This morning’s update is that Mom seems less perky today than yesterday, and that she can’t even raise her arm anymore. Lee seems to think she is fading, but slowly; slower than we might have expected. She’s so strong. Have I mentioned that before the ALS, she and Lee had run at least twelve marathons each over the years, had traveled to Indonesia, Alaska, Africa, had climbed Mt. Kilimanjaro? Have I mentioned yet that it angers me that she somehow deserves it less than some couch potato? Nobody deserves this, I know. Still.

It’s uncomfortable being here and waiting for things to get worse. Two years ago, shortly after her diagnosis, I went home for six months, intending to help take care of her. This was before I got sober. It was a truly dark period in my life, drinking alone in my little studio apartment near their house, trying to pull it together enough when she needed me. As it turned out, they didn’t really need my assistance much. Between Lee’s training as a nurse, and their large circle of devoted friends, her care was more than covered. And eventually she told me, after I brought it up, that she wanted me to go back to San Francisco and live my life.

And that was only the beginning. Between then and now I got sober, ended the five+ year relationship, moved out, started a new job, and tested HIV-positive. Have I said here yet that I have not told anyone in my family about the last? In light of my mother’s struggle, and the fact that I am so healthy, it seems inappropriate to raise the issue. I talked to my brother last night, and he told me that he is splitting with his girlfriend who I met over Christmas. As he told me last night, the writing had been on the wall, but he didn’t want to bring it up for the same reasons I’ve kept my silence about the HIV.

The absolute hardest part of her deterioration has been the loss of a family confidante, the woman who I thought of immediately whenever I got good news or enjoyed some success. I lost that almost two years ago when the dementia began, and yet she is still here with us, alive yet profoundly different. In a selfish way, I have struggled so, trying to accept the loss of my mother while acknowledging that she is still alive. I haven’t been the best son all the time. I let weeks go by without calling, because the confidante is gone, and because her inability to communicate made one-sided phone calls painful.

However, in searching within, I know that by now I have told her everything I’ve wanted to. And all the words distill into an essence that spells out “I love you.” There isn’t much more to say beyond that.

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