Oxygen concentrator, I try to go begging (again!), and Seattle!

I have recovered from my begging outing. Indeed this morning while in bed I said to Linda, “How about we go to Starbucks today for an apple cider?”

“Sounds great!” she said. Starbucks is right next to where I did my begging.

“Okay,” I said, “But when we get there, you go ahead, I have something to do and then will meet you inside.”

The light goes on in Linda’s head. “Oh no! Not a chance!” She said. Drat!

It turns out it is REALLY cold and that it is REALLY snowing, for instance it is –20, which is COLD for Victoria. Lene told me even as a person from Toronto (the ice age city) she doesn’t go out in –20. Here is a picture by Liliana Sanches (yes I wrote and asked permission), which shows that while snow is pretty, it is also something you don’t want certain parts exposed to. Pretty but zowie - defrosting that....

The exceptional news is that Blue Cross has approved the oxygen concentrator and the local supplier already has the fax of the approval and has ordered it and expects it here within a few days. It is the same model as I took to Japan and will fit in my backpack so I can use it while rolling. Linda had been playing telephone tag and I turned on the phone and there was Blue Cross with the message that yes, it had been approved and they ‘preferred we used the Canadian supplier.' The Canadian supplier called, the guy who gave the quote was on vacation but the tech guy was getting the stuff done. By the afternoon, there was a call to say the order was placed and the concentrator is coming from the US. Linda talks about it here.

We are fundraising now for the rest of the costs of going to the clinic and costs related to that (like hotel, etc) as I am now physically able to go! I really never thought this day would come, that I would be able to leave my home and be free to travel again, without the constant fear of my body suddenly de-compensating or blue lips and fingers (Well except now that 'instant frostbite' issue but we are working on that). Thank you for everyone who has helped, I really don’t know what to say. I feel in many ways that I have failed so many people in expressing my gratitude in the emotional, physical and financial ways people have reached out to someone they will never met. I have been sent hoodies and corsets, books and talking books, have been sent cookies and pumpkin loaf and the best foods from people's states. I have been sent love in dozens of forms. I am a lucky person to have met so many kind and generous people.

Now still, if you want the new 'in' look then get a sky and cloud blue colored Girl’s Gotta Fly bracelet ($2 donation. Warning: does not actually allow you to fly! However does on occasion give you the kick-ass attitude of EFM!), we mail them! Please read here. Or if you would like a copy of Zed signed by a limited edition author who will soon be permanently out of print, please buy a book and get a signiture and an odd and curiously obscene inscription which will be sent to you or the person or country of your choice. Yummy. Please see here for details. Yes we have the copies and yes, the obscene inscription may be optional (or extra depending on how detailed you want it!).

Ironically, while I was begging, I was next to the newsstand of Monday Magazine, which has a new issue in which the feature headline was Accessibility. Turns out the guy I talked to about the nails in front of my door told me that they hadn’t covered the story enough and apologized. I thought nothing of it. He did, and got a front page full spread four pages story (with an interview of me and a picture of me boxing - woo!). Here is the article. I would be curious to hear Lisa Moon’s comments on our life here in Accessible Paradise (‘as good, maybe better than most cities’ – well we are the worst province for accessible equipment, and as the journalist points out, since ALL the people interviewed who were disabled moved here FROM other cities for better accessibility saying we are ‘as good’ is pretty crap. Woo hoo, we’re dead last!).

I did have many physical effects left over from yesterday and some psychological ones. I felt in a lot of ways that I had let everyone down. My readers (on the other hand, doing crazy thing and then taking pictures is what my readers like!), David, Linda, and so many people who are going through a rough time. I am trying to do postcards today and I don’t have the capabilities to do the number I would like, there are more people out there who need postcards than I can physically do. I have been having problems with cognitive and micro seizures all day and it is Linda who has been trying to give me a “Lighten up” attitude. That I am not a big fat failure. Ironically, she is taller than me now, as she is in this picture. I had gone into that mind set where all I could see the stack of work I had not done, and the work I had done which had produced no immediate results. She took me away from that.

I am going to go back to work and do what I can as much as I can. Sometimes, like this evening during a prolonged respiratory difficulty (stopped breathing, got started, stopped, etc) I felt that I had done all I could, that it was time to go. I wanted to go. Linda did not want that. Linda has learned from Beth to fight for what she wants. So, what was I thinkin? I mean, there is so much left to see, with Linda beside me. I need to focus on how, in just a short time my concentrator will provide me with that better quality of life: Yes, you know it, Seattle and Victoria Secret after Xmas sale! Woo hoo! Oh yeah, panty shots a coming! Panty shots a coming!

Beth goes a Begging!

I went begging today. Yes, begging. And in sub-freezing weather, it snowed. I only lasted 20 minutes. I had the permission of the owner. And if you are offended because I am bringing down the image of the disabled or I am giving in to stereotype, then PLEASE point me in some direction where I CAN get a job in this town, or assistance that does accommodate me and give me dignity. I still have dignity here, I am just being blatantly open about how desperate I am.
The sign reads: “Need money Please for an oxygen Concentrator and medicine for kittens in the Japan Cat Project. Thank you and Happy Day.” I emailed with David and found out that his greatest need is for medicine, specifically for Revolution that they can’t get in Japan (an anti-parasite Treatment). If you have any or can get it in bulk to ship, please let me know, or David directly (email me and I’ll give you his email address). He says plainly that medical costs are a huge part of keeping the kittens, and that he also has to treat for Ringworm and cocydium but doesn’t know the best medicines. I put the concentrator on there because we are about to find out today or tomorrow if and how much Blue Cross will cover and will have about 3-4 days to come up with about $1000. That is causing some tension. I, of course, was raising the money for the kittens and was calling, “Save the Kittens.” A woman talked to me and as soon as she found out about the concentrator and how I can’t leave the house for long, she put in a fiver.

“You can use this as you want,” she said, “But I REALLY want you to have a better life.”

I said, “I understand, but I’m sort of wanting the KITTENS to have a better life.”

She left with a “For YOU” statement.

We made $8.76.
I was wearing two pairs of gloves, which I thought would work to keep out the cold even with my poor circulation. As you see, my ears are uncovered. My pain after 20 minutes outside was SO intense, I could not use my hands, I could barely move one thumb. Linda wheeled me into the store. And then out and back home, she had to put on the seat belt, I had my wrists and one thumb. The pain was unbelievable. I know I have a compromised circulation but really….?
I am not sure what to say, there was blood pools but otherwise no circulation in my fingertips or the sides of my fingers, this is FROSTBITE, and not a mild case of it, and it happened in just over 20 minutes.

I at this point, between the “Oh God, Oh God.” And “Look at my HANDS!” I was saying, “Okay, I’m going back tomorrow! Boy those panhandlers have it tough!” I think Linda pointed out they don’t have a disease which makes them have no circulation in their hands!
Linda says she brought a lukewarm bowl of water. My GOD THE PAIN! I screamed and screamed and I don’t know how long except I am hoarse now because all I could feel and see what a red haze of pain. It was bad. At this point, if anyone even TRIED to get me to go back out and pan-handle, I would take an AXE to them…when I could grip it again. I started to realize, “How am I going to wheel myself anywhere?” Going down and back to the Video Store takes longer than that – and this was TWO pairs of gloves, one a super-thermal. Nothing except saving Linda was worth that kind of pain again. Was I to be housebound for the rest of my time?
At this point I am just sobbing, because Linda keeps making me put my hands in the bowl and I can’t scream anymore, I am screamed out so I am sobbing. I begged, very cheerful, for 20 minutes. I screamed and sobbed and lost hand function for about 30 or more. Suck!

David told me that he has gathered 100 postcards for me already! Damn, I will have to work harder. With him going around like that, it just makes me want to help him – this was my genius idea last night as I went to bed. Turns out not so genius. So I will keep putting on DVD’s as I can and I will sell Zed (copies are in, please pay through Linda’s blog if you want one!). And $8.76 Canadian is going to David’s kittens (he has eight right now, he went up to Tokyo earlier this week to take two to new owners and two others went to foster owners so he ONLY has eight). I wish I knew how to help Linda and the Oxygen Concentrator, but I don’t. And so tomorrow I will come up with a plan on how to raise money for that. I know that Linda thinks I am stupid, and that maybe part of this begging is satire, but part of this is the genuine desperation I feel to help Linda and David cover costs. I know people in need, and I don’t know how to help them, I don’t know how to help myself. If it hadn’t been for Linda, I wouldn’t have been able to get home.

Maybe I am so desperate to help David and the kittens because I know they will live on and I will not. That if I save them, some shred of me lives on another 12 years in what I have done. Maybe I am so desperate because I am ashamed I don’t know how to help Linda raise money. That I am the thing in the house which must be fed and taken care of. And now, I am too disabled to beg, what kind of irony is that? I had my Dicken’s Cup and everything! If I could, I would be knocking on doors offering to sweep driveways or shovel walkways for $5, $10, $20. But I can’t.

Turns out I didn't raise much for David, but something, and that is better than not trying at all. Tomorrow the concentrator! And better gloves!

Elizabeth's "Booms", Linda's discrimination and the unmentionable

I am afraid that both I and my trusty computer went “BOOM” last night (my 'boom' as least was free...that time!). My computer blue screened anytime it went on the internet which indicates new motherboard, new harddrive, both, hard to say. I on the other hand felt an aura while doing the postcards for the new requests and only made it facedown to the floor before it started, at which point things get hazy because I had several, and sprained things like my neck and wrist and at the start of one felt myself losing fecal and urinary control but I guess the gift of retention is while you take 20 minutes to pee, you don’t always pee yourself! However a final seizure series later wiped out my speech center, or that what Linda says is her ability to understand me. I now have a little French, a little Spanish, and can say some words but it makes my head buzz and my vision go dark and often I can’t remember what I said. But living IN my head doesn’t hurt, so let’s go with that for a while, okay?

First off, I have been concentrating doing such a quality job with anime pictures because a) I have been getting anime art books when I can at 75% off, and a few from Japan directly now and then for about $20-28. And b) Because most of the time I look a wee crap, you know, face ashen, hunched over, etc, and I don’t want to bring down the tone of this blog. In fact I think the pictures give added value to the blog, while me looking like some pupae fresh from cocoon with slime trails is um, less fun to look at. In fact I use more foundation now and put it on every day because I was tired of the comments from the caregivers (“Oh you look so much worse!”, “Wow, you’re so pale!”; they must have a course on how to make the client feel comforted) . But here I am, looking not too bad. Some could say I am thinner (or that my head is smaller) but I prefer to view it as that my ears are simply doing a late growth spurt. That my two ears are about half the size of my head shows what a bang up growing job they are doing.

Second I guess is to try and tell you the conflicts in my feelings about being taken care of. This means I talk about an unmentionable: money. I get a biweekly allowance and spend it on gifts usually (and artbooks!) and am helped by Cheryl and a bit by Linda for buying postcards. One person mostly pays for postage but a few others have been helping out in that lately. I bring that up because the finances of dying or rather having a prolonged and severe illness cannot be escaped by the one who is ill. Whether that is the Gatorade I have to drink ($1.25 a bottle on sale, 2-3 bottles a day), to the medications I take. And right now, because my current GP won’t move me into harder opiates I have to take 3-4 different painkillers, as will as 2-3 seizure meds, as well as pills for my immune system, for strokes, for my heart and others. Linda doesn’t tell me the cost but I know that just 1 pill I take 3 times daily cost Linda $1 per pill. I have recently had to increase most of the pain, seizure and heart pills by a factor of 2 or 3. When I see the minute pauses Linda has about choosing food, or the other signs of financial worry, it is hard NOT to want to delay in having pills. Who wants to go, “Oh well, you’ll just have to figure out how to pay this off when I’m dead – pass those high price pills!”

This, along with the absurd costs of everything disability related is why I am often overcome with the feeling of being an unbearable burden. So I frequently skip or refuse my pills. However, as within 24 hours I am usually screaming and being held down by a couple people or in a depressed heart and seizure cycle that leads to the hospital ($86 for the ambulance ride), in the end I take the pills. Until I forget I’ve done this “problem solved solution” before and try again.

Because as I grow weaker, as more systems fail, I become more and more dependant on others, which is Linda, a little bit on home care and those she hires. Normally family would help out, however, my parents, after I talked with them over the phone and counselled them on how to ask their GP for tests and what medication to use now have a new lease on life; a dramatic life improvement. My mother finally agreed after I was exceedingly blunt to try the pill created for Fibro and now has a great quality of life; which she told me in a card with a $25 check (so I do phone consultations, for um, $25 I guess!). My father has heat related palsy and is more stubborn but has some better quality of life and has decided after reading carefully about the postcard project, that as an ex-minister, this is the sort of project of giving he supports, or so he told me in a letter which had $10 in it.

Why my parents mail me letters once a month or so when they live within sight of me, I cannot say. My father indicated that this $10 was half of his entire allowance (at which point I wrote to tell him that it is not 1970 and a grown man of 2007 can have more than $20 a week, and I returned the $10 – well if anyone told me they ONLY had $8 after their assistance check/cheque and were sending me $4 I would thank them but return it because $4 is not a large cushion of savings for someone with a disability – I pointed out to my father that these principles were taught to me by HIM, so sorry, and thank you for your concern but no thanks.)

I am sorry if that seemed to go nowhere but it does have a point. I have spent my life solving problems by getting jobs or overcoming adversity and at one point worked five jobs; I worked a full time job, then worked another 39 hours from Friday at 5 pm until 4 am on Monday and then worked the full time job as well as two night jobs. Now it seems due to government agreements that the contributions I made will help others not me. That I have indeed worked year round for over 20 years (I was one of the first to work at the ‘unage wage law’ of California), and have not yet been able to claim anything from unemployment to disability. But that was okay, because I had the degrees now and could get a university job, even if only research and have those benefits. Except that didn’t quite happen. And for a while I applied for jobs and worked in trade while in my wheelchair, but none of the jobs I did or things I wrote, including BBC ended up being paid. Nor really was I seeking that at the time (It would have been NICE!), I was trying to find a paying job in town but now that is far, far beyond me. Indeed so far beyond me, at times I wonder if people aren’t thinking when I say I am disabled, “Hey, I’m disabled, I have impairments, but YOU, like dude, whatever you are is SO FAR below me, that I wouldn’t call it Disabled; breathing maybe, but not disabled.”

Yes, so is someone who needs care for a majority of the day disabled? And when the main aspect of their care is to keep them alive, or minimize the damage to their body?

The other thing I have found with long term (or for those who consider 8 years or 10 years or more long-term; short to medium term care) care is that there is guilt and there is fear. I have guilt because I am watching Linda become tired, trying to work two jobs; one to keep insurance and progress her career, one as caregiver. I have guilt because the joys we had as Able bodied or even when I was a bit healthier are gone, which leaves Linda with the bulk of trying to go out, or do something together, or more often just sleeping or taking a hard needed rest of her own. I would change that, but I can’t. And as I change, more and more mentally and physically, my ability to do anything to assist her is curtailed. That is guilt.

The fear is knowing that while I am the person making her exhausted she is ONLY thing which is keeping me from NOT having the medication, to having to be tied to my bed in restraints while I scream and scream in pain. They don’t have a place for me at the hospital. I would be placed in the only space available, either a facility for the indigent, the homeless, a mental facility or a seniors home. All would probably try to refuse me due to the level of medical treatment needed many times a day. The hospital would refuse me because their job is to stabilize people to get them OUT – to places elsewhere. So wherever I ended up, I would not be wanted, I would received a minimum of care and it would be an incredibly wretched existence which would dramatically shorten my life span, and I would be SO thankful of that. I want to believe it is still last year or the year before, that we have options, that we have stability, and I will be okay, but as I get worse, and worse and Beacon steps back going, “We don’t do medical” that fear grows.

The reason I talk about this is that we were going through a very bad financial patch for a while, which I don’t think I blogged about. I don’t remember what started it, probably some medical cost but I don’t know why because a) it is WAY outside my time frame to remember, no matter how emotional and b) because my recent round of seizures and perhaps a small brain bleed have made that impossible today and probably forever (Oh, when you can taste the blood in your mouth between seizures, that coppery taste in your nose and your tongue and the back of your throat and then you feel it starting again, it is like being alone at the bottom of a mine shaft, you know there is light up there, but are you ever going to see it?). Anyway, that period of crisis ended with a NEW crisis over two weeks which took several hours a day and several trips to the US because Bank of America made a mistake and then they made it several more times turning my account of $68 into -$335, not just once, but after working with them for several hours a day for a solid week, they did it all over again. And this is due to a ‘hidden’ $25 overdraft which IF USED, though you don’t know it exists, charges you with $35 for each use, and if you are like me, buying $6 and $8, and $13.99 online – well, even before you get to No Funds, there are some pretty huge charges. Plus it turns out that in Washington State when Bank of America took over SeaFirst, they never were able to integrate the two computer systems, which means, when you talk to the manager of a bank, or of the district says, “No worries, there are no charges coming in” that you can be hit that night with an NSF fee that has been on the OTHER computer system and lingered since last week but just now decided to hit your account (by the way, withdraws are done BEFORE deposits to ensure maximum fees). So I spent two entire days and many seizures trying to remove this “hidden” $25 overdraft that I had not asked for.

After many arguments with supervisors I ended up with the manager of the ENTIRE Bank of America Service Department at their center and we talk and talk about how the ‘system’ is supposed to be there for the people not the reverse and she goes, “Yes, this is getting ridiculous, let me just take that overdraft off.” A few minutes later she says in this voice of wonder, “I can’t, I, it is saying that I DON’T have enough authority?” She said that the Bank Manager would. Well, more trips on the ferry, more seizures, talking to the bank manager as it happened all again a few days later. And Linda had to keep changing money from US to Canadian and back again (which is a good way to make a large pile of money grow small as the bank takes 7% or so each direction). After 2.5 hours I got what she did not, a complete reimbursement of over $300……AND the email address of the guy who would like to “continue this great conversation some more!” (There are times to ‘come out and be proud!” and this wasn’t the time) It turns out no one in Bank of America can remove the $25 hidden overdraft, it is implanted in the computer code by Visa. (Visa not Vista – one is an evil empire, the other an evil operating system)

Soon after or during this Linda was first diagnosed with a disability/impairment, and had that confirmed by her doctor, who will be meeting with her ever few weeks to work on solving it. Meanwhile, I was broken from my “all is okay” bubble because I did not have an allowance the last period, nor all of the previous. Which is totally fair, but something Linda wanted to avoid me knowing because when I worry about money I do things (like call Bank of America for 7 straight hours), then I have seizures, and seizures, and depressed heat beats and breathing and then I try and do the same thing the next day. And she doesn’t like cleaning up the mess, besides seeing me in that kind of pain.

The money from the book faire, which I help price and select was a couple hundred and was to be a back up pot for postage and my time problems which CAN cause money problems (Linda explained that if I have $40 to spend in a week and I spend that, and then I have seizures or forget as it passes the two or three days that though I don’t remember spending it, that doesn’t make it ‘a new week’ even thought I THINK it is, so when I spend $40 over the NEXT few days=problem – this it seems has happened – we are working on how to fix it without making me terrified about money all the time). But because of the last month we used the money instead for groceries, and medicine. I can’t really talk about Linda’s health and disability because her employers, who were discriminating against me through her are now just going after her (and read here to find stuff to use against her). And though they require you to get an ST02 form (which you have to pay $25 to be filled out from the doctor as it is three pages long instead of the notepad sick note) to get short term disability, they have required her to get that for a single day’s absence. Also, on the form, only the occupational nurse at the Public Sector Agency will know what is on the second form, which states the actual disability and medical issues (you are NOT required to tell that medical information to your supervisors or others due to medical confidentiality, the form simply informs them what accommodation needs to be made – in this case, half days for Linda). However, though the other half of the day is covered by STIIP, it only covers a portion (50-75%). Linda had given the note and it been accepted and thus acted upon, she was already working half days.

On Friday, Linda’s supervisor and the head of the government section approved a statement that Linda’ supervisor, though he/she did not have the medical details (as those are only available to Linda’s Doctor and PSA’s Occupational Nurse) did not feel that she had provided sufficient information and was retroactively withdrawing her STIIP benefits and pay (including the half days she/he had already accepted). Moreover, she/he stated that they had made the decision Linda does NOT have a disability and that Linda WILL show up for full time work Monday and here on or face consequences (By the way, Linda is a government MANAGER, not like, a store clerk or anything). It is winter for Linda right now, weather, health and workplace. This not only counteracts the doctors’ direct instructions for Linda’s Health, the same doctor who wrote up the ST02 but also PSA who holds the notes and medical information. They have basically told a person in a wheelchair, “I think you are lying, so if you don’t walk up those stairs, you will be disciplined or fired.”

Friday was payday, which meant we made it out of the darkness. Well, except with her supervisor retroactively stripping her pay, and our computer dying we weren’t seeing lots of light. This is not a good time. While Linda gave me the choice to return to a ‘safe space’ after the bank of America issues, how can I literally lie there, knowing she is currently disabled and being persecuted? Except I have to, because I don’t have any options, but as least I can be here to support her emotionally. But, like so many others dependant, I look to my present and my future and I sometimes get terrified. They are of course, threatening her job because without the insurance, there is no way we could afford a week much less months of the cost of well….Me (or the costs of modern medicine). And there are no other current options in Victoria.

So that is where things are today. Because I have stamps I have been sent and postcards, I am doing postcards tonight. Because while things seem helpless financially, and I am helpless physically, I can still do things and try to make a difference. Plus Linda made me promise not to kill her supervisor. That doesn’t stop the guilt and emotional pain I feel, every time I am handed my BOWL of pills, looking down into what may be keeping me going, but at what cost to Linda? All the money for Seattle, and the concentrator that was donated, I asked Linda to return when I believed I was going to die like within a few days.

However, I am not dead. And Linda says the money for Seattle is still there, and when we get the final signature and some tests done, we are off. But right now, we have enough to get to Booth-Gardner, to get into see the doctors, and to have about 30 minutes of tests. I am on the waitlist for a brain MRI and a 40 minute EEG next week, if we take those down with us, the HARD data for them to look at, that saves us about $5,000 – tests which Blue Cross has specifically told us, “We WON’T cover you.”

I am sorry that I am talking about money which you are only supposed to talk about when you are making it or have a lot of it. Yeah, I know that I only remember one food, so I think we have been eating the same rice for a while. But Linda is still trying to be as chipper as she can, only our entertainment unit (Which was watching anime or DVD’s on our computer has now gone Kerplunk!”) is down and after that is paid for, I think I will see a lot more rice for a while. I write about this because if you have a long term disability, a severe one, money is an issue. And while Triumph might authorize things like $5000 for a wheelchair, or the Lion’s Club raises money for a racing chair, they don’t raise the money for the race entry fee, or the food to eat, or the drinks you need, or the medicine. And maybe that is why so many couples split up. I hope Linda gets better, and gets treatment, she seems to be getting it. In fact, my crap treatment and subsequent investigation into the neurologist resulted in my father getting royal treatment and immediate MRI’s from the same Neurologist the week after my complaint (odd that!). So, I hope I am by raising a ruckus providing better health care for many people!

Right now I am a wee pissed and frustrated. And yes, pissed not just at the actions of Linda’s employers of simply decreeing “You are NOT disabled, and if you act that way or expect us to follow this Doctor’s instruction, you will be disciplined and lose pay!” And yes, I expect that will play well in a human right court in a few years time, but doesn’t do much for the gas/petrol to get me to the EEG. This is about my parents. I have worried over my parents for years, decades because they had a knack for buying shares of companies about to go bankrupt, and had mortgages which were refinanced. I expected to pay of the rest of my student loans and then pay off my parents condo. However, an inheritance allowed them to move from the condo into a new $500,000 condo (split level; wheelchair inaccessible). And I was happy because I didn’t have to worry anymore. But then, due to various issue they have, I literally have had less contact with them in this last year than I have when I was in Wales (and less visits). And their view is that I got sick on my own, I will have to get better on my own. After all, they took care of their mother, they did ‘their bit.’ Well, I agree they did their bit. Of course, the selling of the mother’s contents to an auction house within 30 minutes of her death was a bit…um…different than I would have done things but okay. My parents took I believe 11 vacations last year. They have just gotten back from 11 days in Arizona, and are going on a Cruise to Hawaii later this year they say, but before that they will be going on another weeks’ vacation, and before Arizona was a week somewhere else that is beyond my memory.

Linda’s mother, who is the wife of a small beef rancher who I believe has had to declare bankruptcy, or the like, after a lifetime of farming (could be wrong), he is in his late 60’s and may still be working in livestock auctions where he has had MANY broken bones (he brings in the bulls, etc to the auction), she has offered to fly out and help take care of me. This is the same woman who would not actually look for more than a second if she could help it the last time we met (some years ago) and still won’t tell people who her daughter is with. Linda’s mother was just in the hospital with heart problems and after two weeks off after a procedure/operation has returned to the care giving work (she is approaching 60 or just past) which keeps her family afloat. She has offered to fly out, putting her family in debt, to take care of me, who she is socially still ashamed of. Like me or hate me, I am family.

My family, half a mile away WILL be floating off on their $3000 round trip cruise. I hope my father who gave me “half” of his funds will use that $10 I gave him back wisely. It is difficult in times like this, not to make comparisons. Particularly as my parents did not keep thanksgiving with us this year, though they did last year ($5.99 special at a Diner). There is no Xmas or Hanukah for Linda and I from them (though there IS for my brother?) and for my parents, though they KNEW there was a great possibility that this was my last birthday, had SOLD my birthday. See, those pictures of me in the graveyard with Cheryl and Maggie and Linda in the video on an earlier post was my birthday because my parents had sold that day, it didn’t exist to them.

When we went to Japan, they gave me a small gift of money to spend in Japan. Well, for them, that meant, they had given money with no obligation, which is well, impossible. So inside they simply wrote, “This is in Lieu of your Birthday” – which I thought was a joke. But no, to them, I have no birthday, not that they gave me anything for the first 30+ years anyway (I am trying to remember the logic which I think was that since Herod’s daughter got the head of John for a birthday present they were evil).

I could forgive them for treating me this way, but not for treating Linda this way. When Linda’s mother will fly out at great cost, but my parents won’t learn how to turn on my oxygen after 18 months just so that it is not safe to be with them, or if somehow I am they wouldn’t have to, you know, CARE for me. I don’t want to be a burden (My father said that often: “Don’t be a burden”). I have never wanted to be a burden on anyone. But I AM a burden on Linda, and I see the effects it has on her. I AM a burden on Cheryl, and it has effects on her too. And Linda’s family is willing to accept a burden of taking care of me. My own parents, or sibling, or relatives, are not. They are Christian so I guess I Tim 5:8 is where they stand (which is kind of insulting to non-Christians but I guess Christians can be at times).

Anyway, that is where things are, and that is why I haven’t been getting as much done, because I spent 5-8 hours a day trying to help Linda with her, um work issues and then a couple hours having health issues (due to the helping and emotional toil) and when I am awake only 12 hours a day, well that sort of does it. I know that Linda wants to give you a blog to update people on the medical stuff, which I am not really privy too.

I simply can not lie by, though I may have to, while people hurt Linda or while books can be sorted and priced, so I am willing to bear the costs I can, which are physical (Seizures, blood, blah, blah, blah). It sucks, but then, it probably reflects how a lot of people have life and decisions that suck when it comes to long term care. Which makes this post and topic a disability issue.

The good news is that with our giant clunky oxygen concentrator on so much we don’t need to pay for the clothes to dry, we just hang them around the concentrator (I’m serious, it saves us like $5 a week!). We don’t have to pay for heat either, but Linda tells me that is free so our clunky steam-punk concentrator isn’t helping us there, darn. Hang on for another day or TWO (computer not coming back today, is sick bad). I hope that my computer will return to me soon and I will be back to at least that stability in life.

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?