About Me

Living life one dream at a time.

Words of the Wise

"What after all is a halo? It's only one more thing to keep clean."
-Christopher Fry, The Lady's not for Burning

"Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says, 'I'll try again tomorrow.'"
-Mary Anne Radmacher

"Do you want me to tell you something really subversive? Love is everything it's cracked up to be. That's why people are so cynical about it. It really is worth fighting for, being brave for, risking everything for. And the trouble is, if you don't risk anything, you risk even more."

-Erica Jong

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our Light, not our Darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you NOT to be? You are a child of God. Your playing small does not serve the World. There is nothing enlightening about shrinking so that other people won’t feel unsure around you...We were born to manifest the glory of God that is within us; It is not just in some of us; it is in everyone. As we let our own Light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others."
-Nelson Mandella, 1994 Inaugural Speech

"Until this moment I had believed forgiveness to be a special virtue, a beneficence God expected of good people. But it wasn't that at all. Forgiveness was an instinct, a desperate impulse to stay connected to the people you needed, no matter what their betrayals."
-Monica Wood, My Only Story

"If neurotic is wanting two mutually exclusive things at one and the same time, then I'm neurotic as hell. I'll be flying back and forth between one mutually exclusive thing and another for the rest of my days."
-Sylvia Plath, The Bell Jar

"The most important things are the hardest to say. They are the things you get ashamed of, because words diminish them—words shrink things that seemed limitless when they were in your head to no more than living size when they're brought out. But it's more than that, isn't it? The most important things lie too close to wherever your secret heart is buried, like landmarks to a treasure your enemies would love to steal away. And you may make revelations that cost you dearly only to have people look at you in a funny way, not understanding what you've said at all, or why you thought it was so important that you almost cried when you were saying it. That's the worst, I think. When the secret stays locked within not for the want of a teller but for the want of an understanding ear."
-Stephen King

"Have you even been in love? Horrible, isn't it? It makes you so vulnerable. It opens your chest and it opens your heart and it means someone can get inside you and mess you up. You build up all these defenses. You build up this whole armor, for years, so nothing can hurt you, then one stupid person, no different from any other stupid person, wanders into your stupid life...You give them a piece of you. They don't ask for it. They do something dumb one day like kiss you, or smile at you, and then your life isn't your own anymore. Love takes hostages. It gets inside you. It eats you out and leaves you crying in the darkness, so a simple phrase like 'maybe we should just be friends' or 'how very perceptive' turns into a glass splinter working its way into your heart. It hurts. Not just in the imagination. Not just in the mind. It's a soul-hurt, a body-hurt, a real gets-inside-you-and-rips-you-apart pain. I hate love."
-Neil Gaiman, Sandman: The Kindly Ones

"Being always overavid, I demand from those I love a love equal to mine which, being balanced people, they cannot supply."
-Sylvia Ashton-Warner

"What I need is someone who will make me do what I can."
-Ralph Waldo Emerson


"You know, when you crawl that far down into the abyss, you really shouldn't bring stuff back up with you. Some things are meant to live in the dark. Your blog is like one of those fish with no eyes. Only slightly more disturbing."
Sunday, January 3, 2010

Death

I learned today that M has been diagnosed with ALS.

I am so angry that I could scream.

When my friend E died in October, it hurt on a level I'd never experienced. Sitting in the ICU, holding his wife's hand, and watching the nurses with hushed voices go about their business, there was a sense of desolation. Eighteen months of fighting leukemia seemed deserving of a more dignified end. Knowing that his family and friends had been with him every step of the way was small consolation, I thought at the time. The unfairness of death seemed to outweigh everything else. We had done everything we could, and it still was not enough.

But I took care of things. I made the phone calls that his wife could not make. I made funeral arrangements, and I made food. I picked relatives up at the airport, and I helped clean up his things. I stayed busy. I was useful. I fought the sense of helplessness by doing something - anything - to make things easier. I was okay because I was making a difference, no matter how small it was.

Now this.

I instantly realized that M's situation will be dramatically different. ALS has no cure, so the only hope is to slow its progress. I don't know how long it will take. I don't know how it will end; he may choose to end it himself before the disease becomes unbearable. I don't know what he's thinking, and I don't know how he will manage.

What I do know is that he will do as much of this alone as possible. He will not let me help, and he will not rely on family or friends except when absolutely necessary. He believes that accepting support is a weakness, and that asking for help is unforgivable. He will insist on preserving what he sees as his own dignity.

This is his prerogative, of course. But I hate it.

I hate it so much that I could throw up just thinking about it.

I know that we never could have made our relationship work forever. I realize that despite how much we've always cared for each other, our differences were too great to allow any permanence. I made peace with that long ago, and I won't kid either of us by pretending otherwise.

But it hurts desperately. I now realize how fortunate E was to have the people he loved at his side through everything, and how important it was to not have to fight alone. I see his family take solace in the fact that they did everything they could for him, and find some semblance of peace in the connection they felt with him as the end neared. I see the difference it made.

M will never allow himself to rely on me. He will begrudgingly accept some level of help from his sons, but most of the basic needs, I expect, will be met by strangers. Financial compensation is much easier to dole out than thanks, no?

I grieve already. I am horrified by the thought of him slowly dying alone. I can't comprehend the level of misery he will experience, or how it will be compounded by his stubborn refusal to let people love him. It screams of wrongness, and it rages at my sensibilities.

Maybe it makes me so angry because I know that I am so much like him, if on a much more subdued scale. Or because there are so few people in my life that I would be willing to ask for help if I desperately needed it, and I can't bear to lose one of them. Or because there are so many opportunities that have been lost.

I will say, though, that the saddest part of all is that I don't think the ALS will kill him. I think his pride will take him first.

And that is something I can not reconcile.

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