serafaery

Eva, beautiful beautiful Eva, died this morning.

It feels so empty, death. Like someone turning off a light.

It's so sad but I have to remember that I'm so very lucky that I ever stumbled upon her journal in the first place. I feel unworthy of the minuscule friendship she and I developed years ago - ashamed of taking even a moment of her thought and energy when she had so much else to do and such a short amount of time. She was 23. Would have been 24 on March 31st.

She has inspired me and honestly changed my life in a hugely positive way. My Gratitude Lists started in reaction to her bravery and spirit, the way she lived above petty concerns the rest of us have the luxury of debasing ourselves with, if we're not careful.

I'm more careful, to love and appreciate and enjoy life, in every moment, thanks to her.

...

This video was posted on her journal this evening with the following text:

"Eva receives the 2010 Summerhayes Award in room 450 at Vancouver General Hospital. Presented by Leona Pinsky and Sterling Aurel to honour Eva's work on behalf of the Canadian Cystic Fibrosis Foundation both in fundraising and CF awareness."

This is a movie that was just edited by Justin last night. We would like to share it because Eva states so eloquently her position on organ donation and Cystic Fibrosis awareness and that this will become such a major part of her legacy.

"Crows at sunset" (Watch on YouTube)

Didn't sleep much. Hours of sobbing.

My left hip, the one that has not been operated on, is giving me increasing pain at night. With both of them angry at me last night sleep was hard to come by.

Part of this is from scrubbing the tub yesterday, I'm sure. I can't even do simple household chores anymore.

My left hip is deformed, but not as badly as the right was. It's in a "grey zone" of deformity, where some people are crippled and unable to walk by age 19, and some go their entire lives without any problems.

It was thought that after it came through my surgery on the right hip with no symptoms, after so many months of bearing all my weight while my right hip healed, that the left would probably be okay.

It might still be okay. Seven years of compensating for chronic pain and weakness on the right have been hard on it, I'm sure. 12 years if you count from the time the right hip started hurting. If I could get proper physical therapy, I might be able to maintain the left joint and not need to have it corrected.

Getting proper physical therapy has proved to be impossible, though, over the last seven years.

Getting it corrected isn't even an option. It wouldn't be covered by insurance, and the only doctors that do the procedure are out of state. I can't afford to travel. I don't know how much my procedure cost in Boston, but the hospital mistakenly sent me the bills for anesthesia for a few months. The anesthesia alone, for a 7 1/2 hour procedure, cost $17,000.

(The Commonwealth of Massachussetts has a "free care" system for large procedures that are not covered by insurance. Hence that state's lack of concern over health care reform in the US.)

I have always been in too much pain, and too ill from lack of exercise because activity causes pain, to get any job other than the one I'm so fortunate to have right now. One where I can take breaks before the migraine hits, rest and take deep breaths, turn down projects if the effort is too much and will make me sick, and never bring anything home. But it covers nothing beyond rent, bills, and school loan payments.

I'm not sure what to do.

I sort of want to lay down and die.

I feel completely alone. I don't have parents to turn to for help. My siblings can't help either. My friends are kind, and good company, but they can't save me, and I would never expect or hope that they could. It's their job to hold my hand and remember me when I'm dead, but not to save me.

I have Willow to fight for and that's enough for now. But what about when I lose her?

One step at a time, I suppose.

It just all feels like far, far too much to try to deal with alone. I have absolutely no resources. If I had a little cash, or someone to lean on, to hold, I could handle it.

I'm going to end up one of those decrepit wheelchair people out in front of the McDonald house that I walk past every day. Hanging out on the corner with crack dealers, alone, no one to dress or feed them or take them out or give them hugs. If I'm lucky. They're the lucky ones, who waited years on a housing list and somehow got in before they died. Some of them seem vaguely content. I couldn't do it without a pet, though.

...

Headache.

I love this guy. This a very optimistic, hopeful, interesting 20 minute video from TED of Aubrey de Grey talking about treating aging as a disease, due to evolutionary neglect, that we should treat like any other illness.

He feels we don't have the right to stay in our "aging trance", in which we accept it as inevitable - that we can make progress toward treating aging and extending healthy, robust life. He feels we have a moral imperative to give future generations the choice to live longer, rather than neglect this endeavor and sentence them to shorter than necessary lives.

I. Don't. Want. To. Die.

I know I will, all too soon, because we haven't advanced far enough for science to be able to extend my life much, if at all. But what an amazing, hopeful gift; to be able to give future generations the choice to live twice as long, or ten times as long, if they so wish.

(Yes, there would be a need to balance longer lives with lower birth rates. Let them figure it out.)

It's hard not to be dazzled by the prospect of people in the future pitying our tiny little short existences, and becoming so much more; more wise and gentle, I would hope, with extended life spans.

I wish I could be one of them.