by Susan Pogorzelski
#MyLymeLife
I used to revel in the thought of living in solitude like Thoreau at Walden Pond. A cabin nestled between pines, a farm sprawling across a dozen acres, a cottage by the beach—I imagined these places bringing peace and comfort and a quietude that is rare these days, among the go-go-go rush for something—anything—so long as it looks like living.
But certain kinds of silence breed loneliness, and loneliness will drive you mad.
Right now, my life is divided into before and after, then and now. Before I was sick and after. Then, when I fought this disease for three years, and now, when it’s already been a full year since I relapsed after only a few months in remission. Before, I got through it with the help of family and friends and my pets, a job to return to, and a dream to pursue. Now, while I’m still so grateful to have my family, my friends, and the unwavering companionship of my dogs—please don’t ever mistake these thoughts for ingratitude—I’m having trouble coping with the isolation and loneliness that stems from living with Lyme disease.
I can’t do much more right now than bide my time until the fatigue sets back in and I have to close my eyes. When I write, I’m able to put down a few sentences at a time before the words get muddled in my mind and the fog becomes too thick. Short walks let me bask in the fading summer sun, but it isn’t long before the pain in my legs make me grow weak, and I have to rest again.
I hear kids’ sneakers slapping against the pavement as they run up and down the alleyway behind my house, hear women chatting with giggles in their voices as they power-walk past my open windows, hear my neighbors on the porch in a symphonic blend of togetherness, and I want to be a part of it—I want to be a part of the world. Outside life slips through the cracks beneath the door, and it only takes a second before I realize how lonely I am within.
Social media gives me an outlet—a chance to catch up and be with friends when I’m limited in where I can go—but I see pictures of vacations and posts about projects they’re working on and where they’re going, and I want to cry.
Because I can’t go anywhere but here, and here doesn’t feel like anywhere.
But I’m too numb to cry, so I let the envy fester beneath the surface and mix that with self-loathing for not living a life that’s supposed to be precious in the first place and add it to the guilt of being too sick to be a part of anything. I become a cocktail of loneliness while the darkness wraps a blanket around me like it’s some kind of comfort, whispering, there, there, stay here with me.
I don’t know what I’m supposed to be doing. Everyone says I should only concentrate on getting better right now—it’s the line I fed myself to assuage the guilt of not being able to work—but it doesn’t feel like enough.
I’ve spent the majority of my life ill, and still I pushed through it. I went to college and traveled and worked so hard to create a future for myself, to pursue a dream, to build a career, and to define my own success. When I was finally diagnosed, all through treatment I relied on the knowledge that one day I would be better and could live my life at full-throttle. Everything I had worked for, I believed, could be realized when I was healthy again. It’s what kept me going—knowing that hard work pays off.
That was then. Now, this relapse has flung me back into the darkness of this illness, where everything I worked for seems to have slipped away once more. I want to keep fighting. I want to pick up the pieces and put them back together again, to keep working harder, but I’m so tired.
I’m so tired.
I don’t know what I should be working for anymore. Every day, I spend an hour between naps plugging away at my writing because I would drown without a place to put these words. Every day, I work at creating some semblance of a future for myself when I don’t know if the dream is worth the fight and the fatigue. Most days, I question what the dream even is anymore, wondering if even that has faded.
I can’t bear my days like this. This idleness means I’m only existing when I want to be out there, living. But I remain limited, trapped, wrapped up in this illness and the mix of emotions that accompanies it, even as I continue to get better. Even as my spirit grows stronger than it’s ever been before.
I don’t know what my future has in store now. For the first time in my life, there is no plan. What I could once envision so clearly is now an echo of the life I wanted. But I’ll keep waiting. I’ll keep fighting. I’ll put those other dreams to rest for now and concentrate on the only one that matters:
To live.
Opinions expressed by contributors are their own.
Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.
