Friday, December 03, 2010

Laura Hillenbrand featured in Elle. Her writing and her struggle with CFS/ME

What an inspiring woman, both in her writing and in the challenges of her illness! She truly has become our spokesperson through her successes.

An excerpt from the Elle interview with Hillenbrand. Read it all here:http://www.elle.com/Beauty/Health-Fitness/Chronic-Fatigue-Syndrome-A-Celebrated-Author-s-Untold-Tale
(An ad from Elle will appear for about 10 seconds before the link comes up)

Hillenbrand has chronic fatigue syndrome (CFS), a cruel medical condition with an unfortunate name that fails utterly to do ­justice to an often debilitating array of so far unexplained symptoms, including muscle pain, unrelenting exhaustion, digestive problems, environmental hypersensitivity, occasional fevers, and that aforementioned vertigo. “Laura is on the more severe end of the spectrum,” says Fred Gill, MD, a noted specialist in ­infectious disease at the National Institutes of Health, who treated her for many years. “It’s very serious. It stops people’s lives.”


“It’s so frightening and hellish and disorienting,” Hillenbrand says, “and on top of that there’s this layer of gripping fear, because I don’t know what will happen next, if it will get worse.” She’s sitting at her dining-room table, one foot folded under her knee, looking like the picture of health, pretty and cheerful, in a black blouse, metal-rimmed glasses, and hoop earrings.


It’s early afternoon, her best time of day. Since she first came down with the disease in 1987, the severity of her symptoms has shifted without warning or explanation, and the ferocious relapse that began three years ago, as she was deep into the research phase of her ­second book, seems gradually to be abating. Over the years, Hillenbrand has often gone for long stretches without so much as leaving her room, but she’s feeling strong enough lately to receive a visitor. Aside from Flanagan, a soft-spoken professor of ­political philosophy, who passes through from time to time; her new doctor, who by necessity does house calls; and one social visit a few weeks back, I’m the only person she’s seen in months.


“When I was really dizzy, I was almost screaming with fear because it’s so thoroughly disorienting, but it’s not too bad right now,” she says, smiling. “Things are moving in a liquid kind of way, and the floor is slanting and it looks like a really bad computer-generated image. Nothing looks real.”
It’s only then that I realize Hillenbrand has ­remained perfectly still—keeping her hands folded in her lap—since we sat down an hour before. Suddenly imagining how my own gestures must look to her, I try not to make any abrupt movements.

2 comments:

cinderkeys said...

I skimmed this article earlier today, but only just now noticed this:

Over the years, Hillenbrand has often gone for long stretches without so much as leaving her room, but she’s feeling strong enough lately to receive a visitor. Aside from Flanagan, a soft-spoken professor of political philosophy, who passes through from time to time; her new doctor, who by necessity does house calls; and one social visit a few weeks back, I’m the only person she’s seen in months.

Holy cow. She doesn't have anyone besides her husband around? No paid caregivers when she's at work? How does she feed herself with symptoms that bad?!

Pris said...

A good question . I read in an article after seabiscuit that she kept a mini fridge in the bedroom and a microwave for heating when she couldn't get to the kitchen. With the money now, I wonder if she has some help, but as you and I both know, having a noisy helper around can be as tiring as making do with a 'mini kitchen' in your bedroom.

She really does have a tough version of this illness. I know I've been mostly housebound, too, but my husband can drive me to doctors' visits and I have times when I can be driven over to the ocean three miles away.

The gal who cleans for me asked me yesterday if my husband ever took me out 'on dates'..she knew a good place to eat dinner. I can't even think of doing that due both to energy and the swimminess I get in noisy places or places filled with 'stuff' or lots of people.