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The Remembrance Project: Holly Ladd03:06
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Holly Ladd died on June 23 in Newton. She was 59 years old. Three weeks after her ALS diagnosis, she had already reviewed the prognostic literature, and, in her lawyerly fashion, constructed her advanced directive with clear limits. Then, over the next two years — the happiest of her life, in some ways — she pushed the limits back again and again.

Life before the diagnosis was full of high-power activism: heading the Boston Fair Housing Commission, helping to found the Boston AIDS Consortium, traveling through Africa teaching health providers to use state-of-the-art technology. She volunteered for the local Red Cross, running out to scenes of fires and floods. There was an emotional toughness (“you could hear her eyes roll,” said a friend), and a certainty that she knew many, if not all, answers. She kept her heart apart for her personal life: her partner, their son, a few nephews and their children, a few close friends, and her beagle-basset hound Walker, who had separation anxiety.

Life after the diagnosis was involuntary adjustment and softening. First, she couldn’t walk. “I don’t want to live in a wheelchair,” she said — but did. Then she couldn’t use her hands. “If I can’t feed myself, I don’t want to live,” she said — but did. With each loss, her capacities shrunk, but her desire for life grew, and she expanded what she was willing to lose. She who had roamed Africa couldn’t go to the bathroom alone anymore.

Gestures of generosity towards Holly, the ones that arrive with acute illness and recede as illness becomes chronic, did not recede. Over time, they only increased. More and more people visited, and more often. Her nephew installed ramps in his house so she could come for Christmas dinner. Her son moved back to town so he could drop by every morning at 8 and lift her out of bed. Kids sat on her moving bed, charmed, and learned to use her eye-gazer computer. The source of her imprisonment was the source of their magic.

All the unremitting love astonished her. Before she lost the ability to speak, she recorded hundreds of messages that she could pull up on the computer with her eyes. Some were full of gratitude, some bantering, some about golf (“are you still hitting them wild to the right?” her voice would ask). There were also commands for Walker the dog, whose separation anxiety had been fully treated by her constant presence.

Blinking once or twice to clarify, she kept pushing back the directives of when she wished to die. This amazed those around her. But she was bowled over by love, absolutely bowled over, and didn’t want to miss a thing.


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