by Emily Croot
#MyLymeLife
Learning to acknowledge my Lyme disease is a powerful gift that only I can give to myself
I recently rewatched one of my favorite TED talks, Susan David’s “The Gift and Power of Emotional Courage.” As I listened to her, I felt like she was speaking directly to me. I have for so long hidden my Lyme illness because I didn’t want to be viewed as broken or damaged. I wanted everything to be good and happy. As David puts it, I valued “positivity over emotional truth,” much to my own detriment.
I don’t like talking about my problems because it means I have to acknowledge they are real. I don’t want to have to say that I’ve been having trouble walking and don’t know why. I don’t want to admit I miss classes because I feel like I’m drowning in exhaustion. I don’t want to tell people I feel unsafe in my body. I don’t want to talk about it because I don’t want it to exist. I have been in denial.
But, as I have been told many times and was reminded by David’s talk, pretending isn’t going to make me a healthier person. Although I don’t want my illness to become my identity, the more I hide it, the more of my persona my illness claims. I am very scared about my future but I am ready to talk about it. In David’s words, “courage is not an absence of fear; courage is fear walking.” (I would say that courage is more like fear hyperventilating on a treadmill on fire but it’s not quite as succinct, is it?)
I plan my day around when I can lie down and simply exist. My life revolves around medication, figuring out how to make the most of my useful hours, and fighting to appear normal to others. Everything I do has to be carefully planned out and even then it doesn’t always work.
I feel like the world is happening around me instead of to me. I feel I have no agency. I feel unsafe in my own body. It’s hard to walk sometimes. I want to exercise and run like I used to. I want to do a lot of things I used to do, but this is my circumscribed life for the moment.
I have no idea what my future holds. Who among us truly does in the long run? Nor do I know how long my recovery process will be. I have a wonderful doctor who believes me and who is by far the best physician I have ever had in my life. But healing is a process which takes time and I don’t quite know what comes next.
But I am still me. I may be swimming in unfamiliar waters, but I can see the lighthouse. It’s a bright and beautiful lighthouse against a cloudy night sky. Its beam is strong and yellow while also warm and soft. It is all the parts of me that I love and can hang onto. It is my friends and family reminding me that I am not in the black waters in which I tread, not really. The lighthouse represents my friends and family, TED talks, books, molecular biology, fuzzy blankets, libraries, wool socks, kitchens and cookbooks, running trails, church choir, friends, and family. I can see all of these things in that wonderful beam of light that’s directing me back to terra firma.
In other words, I am still myself and I refuse to give in. I need to stop pretending that treading water is easy; the pretense only makes it harder. I’m done with that nonsense about pushing my emotions away (seriously, watch David’s TED talk below, it’s wonderful). And I’m done worrying about things I can’t control. I’m ready to keep moving toward my lighthouse.
Opinions expressed by contributors are their own.
Emily Croot is a student, writer, and cook splitting her time between New Hampshire and Union College in New York. She wants to help others and change her little corner of the world one person at a time.
