“The Spidery Web”: Trick or Treating with Batten Disease

Autumn hasn’t yet arrived to paint my hometown of Charlotte with its palette of brilliant crimson, gold and flame. But when I went for a solo run this afternoon, kids played in their Halloween costumes in cul-de-sacs, and the smokey sweetness of fall hung in the air. Pumpkins destined to become jack-o’-lanterns dotted every other front porch.

My little sister, Taylor, is a girly girl to the core, so a holiday based on a big game of dress-up always suited her just fine. She didn’t even much care about eating the candy. But a couple of her costumes “required” eye makeup, blush and a touch of lip gloss. My sister once decorated herself and the cream-colored rug in our parents’ dressing area while sampling all of our mom’s cosmetic products. She couldn’t wait to wear makeup, even as a toddler, and Halloween gave her an excuse to wear lipstick way before she turned 16.

Then, of course, Batten disease crashed into our lives in 2006, the year Taylor turned eight. It didn’t so much crash into my sister’s life as slide into it, because while all of us absorbed our new, terrible knowledge about the progression and ultimate outcome of a disease we’d just met and figured out how to fight it, Taylor remained an oblivious third grader with some night vision loss and learning difficulties.

As the years passed, Taylor, too, got tangled in the spidery web that is Batten disease. In a cruel, ironic twist, what used to be one of her favorite nights of the year became a twist of the knife in all of our backs, including hers. As my sister’s vision and mobility worsened with time, navigating the neighborhood streets during trick-or-treating became more and more difficult. More painful than that, though, was watching Taylor stand in the open doorways of neighbors who didn’t know about her illness and waited for her to reach out and take candy from the bowl. When she stood there motionless– because she couldn’t see the bowl– my husband, my dad or I reached out in silence to take a few pieces of candy and drop them into Taylor’s trick-or-treat bag.

The only thing that stopped me from losing it in those moments was the sight of my sister on all of those front porches, blind and quickly losing her footing on a slippery slope above the deep, dark chasm of Batten disease, nevertheless standing stick-straight, her shoulders back and her head held high, wearing her Halloween costume like a champ.