Reprinted with the kind permission of Jennifer Crystal and Tick Borne Disease Alliance/Global Lyme Alliance
.By Jennifer Crystal
As a former camp counselor and teacher, it’s no secret I love spending time with kids. I have taught them to read, write, ski, and waterski, and they have taught me to stay young at heart. These days, I love playing with my friends’ children, and sometimes joke that the reason I get along so well with them is because we’re on the same schedule—we both need regular feedings and naps, and when we don’t get them, we melt down.
I make this quip in jest, but there is a serious undertone to it that I imagine a lot of Lyme patients can relate to. Though many of us are adults who were once fully functioning and now are in various stages of regaining that independence, our needs mirror those of small children. When we need something, we need it now. This is not because we’ve become whiny or demanding in our sickly state. It’s because we, like little kids, don’t have the capacity to hold out or hold on when we are hungry, dehydrated or fatigued. We don’t have the reserves that healthy people rely on to push through a little discomfort. Like those of developing children, our bodies and brains need regular food and rest, and we must take care of those needs as soon as alarm bells go off.
And those alarm bells go off frequently and regularly. A healthy person who hasn’t eaten all day might eventually hit a point of crisis. A Lymie, on the other hand, could never “forget” to eat. We eat as soon as we wake up in order to take our breakfast pills. Doing so on an empty stomach can cause gastrointestinal issues and lightheadedness so severe that we wouldn’t dream of skipping a meal.
Despite eating healthy meals at regular intervals, my blood sugar sometimes drops without warning. Those of us wrestling with the tick borne parasite babesia often suffer from hypoglycemia. I always carry a snack with me, which means I don’t travel light—even to the post office.
My so called “hand bag” is also big enough to hold a large water bottle, since my illnesses, and probably the medications themselves, make me incredibly thirsty. My friends joke that my water bottle is like my security blanket. If I forget it, I may not have a screaming tantrum, but on the inside, my body indeed has a fit. For people whose bodies are busy fighting illness, dehydration can set in quite quickly. For me, an hour without water means hours of migraines, achiness, and increased fatigue.
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Having exaggerated basic needs can be especially challenging when traveling. This past weekend, I went to Cape Cod (or as the locals say, “down the Cape”). I was visiting friends who are very familiar with and understanding of my situation, and I knew it wasn’t going to be a problem for me to take an afternoon nap or go to bed early. My friends didn’t comment on the size of my bags, and didn’t flinch when I pulled out a huge sack of medication bottles on Sunday morning and sat down to fill my weekly pill box.
Still, it was frustrating for me to have such high maintenance needs when I was otherwise supposed to be on vacation. I wanted to go with the flow, to eat dinner whenever we got around to it, to stroll into town and not think about when or how I would get back to rest. But this flexibilty simply isn’t an option for Lymies, and that can make us feel like children living in compromised adult bodies.
Some of my friends’ kids even have a hard time figuring out which category I belong in. One recently asked me, “Will your Mommy and Daddy be home when you take your nap?” In his world, as in most people’s, adults don’t take naps.
It can be hard to reconcile this disconnect between age and needs. I worry that people won’t respect me, or will get annoyed with me when I have to stop to eat a meal, or buy a bottle of water, or rest on a bench. I worry that I seem self-absorbed.
On the flip side, being a sick adult with child-like needs has allowed me to become a kid again in the best kind of way. Getting a second chance at life gives you a new found appreciation for the little things, and you begin to look at the world with child-like awe and wonder. Being able to swim, canoe, and sail, when I thought I never would get out of bed again, makes me appreciate those opportunities in ways I couldn’t have if I had just continued on the path of a healthy adult. I am as excited as my friends’ children when we splash in Walden Pond or play hide-and-seek in the backyard; like them, I am, in a way, looking at life anew. I may be high maintenance, and I may not live the life of a “normal” adult, but I am still young at heart, and that’s part of my identity I’m proud to fully embrace.
About the author: Jennifer Crystal specializes in travel writing and narrative medicine. Her work has appeared in The Boston Globe, (T)here: Musings on Returnings (Martlet & Mare, 2014), Spry Literary Journal, Transitions Abroad, Abroad View, Wilton Magazine, Middlebury Magazine, and wbur.org (Boston’s NPR station). Her travel memoir, Et Voila, is available on Amazon. Currently, she is working on a memoir about living with chronic tick-borne disease. Visit her at www.jennifercrystal.com