Even After Losing the Ability to Eat, My Sister Stayed Strong

Have you ever celebrated Thanksgiving without turkey? Maybe you don’t like the taste of America’s famous game bird, or perhaps it’s just not worth the work. But what is Thanksgiving — a holiday focused on food — to someone who can’t eat?

More than four years after her death, I can’t recall whether my late sister, Taylor, asked for second helpings of Mom’s Thanksgiving turkey. However, I remember her sweet tooth: Taylor loved Chick-fil-A cones, Starbucks black-and-white cookies, and homemade bubble gum ice cream. Like most kids, she also loved pizza. We used to buy pre-made dough, dust the kitchen counters with flour, and decorate the pies with creamy marinara and fistfuls of shredded cheese.

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But the sweet treats and pizza nights stopped soon after Taylor was admitted to the hospital on a late spring day in 2014, when she was 15. During that particular stay, she received a feeding tube. Hours before the procedure, she said, “I’m hungry.” They were the last words she ever said.

Such is the rare cruelty of Batten disease. For the remaining four years of Taylor’s life, she neither ate nor spoke at meals. Even her family sometimes forgot about her in the flow of a conversation. Somehow, these losses hit me harder than others that preceded them, as I wrote on the Taylor’s Tale blog:

“It’s been years since my sister saw a sunrise, and she won’t walk without assistance again. So why is it so hard for me to accept that she’ll never eat another slice of pizza or a piece of birthday cake?”

Still giving thanks, despite Batten disease

If you’re a regular reader, you may remember my Batten Disease News column published around the Thanksgiving holiday in 2020, at the height of the COVID-19 pandemic. If so, you’ve already read this story. You know that at the time of her death, Taylor couldn’t see, walk, speak, or swallow food. You know that I survived my own fight against Batten disease by heeding my sister’s call to focus on the gifts I have, rather than the struggles I’ve faced.

Even so, I’m painfully aware that Taylor’s way is hard. It would be so much easier to feel sorry for myself or pretend this tragedy never happened to our family. To accept that 16 years after my sister’s diagnosis, we still don’t have an approved disease-modifying treatment. To decide that it simply isn’t our fight anymore. To simply walk away. After all, I have a demanding job and a young son and personal goals that have nothing to do with Batten disease. Frequent headaches and spent legs and dark circles under my eyes. Anger boiling beneath my temples. Anguish tearing at my heart.

And yet, even on my worst days, I remember that regardless of what Batten disease did to her body, Taylor’s spirit stayed strong until the very end. I cherish the time she had. I savor the progress that has happened because her story is powerful and people are (mostly) good.

That’s why I’m still giving thanks, despite Batten disease.

Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Batten disease.