Navigating Lyme Disease: How Homeschooling Helped

Every conversation I ever have with a new friend goes exactly the same way. First, the other person talks about school. Then I will be asked about my school. When I tell them that I’m a homeschooler, and they ask why, I tell them it is because I have Lyme disease. People sometimes think it must be hard or awkward for me to tell people I have Lyme, but it has never been hard because I am never the one who brings it up. It unfailingly always comes up on its own.

I never found a tick on me. The first time I saw a tick was actually seven months ago on the lawn, nearly 10 years after I got sick. The most pronounced of my earliest symptoms were auditory processing problems. Basically, my ears and brain were working, but they weren’t communicating well with each other. This made it hard for me to understand people, particularly my teachers, when I was in school. My perception was that everyone was talking too quietly, or my mind would fill in the blanks. My mom once took me to a neurologist who asked if I simply wasn’t paying attention to anyone, and to test this he told me a simple phrase and asked me to repeat it. I asked him to say it four times before I could fully repeat it. He was convinced. Around that time my energy level also started to diminish.

When I was in third grade, I went to a private Montessori school because it was better able to accommodate my learning needs than the public school had been. A year later, I began to develop what continues to be my main symptom: severe debilitating fatigue. Among the selections on Lyme’s menu of ailments, I also developed headaches, light sensitivity, joint pain, chest pain, heat intolerance, and insomnia. I began missing school, as many as three days a week in fourth grade. In our search for answers to what was wrong with me, a doctor in Massachusetts eventually suggested that my parents look into Lyme Disease. That led us to a pediatric Lyme specialist in Connecticut, as we were unable to find a doctor who had answers in our home state. When we finally had the Lyme diagnosis for my siblings, me, and lastly my mom, my parents looked into our backyard with a dawning realization: “It’s here. It’s always been right here.”

In the beginning, I was able to keep up with school. Then I got worse, unable to attend regularly. My sister introduced me to the concept of homeschooling (she had been doing it for a while) and gave me a book about it called The Teenage Liberation Handbook by Grace Llewellyn. Homeschooling would allow me to set my own pace, and remove the stress of having to keep up with a full school schedule, impossible at that point. Although I feared I’d lose whatever social life I had left, I decided to give it a try.

Four years later, I see it as the best decision I’ve ever made. It was an adjustment at first. After having been isolated and homebound, my re-entry into a new social world was especially jarring. I felt like I had missed some crucial social learning period that everyone else had accomplished with flying colors. Gradually I began to feel more comfortable, although it didn’t happen all at once, and not everyone was as accepting as they could have been. But every step of improvement builds on itself, and going into my fifth year of homeschooling, I’ve never felt happier. Academically, I’m able to set my own pace, and I have the freedom to make my health my top priority. It also helps to know that I have the support of a community that respects me and doesn’t doubt my illness.

Many people don’t understand what homeschooling actually is. I sometimes have to stifle a small aneurysm when someone asks me the typical question: “Oh so your mom teaches you?” My mom doesn’t teach me. I take groups and classes, go to a co-op, have a math tutor, and more. Mom’s job has been to drive me everywhere, and now that I have my license she doesn’t even do that. Many people also think that being a homeschooler means I have no social life, and while I don’t see people as daily as I would if I were in regular school, that assumption is completely false. In homeschooling, I’ve found everything from an ultimate frisbee team, to anime clubs, writing clubs, game nights, monthly dances, and even a prom.

Now that my health is significantly improved, I can recognize that my Lyme journey has brought me some gifts. Someone once told me that when your life changes so irrevocably, the things you’ve lost have a way of coming back to you in the form of strengths. You will have abilities that other people who have not had to endure such trials do not possess. I’m not saying I’m happy I got sick, but what meaning would our suffering have if we couldn’t channel it into something good? For example, when I was too sick to leave the house, I watched a lot of movies. This became a passion, and the free time that Lyme and, later, homeschooling, afforded me allowed me to pursue this interest with full force. Today, it has grown into a strong interest in movie production and filmmaking technique. I am currently teaching two film classes, one at my homeschool co-op focusing on contemporary film, another at my house following U.S. history. I also plan to go to a film school for college.

I am 17 now. Even after 10 years of serious illness, I don’t feel that Lyme robbed me of my life. While it did make things more difficult, it also led to my opening new doors that I would not have found if I had never been challenged by this illness. Perhaps above everything else, I think my experiences have given me a perspective and maturity most kids aren’t allowed at my age, and that people can sense it in me. I believe we all have the potential to take what we lose, and become stronger than before.

This article first appeared in Lyme Times, Winter 2009/2010, Number 58. www.lymedisease.org