After the Shock: Taking Charge

By Gail Sheehy

For Heather Hatlo-Porter, the most fearful part was having no diagnosis. One day, her 32-year-old husband Brian was a big, strong, take-charge engineer who loved to hoist their one-year-old son up on his broad shoulders. Days later, Brian's arms and hands were tingling, his muscles shriveling, his heft falling away at a rate of several pounds a day—what was happening?

The shock threw Brian into denial. Heather assumed command. Being young, only 30, and a type-A super-organizer, she did many things right. I call her a "model of resilience." "I was pushy," she admits, but without apology.

Like many of us, Heather blocked out any idea that she was a caregiver. "It was overwhelming to think of myself as a caregiver for a dependent adult," she says, "because, to me, that meant this was a lifelong situation. To accept that, early on, would have been unbearable."

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