Category Archives: Venting

All I Want

There’s nothing to say today. The ocean is blue, the sky is blue, the flowers in the bush over my fence are blue. I’m blue. Even the dress I’m wearing is blue. I’ve been sick with this cold for five days, going to bed at 8pm, trying to shake it off, but still waking up in the middle of the night, dry mouthed and achy, full of nightmares that Rob is gone. I want to wake up in the morning and roll over. That’s it. That’s the whole thing. I want to wake up in the morning and roll over.

Well, maybe there’s more. I want to feel my feet on the ground, stretch my arms above my head. I want to take control of my day, of my life. I want to be alone when that feels good. I want to be among friends when that feels good. I want to walk through my house, something I have never done.

I want to pick my daughter up and spin her around the room. I want to show her how to stretch and how to do yoga poses. I want to run my fingers down her back and make her laugh.

I want to take the dog for a run. I want to walk and walk and walk so many miles until there’s nowhere left to go. I want to climb stairs. I want to try on clothes. I want to look down and see my calf muscles.

I want to play soccer. I want to take a full-entire-complete breath and hold it, without fear. I want to have a conversation with a stranger who isn’t wondering why I’m in a wheelchair, because I’m not in a wheelchair. Read More>

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Streaming

I took some Dayquil this morning, so bear with me as we go on a journey of my confused consciousness. I don’t handle medication well. Although at the moment I am very calm, slow, and sleepy, none of which are unwelcome feelings.

First off, who’s interested in what’s going on with the van lately? I know I’m not, but I’m living it, so let me just share that we still don’t have our van back. We are on our fourth rental, because they keep having to take the rentals back to service them. Right now, I think we’re driving a Toyota. Or a Dodge? Who cares. The point is that neither Mobility Works nor Braun, which is the company who converted the van, know what is wrong with it. So they will be redoing the entire conversion, an exercise that will take something like three weeks. Everyone’s being really nice about it, and we do have the rentals, so getting around has been fine. Still, I’d like to end the saga of the van and move on to something else.

I have school fundraising calls to make this morning. And I’m still working on finishing up my video for A Life Story, which involves going through photos and boxes to find appropriate items to share as part of the B roll, the stuff they flash up on the screen while you hear my voice talking about what my life used to be like. While the filmmakers were going through a box of my things, they found a gangsta rap coloring book that my former team at work had decorated when I left the Bay Area for New York back in 2005. I don’t think that the gangsta rap coloring book should be a part of my movie, but I was pleased to see it once again. Coloring, like many things, is a skill I no longer possess. Read More>

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The Golden Beads

Otto sleeps in a crate next to Rob’s side of the bed. He’s not a quiet sleeper. First of all, he snores like a drunk old man. Second, at various times during the night he moves around in his crate so roughly and wildly that I’m almost positive he is transforming into some kind of werewolf, and that when he finally bursts out of his crate, he’ll be wearing a cape he fashioned using only his doggie blankets.

It can be hard to sleep through.

I’m back to wearing the BiPap with nasal pillows at night, which has really put a damper on my goal to never have anything that far up my nose. I’m also using the chinstrap, which helps me keep my mouth closed while I’m sleeping. To quote my friend Kevin Swan, the chinstrap has definitely not brought the sexy back. It makes me look like an emaciated high school wrestler, but I must admit I’m sleeping better.

I can no longer lift my left arm over my head for a stretch, and it’s been ages since my right was able to move that way. So I wake up in the middle of the night with shoulder pain, and if it’s really bad, I have to wake Rob and ask him to raise my arms towards the head of the bed. Obviously, this is the highlight of his night, especially when he was comfortable and snoring just as loud as Otto. Read More>

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