Tuesday, September 30, 2008

Life without Linda and the $5,000 question

Today in grief counseling, I asked the person, one to one, how do people grieve, how do they cope with rapid losses, frustration, anger, and being dehumanized. But most of all what I wanted was hope that I might grieve, to accept the fact that the world moves on without me, and that the part I am sharing, is preparing for me to leave, or for them to leave me and return to the fullness of the world. It has been, though memory wiped often, my bones tell me, a weary time.
She said that many find comfort in the spiritual aspect of their journey, they turn to various beliefs.

I told her that besides the fact that the churches we are within wheeling distance of won’t accept us because we are a lesbian couple (because that is SO important right now, isn’t it!). But that, and here I started crying, “I do not believe in heaven because I do not want to live in a place without Linda.” I paused and continued, “I know that Linda will move on, and grow and become a better person, maybe find someone else. But what I want, is to be HERE, with her, with Cheryl, with my friends (online). I do not want to believe in Heaven.” (I do want her to move on and grow becuase I love her, I want her to grow into the person I see, a sort of super-Linda; and yet, I want to be there to be part of it)

As I said to Linda later, “You are funny, you smart, you are caring, you smile to hide how vulnerable and fragile you can be, you are the person I want to know more about and the person I want to be with. What is the love of Jesus, who is not here? Why would I want to spend time with Jesus when I could be with you?” I am sure that is some sort of heresy that is so terrible the ground will open up but I fell in love, I believed in that love, I fought for that love AS DID Linda. Cheryl has been there for me, other people have been there for me, and as awful as living sometimes is, as much as I scream from the pain of the seizures and the heart problems and heat ones and even when my arms turn totally green (or as the very pedantic woman said it, “Well, you are really only somewhat green, not fully green” – oh, I’m sorry, do you get a lot of GREEN humans in here so that you have to GRADE them according to how green they are?), THIS is where I would rather be.

This is NOT heaven on earth. But this is where I would rather be. Here is another picture from Oga to remind you what I know, that there IS wonder, there IS caring and there are miracles here on earth. And most of the time they take human form.

But there are also the minutes, and hours and days: strings of them, all hard and sometimes lonely, often lonely. But this, life is where I want to be. I like looking at this Pencil Board from Piano, the anime series, which shows that sort of feeling, that there is rain, and there is waiting (so much of a disability/illness life). And I want so much to be with Linda and on a road trip and with Cheryl and everyone but yet things just keep raining down on my life.

I did determine the other day to live forever by sheer will power, which will become somewhat problematic when I have to sleep.

Yesterday, I showed up to find that my person at Triumph is gone, quit on Friday, and this new person has been getting our emails (and I guess that is why she never replied), but didn’t notify me about this change. Very professional. The finalized $5000 Triumph was paying for the wheelchair in invoice form is gone. The new person knows nothing about it. She has a letter of intent from July. My Wheelchair place has the Blue Cross funding but they need the invoice and the letter of confirmed funding from Triumph. They have disappeared with my previous case manager. And while she CAN buy a wheelchair with them, I am not sure what use that would serve her. Also gone is the disc and the incorrect User ID which is stopping the computer that was sent to me it seems 9 months ago from working. Where has that gone? A fun appointment starting over, because remember, I am in “employment crisis” and though it turns out they CAN’T get a computer with dragonspeak to work for me in nine months, I am SURE my employer would patiently wait. I did make an offer to apply for the missing social worker’s job. They said they weren’t advertising it yet. Ah.

Today, we went from my sort of “non” grief counseling to see this somewhat Blue Cross covered (except for the last $1000) oxygen concentrator, which would allow me to leave the house (longer than my 40 minute tanks). The women who, after I told her I did NOT have COPD four times, continued to extol the virtues of this concentrator for people with COPD. It had two significant differences from the one we took to Japan: 1) It is loud, like twice as loud, like over 60 db loud and you have to shout over it loud and 2) it has so many small parts that even the able bodied person selling the machine who had sold many could not with her two good dexterity hands, change the battery. And it requires you open a zipper or two, or three as it is built into a bag, and she didn’t seem to get it needed to be able to be attached in someway (like in my backpack) to my wheelchair.

The other model, while not have quite as much maximum outflow has an easy giant handle to pull out batteries and new ones are simply dropped in by gravity. And it is so quiet that on the Tokyo and other subway and bullet trains, I had it going without anyone hearing it. We used it in the car driving with Cheryl and all talked. Problem is, we have to find a new supplier as the other, slightly older model is…$1400 more than Blue Cross will pay, and we don’t know yet if Blue Cross will transfer the letter for the “oxygen concentrator” to a different concentrator or we start the six to eight week process again. I COULD go insane worrying about these things but that is why there is a "medical team" who does that, I think finding another (my deduction: cheaper) supplier of the concentrator we want is the plan.

Know what I do at times like this> I look at the complexities of males. And if normal males weren’t enough, I look at anime males. Like the Yaoi males, maybe a teen? Dunno. Yes, beautiful and yes, somewhat complex and emotionally challenging BUT does not have a $1400 worry attached. So before we say goodbye to Yaoi for a little while, here is our Uke again, in trouble this time. He has been caught by the Seme (aggressive older male) making money modelling as a ‘sweet goth loli’ girl. Obviously the attempts of the Seme to drag off our pretty boy (who by the way is just way, way, way too perfect for those clothes and makes me glad I am a ‘goth loli’ and ‘goth’ who wears dark clothes and not a ‘sweet goth loli’ as then I would have to admit this guy looks way better in any clothes I buy than I would). Ha! Don’t worry, you can tune in without having to see our Uke and Seme couple for a while.

I also like hetero couples, well ANIME hetero couples like this cute couple Spice and Wolf: this is on a Pencil Board which is what people in Japan put in front or inside the plastic of their binders at school or university (or their job if they want). They are so colorful a lot of people collect them. I don’t know why but fox eared girls are kinda cute.

Linda was very almost late for an important meeting which I can’t tell you about because it would be…TREASON TO THE QUEEN (no seriously, over there you have breach of confidentiality, but Linda is a government manager in a government ruled….by Queen Elizabeth II – at least in name only, she lets the Prime Minster do the heavy lifting). So I can’t tell you as I don’t want those BeefEater guys with the weird lace collars and long pointy things to come and put me in the Tower. So I was let off and was racing home to meet my home care person. And I was going downhill towards this newly finished street, which had been sinking. Well, it turns out that the curb cut LOOKS like, with new cement and all, that you can roll right down it onto the street and up and over, but no. I found this out as I was flying, my legs ripped out from the velcro tie-down, and I was pretty much still in the seated position.

I actually looked back and there was my chair, still at the curb, where I had hit the street in a bad curb cut which such force it stopped the wheelchair dead while I soared onward! Now coming down was kinda OW, but I have to admit there was a whole Road Runner and the Coyote aspect to it, where I am literally sitting there in mid-air, my hands still down trying to touch my wheelchair wheels at my waist as I sail about six to seven feet through the air in a seated position. Tell me that doesn’t make you think of a cartoon!

Anyway, with some local help, they brought the chair into the intersection, I pulled myself back in the chair and made it back home and found…a home care worker I remember I think, from before the big brain go boom and she and I get on well and she is willing to work nights and will bring her laptop (oh my type of person!). So aside from my right side having MORE road rash and my right wrist sprained again (once from the seizures last night), the ending was comical and sort of positive.

Except there is a guy who is driving me nuts on ebay, but that for another day (Says, “I will not sell to McClung” – what did I DO, run over your dog? What did this OTHER McClung do?). I wanted to finish with a few things I bought for $2 (yeah, you know me, I go wild when I spend) over a month ago which just arrived. They are some Hello Kitty as various traditional people during the New Year’s and Spring Festivals and purification. I don’t recognize most of them, one is a sort of Hime (ritual Princess), and it is on water paper, how cool is that. So if you know anything please let me know but still, I do the traditional ancient Japanese Hello Kitty or goth or alternative Hello Kitty, but not the pink fluffy!

I close with some postcards from Chobits, another hit Anime, these are from the creators Clamp, a female only drawing company, who have done many famous series. This book of cards is from 2000 and is out of print, but I found it for not very much, enough to justify buying it, waiting the six weeks to get it so I can send them out as postcards to people. Like I said, only the best for my friends.

It is raining outside. Started, Linda said, just before my seizure this afternoon. Still, when I wheel into the bedroom tonight, Linda will be there. Where else in Heaven and Earth can promise me that?

Monday, September 29, 2008

Illiteracy employment, a WHOLE bunch of seizures, air hockey and anime boy memories

I had a day full of meetings and change and finished with a person on ebay who is holding some items of mine ransom. I paid, and he freaked and is no longer sending me the mouse pad with the girl in the snow that matches my notebook. It is annoying. I was tired, I had to transfer many, many times after they sent AGAIN the woman who could not read, and needed me to instruct her three times how to make a bed (like, “This bottom sheet, that’s usually tucked in.”). Also as she could not read or see that well, she could not make me lunch as written in a note by Linda.

Last time she was sent to shower me and could not decide which was shampoo. As the person who it is to be brain damaged my rule is, “Only one person in the house who may not be able to understand the written word at any one time.” So now after our SECOND complaint of not reading, not seeing and refusing to bring her glasses, she has been taken off my list. By the way, if you WANT to apply for a job where you get $20 and does not require literacy, I recommend hopping a boat to Beacon. As for the woman, she will be sent out to seniors to decide for herself (now that the ‘medical training 1 hour course’ has occurred) what medicines, including “life” pills (pills that can save or kill you) to give her clients….without being able to read or see clearly. See, there IS disability hiring in Victoria!

Anyway, the reason I mention that is because it ‘seems’ I went to badminton and it seems I had a series of somewhere between 3 and 6 seizures AFTER I started bleeding fairly steady out of my nose (to get the exact count I would need to wake up Linda). So I am pretty funky. And have bitten my tongue (oh giant surprise there!). So I thought I would talk about things I could remember, like things from some days ago instead of the brilliant and insightful post I WAS going to write.

First off, I should mention that Linda and Cheryl’s blog and what happens there is not really my thing. They have a screening of information so that I can a) not have OCD about things and b) Can have a normal blog. If you did something nice over there or whatever is going on over there, which I am getting from picked up topics might have something to do with an oxygen concentrator or going to Seattle, thanks. I don’t know what you did so, um, I can’t do much more than that. I hope you understand why the medical team and this blog are separate, even if the people I live with or talk about are mentioned on here?

Okay, back to Air Hockey, because that is what I can remember and an important national sport which I think SHOULD be at the paralympics, except now I am not so great (kinda suck!). I don’t know how to bring up my game, take a stick outside and whack at falling leaves? Anyway, here I am “taking things seriously.”
And the worst part of Air Hockey I have found is that the other person actually FIGHTS BACK. Yeah, just ruins the whole game for me. So when they score, and somehow against all reason, they do, I put on my “fighting face” which I think I inherited from the Scots, or from squirrels, either.
And when I get a score, as my grandparents and parents taught me, “The most important part of the game is good sportspersonship.” Which seemed a load of bull um, afterbits to me since if you can’t chortle in Victory when can you chortle?

Anyway, fear not, the race between Cheryl and I was close, 6-6 before, AS I WAS THINKING, “Hey, I could really win this!” she slammed home the winning puck. Yeah, that thinking will do you in!

To finish up we are returning to pictures of beautiful things and since we got SO MANY comments on the beautiful Uke boy from the boy/boy love book, here he is again! Not only with the big eyes, and great hair, but MORE flowers than I get! Sheesh. Oh well. I have to admit beyond the envy there is sort of a “ahhhhh” like you feel toward a puppy. He’s so cute, and more than just a little gender bendy. Better he stay over in Japan than end up somewhere in North America. A little too fragile for THIS world.

Now, before I here more complaints from the guys about more nightmares and as a special favor to Collette, we have the Anime Bad Boy look. Which is complete with leather jacket AND butterflies! Haha! I think there might be wings on him too. Still silky smooth but a Bad Boy, who probably will do bad things like drive a motorcycle without a helmet.

And in case you thought I went hetero (a very odd sort of hetero), we have girls, of which I have so MANY, many pictures, but here is a nice anime schoolgirl. She seems to be getting a LOT more out of practicing kissing on HER mirror than I ever did on mine! Which is a nice way to finish. I hope that tomorrow after reboot and three more appointments (one with the oxygen people) I will get to rest. Oh, I filled up the Memory 2 week heart monitor again. Wee!

Sunday, September 28, 2008

A typical day? A nice card and determination.

It has been a hard few days. The good news is that I sent out 22 postcards and didn’t break two fingers (just badly bruised). I am on a heart monitor, and I go on. Were there seizures, erratics, weak pulse, faint pulse, lack of breaking, aspiration, having to breath head down, too weak to move any part of my body? So you mean a typical day? Haha. Well maybe not typical since I did strip down because I felt bad about something, as is, NAKED, totally completely naked. I also cut myself on the leg with the open part of a not very sharp pair of scissors, many times, until the blood pooled from one leg to other in a little V pool of blood. It did not hurt, it does not hurt. Maybe I felt it, I can’t really remember.

We went and played air hockey, I will write about that tomorrow when I am more recovered. It is not a good picture of me but it does show how gaunt I am. I said to Cheryl that without teeth, I think my flesh would meet in the middle, I am so much a skull. She said that I should try to keep my teeth and she agreed. That the humor we had. And some chortling over making little comments on postcards.

Here is one of the postcards I sent out. It is a special one, called a Bromhide Card, which has a transparent Anime Cell in it. On the back I used some of the hand-painted craft from SharonMV. And when I was done with my little message (and Japanese stickers), I hope the top looked as artful as the rest. I wish I had enough Bromhide cards for everyone but it is hard to get three (which is what I have) much less 100+. Still I will try to send cards that are unique and special, one of our cards we have sent 20+ out of I found today as we are running out. I said to Cheryl, “Oh, I see they are $6.99 a card.” She asked me if I still wanted to use them. I told her of course, “I didn’t pay that so let’s live it up! And everyone gets the best!”

I wish I could tell you something deep or amusing but this is just one of those “Blogging by sheer determination to keep posting” posts. I will come back, I will feel things again, even if my body doesn’t. I believe in a world without abilism, I believe in people caring, and people helping each other. I just don’t really believe in me right now. But I will hang on until I do.

Friday, September 26, 2008

Good news from h.naoto; Yaoi and images for your dreams

A rough day in a lot of ways but it had a good start at 2:30 am regarding my h.naoto rucksack. When because of “I don’t WANNA go to bed, I got a direct email from the representatives of the internet selling of h.naoto (h.naoto is still a little dubious about selling on the internet because like NEVER reissuing something it lows the ‘you have to go to this store in Tokyo!’ aspect). They had sent an email earlier saying they were considering selling the rucksack out of the English speaking site. Which has a bit of a markup (about 20% for reasons unknown).

Suddenly I get this email when I SHOULD be asleep which says, follow this link for your rucksack, with a an extra note, “Please check below link quickly, because of low stock.” The link to the rucksack is HERE. And no, not $95 anymore but I will save another week or two. So Linda, bless her, did not wack me in the head when I rolled to her sleeping form at 2:32 am and said, “I need your credit card.” We bought the rucksack and then went back to the link and saw what you saw. It is OUT OF STOCK. So “low stock” was the polite way of saying, “As a favor to you, we have created this on the English site and put a total of ONE rucksack there.” Anyway, when it arrives I will take the picture, all I have now is my receipt saying, I own one h.naoto rucksack. And I know it is more than I planned but it is OVER and will I grouch about the extra $20 for a while, probably. But then I will forget and be happy because I will be the only person in THE WESTERN WORLD much less North America with this rucksack on their wheelchair. So yes, Veralidaine or whoever believed that if I can get my very own Shrine Maiden sword dance while in Japan, I can move an entire Tokyo Fashion industry to my will (I didn’t! I was nice, I sent emails, Linda called, we talked to them, they decided to be nice – but seriously, ONE backpack…what if I was asleep?).

I am also disappointed after 90 minutes of taking photos of Oga, and trying to bring you the color, that no one mentioned it at ALL, just stuff on my brain (which yeah, is important to me too, but hey, I wanted the photos for you to enjoy). So just for that, today we finish with, Yaoi, which is boy/boy love photos – no don’t worry no hard core or even soft core boy love photos just a couple pictures. Let me introduce you to some of the image of boy love, here is our tender uke (younger, dainty male love object). Boy love romances are for girls who have not seen male anatomy mostly, haven’t had sex with guys and hang out with girls. In Asia 70% of romances sold are boy/boy (Yaoi) ones. Okay, first, this GUY has a way better look of the tender, “oh, I’m feeling vulnerable and I need to be cuddled” look than I DO, and I practiced mine in the mirror (No, not a lot, define a LOT, how many dozens of hours?). Is it because my eyes just AREN’T big enough? And his nails are WAY better looking than mine (that’s because I push a wheelchair, honest). And his hair, sigh.

Okay, here is our couple with the Seme (aggressive older male) with the same uke. First off, where does a GUY go to buy a tap pants sleep set? Do they even make such things (obviously they do?). Second, so smooth, so delicate, I am getting aroused by a GUY, because quite honestly, while not my area of expertise, I can’t figure out where his “equipment” goes (Linda saw it and says, “I bet it is tucked backwards!” – sheesh, she sure has changed since I met her at the bible study group.) So there you go, ignore my glorious images of Japan by a recognized artist and while the women can go “mmmmmm….” All the male readers can wake up tonight in a sweat from their erotic dreams of these very ‘romanticized’ versions (don’t guys HAVE hair, like on their legs and stuff?) of….guys?

Nite, nite, sweet dreams!

My progressing Brain Damage #1 accompanied by Oga and other beauty

This is a post about my brain and the destruction that is happening to it. A destruction that seems permanent and no matter how horrific or terrifying I find that statement to be it doesn’t make it go away. I am putting in pictures from the double width page Oga Exhibition Catalogue, 268 pages shipped from Japan of an Exhibit, now finished of his complete work, and a Catalogue in Full and breathtaking colour. The first picture is a three double width page large display, a foldout starting his work (and a few pictures of other pretty things).

How do I begin? Because for me there is no beginning, there is no day, or week, or month, there is now and soon, and tomorrow sometimes, and sometimes literally just “now.” And when I am in a better state, I am able to articulate or try to explain to Linda how she needs to talk to me, which is to use simple sentences that do not refer to time or things outside of my memory. I need this because otherwise I will become worried to the point where fear overcomes me and I may be curled up because I do not know what “We have some bills hanging over our head but that should be okay by December” means. I know “Bills” and I know it is my fault and I know “hanging over head” and that is all I know. I don’t know what to do, I know that Bills must be dealt with and if they are “hanging over head” then they are serious indeed. I am frantic and by the time Linda sees me seven hours later I am trying to wheel down to a book store with books to sell or I have already done something. I have sold something and have $12 and I give it to her crying and ask, “Is this enough? Will this stop the Bills?” I do not sleep. So she needs to say, “Everything is okay.” Or “I am glad you bought that gift for XXXXX but we need to not buy much for a little time, okay?” and sound calm. And then say that again tomorrow or the day after because I cannot remember beyond five days, or what used to be five days, only now sometimes it is three days or less. “We are going to not buy anything more for a few days but everything is okay.” She says a few days later.

Do I know that being talked to like this makes me sound like a child? Of course, and people who are intimate with me say things like “while you might be not as smart as you used to be you are still one of the smartest people I know.” Which hurts. A lot. Because I spent my life obeying what I believed what my calling, my vocation, my onus by God, to use the gift given to me, of a unique mind that could remember almost anything. As Linda says, “There wasn’t a word or phrase however obscure I could say that you couldn’t talk for an hour on the history of or how it came to be or was used in history.” Which isn’t as boring as you might imagine as I delighted in the obscure like the rich who used to advertise for hermits to go with their “follies” (fake castle ruins, that they built; which wouldn’t be complete without a mad or poetic hermit to go with them).

And I am not a person who sits in my 60’s or 70’s or 80’s and realizes that a bit of blurring on the edges is inevitable. I am a person in my 30’s who has had a partial stroke in the right temporal lobe (it is believed, and all evidence supports), and now has seizures there, big seizures which PERMANANTLY destroy even more of what is already damaged. If not for Linda, Cheryl, my workers, the computer, my wall charts and other systems, the damage would be affecting my writing and my life more than it does. How do I know I want a punk backpack and now one with wings from Japan? Because I think about it EVERY DAY (it is literally re-imprinted daily). Things that are important I have routines. I also have sheets Linda has written and posted in places telling me what my routines are. What do I do to get to go to bed? It is written on a list, is #2 done, okay now on to #3…

See, I can’t even tell if I have already written this in a post for everyone to understand. But I have good days and bad, and I think this is a good day.

This lack of remembering is in a way why I am putting up pictures of beautiful things, because the things I remember best are those I am most emotionally connected to (I might remember the pictures and thus remember this blog). But yes, I forget Linda, and on a regular, almost a bi-weekly basis. This is painful for her, I know, and for me, because I pretend later, that I cannot imagine what it might be like for your partner of 15 years not to know you. What should I say, “Sorry about that TIA/mini stroke I had that night where I forgot you for two days.” It is only recently that I am now back to the present, or so they tell me, since I believed it was 2003 after another seizure. But with only 1,000 words or so, you don’t see what I have been hiding since…….haha, see, I don’t know. We argue, Linda and I: I say I have know someone for “years” and she says, “Since June”. To me that means almost the same thing except that it wasn’t as recent as June because June was very, very recent, and only now and then can Linda and Cheryl convince me that it is NOT June. I am not sure why I think it is always June or 2003 but I do.

Today and yesterday I asked five people “What IS Thursday?” and only Linda was able to answer me. She showed me on the graphs she puts besides my computer where she was and where I go and who comes and goes. I point to her sheet and point to 10:00 am and said, “I called, you not there, not Thursday. What is Thursday?” She said that she was different but Thursday was here. This is a concept I cannot understand. There are a lot of concepts I can’t understand. In fact, I can only write this because I haven’t HAD a seizure in three days, because time before and after a seizure is forgotten, and the mind retreats and I retreat. In my recent seizure which turned into a TIA (which is a micro stroke), which I can remember afterward, I woke up in an apartment I did not recognize. Linda was there but not Linda, a different Linda. And I came into the middle room with the computer and the computer my hands knew how to turn on, though I did not know how they knew that. It asked if I wanted to play a disc, and I did, and a show started playing.

The phone rang and there was someone on there I did not recognize so I dropped it. Linda was not here. There was a lot of mess. The counter was covered with things, and there were wheelchairs all over. I was very tired. Linda showed up. She said she was at lunch. I asked her why I wasn’t teaching. She said that I was sick. I said does that mean I wasn’t going to get any substitute teaching jobs until I was over the Mononucleosis (a disease which makes you tired for a month or so, easily caught at uni). She tried to explain that I was sick longer than that. I gave up listening and she could see that because my head was hurting. She told me I needed to use the wheelchairs. I said, “Isn’t this a bit much for mono?”

She laughed in an odd/funny way and then got me lunch and I fumbled with my hands, I must have been more tired than I thought. As she left she asked me what year it was and I told her (2003), and she shook her head and said she would see me in several hours. I watched the disc until it was done and then I went on the internet which was much faster than I remembered. But then, sometimes when someone would ask a question, like on the blog, I would know the answer but afterward my head hurt and I couldn’t remember how I knew that. I couldn’t remember what I had just written (which is on my left side of my brain) and when I read it back it sounded like someone far more sure than I would say.

Sometimes there are days that I cannot go outside or someone has to be with me to stop me from trying to go “home” wherever that is that particularly time (in this picture you can see Kiki if you look closely, from Kiki’s Delivery Service, running up the path home – Do you remember Lene, I still do?).

I also have emotional liability, which means I have extreme emotional responses, sometimes from nothing at all. I am not sure if I have talked about this. But for example, I have cried through almost two complete toilet rolls for no perceivable reason. This isn’t depression because that I can remember. And sometimes I am very content for no reason, but that is less often, because there are always so many people who want answers that I don’t know the answers to.

I spend my time getting postcards ready for people I cannot remember. I have to look up each persons' name on the computer and cards and read all the text and get a sense and pick the card for them and then do the next person, all 30+ cards. And when I do the wood blocks and the rubber stamping, I have to do it all over again. And when it is done and I put on the stickers and write the note, I send it out. One of the reasons I take pictures is that I have no idea how many postcards I have sent out. Cheryl I think estimates it is about 400-550. I don’t know. I don’t know how many “surprise” presents I have sent out or to who, I think it is 50-70. Maybe more. Now that I have no money I just use what is lying around. Which is the other reasons of these pictures is because I will keep things and then I will send them off but because I don’t know that I will remember a week or a month later and want to see it but I gave it away. So like a butterfly, I must appreciate what is around me, which is why I try to surround my desk with things that will appeal to me and stop me from looking elsewhere. I sometimes buy things like this A4 holder about the Anime show Air TV, which I can relate to far more than I would ever want to (“Gao!”). This I traded for, so it cost me nothing at all, actually I got some postcards in the deal which I sent out.

I think what I was saying is by the time I get the thank you from people for the postcards, I have NO IDEA what you are talking about. Please don’t stop from emailing me, because it is the way I know I am making a difference. I try to fake it in a reply but if they are happy then I am happy because the part of me that had a brain that day did good, even if the me of today can’t remember. I have a list, or lists for the weeks of the post and gifts that are sent and this week and maybe last week, I can’t remember, but there are ticks by some names so I have been trying to send out thank you emails to people. I am sorry if it is weeks late or only a week later, I don’t know. Sometimes the lists Linda or Cheryl make don’t have dates. One week Cheryl brought boxes and then we were busy all weekend and I simply didn’t open them until she returned because I could not trust myself to open things by myself, not to get them mixed up. I need someone there, someone with a REAL brain, to remember what came from which package.

I appreciate every piece of post and every gift, and I try to write back how they are emotionally remembered by me. And I hope that if you sent a gift you got or will get a email about that. But you can see why for me, I cannot carry the obligation of financial issues. I simply am not mentally capable anymore. I can work at making people happy, people who I may often forget until I repeat their name every day or every few days. Or people who make a strong impression. Or I will have a seizure after I open the gift and then forget and receive the gift all over again. Which makes it sound very romantic, like Totoro here from the movie of the same name, making the sound of the wind, creatures of the wild, of myth, always existing in the now.

Except in THIS WORLD I have to be watched all the time. I have a lifeline phone with reminders and the phone will NOT stop telling me there is a reminder until I push the big button and then Linda’s voice comes out and tells me exactly what to do. And I do it. Because the person who is MOST likely to overdose me is ME. I can’t remember 10 minutes later if I took a pill.

Is it great that the people and places I go know that I am brain damaged, that I “Used to be someone”? No. It is not fun to have a 20 year old snidely remind you that you took out that DVD last week, and “You ranted about how bad it was for 10 minutes.” And I have to smile and say thank you and find something else. Because I will remember the story: stories I remember.

I guess this is the end of part 1 of trying to explain what it is like to be brain damaged, and I REALLY hope I have not done this part already. Next time I will try to explain the idea of language schema and how exactly my language center is damaged and how sometimes I can fool people and how and why it becomes obvious. The fastest way is just start asking me questions, and I think I am speaking normally only I am speaking slowly with mixed word or “word salad”: words that start with the same letter but mean something else altogether, or I just get stuck and start stuttering, or I look around in confusion. And people turn and start talking to Linda because what is the point of talking to me, even if I CAN understand them. Except sometimes I can’t and I say, “I don’t know what you mean.” And sometimes they say it over and over and I keep saying “I don’t know what you mean.” And they get angry, this happens with Time a lot. My care worker stopped getting angry at me and now says, “Today is Thursday and soon you see Cheryl and then I come back.” Which I can understand. I still have a high IQ, reason and deduction, I just can’t understand sequencing, and I don’t know why, but knowing that you can’t understand something doesn’t make you understand it. I wish it would.

Oh, if any of the pictures here end up in a package to you, that means I have emotionally enjoyed them and am giving them on to you. It is okay to get them, and if you don’t enjoy them, please send them to someone who does. Because I am trying to send you the feeling I get, not just an object. It is a form of communication.

Wednesday, September 24, 2008

Beth & the h.naoto rucksack (I need help!) plus the dark Fairie of the Wood (two Fairy Tales)

Today/Tonight we have two fairy tales, one is called, Beth with OCD who is going crazy and needs your help and the other is called The Dark Fairie of the Woods. Both are sort of goth tales in their own way.

First off, regarding my lovely punk spiderweb backpack by h.naoto: the bad news they are all sold out. I know this because after TWO HUNDRED page clicks of the four brands of h.naoto (which took 2 hours and 19 minutes, did I mention the OCD!), I found it on the Japanese main h.naoto site, right here (see the search line on the left, enter this product code and hit the button: NND1-B052 BK-RD/F). Sigh, sob, sob. Okay that is the bad news.

The GOOD news is that I found a similar back pack which is a little more goth but also in spider web called the Feather wing (at the main site enter the product code: NND2-B019 BK-RD/F) backpack/rucksack. It has the same front to hang over the chair but looks like there are dark angel wings in the back. But as you see, the wings are just for show and inside is the SAME rucksack with pockets, that you just flip back the front wings to access. That is good, that is cool.

But wait, is any story ever so simple? No! Not for our poor Victoria Heroine Elizabeth Eloise McClung of the Western Clan (if you think my middle name is Eloise think again!), BECAUSE while this backpack is in stock FOR NOW in Japan for the same price ($90 – that Beth has saved in her Ossuary Box of Precious things), the company h.naoto and website only sell to people IN JAPAN. So unless you know someone IN JAPAN who can order this for me, I am sort of (Canadian slang here) ‘hooped.’ I have given up on the other backpack after Linda called Japan and talked to the company h.naoto today and they said, no it will NEVER be reissued and I missed it by a couple days (insert scenes of me pathetically trying to throw myself off cliffs here). BUT I have a new backpack for the same price, give or take $5, only….they won’t sell it to me! (Insert more scenes of me pathetically trying to throw myself under the horses drawing a carriage here). So, any ideas? Tune in tomorrow to find out the rest of this epic saga!

Moving on. This next part of the post was one of the more mystical aspects to our trip to the Hoh Rainforest. We had been going quite a while, following the forest path, Linda Cheryl and I. But then, after a time our bearings got turned around, and we were lost, like so many who had come before. All we could see on either side was forest, forest, forest, the trail was gone and only the greenery (beautiful though it was) was to be seen.
At this point, emerging from the forest was my Dark Fairie (This is actually a true story, just let me tell it my way instead of me being a person who suddenly asks a stranger to do a photo shoot for them. And I somehow convince her to do it, all in the middle of the woods). Well, she appeared out of the woods and stood before us, and a path appeared around us. By the images on her skin she was clearly tied to the day. And allowed me to record these wondrous markings. But then, it seemed she had a dark side also, as opposite to those creatures of light were the markings of bats and creatures of the night. What a complicated woodland Fairie this was. We asked her for directions and then before she left, after much persuading she showed us the symbol of the lost king she bore (sorry, I just couldn’t help myself!).

She turned us back to the light and before us a pathway appeared and we continued on our journey. But of her, and her bewitching eyes, hair and colorful patterns, when we turned to thank her, she had vanished back into the green of the forest.
So there you go, a true tale of the Hoh Rainforest, and sadly, I never got her name. But she was very happy but shy by my delight (well Cheryl was breathing pretty heavy too) with her body art. There was some on every limb and many more I guessed where I could NOT see.

So nothing deep today, just some pretty shots and a problem which has me in anguish, to lose ONE backpack by 40 hours is one thing but to find another, HAVE the money but not be able to buy it. This is a new cruelty, is it not? I hope you enjoyed the little fantasy in the woods (and have an idea on solving my problem!!! – Did I mention the over two hours searching pages!). Happy day!

Tuesday, September 23, 2008

The Terry Fox run/walk/wheel: I AM a survivor

I am a disease survivor. I had always rejected the word “survivor” because it seemed to me that people were trying to pretend that something was over when the effects lingered on, had changed them. Or they were trying to tell themselves or me that we had won a fight that wasn’t even about us. How can you win a fight against a cell which doesn’t die when it is supposed to and replicates? How can I fight against my own autoimmune system which protects me (and is now killing me).

When therapists and others would say that I was a sexual abuse survivor it would make me angry, “They went away!” I would almost shout in anger. I know what surviving IS, what doing what is necessary to pay the rent that month IS, or what living homeless in the woods is like because you don’t HAVE the money. That is survival. A guy or guys leaving your body because they are bored isn’t an indication of MY survival, at least to me. They could have kept torturing and fucking me OR they could have cut my throat OR they could have walked away to find someone else.

So I didn’t get it. I wasn’t saying other people weren’t survivors, I was just saying I wasn’t. Though I did have a problem when we label things with fight words when they are a part of us; you won the war by cutting off part of yourself, and that makes you a survivor, a victor against….your own body?

I am sorry if that offends anyone, which is not my intention, but I need to show how I think to show the change in thinking. I will still probably start laughing if someone starts referring to themselves as a “flu survivor.”

I did the Terry Fox 10K because Terry Fox has always been my hero ever since childhood. It was a beautiful day, perfect cool sunshine by the ocean. At the race they played a clip which would make you think Terry Fox started his run in Ontario instead of 1500 miles to the east. The days of sleeping in the van, eating out of the van, sleeping in the van. How they only got a hotel room was because the owner of the hotel’s son had cancer. How he was splashed, honked at, yelled at and almost hit by cars. Terry Fox was a nut. And every country at some time has their lovable nut. He happens to be Canada’s. And he was a lovable nut who had the official support of the Cancer Society of Canada. And he wanted to raise $1 from each person in Canada for Cancer by doing his thing, which was running across Canada. As I sat there in my chair and they played the tape it said, “When Terry asked to be taken to the hospital, the Run of Hope was over.” And I vehemently said, “It was NOT over.” Which got a few people looking at me. But it is a very important point, one which the people who do all the fundraising didn’t get. Terry was asked by many famous people if they could continue his run and he always replied, “I WILL go back and run.” Or “My run is not over.” Even in the hospital he maintained that he would go back and run again.

I couldn’t put it in words at the time but doing the Terry Fox run/wheel/walk with my friend who has crushed ankle and vertebrae enlightened me. I started the race beside a teenage girl and her team, she had what I believed was childhood Leukemia, and during the race gave the nod to a guy in his wheelchair. Racing I passed a man with a plain grip/hook hand prosthetic, and another with crutches, who had an amputation so high up the leg it was to the hip, who took over an hour on plain hospital crutches to do the 5K. He told me as I went by “ya got to use the momentum.”

There was in the eyes of people there some sort of understanding. We knew each other. We gave each other the nod. Yet what was it that we understood? It was the connection of someone who had been in the same war. The nod of people with the same attitude; which like Terry Fox, that they probably shouldn’t be here, like the woman holding on to her wheeled walker. They probably would, if they asked, be advised against ‘stressing themselves unnecessarily, particularly after what they had been through.’ They know the voices of the people who will never get it, who only see a 5K or a 10K as stress against a weakened system or strain on a healing amputation. Like running 22 miles a day and sleeping in the same stinking van.

See, I was putting the wrong emphasis. I thought people were (and some are) saying, I am a SURVIVOR. Well that day, the people mixed among those who were raising money were people whose life and attitude or who knew people who chose to state with their choices and actions, I AM a survivor. What is the difference? The first is the statement of someone who feels that what they feared or which attacked them is long gone, never to rise again. They are the victors, and the enemy is vanquished, they are SURVIVORS.

Me? I’ve been broken too many times to ever say it like that. And over the last few years I learned that it isn’t the disease you have, it is the way you live it. Neither I nor any of the other people whose recent or remembered experiences with cancer or other diseases who were there that day believed they had won, or that cancer would never return. They were not there to be plucky, or inspirational or courageous. And neither was Terry Fox. One of my favorite quotes from his is when he asked publicly for able bodied people to NOT run with him because while they were jogging, “I am running as FAST as I CAN.” That is what the man on crutches and I both recognized in each other, that neither of us deserved pity, or sympathy nor were we courageous, we recognized that the other was simply going as FAST as they COULD.
I AM a survivor. I AM because I choose to live my life in a way that gives me the best chance of survival but also because I am the one determining how to live, not my disease. At the Terry Fox run/walk/wheel they put a note on my back: "Pour water over and put in a cool place; do NOT heat and call....." With some help from my friends I will continue to determine how to live, and live as large as possible until I die: whether that is doing a little sexy dress up photo shoot until I have to be carried inside or trying for the last time possible this year to visit what I had set my mind to visit without even reading about it: the Hoh Rainforest. I wheel outside even though I cry from the pain; I exercise though I can’t sleep (from the pain) because I AM a survivor. And this society is not set up, not particularly ready for survivors. That is why the Terry Fox 1K/5K/10K is so important, because as people on bikes and children on tricycles go next to people walking with dogs, people in wheelchairs, on rollerblades, on horses, jogging, walking, with walking sticks, with frequent breaks, however they choose to reach their goal. We started at Mile Zero, the goal that Terry Fox never reached. But that’s what the Terry Fox run/walk/wheel was for me, an event to spread the word, once we accept that people have different impairments and different ways of reaching their goals, can interact together, can enjoy an event together.

And for me, I recognized a part of myself in seeing it in the mirrors of others faces. I AM a survivor because I choose how I will survive, how each day, week, month and goal will be spent, not the worriers and the non-sayers. I have been in the belly of the Beast and I have the beast inside of me. That is what every one of those faces said, they said, they KNOW that cancer or other disease will come back, that they live WITH that fact, and it is their living which marks them as a survivor.

Today, meeting with a “pain specialist” who told me both to “live within my pain” and didn’t GET IT, he didn’t understand my level of pain; not believing that I hallucinate from my intensity of pain. Indeed, he stated that he didn’t want to give me something like morphine (which would take my pain away) because it might give me constipation and I must have enough of that using the wheelchair. Fuck doc, removing all my pain for CONSTIPATION? I will take that trade any day. He said this exercise thing had to go, that I needed to sort of just sit at home and “learn to live within my pain.” I asked if he realized I had a degenerative terminal disease and he did. He said with a stern expression, “Those 10K’s definitely have to go!” and then talked about cutting badminton in half if not less, though I explained three times about how if I do NOT exercise, it will kill me faster. I just smiled at him while I determined to FIND a 10K this weekend and ENTER. He thought he was getting me ready for surviving what was coming. He wasn’t one of those who know that the quickest way to kill me was to kill my dreams. That what makes me go from seizures to badminton (or type, as I did yesterday with thick gloves on because four fingers had frostbite – and yes, I know that’s not logical, welcome to autonomic failure land).

I am not a person who puts themselves forward to represent a society or organization. I do wish people would fund things like depression which kills one person every seven minutes in the US, and I wish there WAS a 10K I could do to fund stopping sexual abuse (if you think the breast cancer numbers are huge, wait till the stigma of this race falls off and people show up). Yes, I want to raise money for stopping sexual abuse. I want those who are under care not to have the threat of receiving emotional or physical abuse and/or neglect and have no one care. But I believe these are things that anyone innately should be working toward, a world that makes only the best logical and emotional sense. So as odd and as selfish as it seems, I struggle to remain a survivor because then I can be there for people having a hard time, be someone who they can email or talk to, can be a person to send a card or gift.

For my races, I needed a shirt for people helping me to see each other easily. Laura sent these shirts, for those who help me at an event. This is the symbol on the back.

The shirts and seeing Linda and Cheryl and thinking of Laura I remember why I survive. Because I can reach out and do what so many seem to have forgotten, that it is not large organizations which make a difference to an individual, but rather another individual. Those t-shirts are living proof. I did the 10K becuase of three people, individual people who reached out. Linda and Cheryl have created a blog, if you want to look at it, called, A Girl's Gotta Fly.

Today, I had two specialists who could have made a difference. Both failed. I don’t want to fail, and though I have little income, little strength, and other significant obstacles, I want to be there for you. I want to care about you, because that is what was given as a gift to me, and is, almost every day. You want a post card, you know what to do, haven't got a postcard in a while, let me know (geez, I HAVE brain damage, so give me a hint now and then, okay, I'm not ignoring you).

If I had to make an event, I would make it like Terry Fox did, as inclusive as possible, with no winners, but equal participants. We were there with different mobility’s, different motivations and that was possible because one person inspired another person and where Terry Fox was not an organizer, the head of the Four Seasons was. He got the Marathon of Hope run/walk/wheels organized and keeps the dream alive. What dream? That if you want to do it, just because other people don’t understand that, or care, you still can. I was at that 10K not because I could get myself there by myself but becuase another couple people I knew could. And they wanted to keep my dream alive. So if I am here next year, I will do it again, whether it is in a hospital bed with a motor attached; because I AM a survivor, dying, yes, alone, no, a survivor.