Outdoor wheeling: Tales of the Neighborhood and Beacon Hill Park

When the rare alignment of sun, a ready wheelchair, and me dressed and with energy occur, I head outside even if I have to pay for it with an erratic heart for the next 36 hours.

For clarification, my heart problems which stopped fencing and started wheelchair use was POTS plus autonomic failure (postural hypo--tension) which meant my heart went above 170-240 beats per minute if I was upright even for a minute or two, plus spikes in blood pressure which caused tremors and mini-strokes. Now, I have a collection of upper and lower heart erratics, which are not only painful (for example, if my ventricles, the lower heart, don’t beat while the upper heart does, it is like water filling a balloon to bursting – where bursting is chest cavity bleeding: that is one of the eight to twelve erratics) but indicate that my autonomic system, the part which does the stuff you don’t have to think about, does not have the ability to exert itself AND maintain a steady heart beat for the rest of the day. The rule now is ‘1 day, 1 activity’ whether that is a shower, or an appointment, and even then, I can overexert myself. But I am trying to find boundaries which allow me to do something and go on to live another day.

Last weekend, a late sun through cleared clouds allowed me out to wheel a block or two with Cheryl and show her some of the ‘tales of our neighborhood’. I am sure your neighborhood has local characters and things of interest. Thankfully the guy with the long beard who used to be on the house by the corner and comment on my clothes, ass, and breasts has moved on to where-ever lechers with poor impulse control go. Across from us is a short closed off street which has old houses and this lovely garage, showing that all one need do is stay still long enough and you too can be on of William Hope Hodgson’s Fungus people. It also shows a ‘Canadian VW camper van’. While parts for cars are regularly made on both sides of the US, Canada border (and now that our Canadian dollar is higher, expect Canadian plants to open up to exploit the cheap US labor: “They seem good chaps, by jove, but use some local lingo, and not the Queen’s English.”) in the 60’s, 70’s and 80’s there were particular colours of paint only used on Canadian sold Vehicles. Orange, yellow, and green all had separate shades, and the Canadian colours tended to look like faded photos from the 1950’s. One of the ways I could tell I was back in B.C., Canada from Los Angeles, were the car colours from my childhood everywhere with the yellows, browns, oranges, and odd green cars paint colours unseen south of the border. I have searched and searched but found no reason why Canadians were given different colours.

There are several squirrels that use the old 70’s apartments in the area as good places to store food, since they have large gardens. Here is one black squirrel with a red chest (??) who is busy rearranging the soil. All squirrels seem to have OCD tendencies. With the green spaces taken over, the barn owls, I have not seen for a while, nor the family of raccoons, however, our fence is still part of the squirrel highway and Linda saw a bald eagle sunning a while ago. I have seen a hawk in the park (beacon Hill), and an owl, and there is supposed to be a heron there somewhere. Deer has been seen within four blocks of our apartment.

When we moved back to Victoria, and found out that our apartment rented while in the UK was in the area we wanted (lots of trees, open space, all in walking distance), but had been, until we moved in, a crack den. We looked around as we still wanted this area but more space and privacy. We saw a sign advertising for ‘ladies only’ rooms, and thought it might be a boarding house. This is only a few doors up from our current apartment, while an actual boarding house was round the corner (which I called 'The Addam's House' due to number of Ambulance trips from there), in the heritage house they tore down to build the condos across from us. Once we answered the ad we found that it was not a female renting the room, but an older guy....who liked older women. There was a lack of seperate cooking or bathroom facilities. The rooms were furnished but the male older owner required that women NOT retreat into their rooms and shut the doors but that they must stay in common areas until at least 8:00 pm AND keep the door open to their room. This did not sound like a room for rent but an elderly voyeur who could not get out to peep in windows anymore so hired rooms to ‘ladies’ and required them not to close the door. Too weird, no privacy and we ended up finding our apartment. Five years later, the same sign, like a venus flytrap, has remained up the entire time. It also looks like some of the extra ‘Canada Green car paint’ was sold to do the trim on this house.

This week, another sunny day, the day after showering meant a trip out to Beacon Hill Park. It was very GREEN, and in the open sunny areas, where the mud flats reflected the heat, the Sakura blossoms of this cherry tree had opened.
The other trees were just starting to open.

In the shady grove, you can see two squirrels, a grey and a black on either sides of the tree. The squirrels were out due to the sun but young and skittish, except for the older squirrels, who knew what the sound of a plastic bag meant. The older squirrels however would retreat up a bit into a bush and then slowly gnaw down the peanut.
The flowers on the sun side of the vegetation islands where the squirrels hid and played had opened. Meanwhile, young squirrels mostly stayed in the shade of the grove, where the overhead canopy hid them from crows and owls. Here they leapt and raced like hyperactive younger brothers. This also included getting distracted from peanuts and suddenly getting into fights with each other.

Here for example, one squirrel is stretching out, finally taking the peanut from my hand, and above him you can see a streak of brown in motion. This picture is a still from a short film Linda took and up in the tree, just out of sight, is a black squirrel who took the peanuts and went up there to eat them. When this grey stretched and grabbed the peanut, the black squirrel threw the remaining shell and one of the two peanuts still inside down and nailed the grey, bouncing it off of his head. Oh, the lovely woodland creatures, and people say how they reflect the glory of god. It appears then that god is like a sibling on a long car trip who can’t stand to see anyone but themselves get any treats. I do remember one birthday party very young where the young girl spent most of the time running around trying to make sure none of the children her parents invited (that included me) got to eat or take any of all the lovely food. She ended up licking most of the icing off the cake before being carried out screaming by her parents. Squirrels can be like that.

After an hour, we headed back, and I just now remembered that Linda promised me a butterscotch sundae for going out. She used the ‘oh dear, out of time’ routine to escape ice cream payment then, but I am definitely owed one ice cream from the Beacon Hill Drive in! I like going out as the sun and new growth is full of color and the young kids are brought out in droves, very cute – however, going to the park, even in a wheelchair to take pictures of small children is a good way to end up on the neighborhood watch list, and then I would be a local tale (the bad kind).

In Surrey, B.C., in first grade, the fifth graders, the ‘older’ kids, swore they was a body buried in the woods behind the school. And the one guy most adamant in telling us the tale said that whoever found the body FIRST would get a NEW BIKE. The ‘body behind the school’ is common (we had that in LA at the elementary school there), along with the woman with lots of cats being a witch, but since then I have never heard of a reward for a six year old finding the body. Maybe we were a little TOO starved for entertainment out there (a scar from childhood is from when I hid under the trucks at the plant across the way, raised my head up, cut myself on my crown, felt blood and then ran screaming home, shouting over and over to my mother, “HELP! HELP! I CUT MY HEAD OFF!”

If you say ‘Potato’, I’ll say “Potatoes’!

Thanks everyone who has taken that precious time from a life too hectic to read this post. It seems that we are at the future of Luc Besson's Taxi or like Harrison Ford in Blade Runner: Do Androids Dream of Electric Sheep, barraged by images, messages, ads. Blogs now all require moderation due to spam and I get up to 40 spam messages to moderate a day (ug, no I don't want to know how to use escort services, thanks!). I use moderation not to ‘screen’ messages from people but because I find word verification difficult and I know others do as well. Also, being rejected and told you are spam by blogger when trying to comment BACK is humiliating. I am trying for a disability friendly blog.
I looked back a year and realized two things: 1) I am not responding enough to the comments that are made. I appreciate EVERY comment, and I try on alternating days to comment. I don't think that is enough, since many readers and commentors have chronic disabilities. So I am going to try to comment on every comment made AND I am going to try and blog more often, at least three if not more times a week.

I admit, these days (due to neuropathy) it takes an average of six hours to write a blog, which is 2/3rds of a day. Then add in a couple appointments and there goes a week. BUT, but YOU are the ones who are important. You are important to me, and what you think is important to me. So when you spend your time reading my writing, and writing something back I am going to try as hard as possible to respond.

b) There are a lot more personal messages. Hey, I love emails and PM because I am not exactly going out and about in the world anymore. Here a big day is when the guy testing for putting up the sling talks to me about how the beams in the ceiling either go this way or that way (honestly, that is what today was: I was in bed, with the full oxygen mask on, and he was on a ladder – but it was HUMAN CONTACT!). I looked back at the comments and realized, "Now that person emails, that person emails, that person emails, that person messages…”

The sad thing is that the more people email comments, the more hours I spend emailing back (even if only half, when an email takes about an hour). BUT, I want to be friends, and be there for people. And I will keep responding to emails. But to help ME, if you could, pretty please, split your message into a) comments on blog post – which I WILL try to reply to and b) an email – which I can try to reply to, but you understand that oxygen, hospitals and general funk sometimes delay this! While it looks like more work, it is actually the same, just part of the email is a comment (you can even cut and paste!), and the rest an email. While for me, I can use the time I save to make sure I respond to comments AND do more blog posts. Sounds like a win/win? Gosh, I hope so. Suggestions are appreciated!

And in closing, milk does a body good! Particularly if you are a cat girl (Linda has already asked to wear my cat ears for Saturday!).

Helmet Head the Squirrel and some 'golly gee whiz' nice flowers

I woke up Saturday to construction noise BUT a sunny day. So, good day to see the squirrels. Maybe squirrel mothers were a) desperate for food for childbirth or b) desperate for food for babies. I got dressed with help in a corset with my Lip Service hoodie and arm warmers. Here I am reading Tea for Two (thank you the person who got this for me a present, it is a very nice Boy Love story about an overly active guy who gets sent to the Tea Club as detention, and meets the refined President. The reactions to the traditions of the tea ceremony are laugh out loud, and his attempts to become refined and dignified and good too. We find that the President has been taught to act as an adult and be distant and refined since a child, and this ‘wild child’ is teaching him how to smile – he hasn’t worked up to a laugh yet, that might be in book 2!). I just talked to Cheryl and she recommends it too. The lesbian side story at the end of the book about the sisters has no influence (lie!).

We saw a lot of people, a couple 2 to 4 year old boys chasing squirrels with sticks and lots of crows (like hundreds). So not a lot of squirrels, and the ones we saw were mostly young and twitchy. Now, looking at my face, does my desire and focus to feed squirrels make me look like a squirrel? Same teeth and hand positions. Odd. Despite the giant squirrel in the wheelchair they came and took peanuts anyway. But one grey squirrel kept retreating up a tree nearby, going out on the branch and then eating his peanut while pulling off bits and dropping shell bits on me. I am not sure if this is squirrel humor or not? When we visited the the Hoh Rainforest, we saw young black squirrels swinging around on the moss. And the rangers said we were lucky as they, due to the uniform, get pelted with cones from the squirrels when they walk in the woods (cheeky squirrels).

Despite the fact that it snowed yesterday, SATURDAY was sunny and Linda stole the camera while Cheryl and I enjoyed a break and a chatand went off to take pictures of the flowers that have come up (hope they are still alive after the snow). I could use some help from readers as I show you this, um, blue (purple?) flower that looks nice. And over here are a bunch of yellow flowers that had come out into bloom (I know roses, carnations, lilies, daisies, lots of flowers, okay, it just turns out there are a few hundred flowers around where I live!). She also took a picture of me beneath the Sakura tree.
I found another squirrel who was brave enough to go through the crows and kids to get a peanut, who then acted like I did not bring the high quality peanut she usually demanded. She however was not the oddest squirrel of the day. Hands down, that would be Helmet Head, a squirrel who seemed to think that life was made of American Football (there are also some males during football season who seem to feel this way, if beer is included). Helmet couldn’t do a straight line if his hunger depended on it (guess he never learned a 10 yard buttonhook), but rather did complex feints to the right and left, bobs and weaves just to go an inch forward. So, after a series of blitz attacks, Helmet had reached the goalposts (you can see him standing up by the tree). I am holding out a peanut maybe 2 feet away, pretty easy right? Haha, that’s because you don’t see life as fourth down on the 30 yard line! Helmet leapt IN THE AIR forward, the velocity skidding his body forward over the scattered nettles.

Helmet is only a foot away, but instead of coming forward, in a blinding bob and feint to the left he then leapt to the right, completely fooling the opposition! (I am still holding the peanut out with sort of a dazed look on my face since Helmet I think got a few too many hits on the head). Arriving, he spins,and instead of going right or left, he does a shuffle step and bounds pretty much EXACTLY where he was before. Only now, with the momentum carrying him forward he immediately launches into the air again and leaps left atop the peanut which, after watching this squirrel burn up about 5 times the energy in the peanut, I have dropped.
Helmet is VICTORIOUS, touchdown! And though only 4 or 5 leaps to the left and right, he managed to get 18 inches forward. In true Helmet Head style, after the peanut is safely tucked in his teeth he bounds, getting some significant air time as he bounces a rebound off of the side of this tree to make his getaway. Good luck Helmet!

"Every party needs a pooper and that’s why they invited me, ‘Party Pooper! Party Pooper!’" – that is the odd song which means we went home after this because I had frostbite in two of my fingers. But I got to see the outside world (it is big and has a very high ceiling!). At home, we worked on the postcards for this week for part of Saturday and Sunday and did 60 postcards. That is a good number, sixty! (of course 61 sounds MORE impressive...but sixty is good too). Thanks to several donations of postcards from different people over time, I was able to meet some rarer requests. Thank you very much for both the requests and the assist with the postcards. This week due to some connectivity issue, both Cheryl and I were taking more time and being a bit more careful with the cards, so these are really postcards of deliberate care (after dropping lots of things, from toothbrushes to drinks, making sure I wasn’t stamping on my fingers instead of the postcard was a high priority).

So, was it a good weekend where you were?

The mystery package, and a Sakura outing

I decided that today was the day to open the ‘mystery box’ I got from winning the Kodak picture competition (with Otto the plushie deciding to watch). But first, my beloved Canon Camera from our Trip to Japan had returned from being repaired. It kinda DIED, and Canon charges a set fee of $89. We sent it off as getting this Camera now would cost about $600 (for the fold away viewscreen and other features which are wheelchair friendly). It was back in a week and just in time for……a sunny day and us to see the Sakura Blossoms.

For those who are not obsessive Japanese culture and language types, Sakura means ‘Cherry Blossom’. And because in 800’s, the Emperor and nobility liked to go out and watch the cherry blossoms as they came into full bloom and fall from the tree, this has become a National Holiday in Japan. While in Japan,TV news reports the state of Sakura (the type of cherry tree blossoms) buds and blossoms and estimated dates of the festival for each city came before the weather. Each city declares its own Sakura Festival as the different tempatures cause the trees to blossom at different times. Hence ‘Sakura-Con’ here in Seattle in April also when a 2 day holiday has 16 million people come to Kyoto to view the Cherry Blossoms, or go to Nara to feed the deer.

In Sakura, everyone goes as quickly as possible (gigantic traffic jam) to where the main trees are. In Kanazawa, the ancient Japanese Capital, it is by the Castle and one of the ‘great’ gardens of Japan. So all roads leading there are packed with people looking to put a blanket on the ground near or under a cherry tree. Then, the blanket becomes a sort of ‘home’ and your friends come by (taking off their shoes before stepping on to the blanket) and they can bring food or buy it at the festival stalls. But there is a lot of drinking, and thus a lot of shouting, and bets and play ‘King’ games (you draw lots, and the ‘King’ gets to make the other numbers do thing like cross dress and sing the corporate anthem). Linda and I saw the Sakura Festival in Tokyo and in Kanazawa and the end of it in Kyoto.

Here in Victoria, in the 1930’s the emperor had his daughter stay here as the port of loading for the Empress of Japan transport Cruise liner. B.C., a seperate Colony had an embassy both in London but also in Japan in 1888. Canada had one several decades later, indeed the Emperor of Japan visited Canada in 2009 to celebrate 80 years of formal relations between the two countries, the first visit since 1953! This gave the Japanese who had moved to Canada a chance to do what they could not do in Japan: see or speak to the Emperor. As one Japanese immigrant said, “He represents 1,000 years of history.” The Empress of Japan built in 1930 sailed from 1930 to 1942, (when, due to war it was brought to Victoria and renamed, Empress of Scotland). Due to the hospitality, over 30 trees from Japan and the Emperor’s Garden were brought over and planted around the Empress Hotel (named after the series in the Canadian Pacific Cruise line, Empress of Australia, etc). Over the years many trees from Japan have been given to Vancouver (Stanley Park), Toronto (Hill Park) and the US in New York (Sakura Park in Manhattan, 3012 trees given in 1912 to celebrate friendship). Here are some of the trees on behind the empress, fronting a motel which, of course, is closed and being turned to condos!
Sakura is so important to Japan it is when the Calendar starts and ends, when both the fiscal and the school year starts, in April, also when coming of age ceremony occurs. So annually the first day of work or school is the start of the Sakura season – most schools have Sakura trees so that life events are all framed around the Cherry or Sakura blossom. It is also on the 100 yen coin (about $1). It was a sunny day yesterday so Linda pushed me out and about, into the van, and we went off to the library, after a stop to see the Sakura blossoms.

As you can see, I can now read print material, at about the same speed as before, however, as the day continues, my ability to read and what I can read decreases. Here is the advantage of having a wheelchair: a) being able to see the bottom row and b) being able to stack lots of books and manga on my lap!

I had not been to the library in a long time (a year, more?). One thing about memory problems is I only remember the ‘last memory’ regardless of whether I have visited or not, and if the ‘last memory’ is two years ago then people look kind of different and so did the library (there is now a free PC ‘gaming station’ with flatscreen monitors). But they seemed happy to see me again and I was off with all my booty back home.

Time to open the box, say I. ‘Not so fast’ says the bag it has been sent in. Arg, why are these always ‘puzzle boxes’ sent to defeat those with peripheral neuropathy! I am not sure if I should come back with ‘You are sly but so am I’ or just ‘HA! Try to stop me will you!” (I WILL use my teeth, I often do!)

I am not the most subtle when it comes to opening stuff, and if you think that your wrapping paper has been carefully folded out of sight, I am sorry to disappoint, or as people say, “Oh I see your cat got to the wrapping paper.”

My puzzled face, “No….er, I mean, yeah, that’s why it is all shredded like that.”

Ta da! I did it!
The prize was the RRP $169 Digital Picture Frame M820. It literally sings and dances. Or rather it has a touch screen for instructions, can store 1000 pictures without an external source (or use thumbdrives for more), can play movies and mp3’s. So with this handy Digital frame so you can have hundreds of pictures playing along with your favorite music. YES, do that and YOU CAN become the most annoying person at work. SCORE! I will use it in the bedroom I think where I can watch some of the videos we made and listen to music.

It was nice, but where were the shiny baubles? I have the brain which likes…. the pretty, where are the goth earrings, or art doujinshi, manga, um, gift certificates or a nice set of motorcycle leathers with a motorcycle to go with them! Um you know..more. Was there more, was there more? Seriously, you never did this as a child?

There wasn’t more.

I did however, roll up to boxing 30 minutes later. There I did way, way, way too many sit-ups (over 200) and push ups. I even had Linda put my legs up on my wheelchair seat while I was down on the mat and used weights in my hands and did even more sit ups. (I was um, 'trying to sweat' not 'trying to show the new class that I was as tough as those sleek girls in the yoga outfits'). I also did ‘transfer’ push ups (where you push on your fists to raise your butt off the ground and fist walk over to a new place). Then I brought in blocks and did even more transfer push-ups. Oh, I sweated, a lot. I really sweated. I drank over 2 liters of water before the nap and 4 liters after – and then I could finally pee out some junk from the muscles that were rebuilding. So I am sore in places I feel, and sore where I DON’T feel (Linda just says they are very hot) which is kinda weird. How can I rebuild or strengthen muscles I can’t feel? Anyway, a productive day I think. And a new toy to play with.

Giving in to winter (and Hello Kitty in Hawaii)

You may have been sitting down to dinner. Some people may have been starting to cook. Others were thinking about the raking of leaves as they watched the TV. There was shopping, and meeting of friends, warm drinks and fireplaces.

And Linda was so desperate she was scrambling up and over me, my head held upright, her fingers pinching my nose and breath, then count, two, three, four, five, six and breathe.

And another sip of wine, or adding a bit of basil to the steak.

See, no one really wants to talk about the sort of brutality which is tearing up me, Linda, Cheryl and our household like a bulldozer, like a jackhammer. So we talk about cats. Instead of broken bodies and brain damage.

While some were getting dressed for a party, while some were starting to think about dinner. While some got in the car to head out to a restaurant, my brain was dying, the parts which told me to breath were broken, the parts that told me to expel carbon dioxide were broken, the parts which told me if I didn’t get oxygen in probably about three minutes I would have permanent brain damage were broken, the parts that told my heart to beat steady and supply that oxygen BROKEN.

MY BRAIN WAS BROKEN. For me, I was not unconscious, I was not ‘out of it,’ I was dead. And unless Linda and Cheryl could get some part of me restarted and soon, the pictures that my brain was flashing to me, the final S.O.S., that final call of distress, which said it was out of oxygen and would soon cease electrical activity would stop. And then I would be a corpse.

Linda and Cheryl worked on me for over an hour. Linda said that in a way, it was like no time at all, and in another way every second ticking away as they tried one thing after another and it just wasn’t working, it wasn’t working and my body was lying there, my heart beating erratic, on and off. When the body cannot expel carbon dioxide it gives a cough. That is why EMT’s and Linda cupped a hand in front of my mouth and nose, waiting, waiting, waiting, no cough. Cheryl came in and did the same and looked up as Linda said, “I tried that, it isn’t working!” Because I was broken. So Linda manually lifted up my torso to expand my ribs without the diaphragm……but I wasn’t breathing. So Cheryl was forcing air in. Forcing air in…and again...and again...again...again....again.....again…

And people were finishing up their meal and sitting back, sated. People were texting and calling, some were at a resturant, some at a pub, in front of a fire, and an hour had passed. Their lives, for the most part better. This was after all the weekend.

Though I was breathing a breath or two off and on, my hands were still black. And I was too weak to do anything but blink and try to stop the feeling inside of falling backwards into a dark well. Cheryl called to me, Linda rubbed me, anything, to irritate, to contact, because a grouchy Beth was not a dead Beth. And sometimes I did breath, but already I had not…..for minutes, for long enough for bits of my brain to die forever. Not because I did drugs, not because I drank for years but because I have an illness.

How was your weekend?

I say this because no one wants to talk about it. And the more no one wants to talk about it, the more isolated I become, the more isolated Linda becomes. The more my fear grows. The more our fear grows and the more I don’t think I am going to make it through this winter. Why? Because if losing part of my brain, having it cut out in an operation to delay my death means nothing to you; then losing part of my brain forever because my autonomic system failed across the board and will continue until I die also means nothing. And then where do I get the will to hang on?

No, I don't have cancer, but both diseases kill. Or is cancer sad and understandable because we ‘get’ it, but me, going out and getting Linda a stuffie, a plushie and then having the same experience just not on the operating table is confusing? It isn’t confusing when Linda is terrified of my sleeping. It isn’t confusing when I am terrified to sleep. It isn’t confusing when I feel alone. Lonely, isolation, do you know that tune?
Will people be okay to talk about it when my hair is in wisps as if I have had treatment? Or look post surgery? Or get that yellow skin hue of an ill body? Because without my consent my body is working on it. Shall we call it Cancer instead of auto-immune disease, since one is cells surviving and reproducing against your own body (cancer) and the other is your defence system deciding that you are the enemy and attacking you (auto-immune), like in Lupus it is usually cartilage until your tendon is eaten. And for me, it is my brain, my thyroid, and a few other places. That make it less scary. How about I have stage four cancer in every lymph node and most of my bones? That make it sound more cheerful?

See these last few years, have been a fight, where Linda, Cheryl, I and a few people have tried to stop what isn’t really that theoretical. This is from about a year ago. I would be DEAD, cremated and spread now if we had not gone to the hospital and now I take most of my nutrients in liquid form. Look at her and tell me that is a healthy person. The irony is that she is far, far, healthier than I am now.

Here I am just starting the journey, when sexy was an option. Only since there isn’t any chemo and radiation I get worse because there is a war going on inside me: because there really isn’t any hope. Just a will to go on. And now, when I talk to no one, when I see no one, when I don’t leave the house. When Linda is worried that the 13 postcards I did instead of sleeping two more hours Sunday morning might cause it all to happen again, more brain damage. She knows that I love people because of what I do. I know that I don’t need to love myself. Love is action.

Here is this spring, before I managed to get Synthroid, using a day's energy. Would I have made it through this winter without that? NO.

Already the positive effects of Hawaii are gone. And what now. I am a person who remembers 2 days, maybe three and maybe some people are envious because I went on a trip I can’t remember. No, that’s not true, I do remember things, the things I remember are the actions I took, the memories of what to do for those I love.

We were looking at a slideshow of the last two years and Linda asked me, “Do you remember? Those places, do you remember?”
I said, “I know the place because of the name on the folder, and I know myself because I am.”

Linda didn’t understand.

I explained, “I may not remember but whether doing a victory sign or wheeling over a tree stump or sticking out my tongue, I am ME, I am ME and so I am glad I did those things.”

The thing I remember about Hawaii are the things I bought for everyone. I wanted to bring everyone with me on the trip. So when the others went to bed I wrote and posted the blog. I also wrote postcards, and stamped them, posted them, from Hawaii, and the first week back. Each one, every part, by myself, because each person matters. Because the only way I can remember anyone is to remind myself of them EVERY DAY. To know them as if they were family, so they end up family in my mind.

Linda said that when she went to the Mauna Lau Factory while I was going around talking to a woman just diagnosed with Lupus and getting presents for others (they have diabetic dark chocolate macadamia nuts, how cool is that?) she was watching me and saying to herself, “I am going to get something for US!” At the end she, one of the bags she is holding is for us, the rest are mine...for others. Like this Hawaiian shirt as a card, for example!
Not ‘for others’ like people saying: ‘Please pick me up xxxxx in Hawaii’ but because I think every day of as many people as I can, I think, “What would they like?” And so I get things. Often each item I get is for someone, and though you may not like it, there is someone out there, maybe not on this continent who does, for whom it will matter. And Linda said, “You brought them along with the blog, you brought them along in getting them things, but do they bring YOU along with them?” No, or maybe, I just don’t remember those parts, but no. And so in one way, I am alone and terrified, I am on the downslope again, or maybe that is all I can remember, my health on the down slope and everyone is busy with ‘things that matter’, and ‘commitments’ and as Xmas comes, they will become more busy. And I would keep Xmas, except no one would come. And I would rather have a letter than a card preprinted. I was sick because I had doctors who could look at a stick figure in a wheelchair and NOT do anything about it because it ‘took longer than 10 minutes’ – see that is all THEY get PAID FOR.

Yes, part, now a large part is that isolated and scared girl. Is that person staring into the autumn down into winter. But still I win as I spent today scraping together bits off the end parts ($10 here and $2.63 there) of five credit cards to put together an a purchase that took five items off of wish lists of people and bought a total of nine presents.

“Why don’t you just buy for you?” Linda wants to know.

Because I feel I am out of time, I feel that, it sits on my back chattering away. And the dead are very poor communicators.

Because I was in Hawaii and I had these people, these dozens of people (many from the postcard project), people that all matter and yet people who I can’t tell anyone else about, I can’t talk about them here, and why I needed to make a difference. I can tell you about a comment last week which said, “I would have killed myself this week if it hadn’t been for you.” That is what I remember and that is why I when I went on the trip to Hawaii I blogged, I posted, I bought what I bought.

In the same mall is the four floor Japanese department store and the official Sanrio store. In the Hawaii Sanrio Store is the 35th year celebration, which has ‘hand towels’ of icons from different years. I bought some, like this dolphin because each icon is something I feel, I hope, I know a certain person will like. And I am in Hawaii, and they are not, and yet I love them. So I get this very cool 3-D New York notebook, of Hello Kitty as a cabbie and wished later I had gotten one for myself to keep. But I only have so much money (and only so much more I could borrow or beg off others).

And here in Hawaii Sanrio was the tomboy Kuromi as a surfer with attitude. I knew where hand towel is going. Plus these odd Pin-Up style girls holding Hello Kitty ARE official products of Hello Kitty. There were also postcards, like Hello Kitty doing snorkeling. I missed those but Cheryl picked one up for me. There is someone who does LOVE, because I have my own tidepool, it is at my desk and I can look at it every day and remember. To the person who sent it: I want you to know, I look at it and remember.

While over at the department store was a totally different style of Hello Kitty and other products like the annual Washi (wood block printed paper). This is the only set I could afford, with both the wood blocked colors on the watermarked paper but also wood block image and colored envelopes. It will, of course, go out as letters and notes as long as the hand lasts. Today I couldn’t pick up a 7 inch around container, I tried and tried and I couldn’t pick it up. So I better write fast, I think.

I bought as many postcards as I could that were Washi and woodblock colored. Each book shows on the front the season and the four images that each paper will hold. Here we see bunnies through the four season and the other are plants. Each postcard, whether it is this one of summer, is unique, the paper sensual, and bought to be sent out and never seen again. Like these bunnies of autumn.
Here is one of the postcard images from the plants Washi postcard book. I also got a Sakura postcard book which shows different branches and arrangements of Cherry Blossoms (Sakura). The Japanese year is determined by Sakura (which is announced in different cities by the opening of the blossoms and then an immediate festival). School starts when Sakura occurs, the YEAR starts around Sakura, which comes from when the emperor and entourage would like to go see the cherry blossoms open. Here in Victoria, we have 39 pre-war cherry trees from the emperor – like a gift of the same opening and joy of Sakura. Calendars may have January and Feb. on them but are given out in April. The blossoms of Sakura.
At this store there was a Hawaiian Tiki Hello Kitty strap (gotten by Cheryl – what was I thinking – I was too slow!). While I found a very rare, and the only one there, Hello Kitty puzzle with Sunflowers, for Japan sale only. There were a couple puzzles that were Japan sale only and probably ones that normally would have been used for ‘reward points’ (after you buy $1,000 – you can claim the points for the puzzle). Puzzles have art pictures that can’t be bought elsewhere and usually come with glue AND framing instructions.

I did manage to find two Picture Holders. These illustrated folders hold the two pictures on the inside of the folder, protected by a plastic covering. They are unique for Hello Kitty, one is a traditional child of the Samurai House lineage in her Kimono, much like I saw at Sakura in Kanazawa. And she is playing with the traditional Japanese ball, a toy which matches her kimono. The other is Hello Kitty also with the Samurai House, amusing herself in the traditional carp pond. This was an imitation of the emperor’s Palace in Kimono where the pond was the seas of Japan and the land around representing his holdings and duty. The white walls and tiled tops of Samurai estates which held the House and outer houses (like a bridal house to be lived in for the first year), would also have a pond, imitating the emperor. These are for sale in Japan only….and this Japanese department store.

What confused me were these stationery sets. I could only find one of each, one was of strawberries and one a ‘cute and cuddly’ Hello Kitty stationary set with stickers which is for sale in GERMANY only. Sanrio has things which are for sale in each country only (you will be glad to know that the USA has a Hello Kitty slot machine for children to learn how to get gum!). For example, I send out Hello Kitty with angel wings on blue velvet touch stickers, and those are only available in FRANCE. So these two cute stationary sets, only available in Germany, why were they here next to all this ‘For Sale Japan Only’ items? Best to just slide it into the basket and say nothing.

As we traveled around, there were stores we went to and found stickers, some were craft stores, some were National Parks, State Parks, and scrap-booking stores. I got stickers when and where I could, and I already knew who half of the stickers were going to and I KNEW that I would find someone to love for the other half. Because love means action, love means what I do, love means sitting there at 4 a.m. trying to find the one sticker that will make someone happy. So some of these, cost $4, some cost $6, vellum stickers were actually cheaper compared to others. It matters because you matter. Do you get that? I don’t know what happens in your life, but every time I send something to you, every time I send a postcard, I am trying to say that it wouldn’t have been the same without you with me in Hawaii. That it matters. At least it does to me.

So for some people I searched out the rare and interesting flowers, I checked very carefully those who needed plants in pots inside and those who needed plants outside. It matters. Because each person matters. I can’t tell you, I can’t the stories I know in my head, but when a month goes by and there is one crossed out name, and another and another because they died, it is like crows ripping parts off of me. I remember last winter, and Linda coming in to find me crying with two pages of stickers in front of me, going, “No more, No more!” Because winter is when people like me die. It taxes us. But also it isolates us.

Why does it isolate? Because if the readers of Screw Bronze can’t talk about the fact that I came 20 seconds or a minute or a few electrical brain signals from dying on Saturday, because I have a disease where my own immune system is smashing and destroying my brain, what luck is uncle Bill, and niece Sally going to have approaching a sick relative or friend? If love is action, then when the visits get less and less because people have ‘commitments’, parties and warm houses to go to, where there aren’t scary tubes and pumps and hissing. “I don’t know if I can do this?” is what I have been told more times that I can remember before going to a hospital with someone. For me, I thought the same thing when I was 16 and went to see a classmate after a heart operation in ICU. It turns out that caring about the person is more important than the scary parts. But for many, it is a host of dinners and parties and then also, MAYBE, a visit to aunt X, you know, the sick one.

I got these postcards of the Green Turtle as seen in Hawaii, an endangered species. I haven’t sent them out yet, because I only managed to find the one pack and I don’t want to make a mistake. While for another person it was tea – I mean, many people take the daily tea ritual very seriously. And for me, back in the Japanese department store I found a washi notepad of Yuzen Kimomo pattern. I found many different styles but again, how can I justify, so one will have to do. For those who can’t be here to get it for themselves.

So that was most of my ‘loot’ from Hawaii. Which, I now have found means for other people, ‘stuff I got for me’ while for me it was ‘stuff I got for everyone else!’

I still have a lot of days and weeks and animal pictures to get through to the spring. And for me, a week is about 2.5 days. I don’t know why, I just know that is what Linda tells me. For me, it has already been a week since Cheryl left. And I don’t how many more weeks until she gets back. And the truth is that I have been going crazy, not in the good way, but in the bad way. I cannot escape that I cannot take care of myself, and I cannot escape that I have no medical services as yet, and I cannot escape that without care I will die. And I don’t want to die, so I am doing everything I can to NOT die. But the thing is that there are days that care doesn’t come, there are days that Linda is tired, there is so much, oh so much out of my control. And with Linda so worried she lets slip things, costs, deadlines, things to worry about, things to fear and now, I have more fears. Linda is getting better, and she is trying to reach out to those who support her, because except for Rabid, and Eiki Eiki, there is no one here to support me, to take away the fears that rush around in my head.

I am in the capital city, but I am alone. No one to stop the depression that hits in the evening. The frustration to the point of crying at the inability to do the most basic things, and yet to try again, to put all effort in trying anyway.

Almost all the ‘loot’ is sent out, or will be in a week or two, trying to get ahead of the Xmas slow down. Plus getting things to people as a sort of Xmas thing – except we are supposed to be like that every day, so both Christ and the churches say. It is just if you don’t do it at Xmas, then people forget. Maybe they don’t but when you can’t remember beyond 2-3 days, it is very easy feel alone, be alone, to face winter alone. Until all I want is to let myself go, to give into it.