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.
4 hours ago