New York, New York
United States
janeLooking for Answers
Nine months after the shock of her young husband's sudden loss of muscle strength in his upper body, Heather Hatlo-Porter still had no clear diagnosis. When I called to ask how she and her husband and year-old son were adjusting to this ongoing uncertainty, her voice was calm and controlled.
"We have to resolve ourselves to the fact there won't be a clear diagnosis," she said. "Brian is in remission and seems to be stabilized, so the doctors are not trying to give us any answers. It's frustrating. But we're trying to adjust to a New Normal."
The couple had tried to mobilize, but the many specialists they consulted could not clearly identify the enemy that had attacked an otherwise robust former athlete at the peak of his young adulthood, age 32. When they demanded answers, the neurologist acknowledged that he could only speculate. It was an autoimmune response to a very traditional mononucleosis-type virus that could have struck any one of us.
"It looked like a flu, but Brian's body had a very adverse reaction to it." (Heather thought that reaction might have been due to stress over conditions in their lives at the time; unrelieved stress lowers the immune system.) Brian' s body started attacking his healthy muscle tissue instead of the virus. Now, after nine months, the virus was gone, the body had stopped attacking itself, and her husband was in a recovery phase. But the nerves in his upper body had been damaged, along with muscle tissue.
"No matter how many bicep curls he does, the nerves can' t strengthen the muscles until the nerves repair themselves," Heather reported without emotion. "They said it could take up to two years. Wherever he is then, that will be it."
Being Heather, a positive-thinking, take-charge person, she was looking on this rather empty prognosis as a glass half full. Her husband was able to work again. As an engineer, his work is not physically demanding. He could lift their baby son again and he had come out of depression, because he was able to focus on something other than his illness. And there was some evidence of nerve repair already.
But Heather remains the hyper-vigilant caregiver. Because they have no clear diagnosis or treatment, every time Brian starts to get a temperature, they both become feverish with fear. "We panic, 'Oh, no! it's coming back, it's going to happen again, he's going to start falling apart,'" says Heather, "because we don't know what 'it' is."
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