Lyme and other tick-borne diseases can change the trajectory of your life, but this perspective is what you need to keep moving forward.
I’m a natural planner. As a child, I’d line up my stuffed animals and plan school lessons for them. As I got older, friends gently teased me for keeping well-organized folders and binders. I actually enjoy setting my calendar, meeting deadlines, and checking things off my to-do list. I feel most comfortable when I know what to expect, and when I have things in order. My mother jokes that I like to have all my ducks in a row.
I’ve also always been a high achiever. I worked hard to get into the college of my dreams, and double-majored while I was there. Upon graduation, I had a plan: I was going to fulfill a lifelong dream of ski instructing in Colorado for a year. Then, I was going to go to graduate school, start my professional career, and get married and have children.
What I didn’t know was that as I was making all these best-laid plans, tick-borne diseases were quietly simmering in my body. They, too, had plans. After I got a serious case of mononucleosis, these underlying infections of Lyme disease, babesiosis, and ehrlichiosis boiled over, leaving me bedridden. I couldn’t walk to the mailbox, let alone ski instruct. Barely able to comprehend a paragraph in a simple article, graduate school was out of the question. If I couldn’t take care of myself, I certainly couldn’t consider dating or tending to a family.
Suddenly, my ducks were not in a row; they were scattered all over the pond.
In addition to wrestling physical symptoms like fever, body aches, migraines, and burning extremities, I was awash in anxiety. My life had been on the fast track to what I viewed as “success.” Now, I felt derailed. On intravenous antibiotics and battling Jarisch-Herxheimer reactions, I didn’t know when I could expect to get better. I could rest and take all my medication, but I couldn’t organize the infections out of my body. I couldn’t plan to get rid of illness, and that deeply unsettled me.
When everyone around you seems to be “on track”—doing what they “should” do, at the time in life that they are “supposed” to be doing those things—it’s natural to feel isolated, scared, and even a little jealous. Here’s what I’ve learned, though: lots of people get “off track,” for lots of different reasons. For some, it’s due to physical or mental illness. For others it’s because of divorce, or the sudden loss of a family member. The trajectory of anyone’s life can change in an instant. In that truth, we are not alone at all.
Here’s what else I’ve learned: just because the trajectory of your life changes doesn’t mean life is over. In fact, it’s just beginning, only in a new way. It took too long for me to recognize and accept this notion, and I lost precious time worrying about getting back to my old plan instead of figuring out ways to move forward on a new track that involved illness. I’ve learned that words like “should,” “supposed to,” and “on track” are a matter of perspective. We all have ideas of what we “should” do based on societal or familial expectations. But not being able to meet those expectations, for whatever reason, doesn’t mean you can’t be “successful.” It just means you have your own definition of success, and your own path towards achieving it.
I came to this realization one night during the height of a relapse after two years of intense treatment for tick-borne illnesses. Sobbing to a friend on the phone, I lamented, in a state of panic, that I was now even further behind and would never get back on track. Instead of reassuring me that I would, this friend leveled with me. “You aren’t going to go back to the highly active life you once had in Colorado,” she said. “You aren’t going to be staying up late nights and skiing hard core days. But that doesn’t mean you can’t have a happy life.”
Her words stopped me short. I realized that if I continued to define an “on track” life in the way I always had, I would set myself up for failure. But if I allowed that I could define happiness in new ways, there were endless possibilities. Of course, it took time and treatment to be well enough to achieve any of them. But after that phone call, I relaxed and let go of my tunnel vision. I stopped putting a timeline on wellness, or on the trajectory of my life. That shift in perspective enabled healing in a way that was otherwise blocked.
Today I am living a happy and fulfilling life. I never became a ski instructor in Colorado, but I have taught friends to ski in Massachusetts, and I appreciate the privilege of being out on a mountain more than I ever could have before I got sick. I did go to graduate school, a decade later than I thought I would, but at a time that worked well for me. I never could have imagined that I would end up writing about Lyme disease, using my story to help other patients, and teaching creative writing. But I think I am doing exactly what I am meant to do, and none of that would have happened if I hadn’t been thrown “off track” in the first place.
Other life milestones still haven’t been met, but I believe they will in their own time. I still hope to get married and have a family. Did it happen when I thought it would? No. Did it happen when it did for most of my friends? No. But that doesn’t mean it won’t happen at all. Perhaps the most important lesson I’ve learned is, you don’t need to have your ducks in a row to enjoy the swim across the pond—at your own pace.
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Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir about her medical journey is forthcoming. Contact her via email below.