Wednesday, March 11, 2009

A huffing and puffing day

I've spent most of today in bed, because every time I tried to do anything I got ridiculously short of breath. I did get up this morning and made myself a cup of tea and some cinnamon raisin toast (Marty stayed at his place last night), but went right back to bed. Oliver and Gilbert kept staring at me with that "we want breakfast" look, but they are actually very easygoing cats and seem to know they'll get fed eventually, which finally happened about noon when Marty arrived.

In the early afternoon, David Oaks called from Oregon to record an interview for his Web-based radio show, which will be aired on Saturday (see, and later I got a call from a Boston Globe reporter who e-mailed me yesterday to set up an interview about my work over the years, to run in the Living Section on Sunday. Then one of my favorite visitors, Susan, arrived with the wonderful Thai chicken soup we both love. Before she arrived I'd been up for a bit, putting a few last dishes into the dishwasher before running it, and it got me very out of breath, so when she arrived I wasn't ready to get up for awhile. She came and sat on my bed and we talked, and Oliver, who always has to know everything that's going on, came and sat with us and got lots of strokes and tickles from Susan (Gilbert is pretty shy around strangers, although he did come out later and let Susan pet him), and after awhile we went into the kitchen. Susan told me to sit down and I told her where everything was. She and I like lapsang soochong tea, so she brewed a pot and heated up the soup and we ate and talked.

I went back to bed, and Susan said she wanted to empty the dishwasher for me, and she came into the bedroom to show me anything she couldn't figure out the place for. It feels so good to have a friend who realizes how these simple things are sometimes too much for me, although I still have a hard time sometimes accepting how hard these simple-sounding things can be. When I'm as short of breath as I am today, it feels, I suppose, the way a normal person would feel at the end of a really hard workout.

Tomorrow Joan from BU (, where I used to work, is coming to do a taped interview about the history and philosophy of the psychiatric survivor movement. Originally, she was trying to do it as video, but the logistics didn't work out. I really love talking about this stuff and functioning as a person who has a life, rather than an invalid. During the interview with the Globe reporter, I was able to make some analogies between the hospice model and what I believe would be the elements of a good and helpful mental health system--one which put the patient's self-defined needs at the center and provided services that were supportive and user-directed.

Maybe tomorrow I'll feel a little stronger.

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