production in 2006 after the creator was arrested for using the “wacky tabaccy” which in Japan is a no-no. So now I can start sending out packages where even the tape to close them will be rare and exotic (goth lolita Hello Kitty is rare and exotic, no?).
Here is another picture of some of the gifts I have been fortunate enough to receive, which range from the Goth Lolita bible (Ahhh, swoon!),
to a gargoyle (how well people know me!), to wine jelly and spa products (love the skin and the skin will love you!). There are carved skulls and in the lower right corner, a HELLO KITTY GRAVEYARD (Squeee! Oh to die for!). No, not a place to bury Hello Kitty head down you Hello Kitty haters, but Hello Kitty in her own graveyard dressed up as a vampire or a witch in a 3-D diorama card. Sweet!
And to finish off the selection of gift I have gotten here are these two,
one is an original art piece of me (sort of ME channeling someone from the planet Wonder Woman came from I think, but interesting because I did MAKE myself a bow when I was like 10 or 11 – and have been good at archery!). And the other is feeding my anime Otaku side, a figurine from the Anime Read or Die OVA – a classic and called, “Better than James Bond” (Because it has lots of women with guns for one thing and it has my favorite character, a female obsessed with books who is a secret agent called, The PAPER! Hey, not a lot of times do women who spend way too much time and money on books get to be superheroes!)
So you can see now why this is a pretty strong reason to live. I mean I have this thing going on, I send out cards, people send me cards, I get gifts, I send out gifts. I am making friends. Real friends. Probably more friends than I have ever had in my life. People I feel very deeply about, think about. And just because that may be 30 or 40 different people doesn’t mean I don’t think about them, wonder how they are doing, see something and wonder if they might like that. I love the relationship I have with the people that have developed through this blog. And that is part of what keeps me writing. I want to talk to my friends.
Now here are some OTHER of the postcards I got this week.
Hey, how come I never looked this good on the beach? Oh well, that is why anime land is a wonder land, they can wear clothes that never have your breast pop out of, and they have giant eyes. Believe me I have tried and tried in front of the mirror to get those anime eyes but NO GO. Darn it. But a lot of people seem to like the anime girls (ME! ME! ME!) and they are hard to get so I spend some time every week searching for more, as for example this weeks total of cards is 24. Whew, if only 50% of those are anime, that is still a lot to find.
And finally here are some Pencil Boards, and a folder.
I wanted to finish with this because, well I think they are really pretty (okay, I used to have this ballet fantasy, except I wasn’t the right ‘build’ (tall, more than 79 lbs!) if you know what I mean – but now I want to go back in time and be a SHRINE MAIDEN!). Also, if you look at the pencil board on the left, you will notice the fan in her hand. A couple of you HAVE that fan (or one like it). See, the 'summer surprise' bringing the goodness of Japan right to your summer! Also those two girls are wearing Yukata’s and this week I have been asked by three people INCLUDING the gentleman from Japan who helped me with the information on disability access, on WHEN am I going to wear my purple and black Yukata? Summer is here and so time to break out the Yukata and Obi, right? Well, that will have to be one of my next projects.
I hoped you liked that tour, and thank you again for everyone who sent me a postcard, a card, a hand made card, a gift and an email or picture (which I didn’t show here). Those tangible expressions of one human being to another, those things which I can hold in my hand and know that someone out there actually cares and cared enough about me to spend the time making, writing, sending this. And that’s my number seven reason on why I want to live. Because those relationship are too precious to give up, and besides, I haven’t finished sending out all my gift packets yet (some of you are REALLY hard to shop for!).
As an aside, the reason I did a “Summer Surprise” was two fold; first, for people like me, often people with chronic conditions, summer is a time when everyone goes away (like a lot of people are away right now!), and those of us who are indoors, who are going still to doctor’s appointments or making it through the day of our chronic conditions…..it can get lonely. That is a good time for a package.
#7) The physical and tangible relationships I have built up with people around the world.
Having a blog and sending out postcards has had people take a chance, take effort and reach out to me, sometimes sending a postcard back, sending a card, sending a package, a gift, a drawing. There starts and builds a relationship becuase I have parts of them and they have parts of me, things we each made for each other. And I love getting mail as much as the next person. Why would I want to die, when I have to keep waiting for tomorrow, to find out what the post delivery person might bring?
Much, much more on that but first a little aside about me and my health, I thought I would take a picture to show you the “dark patches” I was talking about. Linda took the pictures and said, “Wow, this is great, these ones look TERRIBLE.” I decided not to use those, I mean, I know in real life I look emaciated and such but come-on, I do have some pride. Today I was going to wear a cream colored top when Linda gave me a dark one instead saying, “You look pasty and ill in the other one.” So, uh, goth isn’t just a fashion statement, it is what makes me look the most healthy? How is that for irony? So here is the BEST pic.
Now, because of my seizures (I worked too hard today as it was Chores Day, and had a big old Grand Mal earlier so I am a bit punked and will be more punk later), as well as that stroke I have what is called my BRAIN BOX. That is a box of all the post/mail I have received in the order I received it so that I have an idea when sending a postcard who has written and what they said, even if I have forgotten it a few times. Of course to MAKE this blog post, I had to scatter bits of MY BRAIN, I mean my brain box all over the table so now the chronological order is all mixed up. Still here are some of the postcards that I have received.
The one thing that the postcard project does is that I get post from all over the world (Mexican Hello Kitty?). So the cards are from everywhere (see the Pippi one!). Which is kinda fun, because while I SEND cards all over the world, I actually only live in one town, so getting post from other continents and places is fun.I want to make clear that this is a SELECTION of what I have received, I didn’t have the time or space to put up all the cards I have gotten. Also, the cards and other items are all anonymous. That means, if you didn’t send me a postcard, this is not a guilt trip, this is just an insight into some of the things which keep me going during the dark times, of which we have to admit there have been many over the last year. Here is another selection of cards
(if you look carefully you can see someone noticed my closely guarded secret that I am a lesbian).What it also means is that if I haven’t thanked you for your card or gift, I am sorry, so let me say, thank you, all the gifts and cards have made an individual, and a daily difference! The fact that I regularly get a mind wipe doesn’t change that! But the anonymous part means I am not going to name individuals behind the gifts, so I hope you understand. You are invited however to pester me by email after seeing you gift in a picture going, “You DID get it and I never heard from you!” and get a groveling email back about how I am truly a grateful person with exceedingly poor social skills like saying “thank you” right away. A few gifts are anonymous, so I would LIKE to know who they are from (gargoyle?) Here is another set of postcards I have received, including one sent from a place I lived for a time, North Battleford (shudder!), even spending minutes there you can feel the poison in the permafrost burning into you....uh, I mean "Thanks, great postcard!).
Also, there have been a few people who have taken it upon themselves to have a postcard project of their own, and I AM the project. They send postcards with a regular intensity that I can’t match. Though I have determined to try and get a few postcards back to them in this war! (When someone sends you a postcard, that’s nice; when someone sends you a postcard a day covered with puns like: “Do bakers with a sense of humor bake wry bread?”, “Hickory Dickory Dock, The elephant ran up the clock, The clock is being repaired.” And “Did you know that people tend to tell worse puns as they get older? That’s why they’re groan-ups!” – that’s war! And I going to get some shots in! What is odd is that Linda and I do call these jokes “groaners!”). So see, if you want more postcards, just keep sending them, I can’t get them out as fast as you, but I try!
Now, some people have gone to the extent of MAKING their own cards in order that I have some post. Which is so labor intensive that I am somewhat guilty receiving them (so pretty!), particularly when they put such craft and even do drawings. Here is a selection of some of the cards I have received, many are hand-made and as you see, feed my inner (and OUTER) goth!
So, that’s a pretty good reason to live right? But wait, that’s not all! “Cliff, show us what is behind door number two!” (sorry, I was channeling Bob Barker there for a moment).
What I want to add is that people, often people who have just been reading and I haven’t even sent a card to just up and send me a gift. Wow! Now, what you may not know is that when I was aged four I made a list of “How to be a good grown-up!” because I thought grown ups forgot what fun was. And I think number one or number two on that list was, “Give Random gifts!” Because there was nothing better than when my father would come home from work with a random gift, didn’t matter really what it was, just that tangible evidence that he had thought of me. So to be getting that with other people, that is a bond, and it is just plain cool!
Here are some of the gifts I have received.
As you can see, several people have contributed toward the Postcard Project. One donated more Hello Kitty Stickers (good as I was running out!), another sent me some hand made stationary to use (love stationary, but who doesn’t!), and another send me a card….to show how to fence in high heels and a bra and panty set? Err…I mean, one sent a card combining my love of fencing and red headed women! Then we have the Anarchist Angel cards, and socks for my feet with Reynauds, but socks that have cool skulls on them (another person sent socks with skulls too but I didn’t photograph them because I was wearing them today!). The Butterflies in the center are from the Victoria and Albert, a Chinese art booklet of coloured papercuts Butterfly – wow! One person even sent origami in the post and it arrived perfect! While another sent Hello Kitty Red Hots, and one person sent some anime postcards, blank on the back in order to contribute to the project.It is a bit like a possible Xmas/Birthday everyday, right, which is why, when I keep alluding to working on the “surprise”, I have been trying to give back by putting together little gift packs for some/most of my readers, at least the ones I know. The problem is that the postcards take time, but to put a gift pack together takes about three to five hours minimum (thats once I FIND and get the stuff shipped to me), so I am having a little problem getting a bunch out. I get some people to do wrapping (not with my hands sorry). And I started ordering things, or finding things on the net, months ago, I guess including the items back from Japan, since April and started my “Summer Surprise” sending about a month ago, but I still am like, half way through the list. Obviously I am not going to show you what I am mostly sending because where is the SURPRISE in that, but here is an example of some unique items, that will likely go out in the next week or two to different people in collective packs. I guess I also wanted you to know I am not sitting up here just sucking down the gifts, I do try to give back, it just works on Disability Time, which means it takes a while.
So in this pic we have a reproduction Victorian “Sliding View” card, a Ghibli still brand new puzzle from the film Totoro (if you haven’t seen this, please do so, as it has a CATBUS for one thing). The puzzle has its own little handle. There is also some Japanese candy and a pack of Hello Kitty playing cards (in this case Hello Kitty Angels) and then some Angel Hello Kitty stickers (appearing on a postcard near you!). And in the top middle, all that pack of candy…it isn’t candy, they are erasers, they just look like candy, shipped in from Japan (cool huh?). Do not lick the erasers...they are erasers...not candy.First off, I LIKE giving, I mean making up the packages, trying to figure out the right gift for the right person is fun, and then hoping they enjoy it when they open it. Plus, so many people have been so generous to me in both time and gifts themselves. For example here is a gift of a drawing I received from a reader from the Anime Chobits (this is Dark Chobit).
This person spent the time to draw this for me! I guess that kind of attitude is catching because I want to give things too!I admit, my gifts aren’t expensive, I get them from around the world, and it often takes a couple months to collect everything even for just one package, but that is also how I save up and afford it, patience and finding unique items or rare items or different items.
So here is the Totoro Puzzle again with the velcro opened to put the pieces in, and it shows another scene from the film. Also I have pulled the tab on the Victorian Sliding View card – that is what it is, you pull the tab and it moves from on view to another (cool, sadly I only have ONE!). Here are some of the postcards I got in this week, a series of boys and girls with angel wings. So that will go out soon. And a Hello Kitty Angel Pencil with an attached figure (okay, this just happens to be an Angel themed Picture, I am NOT obsessed with Angels, so please no books on them quite yet!). I also finally found my Goth Lolita Packing Tape, took me over a month and half and a little too much money because the tape and the entire line was discontinued soon after production in 2006 after the creator was arrested for using the “wacky tabaccy” which in Japan is a no-no. So now I can start sending out packages where even the tape to close them will be rare and exotic (goth lolita Hello Kitty is rare and exotic, no?).Here is another picture of some of the gifts I have been fortunate enough to receive, which range from the Goth Lolita bible (Ahhh, swoon!),
to a gargoyle (how well people know me!), to wine jelly and spa products (love the skin and the skin will love you!). There are carved skulls and in the lower right corner, a HELLO KITTY GRAVEYARD (Squeee! Oh to die for!). No, not a place to bury Hello Kitty head down you Hello Kitty haters, but Hello Kitty in her own graveyard dressed up as a vampire or a witch in a 3-D diorama card. Sweet!And to finish off the selection of gift I have gotten here are these two,
one is an original art piece of me (sort of ME channeling someone from the planet Wonder Woman came from I think, but interesting because I did MAKE myself a bow when I was like 10 or 11 – and have been good at archery!). And the other is feeding my anime Otaku side, a figurine from the Anime Read or Die OVA – a classic and called, “Better than James Bond” (Because it has lots of women with guns for one thing and it has my favorite character, a female obsessed with books who is a secret agent called, The PAPER! Hey, not a lot of times do women who spend way too much time and money on books get to be superheroes!)So you can see now why this is a pretty strong reason to live. I mean I have this thing going on, I send out cards, people send me cards, I get gifts, I send out gifts. I am making friends. Real friends. Probably more friends than I have ever had in my life. People I feel very deeply about, think about. And just because that may be 30 or 40 different people doesn’t mean I don’t think about them, wonder how they are doing, see something and wonder if they might like that. I love the relationship I have with the people that have developed through this blog. And that is part of what keeps me writing. I want to talk to my friends.
Now here are some OTHER of the postcards I got this week.
Hey, how come I never looked this good on the beach? Oh well, that is why anime land is a wonder land, they can wear clothes that never have your breast pop out of, and they have giant eyes. Believe me I have tried and tried in front of the mirror to get those anime eyes but NO GO. Darn it. But a lot of people seem to like the anime girls (ME! ME! ME!) and they are hard to get so I spend some time every week searching for more, as for example this weeks total of cards is 24. Whew, if only 50% of those are anime, that is still a lot to find.And finally here are some Pencil Boards, and a folder.
I wanted to finish with this because, well I think they are really pretty (okay, I used to have this ballet fantasy, except I wasn’t the right ‘build’ (tall, more than 79 lbs!) if you know what I mean – but now I want to go back in time and be a SHRINE MAIDEN!). Also, if you look at the pencil board on the left, you will notice the fan in her hand. A couple of you HAVE that fan (or one like it). See, the 'summer surprise' bringing the goodness of Japan right to your summer! Also those two girls are wearing Yukata’s and this week I have been asked by three people INCLUDING the gentleman from Japan who helped me with the information on disability access, on WHEN am I going to wear my purple and black Yukata? Summer is here and so time to break out the Yukata and Obi, right? Well, that will have to be one of my next projects.I hoped you liked that tour, and thank you again for everyone who sent me a postcard, a card, a hand made card, a gift and an email or picture (which I didn’t show here). Those tangible expressions of one human being to another, those things which I can hold in my hand and know that someone out there actually cares and cared enough about me to spend the time making, writing, sending this. And that’s my number seven reason on why I want to live. Because those relationship are too precious to give up, and besides, I haven’t finished sending out all my gift packets yet (some of you are REALLY hard to shop for!).
As an aside, the reason I did a “Summer Surprise” was two fold; first, for people like me, often people with chronic conditions, summer is a time when everyone goes away (like a lot of people are away right now!), and those of us who are indoors, who are going still to doctor’s appointments or making it through the day of our chronic conditions…..it can get lonely. That is a good time for a package.
The second reason, to be honest, was I was getting a lot of bad news the last month or two, developing a lot of pain, a lot of things like seizures and passing out and not breathing. Plus there were a few times when it seemed that I would not make it (as in be alive), or was told later that some people thought I might not make it. So I felt the clock was ticking. I wasn’t going to wait for a traditional time for Xmas. Because for me, if I wanted to show someone how I felt, I needed to do it NOW, before it was too late. Xmas in summer.
But now that I am going to keep living regardless (yeah, even as zombie if that is what it takes!), what will I do when Xmas comes?
Anyway, that is reason number seven.
Mittwoch, 2. Juli 2008
Your life, your credit. My team, my life, my choices (Version 2).
I have an apology and some explanations and thank you's to give. Last week I was in a bad head space, and to be completely truthful, after 36 hours of continuous pain, I am not in that great a one right now, so I am going to try very hard to think and write clearly. Also, in trying to write this, Victor and other brought to my attention that I forgot things like "sharing" so I have tried to rewrite this, and I hope it makes sense, and if it doesn't....er...I blame the drugs!
Last week in a post called “Angry” I wrote: “It is difficult to explain the depth of shame and pain I get from finding out that people are imitating me; and now the suffering they feel, is to me, my responsibility.” Just to clarify here, that is a stupid, arrogant and self centered statement that I want to apologize to all of my readers for making.
A lot of my readers have disabilities, many of them have little support, less than I do, and many others are single parents or parents of children with special needs, or caregivers or just people ‘getting by’. I do stuff and I write about it. What gives me the right to say how what I do or think can be used by people, particularly people who are using it to motivate themselves, to use it like a cheerleader in the mind to get them over that bad patch? I don't. I have NO right.
I write what I write and I would LOVE to hear in an email or comment if that helped you do something. You are all mature individuals and you know your conditions and your lives and it was arrogant AND presumptuous of me to think that it was all up to ME; all about ME, MY fault, MY responsibility if anything went wrong. If you have CFS/ME, or you have Lupus, or you have Lymes or you have three kids and you are a single parent and something I write speaks to you and says, “Let’s go adventuring!” and you do that. That’s you! That is you taking a creative work and making it into something you can use to make your life better, and I have NO RIGHT to claim or even imply credit for that; if you went out and dug a garden because I went out and did a race, then great! I’d love to hear about it, love to hear how it went. Because you know your condition and you know that my condition is different, and you are an intellegent person. And if what I wrote made you think, I'd like to hear that too. But to claim it as "my responsibility"? Come on!
I was being an ass when I made that statement in "Anger", and I hope you can forgive me. I take people’s stories too, I read other people’s blogs or emails and I get a voice in my head saying, “Go and do likewise Beth!” But at the end of the day, that is my choice (and my decision to take those risks, not the people who I imitate), and while they inspired me (yup, they, and that includes you, the readers that "inspire" me – so back at ya! You probably 'inspire' me more than vice versa - seriously, I had no MP3 player, no music, so who did I talk to in my head during that race - well it was all of you!) I made the choice. And while I appreciate, desire and in may ways need the support to complete that choice, I am the one who has to actually do whatever crazy thing it happens to be and then I am the one who because of that choice has to live with the consequences.
So please forgive me and let me back in and tell me the stuff you are doing?
I just re-read that last bit and rewrote some, as it sounds like we all need to be very selfish and that we can't do things together and that is not what I meant at all. I do not achieve alone, and yes, people do deserve credit for helping me, for inspiring me and later I hope I make that clear. What I was trying to say is that, if people ARE inspired by me, and I am in a space where I don't know how to deal with that, or what to do, well, that's my issue! But I hope I am gracious enough to support them, and care about them and hope that they succeed, as they have done so often for me. But no, I don't have the right, to determine what they do, or why they do it or what parts of my writing they use or don't use, and the same of my life. But that doesn't mean we all live alone, that we all must struggle alone, grabbing what we can from others. I hope we work together, have fun together, like the May Madness weekend. I just, felt it was very wrong of me to put my own doubts, my own fears, my own worries about how others were doing because I didn't want bad things to happen to them and so I said something that implied those who are inspired by me, if bad things happen (as they sometimes do), they it was THIER fault. And that was immature and very wrong to write and I apologize.
And while I might or someone else might inspire someone to do something, in the end of the day, the person who made the choice, they are the ones who have to gut it through; who have to see it to the end. All I can do is try and support them as much as I can. And so they are the real (oh, another one of those 'words' coming up) heroes. Okay, I hope I explained and apologized enough and we can move on?
I realized today that I have a VERY surreal life. I mean, I am having seizures every day, and debating going to the hospital and then… a few hours later, go and do a 10K in a racing wheelchair. And then go right from the finish line, and the first aid tent to back to being on oxygen and not moving and having little seizures that day.
I have actually gone FROM the hospital, stopped at home to nap and then gone directly to boxing, or badminton with the hospital ID bracelet still on my wrist. So I admit, this is NOT really a typical life for anyone, is it?
So yeah, I went up tonight to do badminton because my right arm is getting purple/black and I wanted to see if that improved it. Well, the badminton DID make my right hand twice the size of my left hand (I showed everyone the neat ‘freaky human trick’) but then had to leave when my arms were green (too hot!). And now I am back on oxygen. And in pain so bad that I am doing the “how many minutes till my next pain pill?” Plus a new overnight care worker came; I said to her, “I’m not at my best, you know the whole 36 hours of continuous mind blowing pain.” I REALLY hope that tomorrow that goes back to normal: the annoying to aggravating pain.
But the thing is, how do I get to live this life where instead of being curled up into a fetal ball, I go out and do stuff? Is it because I am some super crip, or heroic or some dying woman who is living life to the fullest. The answer to that is no, no and yes. And some part of that is me, but the other part of that is the people who support me. Could I have done the 10K without Linda and Cheryl? No. I could barely wheel back to the van to ride home much less wheel down to the start and then back again. I could not have snapped the cold break packs, or stopped the EMT from putting blankets on me and warming me up. I did not get the chair ready the night before, they did. They put out my clothes, they talked to me and kept me calm. I could not have done the race without a woman named Janet who fixed my racing chair and gloves because she said, "I want Beth to do what Beth wants so much, to LIVE.....right up to when she dies."
Sure, I was going to badminton tonight solo but Linda nixed that and came and did work for her job on the laptop, just to keep an eye on me. That is how I am able to do all these things and live to write about it. In the same way, how is it that I am able to write EVERY SINGLE DAY? Is it because I want to leave a record, and have some meaning to my life? That I have set myself a challenge? Sure, but it is just as important that I am part of a community of people who are there to lift me up when I am down. The readers, those who comment or not, are part of my support network. They are my family, my friends and the people who I share my life and vice versa. The people who send me packages, and gifts and postcards are the people who are a physical part of my life. The 90+ people I send postcards to are people who I am emotionally invested, who I take delight in finding “just the right postcard” and “just the right sticker.” I do it for them, yes, but also I do it for me, to be connected to humanity and to care about humanity.
I am able to go to Goldstream, and to the Cemetery and to the 10K race and everything else because I DO have a net of people supporting me, some right here like Linda who hold me up. I KNOW that many of my readers do not, so making comparisons in such cases is unproductive. I am fortunate and I know it. What would I do without Linda? I would be lucky to get my groceries. Getting my stuff from the pharamacy and to my medical appointments would take up ALL my energy. It is because of her and others that I am able to have choices in my life; and about what to do with my life. And this week that choice was to do a 10K and now I have to recover from that. And she is there to help me.
Up at badminton, one of the guys who was pretty stand-offish for months came up and said to me, “It is great that you come out…..I mean, that you come and play badminton in a wheelchair at ALL is incredible.”
And I said, “Well, if I WON, that would be incredible, but just coming out and trying, that only gets me a ‘pretty good’”
He looked baffled. And was probably hurt. I wasn’t trying to diss him, I was trying to explain that being in a wheelchair and going three blocks to the Y is not incredible. If he wanted to think I am incredible, look at the time and effort I have put into the sport of badminton and how I am improving myself. I told them I was a bit tired as I had won the 10K race in the yesterday.
He and his girlfriend were totally speechless, “A 10K….in your wheelchair?”
I avoided the “I find it easier than dragging my body miles with my arms” line and said, “Well, in a specialized racing chair, but yeah.” They were blown into speechless. I was AMAZING!
There were close to 1000 runners yesterday, how many had cancer, or were recovering, how many had recent losses and grief, how many had arthritis or how many decided to lose weight and took up running by themselves a few months ago? I did a race. And yeah, because I am weaker, I am facing seizures and autonomic failure on a weekly and daily basis, it was pretty amazing, but I bet there were 10, 50 or 100 ‘amazing’ stories out there that day.
What is amazing is that I have a partner and a sister/friend who help me WEEKLY achieve my dreams, who give me the chance to make stupid choices. Who are with me during the good times and the bad and who help me try to feel an equal person after a loss of memory or when I have trouble speaking. That I have friends like Maggie and Lene and all the other people like Neil who write and care, all the people here on the blog: that is amazing.
To end with a smash of realism: am I worse? Yes. There is another D word that no one wants to use: dementia. Do I have it, well according to the technical definition, I do some days. Will it be part of my future, I hope not. Am I weaker? Yes. Am I thinner than a few months ago? Yes. Do I have less reserves regardless of whether I try to horde them or not? Yes. Have I had a remission? No. Am I going to? Probably not. Do I have to fight fear and depression and pain every day in order to do what I think will give my body the best chance for a longer survival? Yes. Will I continue to pursue my dreams, whether they be sending everyone who wants one a couple postcards and caring about 90 or 100 people I will never get to meet, or looking forward to a trip to San Francisco which may never happen? Yes. And I will use whatever means needed to get through a day, a week, a minute, an hour. I will use your stories from your blogs, I will use your emails, your messages: I need them. And I am not ashamed about that. I need them to keep going. I may not get to thank you individually, so thank you. Yes, I am taking your stories and using them to keep going. And anyone who wants to take mine is free to do so, the same with pictures. It has always been so (devo’s excepted). Just try not to sell them as yours.
And thank you for cheering me on on Tuesday. I heard every one (even the silent ones).
Last week in a post called “Angry” I wrote: “It is difficult to explain the depth of shame and pain I get from finding out that people are imitating me; and now the suffering they feel, is to me, my responsibility.” Just to clarify here, that is a stupid, arrogant and self centered statement that I want to apologize to all of my readers for making.
A lot of my readers have disabilities, many of them have little support, less than I do, and many others are single parents or parents of children with special needs, or caregivers or just people ‘getting by’. I do stuff and I write about it. What gives me the right to say how what I do or think can be used by people, particularly people who are using it to motivate themselves, to use it like a cheerleader in the mind to get them over that bad patch? I don't. I have NO right.
I write what I write and I would LOVE to hear in an email or comment if that helped you do something. You are all mature individuals and you know your conditions and your lives and it was arrogant AND presumptuous of me to think that it was all up to ME; all about ME, MY fault, MY responsibility if anything went wrong. If you have CFS/ME, or you have Lupus, or you have Lymes or you have three kids and you are a single parent and something I write speaks to you and says, “Let’s go adventuring!” and you do that. That’s you! That is you taking a creative work and making it into something you can use to make your life better, and I have NO RIGHT to claim or even imply credit for that; if you went out and dug a garden because I went out and did a race, then great! I’d love to hear about it, love to hear how it went. Because you know your condition and you know that my condition is different, and you are an intellegent person. And if what I wrote made you think, I'd like to hear that too. But to claim it as "my responsibility"? Come on!
I was being an ass when I made that statement in "Anger", and I hope you can forgive me. I take people’s stories too, I read other people’s blogs or emails and I get a voice in my head saying, “Go and do likewise Beth!” But at the end of the day, that is my choice (and my decision to take those risks, not the people who I imitate), and while they inspired me (yup, they, and that includes you, the readers that "inspire" me – so back at ya! You probably 'inspire' me more than vice versa - seriously, I had no MP3 player, no music, so who did I talk to in my head during that race - well it was all of you!) I made the choice. And while I appreciate, desire and in may ways need the support to complete that choice, I am the one who has to actually do whatever crazy thing it happens to be and then I am the one who because of that choice has to live with the consequences.
So please forgive me and let me back in and tell me the stuff you are doing?
I just re-read that last bit and rewrote some, as it sounds like we all need to be very selfish and that we can't do things together and that is not what I meant at all. I do not achieve alone, and yes, people do deserve credit for helping me, for inspiring me and later I hope I make that clear. What I was trying to say is that, if people ARE inspired by me, and I am in a space where I don't know how to deal with that, or what to do, well, that's my issue! But I hope I am gracious enough to support them, and care about them and hope that they succeed, as they have done so often for me. But no, I don't have the right, to determine what they do, or why they do it or what parts of my writing they use or don't use, and the same of my life. But that doesn't mean we all live alone, that we all must struggle alone, grabbing what we can from others. I hope we work together, have fun together, like the May Madness weekend. I just, felt it was very wrong of me to put my own doubts, my own fears, my own worries about how others were doing because I didn't want bad things to happen to them and so I said something that implied those who are inspired by me, if bad things happen (as they sometimes do), they it was THIER fault. And that was immature and very wrong to write and I apologize.
And while I might or someone else might inspire someone to do something, in the end of the day, the person who made the choice, they are the ones who have to gut it through; who have to see it to the end. All I can do is try and support them as much as I can. And so they are the real (oh, another one of those 'words' coming up) heroes. Okay, I hope I explained and apologized enough and we can move on?
I realized today that I have a VERY surreal life. I mean, I am having seizures every day, and debating going to the hospital and then… a few hours later, go and do a 10K in a racing wheelchair. And then go right from the finish line, and the first aid tent to back to being on oxygen and not moving and having little seizures that day.
I have actually gone FROM the hospital, stopped at home to nap and then gone directly to boxing, or badminton with the hospital ID bracelet still on my wrist. So I admit, this is NOT really a typical life for anyone, is it?
So yeah, I went up tonight to do badminton because my right arm is getting purple/black and I wanted to see if that improved it. Well, the badminton DID make my right hand twice the size of my left hand (I showed everyone the neat ‘freaky human trick’) but then had to leave when my arms were green (too hot!). And now I am back on oxygen. And in pain so bad that I am doing the “how many minutes till my next pain pill?” Plus a new overnight care worker came; I said to her, “I’m not at my best, you know the whole 36 hours of continuous mind blowing pain.” I REALLY hope that tomorrow that goes back to normal: the annoying to aggravating pain.
But the thing is, how do I get to live this life where instead of being curled up into a fetal ball, I go out and do stuff? Is it because I am some super crip, or heroic or some dying woman who is living life to the fullest. The answer to that is no, no and yes. And some part of that is me, but the other part of that is the people who support me. Could I have done the 10K without Linda and Cheryl? No. I could barely wheel back to the van to ride home much less wheel down to the start and then back again. I could not have snapped the cold break packs, or stopped the EMT from putting blankets on me and warming me up. I did not get the chair ready the night before, they did. They put out my clothes, they talked to me and kept me calm. I could not have done the race without a woman named Janet who fixed my racing chair and gloves because she said, "I want Beth to do what Beth wants so much, to LIVE.....right up to when she dies."
Sure, I was going to badminton tonight solo but Linda nixed that and came and did work for her job on the laptop, just to keep an eye on me. That is how I am able to do all these things and live to write about it. In the same way, how is it that I am able to write EVERY SINGLE DAY? Is it because I want to leave a record, and have some meaning to my life? That I have set myself a challenge? Sure, but it is just as important that I am part of a community of people who are there to lift me up when I am down. The readers, those who comment or not, are part of my support network. They are my family, my friends and the people who I share my life and vice versa. The people who send me packages, and gifts and postcards are the people who are a physical part of my life. The 90+ people I send postcards to are people who I am emotionally invested, who I take delight in finding “just the right postcard” and “just the right sticker.” I do it for them, yes, but also I do it for me, to be connected to humanity and to care about humanity.
I am able to go to Goldstream, and to the Cemetery and to the 10K race and everything else because I DO have a net of people supporting me, some right here like Linda who hold me up. I KNOW that many of my readers do not, so making comparisons in such cases is unproductive. I am fortunate and I know it. What would I do without Linda? I would be lucky to get my groceries. Getting my stuff from the pharamacy and to my medical appointments would take up ALL my energy. It is because of her and others that I am able to have choices in my life; and about what to do with my life. And this week that choice was to do a 10K and now I have to recover from that. And she is there to help me.
Up at badminton, one of the guys who was pretty stand-offish for months came up and said to me, “It is great that you come out…..I mean, that you come and play badminton in a wheelchair at ALL is incredible.”
And I said, “Well, if I WON, that would be incredible, but just coming out and trying, that only gets me a ‘pretty good’”
He looked baffled. And was probably hurt. I wasn’t trying to diss him, I was trying to explain that being in a wheelchair and going three blocks to the Y is not incredible. If he wanted to think I am incredible, look at the time and effort I have put into the sport of badminton and how I am improving myself. I told them I was a bit tired as I had won the 10K race in the yesterday.
He and his girlfriend were totally speechless, “A 10K….in your wheelchair?”
I avoided the “I find it easier than dragging my body miles with my arms” line and said, “Well, in a specialized racing chair, but yeah.” They were blown into speechless. I was AMAZING!
There were close to 1000 runners yesterday, how many had cancer, or were recovering, how many had recent losses and grief, how many had arthritis or how many decided to lose weight and took up running by themselves a few months ago? I did a race. And yeah, because I am weaker, I am facing seizures and autonomic failure on a weekly and daily basis, it was pretty amazing, but I bet there were 10, 50 or 100 ‘amazing’ stories out there that day.
What is amazing is that I have a partner and a sister/friend who help me WEEKLY achieve my dreams, who give me the chance to make stupid choices. Who are with me during the good times and the bad and who help me try to feel an equal person after a loss of memory or when I have trouble speaking. That I have friends like Maggie and Lene and all the other people like Neil who write and care, all the people here on the blog: that is amazing.
To end with a smash of realism: am I worse? Yes. There is another D word that no one wants to use: dementia. Do I have it, well according to the technical definition, I do some days. Will it be part of my future, I hope not. Am I weaker? Yes. Am I thinner than a few months ago? Yes. Do I have less reserves regardless of whether I try to horde them or not? Yes. Have I had a remission? No. Am I going to? Probably not. Do I have to fight fear and depression and pain every day in order to do what I think will give my body the best chance for a longer survival? Yes. Will I continue to pursue my dreams, whether they be sending everyone who wants one a couple postcards and caring about 90 or 100 people I will never get to meet, or looking forward to a trip to San Francisco which may never happen? Yes. And I will use whatever means needed to get through a day, a week, a minute, an hour. I will use your stories from your blogs, I will use your emails, your messages: I need them. And I am not ashamed about that. I need them to keep going. I may not get to thank you individually, so thank you. Yes, I am taking your stories and using them to keep going. And anyone who wants to take mine is free to do so, the same with pictures. It has always been so (devo’s excepted). Just try not to sell them as yours.
And thank you for cheering me on on Tuesday. I heard every one (even the silent ones).
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