I Bear Witness

May 12, 2009

On Friendship

Filed under: Creutzfeldt–Jakob disease (CJD), Family — Tags: , , , — BabushkaBlue @ 12:33 pm

Dad decided to wear pajama bottoms the other day. He normally wears jeans, sometimes khakis. He got a little confused while putting them on. Both of his legs were shoved into one of the flannel legs, making it difficult to walk but he managed to make it into the living room, step by tiny step. He was confused about his difficult walk down the hall, but didn’t realize he’d put the pajamas on wrong.
“It took me an hour to get him out of those pants,” mom said. I know it sounds funny, but this little event broke my heart and maybe (finally) broke through the veil of denial I chose to wear.

It would be wise for me to rejoin the world, but I don’t want to. I sit by the window of my living room and watch the clouds rush across the sky. I watch the hemlocks sway, and cats saunter across the front lawn. I secretly hold his hand from over 1,000 miles away, whispering to his soul: “You are loved. You are not alone. You are a beautiful man.”

I do homework and think about futility. Nothing’s permanent. Friendships especially. I marvel at how simple it is to walk away from someone in pain. Dozens of people I (used to) know have done it to me. Even here.

I witness events through a filter now. Things that used to matter don’t. Little things, especially gestures, loom large in this world of loss and hurt. I have no patience for pettiness; have little tolerance for games. I don’t feel like sifting through lies anymore, so I just don’t.

My English teacher is gentle with his corrections. I’m learning good things from watching him interact. “Maybe you should try to write the sentence more like this,” he writes before he shares a better way as an example. I like that style of correction. He’s kind and in case you haven’t noticed, I value kindness. Kindness comes from great internal strength. I’m learning that it’s easier to judge and reject people. It’s simpler. You mark someone as non-essential and you move away, but is it good for you in the long term view of life? I don’t think so. Kindness takes patience. It takes humility. You have to listen closely. You need to choose a way to hear another viewpoint compassionately, and that’s not an easy task.

A few days ago, someone explained why she’s not my friend anymore. I ignored “email after email” and it’s the damnedest thing. I can’t remember ever (and I’m serious – why lie?) ever ever EVER ignoring an email from her. Why would I? We didn’t have a fight. We didn’t disagree, or if we did, she never said anything to me. I’m in the dark here. I keep all my old emails from my online email account. There’s nothing there. Probably she was sending emails to an old workplace account and they didn’t bounce back to her. The old me would have begged and pleaded for understanding. I’d bend over backwards to make her understand that there must be something else afoot, but you know what? Go to hell. I explained it once and didn’t get a reply, and that’s rude. It’s also a message, so pfft. Everyone can’t be friends. It’s okay. We move on.

You can live with the consequences of your choices. I can’t find the energy to care about how you chose to view me. I can’t beg for understanding and I shouldn’t have to. I look for friends who respect the journey, who understand about ebb and flow, who know how to love on the long term, like family but without the crazy/nosey/gossipy aunt-like behavior. We’re quirky – all of us are – and I need grace right now. Patience. Gentle kindness. Love.

I am bad at sending cards. I am bad at returning phone calls. I’m a terrible pen pal. I don’t write much on my Facebook wall and for the love of Pete, don’t invite me to take one of those goofy tests, because I won’t do it. I won’t send you eFlowers either, so tell me now. Do these things disqualify me? Can I no longer be your friend?

Ha.

I love you in Florida, you in Ohio, you in California, you in Europe, you in Washington state, in Maryland, in Virginia, and Texas, in Canada…

Somehow we’ve managed to get along. My dad is dying an excruciating death while our poppies begin to bloom and I get it! I understand life goes on. Some of us don’t want to sit with our sorrowful friends. Some of us can’t, I know, but some of us won’t, so we find excuses. We pretend our shallowness doesn’t exist. We run away from our fear by naming it something else. Some of us speak about love in hushed, reverent tones, but wow! Some of us don’t mean what we say. My English teacher would gently correct you, though. He’d say, “You might want to consider changing your life a little bit. Try this,” and then he’d give you an example. I can think of ten people who are excellent examples of how to live in a loving way. You know who you are, and all things considered, doesn’t it make you sigh a breath of relief to know that at least, at the very least, you choose love?

May 2, 2009

In the Evening

Filed under: Creutzfeldt–Jakob disease (CJD), Family — Tags: , , , — BabushkaBlue @ 3:58 pm

April 14, 2009

I got this email from my sister-in-law a moment ago:
Completed and had your mom sign all the paperwork authorizations needed for CJD and cremation.
Hard day for her…Ralph seemed verrrry confused this afternoon…she said his left hand is starting to “jerk”.
I will call the guy with CJD before faxing all the info….
xo
cyn

I crumbled into a heap on the couch. This is such a cruel way to die, and I can’t get my mind wrapped around the answer to why. I know I’ll never know the answer, but sometimes getting to that place of acceptance takes a while. Zen isn’t how I walk through my world, so don’t expect it from me now.

I think I’ll grab the dog and watch the sun set at the beach soon. One paper done and turned in with one to go. I completed the hardest one first, the one I couldn’t imagine answering. I answered the two questions so there’s an answer in answering the unanswerable, right? Right?

Ha. I kid. Life is random and often hard, but there’s beauty everywhere. I can see it clearly.

I love you

Filed under: Creutzfeldt–Jakob disease (CJD), Family — Tags: , , , , — BabushkaBlue @ 3:56 pm

April 12, 2009

I hab a bad code and can’t stop coughing, but I didn’t miss any school and oh God! The homework is going to kill me. I know it.
This day? Oh horrible. I had an eery conversation with my mother. She asked me to arrange my dad’s upcoming autopsy, a big deal because of CJD. We believe it would be a good thing to help the foundation research this disease, because it’s so mysterious and misunderstood.

I no longer believe in the CDC’s contention that CJD is a rare disease. The more I learn, the more horrific the information is, so I’m not going to write about it today. Not on Easter.

After I agreed to call the people who will (for free and with great gratitude) arrange to ship my father’s brain across the country, my mother asks, “Would you like to talk to your dad?”

This morning his mind is clear and he remembers me – mostly, or sort of, anyway. I think.

We end the conversation like this: “I love you, dad,” I say.

“I love you too, kid,” he replies.

I hang up and feel everything collapse around me.

October 3, 2008

Would you?

Filed under: Mull, Politics — Tags: , , , , , , , — BabushkaBlue @ 6:21 pm

If I fell, and I fell hard, would you stand beside me every step of the way? Would you be there for me or would you walk away because I disappointed you?

If we disagreed on something important, would you shake the dust from your sandals and desert me? Would you block me because my sarcastic humor offended you?

If I hurt you, would you hurt me back? Would you have compassion when I apologized or would you nurse the hurt and think of ways to hurt me back?

Would you simply stop talking to me, but make the stoppage happen slowly, incrementally, making it hard to notice until the conversations were virtually gone?

Would the intimacy end? Would you let me lie in the dark wondering what happened to us?

If I wept, would you comfort me or cluck your tongue at my weakness.

Would you call me a name because I hold a political view that differs from yours? Would you allow me the freedom to say what I think or would you shun me passively and pick other friends?

Can I count on you? Will you help me back up when I fall? Will you hold me up when I’m weak? Will you believe in me when I lose all faith in myself?

Do you practice fidelity? Do you believe in troth? Can you keep a promise? Will we be friends forever or will the friendship die some day?

If I fell, what would you do? What are you made of? How do you love?

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