Category Archives: Meditation

A New Mantra

The writers Jessica Lahey and KJ Dell’Antonia have a podcast called #AmWriting. Their tagline: Keep Your Butt in the Chair and Your Head in the Game. The good news is, I’m constantly halfway there. I certainly can’t complain that it’s too difficult to sit down. So the problem must be with my head. I’m so tired lately; I’ve been napping on the breathing machine for at least two hours a day. I don’t really mind this, time slows down with Scarlett at camp and Rob at work. There is much to think about, but little to do, mainly because I can’t do much of anything.

Things are getting harder. My arms are weak, my shoulders and elbows ache in the night, and I am getting tiny pressure sores on my hands, although those are healing since we stopped placing them on top of a pillow that was clearly made with not only bird feathers, but also beaks and bones. Most uncomfortable pillow ever, and my only excuse for not telling Rob about it sooner is the pharmacy that I stuff into my body before bed each night. #toohightocare

In the silence of my day, I reach for clarity. I strive for kindness and wish for peace. It’s become something of a mantra. Much more normal than some of my past mantras. For a while when I lived in Manhattan, the best way to fall asleep at night was to think of the name of the French politician Segolene Royal over and over again. My mind heard it as a mother’s whispered lullaby, and I passed out easily. I have no idea why her name brought me such serenity. It doesn’t work anymore. Read More>

I Want You To Know

Hi. It’s ALS Awareness month, and to commemorate the occasion, I thought I would share some things I’d like you to know:

1. ALS progression differs from person to person. Some people progress so quickly that they are gone within months. Others live for decades with the disease. My own progression is somewhere in the middle. The latest change is in my right arm, which has been very weak for a while. But now it’s not strong enough to get back on the armrest of my wheelchair if I move it off to do something crazy like read a book on my iPad. That means that I have to constantly ask for help moving it back to the armrest so that I can adjust the position of the wheelchair or drive it. It’s one more hit to my independence, but with this disease the hits just keep on coming. It’s kind of like The Beatles, only bad. Unless you don’t like the Beatles, in which case I guess it’s exactly like The Beatles.

2. I’ve been living with ALS for six years, even though for one of those years I didn’t know it. Normally I have a pretty good imagination, but I find it hard to picture what my life would be like if I had never gotten sick.

3. ALS means that it’s very hard to live normally, but I try to do it anyway. Yesterday, I wore bright red lipstick and met friends at an art gallery downtown. I couldn’t see the pieces on the second floor, because there was no elevator. My friend Mary fed me at a table intimately set for 12, surrounded by colorful canvases and glossy sculptures. One painting just had the big word YES in silver glitter. The whole thing made my day. ALS does limit me, but not as much as you might think. Read More>

Good Fortune

Scarlett came home from school recently with two fortune cookies to celebrate the Chinese new year. The first one said “The best times of your life are still ahead.” For her, at age almost-seven, this is of course true. But it made me wonder, at what point do you get to the place in your life where it isn’t true anymore? I am probably there myself. Although I still have good times to look forward to, I think it’s safe to say the best times of my life are actually behind me. Which is something I didn’t expect to be saying at the age of 38.

The best times of my life were probably when Scarlett was young and I was still mobile. When I thought I had years and years ahead of me to experience all that life offered to an able bodied, active, and adventurous person. The best times of my life should still be ahead of me, but they aren’t, because I can’t move and I am no longer an independent woman.

Scarlett and Rob are skiing in Lake Tahoe for four days. Read More>