Category Archives: Meditation

Down

I’m sad. Is there a more boring emotion? In sadness, nothing seems possible. Nothing seems worthwhile. Sadness is a hole, it is carrying a handful of shiny pebbles, and each pebble is a promise, and they are all falling out of your hands, disappearing as soon as they hit the ground. Sadness means that you sit by yourself and you can’t even read or listen to music, and so you stare at the sky and wonder if the feeling will ever go away. And then you think that probably it won’t, because there is nothing to look forward to, and there is no way to be in control of your life anymore.

My sadness means I haven’t been able to write. I’m tired, and I haven’t really been able to explain myself in conversation. I’ve been thinking and thinking, casting around my brain for something to write about, anything. So finally, I’ve decided to just write about this, this reason that I’m not writing. This reason that I am feeling so alone.

It probably started because I’ve been using the BiPAP more often. I love being on it, and that makes me sad. It scares me, to think that I am happiest when a machine is breathing for me. That this is when I feel safe. I’m sad because I feel like my house is not my own, there are people there all the time helping me and I am so grateful to them, and I want them all to leave.

I’m sad because every morning my daughter gets up and sneaks candy or fruit rollups or something else that she is not supposed to eat for breakfast, and there’s nothing I can do about it because I can’t move. I threw out all of the candy, I have acknowledged that we can no longer buy ice cream. My sister reminds me that many kids sneak sugar, that she and I certainly did, that this is not a reflection of my parenting. And I know she’s right, and I still can’t help but feel guilty for not being a better supervisor, a better monitor, a better mom.

I’m sad because I took Scarlett to vote for Hillary Clinton on Tuesday and the future seemed so bright and clear, and then it wasn’t. I cried the next morning when I told her the results of the election, and she asked me if her friends would be sent away, specifically one friend that she worried would have to go and live in India instead of being here with us. And of course I reassured her that no one was taking her friends away, but later I cried again, because it’s not something she should be fearful of. Not in 2016. Not when we thought we were making history. The good kind. And I know not everyone who reads this agrees with me politically, but that’s not at all the point. I don’t want this to be political, I want it to be about my daughter, and all the pebbles I thought that I held, and the way that they’re all falling, falling out of my hands, because I won’t always be there to reassure her.

I tell my sister all of this, and I tell her that I know what she’s going to say. It’s not my fault that I’m sick, that I can’t get out of bed in the morning by myself and make breakfast for my daughter. I know that she is right when she does in fact say these things. Parenting is hard, she reminds me, even if you’re healthy and not completely exhausted.

Then I am sick of my own voice, sick of the way I sound whiny, sick of the way my spirit is sinking to join my body on the ocean floor. I sit there and all of my thoughts rise like cloudy jellyfish. They are escaping, like the pebbles but in reverse. Everything is getting away from me. I go to my machine, and I just breathe.

Scrambled Eggs

“I don’t pretend to have all the answers. I don’t pretend to even know what the questions are. Hey, where am I?” — Jack Handey

I sort of think I should just leave that quote here as today’s blog. It sums up nicely what I’d like to say, and I’m not sure I can expound on it very successfully. But here you are, so I’ll try.

I’m sitting in my bedroom trying to meditate, but my head feels like it’s full of scrambled eggs. I can’t focus on one idea or even a simple set of words that might bring clarity. Clarity, I say in my mind. Clarity. As though that single word might have the power to rush in and vacuum out the contents of my brain, leaving only what is elemental. It doesn’t work, so I lean back in my chair and stare up at the light fixture, running my eyes along its scalloped edges as though I’m working at a strand of worry beads.

I’m perseverating on the concept of a life without ALS. Read More>

Two Worlds

Living with ALS means that you are often straddling two worlds. For me, the first world is the one where my friends talk about school, their kids, their vacation plans, their jobs. In the other world, my friends talk about making their own funeral plans, how to take some of the burden off of their families, picking out what they will wear when their kids say goodbye to them. Both worlds are real, but it can be extremely challenging to toggle back and forth between them. I’m getting better at it, maybe? I’m not really sure.

I had a flash of former life last night, a vision of this yoga class I used to go to regularly. The doors that closed, the heat rising to 110°, me on my mat performing the same 26 poses in the same order, all that strength in my legs and arms. One time, lying on the ground, as calm and settled as a leaf, when the instructor came to stand over me, his sweat dripping down onto my own chest. How I flinched when the drops hit me. The way the room would begin to smell stale, a burnt popcorn aroma that I associated with mistakes, as if everyone there was purging what lay just under their skin. Read More>