When my daughter Rachel was 13, she suffered a seemingly simple injury that led to an outbreak of inexplicable, debilitating, body-wide pain. This left her bedridden and needing a wheelchair.

Refusing to believe doctors who claimed either that she was “faking it” or that nothing could be done, our family searched for answers until we at last found the underlying cause—unrecognized chronic Lyme disease and co-infections.

We were lucky enough to find a knowledgeable Lyme doctor within two hours of our home and we started on the long hard slog to getting her better. But we soon found that medical treatment was only part of what our family needed.

There were so many other needs: how to keep Rachel from spiraling into depression, how to continue her education when she was too sick to attend school, finding out what foods supported the healing process best—and which of those she was willing to eat.

As it turns out, one of the most helpful therapies Rachel undertook was something she figured out on her own. Throughout those dark days, she recorded her daily experiences in a journal. It chronicled the bad—her anger at the doctors who didn’t believe her, her despair at ever getting past the pain. It also recorded good times with friends—lip-synching to Hannah Montana songs, visiting the beach to try out a beach wheelchair (yes, those are a thing.) That journal became a lifeline for her, and in my view, was as important as the many different treatments she went through.

In time, Rachel’s health improved—she left the wheelchair behind, graduated from high school and college, and embarked on a career and marriage. For many years, she avoided even looking at the journal, not wanting to revisit those traumatic times.

But then, she decided to share the story with others, and the two of us collaborated on Finding Resilience: A Teen’s Journey Through Lyme Disease. The main narration is based on the journal, interspersed with additional passages by me, giving the mother’s perspective of what was going on.

Capturing the right voice

In the months since publication, we’ve garnered a lot of positive feedback. Here’s one of my favorite reviews, by a judge from the Benjamin Franklin Award competition:

Finding Resilience is a wonderfully written book (by both mother and daughter) that chronicles a teenager’s struggle with both Lyme disease and the medical establishment too unwilling to consider the—at the time—difficult diagnosis. What makes this book so strong is the voice. It’s often difficult for an adult to capture the right voice when writing about earlier experiences, but Rachel Leland does it expertly. At no time did I waver in believing that a teenager was talking to me in real time, as a teenager. This is hard—exceptionally hard—to do well…The mother’s voice, too, is appropriate throughout. All of this worked so effectively that I found myself as a reader on the same emotional rollercoaster they were on.

That’s exactly what we were going for—the shared perspective of a teenager and her mom on this hideous disease and what it takes to get through it. We hope you’ll find it informative and inspiring. Click here for more info about the book.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.