Wednesday, February 29, 2012


"Are you stylish?" asks my daughter the other day. She loves the word, even though she's shy about actually dressing up.

I was never very stylish, although I used to try. Then I got pregnant and had two kids. My body expanded, then contracted, expanded, contracted. In different ways. It's also hard to feel stylish when your clothes are often splattered with baby food, body fluids, or kids' paints. When my daughter turned three, I was hungry to change my look. I started wearing skirts, every so often. I bought some shiny ankle-length boots and I wore them two or three times. Then I had the stroke.

"I wish I could be stylish," I grumble. "It's hard to be stylish when I have to wear these stupid Velcro sneakers and my brace every day because of the stroke."

"Don't feel bad, Mommy," says my daughter, with a sympathetic pout. "It's not your fault that your brain shrank."

Wednesday, February 15, 2012

Theme and Variations

February 2nd was my second stroke anniversary. I wanted to do an update about my progress. But at breakfast I read a story on the front page of the Boston Globe, and I knew I had to write about it. I had a hard time organizing the threads of different stories I wanted to include. So instead, I present you a theme and variations, for many hands:

1: The main story is about a man, Richard Mangino, who had lost all four limbs from a bloodstream infection about 10 years ago. For many years he painted with his prosthetic hands. About four months ago, he got a double hand transplant. Now he was able to pick up a milk carton with his hands. Like me, he is also starting to play piano again, if imperfectly.

2: The original owner of the hands was a man who, like me, had a cerebral hemorrhage with no warning. He had two kids, ages 5 and 11. He died the day before the day would have turned 44. His wife, Jodi Lloyd, had made the wrenching decision to donate his hands.

3: When I read the article, I remembered that about a year ago, I hadn't seen much progress with my right hand for a few months. One day I had gone down to the basement, and wanted to bring up something to the kitchen. On the way up, held on the railing with my left hand, and clutched a small can with my right. I dropped it, as usual. I sat down on the steps and start to wail.

"I can't do anything!" I sobbed when Neal came running to see what was wrong. I was exhausted with trying, and failing. Later that day when I had calmed down, I told him, "Sometimes I just want to cut off my right hand, and it be done with it!"

4: Often when Neal and I watch TV together and our hands are intertwined, I still get confused about which hand is mine. Neal is amused when I try to discreetly use my left hand to feel the pile of hands to figure out which one is mine, like a ball of yarn that I need to untangle.

5: Jodi Lloyd—who gave permission to donate her husband’s hands—visited Mangino after the transplant. From the Boston Globe: Lloyd said she was “very nervous’’ and didn’t look at his hands at first. But Mangino spoke to her about grief and put her at ease. He asked if she wanted to touch his hands, and she did.

“They definitely felt like my husband’s hands, and I knew they were my husband’s hands because I recognized them,’’ she said. “It was bittersweet. We had been together 23 years. When he was in the hospital, all I did was hold his hands.’’
6: At home I use special utensils to help me grip my fork with my right hand. Last week I used my right hand to hold a regular fork in a restaurant for the first time. It did slip a fair amount. Neal often reminds me that many of my fellow stroke survivors have it much worse. “Some people would kill for that hand,” he told me a few weeks ago, pointing to my right hand. After a pause, we laughed.

7: And finally, this paragraph from the Boston Globe: When his son pointed out that he was walking with his forearms pointed straight out, Mangino studied people walking at the mall, swinging their arms at their sides. “You forget these things,’’ he said. “If someone gave you wings, you’d say ‘what do you do with these?’ ’’

Here's the full story from the Boston Globe, by Liz Kowalczyk

Richard Mangino's website, including some of his art: