I recently went to two starkly different doctors offices. The first was my regular ALS clinic here in San Francisco, where I saw myriad specialists, who poked at me and tested things like my breathing and my patience. I got a mostly good report, along with prescriptions for a new wheelchair and braces to wear during the day that will keep my ankles from turning in and looking like they’re broken, which is sort of a horrifying way for them to look. They don’t hurt. Rob was told that he has to massage my feet twice a day, and I have no idea how we’re going to fit that into our busy morning of trying to encourage Scarlett to put clothes on her body and maybe even eat food before she goes off to summer camp. In fact, I’m 100% sure there will be no morning foot massages. So maybe we’ll just aim for once a day.

My feet are so swollen they look like fat little baby feet, or hobbit feet without hair. I guess this is just what you can count on when you sit in a wheelchair all day. The new chair that I’m getting will have fancy things like an elevated leg rest, which should help. I made it through the whole clinic appointment without crying, even when the doctor suggested that I think about getting a feeding tube NOW, because by the time I really need it, it will probably be too late, and even when he then told me and Rob that filling out an advance directive* together would be “cool.” I mean, maybe it will, but we’ll be the deciders of that. We left the office and went to get salads. I managed to consume mine without the use of a feeding tube, BECAUSE I CAN STILL EAT NORMALLY. I’m sure doctors are supposed to prepare you for the future with this disease, but I’m on the “take it as it comes” plan, and the only thing that I wanted heading my way after talking to him was a very large glass of wine.

My second appointment was with a Tibetan healer who I’ve been seeing since October. He has an office in Sausalito, decorated with photos of him with the Dalai Lama, and he’s a very calming presence, even when he says things about my illness like “This is crazy.” He has prescribed something for me called The Precious Pill. It’s a combo of herbs and gems and will attempt to detoxify my ailing body. Here’s what I found when I looked up The Precious Pill online:

“For a period of three to seven days after taking the medicine, avoid fish, pork, egg, sour alcohols, onion, garlic, wild garlic, putrid food items, hot spices, strenuous lifestyle, rigorous exercises and sports, daytime sleep, cold bath and sex.”

So after seven days, I’ll get right back to eating putrid food items, which is great.

This Western/Eastern approach to things helps me to feel that I’m keeping an open mind about everything. I meditate, I eat well, I take vitamins and try to get sleep (though I’m lately being foiled on that last one by the 4-year-old in the next room, who has very loud dreams and who sometimes just appears in our bed as if she were beamed in directly.) Still, my ALS progresses. But some days are better than others. And who knows? Maybe something I’m doing will help. If not, at least I can look forward to filling out that advance directive with Rob.

*A living will that allows you to document your wishes concerning medical treatments at the end of life. “Cool” is not the word that comes to mind.

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