Fighting a Chronic, Terminal Disease

By Laura Edwards

horseback ridingAn article reprinted from the Washington Post was on the front page of a newspaper lying on the kitchen island at my office this morning. I never read the papers in the kitchen (and I’m in PR), but the headline caught my eye.

“Living with a husband’s chronic illness has a bad effect on his wife’s health,” it said. I set down my water, picked up the paper and scanned the article. My eyes immediately landed on a quote about halfway down the article.

“Terminal illness has an end date. Chronic illness is enduring.”

Yes, that’s true, I thought. But what if the illness you’re fighting is both?

I’ve written a blog and most of the print and electronic communications for Taylor’s Tale since our founding more than seven years ago, not long after my little sister’s diagnosis. Mom never wanted me to use the word “terminal” when writing about Batten disease; she preferred that I say “life-threatening.” She said “terminal” felt cold; sterile; hopeless. She’s right. But right now, that’s how a Batten disease diagnosis feels. That’s how it feels in my chest when I see what it’s done to my sister in eight years.

The life we live afterward doesn’t have to be. Though I’m realistic about my sister’s situation, I believe in what we’re doing even more than I did from day one because of what I’ve learned. And if I had it to do all over again, I’d fight just as hard for Taylor’s life even knowing what I know now. Because I know that someday, soon, “terminal” won’t be an appropriate label for this godforsaken disease.

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