Category Archives: Life

Fighting words

Last week I wrote about being sad, and I got some great responses from people who could empathize and sympathize. My favorites were the people who assured me that their kids are diabolical candy sneaks, which absolutely made me feel better because it’s nice to know that some things are near universal. So today I thought I would write about something else that is pretty universal, and that is the difficulty of being married to another human person. Rob and I have all the normal arguments that you might expect from a couple who has been together for 11 years. But we also have the arguments that stem from ALS and the way that it has thoroughly changed our dynamic.

Take teeth brushing for example. This simple act can start a war in our house. I want Rob to understand that the backs of my teeth need to be brushed. He claims he does understand that, and insists that he brushed them. But he didn’t. And so here we are, me not wanting my teeth brushed by someone else, him not wanting to brush someone else’s teeth. And both of us annoyed with each other, because yet again it didn’t go well. I can see his point. He is not the kind of person who enjoys being criticized when he’s trying to help. Is anyone that kind of person? I still want clean teeth. We are at an impasse, and so we begin hurling our strongest ammunition, going in for the kill.

Rob calls me a Dementor, the soul sucking happiness destroyers from the Harry Potter series. I give him points for creativity, but I am sort of extra annoyed because he knows that I consider myself more of a Professor McGonagall type. Read More>

|Categories: Life, Relationships | Tags: , , | Permalink

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.

| Categories: Life, Meditation, Parenting, Progression, Relationships, Venting | Permalink

Boston

“I can’t process this,” I tell the social worker who is sitting at my kitchen table. “I am unable to write a single word.”

I need to grocery shop, I continue. Also, the Cubs won the World Series. Rob is in Arkansas. And for some reason, I can’t get Shakira’s name out of my head; it is like an unwanted mantra, a roadblock to every cohesive thought. I blame Scarlett, and Zootopia, which she watched on both plane rides last weekend.

The social worker has short white hair. It is kind of curly and kind of spiky, and I think she looks cool in her cat glasses. She waves her hand in my direction. “So you’ll do it next week,” she says, without concern.

But when I woke up this morning, the sky was so blue and the ocean out my back door so calm, that I felt sure today was the day. Yes, I’m still exhausted from our trip to Boston, which was followed by a Diwali celebration, and Halloween. But all I have to do is bring words together into sentences, and surely I can make that happen without…Shakira. Shit. Read More>

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