It’s my 40th birthday. This morning I woke up in a hospital bed in a hotel in California’s wine country. The hospital bed was crucial to the trip, so that Rob and I could get some sleep. But of course there is something extremely messed up about spending your 40th birthday in a hotel with your husband in separate beds. Especially when your bed has rails.
I asked Rob to bring me to Calistoga for my birthday because the wine country might be the longest love affair I have ever had. The first time I came here was November 4, 2000. My 22nd birthday. I knew nothing about wine, except that I greatly enjoyed it, and so my boyfriend at the time and I went to all the places we had heard of (meaning all of the places that sold cheap wine in Madison, Wisconsin.) We had an amazing time. This is my happy place.
The first time Rob and I traveled here together was in 2005, Read More>
Rob’s new bike arrived this past weekend, and the weather did not comply with his desire to get out and test it. He said more than once, to me and to other people, “I can’t believe I’m just getting my bike and now the weather is so bad I can’t even ride it.”
I understood what he was saying, but it brought up a feeling that I get from time to time when people say things to me or in front of me that underscore my disability. The struggle I go through when this happens is to wonder whether I am being oversensitive or they are being at least slightly insensitive. I have more examples: the friend who told me she was so tired of sitting on a particular morning that she was going to stand for the rest of the day and make sure she walked around a lot. The friend who made dinner in my kitchen and went on and on and on about how fun it was to cook and particularly in my kitchen, with its counter space and great appliances.
There’s a big part of me that wants to laud these women for feeling so comfortable, and for maybe not seeing me as disabled when they said these things. However, I have to admit that in the moment, I was annoyed. You’ve been sitting all morning? I’ve been sitting for three years. You love love love cooking in my kitchen? I’ve never done that. Read More>
“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>