Wednesday, July 11, 2012

'Let there be life', Linda decrees

Linda gave me life: now we both just want to spend time living it.

Linda was using the ambi-bag in wee hours of the morn, to breathe for me, but I was still suffocating because my diaphragm wasn’t letting the air out correctly. She moved to massaging the diaphragm itself so I could both take in and let out a breath. I have only the vaguest memory: after a while of the chest hurting, and the throat burning, there is a feeling of fizz in the blood, bubbling super fast and the need for breathing, after being so desperate goes away.

I don’t know how long she was breathing for me, I was already on continuos oxygen for sleeping, but it wasn’t working and I remember thinking at some point, “If she calls 911 now, I’ll be on a tube the next time I wake up.” Then the blackness overwhelming me when she got the diaphragm to work. It is a bit scary as I don’t know if I am going to wake up ever again, and it is a bit of a surprise when I do.

“Hey, still here.” I think, and try to move my head, noticing that I’m still on full bore oxygen.

I had shut down on Sunday completely for two days, which is what it has been like for the last few weeks. The heat is making things hard. I was out of it, in bed, then finally able to get up, went through about 7 hours of almost unspeakable hell; when it takes two hours of concentration to take sips of water and a melted smoothie. Like a cheap car in the rain, some systems just didn’t want to go when I needed them the most, and when I went to go for a nap, I just….stalled. The breathing stopped, and stayed stopped for a long time.

For us, it is the long road with minimal hope. A lot of ‘If’s’, finding out that Linda came second for a top job was hard, and still struggling to just keep the lights on, not to mention now three years of patch and parts. There is a feeling that right around the corner, things will improve: I just have to try and get my body stable to hang in there. The list of professionals who say I ‘should be’ dead is long and no one saying ‘Hey, here’s why she’s alive.’ – which is treated like a crime in our budget cutting medical system.

Linda works hard, not just physically but emotionally. And I am thankful for each comment, effort, thought, deed and choice of caring she makes. After over a year of miscommunication and the hurts on both side, she is responding back in a way I can understand (at least most of the time). I’ve been trying for the last 6 months or more to be conscious and responsible for my actions, despite problems in understanding, reaction and hyper-emotion due to reasons I can’t talk about because VIHA would love to slap me in chemical restraint drugs.

Emotional liability, either due to a body/brain connection that is not known, or due to lack of oxygen and rerouting dead pathways.  At the same time, for the same reasons, my dyslexia in reading is high, and dealing with hurts is hard because in my head and what I feel emotionally there is no space between the ‘then’ and the ‘now.’ And so when working out an issue, several emotional ‘hurts’ may be discussed, which is like having them all happen 20 minutes ago (it isn’t PTSD, I am not reliving it, it is sort of like a box sealed at the height of emotional pain, and even if that is resolved, talking about it opens the box, which is always at that strongest emotional point).

Vulnerable takes strength and is painful and difficult, while being hard and stony is easy. Closing yourself off is easy. The risk of staying vulnerable to hurt is high, but without being open to that hurt, there is no way to share, to bond, to achieve an ‘us.’

I hope that in the near future finances and the stress that causes can be lifted. Also, hoping the 10 days of heat and 14 predicted can be survived.

Recognizing the strong reactions and trying to take five or 10 minutes to just sit there, or listen to some music, or watch something that literally changes my mood, viewpoint, and mindset is what I can and will continue to attempt. The realization that I have the strong emotions of a child does not absolve me, but informs me to try harder. But it sure is draining.

Linda has been listening to “I won’t give up” (on us):

While, when trying to work out the ‘Grrr’, mine is ‘What the Hell’

Linda: “So, how many images do you think they have stolen from you?”

Beth: “Honestly, probably a few.” (the problem of importing original art from Japan and using it is that then it becomes a ‘rip fest’ – and the cost and hours of Linda and I photographing the art can be eliminated by a right click and save – After supporting many of the more obscure circles in Japan, though it is much harder now, I hope others do as well).


Neil said...

"And it was good."

Yeah, your health sucks, and being out of work REALLY sucks, but you have love. Ive never seen any wedding vows that ask, "Will you promise to keep her breathing if it's not her turn to die?" I think that means you have the bestest wife anyone could ask for.

Given your limited mobility, I can't understand why VIHA would want you retrained. Drugs wouldn't help anything; I'm not a trained medical person, and even I can see that.

Oops! There's a thunderstorm rolling around, and it has decided to get real intense, so I'd better cut this short.

Keep hugging each other, and please give each other a hug from me!

Love and zen hugs,

Anonymous said...

Linda loves you and you love Linda
Again and again you two are teaching us to hang in there when it gets hard,, That is the true definition of love and how marriages should be

JaneB said...

Much concern and love and good nthoughts to you both - and wishes for a change in the weather!

Baba Yaga said...

Good to read that communication's getting better again. Somewhere, Richard Feynman observed that communication is harder than rocket science. I'm not sure he was wrong.

Elizabeth McClung said...

We care about each other, deeply, but often that gets lost in translation. And we both edit so much out because of wanting to spare the other or bad experiences or assumptions (which are the easiest to do and also easiest in hurting the other person...the dread assumption). Love is not just passion, but determination during our own personal worst times, to keep trying to love the other person entirely, even if actions or words hurt us. It is because of the storms, and how we are, together, in a tiny craft amid a vast and violent ocean, deciding that with no evidence that things will improve, we will strive TOGETHER, that defines the depth and width of love. To know that hurt will occur and be vulnerable anyway, not because of the evidence of change but because of the belief that the other person will accept that the pain of change is worth it: that is love.

Anonymous said...

Dear Beth,
It's me, Sharon. Been having trouble with Google losing my posts, so I'm using an Anonymous identity.
I'm so sorry that your breathing shut down for so long. It must be so scarey for you and hard for Linda. And the times when you come back out of the "shut-down" sleeps sounds terrible & painful. Yet you still fight to come back and, as you say - you remain.

I'm glad to hear the you and Lina are communicating better. And that you can experience the love, compassion & companionship that also remains.

We are soon to be loosing our house. Due to massive medical debt (and this is with insurance), we just don't have the income to pay the mortgage and basic living expenses anymore. The bank would not help us with re-fi or motgage deduction as Dennis does not make enough money (he is on his third job for this recession). We never had a subprime or bad loan, never missed a payment in nerly 20 years. . We may be able to sell with a tiny bit of profit, but it is more likely that it will be a short sale.
Anyway the whole reason to tell you this is that although it was a blow I was not expecting and it upset & hurt me greatly, it did not hurt as much as having Dennis fighting with me, saying hurtful things. He was too stressed dealing with this situation (and of course being always aware as I am that our money troubles are due to my illness) to deal with me. Now, we too are having better communication and love is being expressed & felt more often. Honestly, I have lost so much over the years, I can deal with losing a house.

I am thinking of writing President Obama that people with insurance are still quite able to become banckrupt it the USA.

Love & soft hugs to you & Linda


Devi said...

Sending prayers and loving thoughts for you and Linda.

As for ripping images from your blog, I admit I have saved some to my own harddrive, but only for personal viewing - I respect that you took care to buy the books.

Elizabeth McClung said...

Devi: Any of the images I own from commissions or photos are free for use in reproduction (credit given only) - for personal use, I don't think there is any limitation, it is just for making films and such, if they gave credit that would be good - It isn't just books, it is single images, calendars, doujinshi (which are private sales of 50 or more art micro books of 8-32 pages, using a proxy buyer in Japan, which takes a 20-25% commission - it took much of the money from the manga sales - I have 3 bookcases full of the art - I really do try to be as legal as possible in all cases, or write the artist or song writer for permission of usage). But private download isn't the problem but when they are resold (which is why I keep the ones I put up in a limited size, so they have too low a size for resale value on subscription sites). But the Canadian Supreme Court said that single use tranfer was not breaking copyright, so you are all legal. I can even send you whole folders and it would be legal.