It is not always darkest before the dawn; it is often darkest when it IS darkest. ‘Do not be overcome by the world.’ Do not be overcome.... If I suffer and if I am in darkness then let me fight. Help me up so that I can fight! Because I do not need to know how to fall, everyone knows pain, everyone knows suffering, everyone knows what falling is.
In the series Air, she has progressive peripheral neuropathy and once it reaches completion, she will die. And I suppose, so will I. The question then isn’t will I suffer? As I will. Nor is how long will I live as I live as long as can be. The question is will I attempt to represent the impossible in unimaginable circumstances? In every action, in each act of resistance, I tilt at the greatest windmill. I resist. I am not, I will not be what is expected of me. I will speak of the unspeakable, I will speak for the unheard. And I will act. But how? And what is possible? I don't know yet.
See, THIS girl has gotta fly. But first I need a little vision, and help from my friends. A DNR is meaningless as Linda and I already know what extraordinary efforts are. They are when a blood stranger comes over every weekend to assist my living and my dreams. They are passing out and then pulling myself into a wheelchair to write an email ‘because I gave my word.’ They are getting up every night to give me pain pills so that I can sleep. I know this is my future....because it is my present.
So yes, I will rest...when I cannot drag myself further. Or because I have stopped to cradle Linda.I do not plan to die for a long, long time to come, whether that is a month or five years. Because I want to know what comes next, don’t you? Yes, I am scared (aren't we all at times, times like these?), and so we use up more toilet paper crying in this house than we do in the bathroom.
But please, not quite yet, because I am still learning how to use these new wings. And if I can only fly for a couple minutes watching a video, it is better than staring at a wall.The video these images came from, winner of several AMV awards, can be seen full screen here or hit play on the screen below for the small screen version.
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11 comments:
Elizabeth, although I read your blog I think I cannot really really understand how it feels to be you, because no one should have to go through what you are experiencing. When I think only of a few things that you have to endure, I find that I would wish them to no one. I haven’t experienced bad pain, I feel cold easily and prefer summer to winter, so I can’t imagine having to feel cold all the time just to be able to survive. I don’t understand why careworkers are not permitted to talk to you, I think that is inhuman and cruel.
Today was my last written translation exam. The text reminded me of your blogs about women athletes, because it was about one of the first women to run the Boston Marathon.
I hope it gets cooler soon.
Sandra
I wrote a blog post on her, under the aspects of the olympics. In the original olympics, a female runner came and ran the entire marathon but was not allowed into the stadium for the final lap, so she ran the lap outside the stadium, over 100 years ago. And yet, not until 1984 would women be 'allowed' to run the marathon - who are they kidding, women WERE running the marathon. I am really glad you had your last written exam, it sounds like an interesting text to translate.
I really don't think anyone including myself could imagine or can imagine what happens next. Or as Cheryl puts it, "So drives me crazy because she is so **** stubborn...but it is what keeps her alive." Um, er, yeah.
I am horrified that your care workers neither speak to or touch you. How can they give care if that is what they do?
Posters! I bet I will be able to find one today. I will be looking. You absolutely do need changeable stuff you can put on the wall or ceiling.
Please, look forward to getting pictures of me and Carapace and the museum. Maybe even Rahhhhr.
What the song said. You're loved, Beth.
Oh Elizabeth. I can only say things I've said before, trite things:
-'virtual hugs'
-'thank you for reporting from the extreme, terrifying, unknown place where you are'
-'you are a powerful writer'
-'I wish I could help'
I hope the heatwave is over soon. I hope your stubbornness includes room for the tiny pleasures, sweets and cat-visits and dreaming of birds and kittens and talking to strangers at the craft market.
I hope, selfishly, that you will continue to write for a long time, my teacher.
Dear Elizabeth,
You know I've dealt with loneliness, I have spent so many hours, days, probably years alone, without human contact. We've talked about it. But I have my windows, I can see our sunflowers growing, I can see the sky & the mountains in the distance. Even today, another day when I won't be going outside because I'm too sick & weak, can't take the heat or the sun (even on a cool day sunlight can cause my Lupus to flare). At night I can see the moon come up.
Other people, well people, even some sick people have lives - they go out, have human contact, even if they talk to no one they are among people, part of life. Just as they have no way to comprehend the pain, the sickness & the deepest darkness that often comes with it, they have no way to measure the relentless expanse of loneliness, the sheer emptiness inside when life closes down to a house, a room, a few feet of space next to an air conditioner.
I have endured for years, but it was you, Elizabeth, who taught me how to fight again, to resist. I wish I could help you endure. Usually I tell you that you are loved, that I love you. But as I watched the video & listened to the song (sobbing the whole time), I realized something of equal importance - I am loved, dear Beth, you love me. I believe we will be together, we will meet in this lifetime. Now, let our two souls fly up into the night sky, high over the land & sea. What a blaze will light the world when our two souls touch.
Sharon
I am so thankful for the strength in you that keeps you choosing to live. I am glad you speak of the unspeakable as these are things that need to be told and voices that need to be heard. I hope that your words will reach out and change attitudes and make the world better – I believe they are already changing people for the better.
Yes, keep stretching and testing your new wings. The fear is there but we are able to keep moving forward together using lots of tissue but still moving forward.
Yes, keep living, keep trying. Linda and I are here to lift you, to catch you to help you.
You are loved!
You are flying. You keep pushing, keep trying, keep living, when others would have already gone Icarus' route and fallen out of the sky. You are still alive, still flying, and I am glad of it.
I don't write as well as you, never will, but I value what you write.
*hugs*
I'm catching up - I just read part 1 and part 2 of this together.
I don't think much of what I said in email could have a comfort to you or of help. Thank you for sharing the video and the message that we are all loved.
Could mirrors be used to give you a view beyond the walls? Or a webcam to point out to a view you could see from your computer? Maybe something that could go on your amazon wishlist. I don't know if these things would help at all.
It's not proper outside. It's not contact and touch. I'm powerless to help with those things.
Here's a voice across the darkness hoping a small gesture can let you know that someone cares. For what that's worth.
Hello, my friend. I'm sorry I've been absent so long. Not having Internet access at home was a total pain. I have access now, and I will be talking with you more -- though you should feel no obligation to respond. I'll send you emails and make comments here not because I want you to overexert yourself but because I want you to know that I'm here, that I haven't and will never abandon you, that you are loved and thought of every day. If I were there, I'd find a way to touch you that wouldn't hurt. I'd sit next to your bed and read your favorite novels and poetry to you even while you slept, hoping the words would fight back against the nightmares and the pain.
You have wings and you do fly. Even metaphorically, if you think about your postcard project -- that's bits of you flying all over the world to people, fighting to bring life everywhere around the world.
Thank you for making your light that guides the rest of us.
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