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?