Thursday, June 22, 2006

"I used to wish I could be in a healthy body for just one day, just to know what it feels like," she tells me. She is sitting crosslegged on the coffee shop couch, looking, in fact, healthy.

She is one of the most intelligent people I know. Her convictions are strong. She lives and speaks according to what she believes. She loves coffee, knitting, Emily Dickenson, a certain young doctor, her cat. She is passionate and courageous, although courageous may not be a word she wants employed to describe her. It is to close to "brave" -- as in "you're so brave," which she hears too often. It seems, she says, to work toward defining her according to her chronic illness(es).

She was diagnosed with cancer at age 3 months. She has numerous health-related complications. But it is not the anemia, the fatigue, the vertigo, the allergies, that are the most disturbing, the most complicating factors of her life. It is the day-to-day web of emotions and relationships as people are ignorant, unsypathetic, harsh, unforgiving of the limitations the impede her body. Because they can't see them, they assume that they do not exist.

This is driven home as she begins a class on issues of access to education and other basic services and human needs. Much of this class focuses on the American with Disabilities Act, with fabulous readings such as Susan Wendell's "Toward a Feminist Theory of Disability" excerpted from (I believe) her The Rejected Body. Yet when my friend asks for permission to write her papers before the course begins, in expectation of those unsuspected moments when her body simply will not comply with her will, her instructor tells her that he does not feel comfortable letting her do so. He instructs her to get permission from the Dean, implying that she is seeking special treatment rather than the rights granted her by the ADA.

And then there is my mom, who today is celebrating her 29th birthday for the 27th time. How often, with her 15 years of Chronic Fatigue, has she heard "You look so healthy!" as people ask about her health and assume that if she is out in public she must be "cured." They do not know how she has rested a full day or week to make it to an event, how she has worked on her appearance.

My mom is adventurous. She is funny and she is fun. She is strong. She is curious. She wants to know about Seneca, about the Civil War, about herbs, about most things. She likes ideas. She writes to senators. She is a reader. She is a believer in Christ and has one of the quietest, strongest faiths that I know. She is a prayer warrior. She is a thinker and she is real.

Yet 15 years ago the doctors at Mayo Clinic told her, as they have told numerous others, that she was crazy -- that the scratchy throat, the inability to speak, the inability to stand without dizziness, the constant, chronic, painful, debilitating fatigue -- was all in her head.

And over 25 years since Chronic Fatigue Syndrome first made its appearance, the Center for Disease Control only last month concurred that, indeed, Chronic Fatigue Syndrome is a real disease. Yet even so, people will continue to say, "But you look so healthy," oblivious to the fact that she is leaning her head on her hands and that her eyes are crying "let me go so I may rest." And they will continue to think that "Chronic Fatigue" means that she is a late sleeper, too lazy to get out of bed in the morning. or that she is exaggerating because, boy, they're "tired" too.

This post is in honor of my mom's birthday and my friend. Thank you, you two, for continuing to fight and live and be yourselves, and to define yourselves according to who you are, and not what others -- and your conditions -- attempt to define you.


Some "invisible illness" websites:

CFIDS Association of America
National Fibromyalgia Association
Celiac Sprue Association
National Digestive Diseases Information Clearinghouse
Crohn's and Colitis Foundation of America

Some real-life stories:

"What Price Glory?"
An interview between Anna Simpkins and Seabiscuit author Laura Hildenbrandt, who has CFIDS
An awesome site written by and about women with chronic illnesses of all varieties.
Learning Sickness: A Year with Crohn's Disease by James Lang (Link is to the blurb)
Diabetes Wise has two especially compelling posts on diabetes, illness, and identity. Check out "This Post is Brought to you by the Letter E" and "A Damn Big Hole".

I would love to extend this very short bibliography. If you have helpful or related sites, please send them my way!


art-sweet said...

Great post, Nic. Thanks.

Caro said...


I'm spending the afternoon reading back though the archives of a number of blogs and trying very hard, in light of my recent experience, not to dwell on disease and identity, on whether I am changed again, more sick or just the same.

So it seems appropriate that I should find this post this afternoon. It is an awesome tribute and so well written that it drew me right in from the first sentence.

And then, at the bottom I see that you have placed a link to two of my own posts, and described them as 'compelling'.

Thank You.

This means a lot to me. I studied some of these issues as an undergraduate, but talking about them in relation to myself, my own conditions, is very different. To know that my words were effective in communicating something is so good to know.

And this is exactly what I needed to read this afternoon, to remind myself that no matter what, I am still me.