Right now, I have no choices about my treatment, or if I will recieve treatment, or about the progression of my diseases. In some ways that is a blessing: where I do not having to weigh up the agony of Chemo versus a statistical percentage. I just went out for a wheel right now, and got frostbite on two fingers, it was 18 degrees C. out. The yellow, corpse white is now a bright red. Linda says over the phone that I might have to stay in a bubble. I said, maybe I should start wearing more of those armwarmers.
But progression aside I still can make choices of how I spend my energy, or what I do, within limits. There are those who can’t.
Collette, who comments here, is spending Sept. 6-7th walking 60K for breast cancer. I don't think she has ever walked 30km in one go. She made a choice.
Breast Cancer is not only the highest risk cancer in women, but 1% of those who get it are men. Yet for men, detection before it has moved to the bone is less frequent. So for those who have breast cancer history in their families, it is not just daughters but sons at risk too. In fact, one of the reasons fatality in men with breast cancer exists is because they are unaware that it can occur.
I know of women who have had breast cancer, because like any woman over the late 20’s I can’t imagine not knowing someone. Which is why Collette and the Weekend Warriors are spending two days walking 60 km. A fundraising choice, and a commitment toward a world where one day we don’t know of a friend or relative who, each week, spent the day before chemo crying. Who vomited, who had insomnia, who had their hair fall out, who had the visual aspects of their body and their identity reshaped for their survival. And those are considered the “lucky” ones.
There isn’t a 60K walk/wheel in my city or I would have joined up (hey, another couple first aid tent to rate!). But I will be doing the Breast Cancer Run in my City in early Oct.
You may be wondering what this has to do with my reasons to live? It is because every day and every choice I make, there are people in hospitals and hospices who do not have those choices. Last night, for the first time, I had to be fed, so yeah Raccoon, I know what that is like, and I’m guessing it doesn’t get any more exciting or dignified. I did insist that I did not actually need to be fed, as I could drop my face in the plate and eat that way. “Like a dog?!” the night worker said in shock, “But that does not give you dignity!”
“Lady,” I said, “After you’ve sucked as many pain pills off the floor as I have, you’ll have no illusions about dignity.”
After the series of seizures, or during, I don’t know exactly, I was able to use the built up fork to stab the food but couldn’t turn my hand or arm. And when I held the fork the other way, I WAS able to bring it to my face: like my forehead, my cheek, my nose, my hair, just not my MOUTH…..let's say the hand and eye coordination didn’t work. But in that, having something taken away, I realized that I still have many choices left, mostly thanks to the care workers who actually DO care about me and people like Linda and Cheryl. During the last few weeks I have woken up in the afternoon paralyzed. But thanks to a new listening system, Linda is able to move, transfer and transport me from my nap area into the study where I can work and communicate.
I live because I can live. I do because I can. And I try when I can’t.
In a few short weeks Collette will start her 60 km walk, and I believe that she will make it. I think it would be nice to drop in to her webpage here and give her a message of support (click on ‘friend’ and donate $10 or more, which is $9 American and 5 pounds UK, all of which is tax deductible – and you can leave your message). There is a list here of where the money goes, though I personally will say that I was hoping for a LOT more money focused toward some sort of new mammogram technique which isn’t so darn painful.
But if she does not finish all 60K this year, that is not what is important, because after all, here in Canada, one of greatest athletes is the one who didn’t finish the race, Terry Fox. It is the dream, the choice, the attempt which matters.
As for me, the following week, I will be participating in the Terry Fox Run, a race which has no winners, no medals, not even an entry fee, just people getting together, raising funds for a world where there are more choices and less cancer. The Terry Fox run is unique not just because he wished to eliminate the competitive nature but because people of bicycles, on roller blades and wheelchairs are welcome. Depending on the city, dogs and even horses (or people on horses) are welcome to participate as well. For those in Victoria with dogs, the run in Central Sannich welcomes dogs, roller bladers, cyclists and wheelchairs. I will be going to Mile Zero which has a 5K and 10K. Geee, I wonder which distance I will pick? It has never been about the medals. It has been about the choices.
There are days when the beast which are these diseases and this pain is all over me, there are days when the beast which is the cruel crushing medical system will roll over me. But there will be moments, and minutes, and hours and days when I make choices, when I decide what to do. When I live because I can. I talked to Linda today about how I feel ever more so disconnected to the rest of humanity, that what I feel and experience is so far away from what they imagine, what I of a year ago could imagine. We talked about how it would be if things could be different, and what life would be like if her credit card was all paid up. I immediately said, “Well, if that happened, then I would spent it all on anime and other items that I would promptly give away!” And she laughed and said that is EXACTLY why she is getting a limit like $100 put on the card. I made her laugh. It was just a moment but I made her laugh.
Yes, one day I will have to live in a bubble of sorts, and probably be fed more and more meals. And I wish that one of those choices would allow me to wheel with Collete and Team Weekend Warriors in Toronto. I think doing 60km would be VERY tiring on the arms. But maybe, with friends I wouldn’t notice the pain until LATER.
I live because I can. I live because my grandfather can not. I live because dying is easy, because giving up is easy. I live because spending 7 hours to prepare and then recover from feeding squirrels for 45 minutes is still feeding squirrels. I live because choices can be made. I live because people want to take those choices from me. While I can, I live.
Terry Fox, in the interview in which he ended his run, and then while undergoing treatment set up the Terry Fox Run, said, “I just wish people would realize that anything is possible if you try. Dreams are made if people try.”
Posts mit dem Label reason to live werden angezeigt. Alle Posts anzeigen
Posts mit dem Label reason to live werden angezeigt. Alle Posts anzeigen
Donnerstag, 21. August 2008
Mittwoch, 13. August 2008
Reason #8: All that anime, so little time! (Pretty!)
I like many others before turn to literature to find myself both mentally and emotionally engaged, and to see my life and my interests reflected. 
However, whether in visual or print media, since I am not currently planning to become a murderer, rapist or other criminal (1/2 of TV shows), or a convict in need of escape (Prison Break). I think I would make a GREAT investigator or Abby in some tech lab and have applied to several policing and secret service agencies, including those with REQUIREMENTS to hire those with disabilities (RCMP, SCIS), but so far no luck.
Where can I go where an ordinary girl, who happens to have an interest in swords (Claymore, Utena), or books (Read or Die), or even doing dangerous things (My Hime)? Where is your orientation and relationships reflected in the world where Religious Right groups combine to kill programming (My Hime, Strawberry Panic)? Welcome to the world of anime.
So when I need to be reminded what my life is like from the back of the motorcycle, there is always one of the characters from My Hime (up at the start), who is very, um, compelling (also likes to throw herself off buildings).
Or when I get into what Cheryl calls, “My Old Testament mindset” there are anime for that too. Here is a nice poster from one (I got it in the post – mmmmm, who loves me.....um, me!).
Though I tend toward a series called Scryed, whose main character says, “Once you have decided what it right, and committed yourself, not matter the cost, no matter the opposition, there is no other way.” Later, while a group of people are held hostage and he is wounded, perhaps to death, instead of surrendering he prepares to attack. He has committed himself, no matter what the cost. It actually drives the opposing guy into permanent insanity. Hmmm, perhaps THAT is why I like it.
Then there is Linda and I, who while still shunned, judged and discriminated on in the real world. While in anime world, not only are whole schools lesbian (Strawberry Panic) but any good Shojo anime will have at least one lesbian pair or relationship (We just finished watching the romance, Myself, Yourself of 13 episodes which included a surprise lesbian pash confession).
Back in Real World, the BC medical system, who it seems hasn’t been told that lesbian marriages exist much less are legal discriminate from subtle to blatant: that’s what has kept Linda out of many an ambulance, and ER. My workers from Juan De Fuca took great delight in telling me that Linda was listed AGAIN as my “sister” when Beacon took over. I guess, “smoking hot lesbian lover of 15 years” doesn’t have a box to check on their forms yet? So is me having posters like this of the two of US with cat ears by the fireplace considered a “sexually harassing workplace” for my workers (I am the one with black cat ears, Linda gets white ones for her innocence!),
or are Linda and I being discriminated against by the workers offended by these posters and others. I guess I will just keep putting up more and more until I find out! (works for ME!)
And while there isn’t literature to cover what I am going through, there is anime, one called AIR TV,
where in a place I call, “Screwed up girl town”, we have 1) a self harming girl who goes into a disassociative state and cuts, and thus has to wear a ribbon on her wrist to stop her – blue haired (Check!). 2) A girl who has had a sibling die and can’t give her up. And 3) A girl who goes around doing and saying odd things (she says “Gao!” a lot, and her hobby is drinking the odd drinks in drink machines like “peach/banana” (Odd obsessive hobbies - check!). Only she is being affected with a memory disorder (check!), and a peripheral neuropathy which soon makes her legs useless (double check!) and leaves her in agonizing pain (triple check!). And she’s dying. Golly, what is it about this anime that could possibly speak to me? Oh, and she dreams of flying. This is a taste of the anime (for those who haven’t seen this AMV before) set to the tune, “you are loved.”
As for me, it is this video about a girl, who run the long distances, competes, and falls in love, once with a girl she trains with who is injured and then as she advances to the next round with Chris, a tall butch (with green hair?). It is about the nature of self competition, the nature of love and sports, the nature of sports and trying, whether you win or not. It is motivation, it is endurance, it is about tasting defeat and going on, and that defeat makes you stronger not weaker, it lets you continue with confidence because you have faced the worst and survived. In many ways, chronic illness and disability is like marathon running. Endurance running: That's what I did for over 15 years (because it is was the most physically and emotional painful sport I could find..until Sabre, then Epee). This is from the Series Battle Athletes and is titled Nothing Can Stop Us. Pinky promise!
However, whether in visual or print media, since I am not currently planning to become a murderer, rapist or other criminal (1/2 of TV shows), or a convict in need of escape (Prison Break). I think I would make a GREAT investigator or Abby in some tech lab and have applied to several policing and secret service agencies, including those with REQUIREMENTS to hire those with disabilities (RCMP, SCIS), but so far no luck.Where can I go where an ordinary girl, who happens to have an interest in swords (Claymore, Utena), or books (Read or Die), or even doing dangerous things (My Hime)? Where is your orientation and relationships reflected in the world where Religious Right groups combine to kill programming (My Hime, Strawberry Panic)? Welcome to the world of anime.
So when I need to be reminded what my life is like from the back of the motorcycle, there is always one of the characters from My Hime (up at the start), who is very, um, compelling (also likes to throw herself off buildings).
Or when I get into what Cheryl calls, “My Old Testament mindset” there are anime for that too. Here is a nice poster from one (I got it in the post – mmmmm, who loves me.....um, me!).
Though I tend toward a series called Scryed, whose main character says, “Once you have decided what it right, and committed yourself, not matter the cost, no matter the opposition, there is no other way.” Later, while a group of people are held hostage and he is wounded, perhaps to death, instead of surrendering he prepares to attack. He has committed himself, no matter what the cost. It actually drives the opposing guy into permanent insanity. Hmmm, perhaps THAT is why I like it.Then there is Linda and I, who while still shunned, judged and discriminated on in the real world. While in anime world, not only are whole schools lesbian (Strawberry Panic) but any good Shojo anime will have at least one lesbian pair or relationship (We just finished watching the romance, Myself, Yourself of 13 episodes which included a surprise lesbian pash confession).
Back in Real World, the BC medical system, who it seems hasn’t been told that lesbian marriages exist much less are legal discriminate from subtle to blatant: that’s what has kept Linda out of many an ambulance, and ER. My workers from Juan De Fuca took great delight in telling me that Linda was listed AGAIN as my “sister” when Beacon took over. I guess, “smoking hot lesbian lover of 15 years” doesn’t have a box to check on their forms yet? So is me having posters like this of the two of US with cat ears by the fireplace considered a “sexually harassing workplace” for my workers (I am the one with black cat ears, Linda gets white ones for her innocence!),
or are Linda and I being discriminated against by the workers offended by these posters and others. I guess I will just keep putting up more and more until I find out! (works for ME!)And while there isn’t literature to cover what I am going through, there is anime, one called AIR TV,
where in a place I call, “Screwed up girl town”, we have 1) a self harming girl who goes into a disassociative state and cuts, and thus has to wear a ribbon on her wrist to stop her – blue haired (Check!). 2) A girl who has had a sibling die and can’t give her up. And 3) A girl who goes around doing and saying odd things (she says “Gao!” a lot, and her hobby is drinking the odd drinks in drink machines like “peach/banana” (Odd obsessive hobbies - check!). Only she is being affected with a memory disorder (check!), and a peripheral neuropathy which soon makes her legs useless (double check!) and leaves her in agonizing pain (triple check!). And she’s dying. Golly, what is it about this anime that could possibly speak to me? Oh, and she dreams of flying. This is a taste of the anime (for those who haven’t seen this AMV before) set to the tune, “you are loved.”As for me, it is this video about a girl, who run the long distances, competes, and falls in love, once with a girl she trains with who is injured and then as she advances to the next round with Chris, a tall butch (with green hair?). It is about the nature of self competition, the nature of love and sports, the nature of sports and trying, whether you win or not. It is motivation, it is endurance, it is about tasting defeat and going on, and that defeat makes you stronger not weaker, it lets you continue with confidence because you have faced the worst and survived. In many ways, chronic illness and disability is like marathon running. Endurance running: That's what I did for over 15 years (because it is was the most physically and emotional painful sport I could find..until Sabre, then Epee). This is from the Series Battle Athletes and is titled Nothing Can Stop Us. Pinky promise!
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.
Abonnieren
Posts (Atom)
