Throughout my fight with Lyme disease, I have tried to be patient and calm. After finding that anxiety and depression got me nowhere, I have tried to embrace a Zen attitude about being ill for an indefinite period of time. I have worked to relish the good days and accept the bad days, acknowledge the failures but savor the successes. I don’t feel like doing any of that today.
Today, I feel the need to write a rare, less-than-optimistic post. Forced off the Pacific Crest Trail because of Lyme, I’m not in the mood to look for the silver lining of my illness, not interested in thinking about the gratitude or perspective being chronically ill has given me. Stuck in bed, tired, dizzy, achy, and twitchy, I’m finding it difficult to be positive or hopeful. Today, I need to rant.
I’m angry. I’m angry that some bacteria that entered my body when I was bitten by a barely-visible tick four years ago has the power to knock me off the trail, which I was hiking as a fundraiser for Lyme disease research. I’m angry that the same bacteria makes it difficult to hold down a job or go back to school or be in a relationship. I’m angry that it has changed the course of my life in dramatic ways.
I’m frustrated. I’m frustrated that, according to the CDC, I never had Lyme and that, if I did, it would have been cured a few years ago, after a couple weeks of antibiotics. I’m frustrated that there are so many unanswered questions about Lyme, that there is so much research that needs to be done. I’m frustrated that there are so few doctors who are familiar with treating it and that there are so few success stories. I’m frustrated that many people are far more ill than I am and that it seems as though little is being done to help them.
I’m sad. I’m sad that being sick made me lose some friends. I’m sad that a shortage of “spoons” made me flaky and unreliable. I’m sad that a gap grew between some of my old friends and me, as I could no longer easily relate to twentysomethings who were able to live like typical twentysomethings. I’m sad that people who’ve known me when I’ve been well aren’t sure how to respond when I’m sick. I’m sad that our society doesn’t understand invisible illnesses and that a whole lot of health privilege goes unappreciated.
I’m grieving. I’m grieving for the years that I can’t remember and for the year I’ve basically lost to being bedbound. I’m grieving for the brain I used to have, the intellectual competence and confidence I once knew. I’m grieving for the way I used to be able to make plans for my future, for the feeling that I could achieve most anything if I worked at it long or hard enough. I’m grieving for the marathon I haven’t yet run, the Masters degree I haven’t yet earned, the career I haven’t yet found.
I’m tired. I’m tired of feeling like I’m fighting this alone. I’m tired of not knowing what my next step should be. I’m tired of wondering what the spirochetes inside of me are doing, of having no idea that the troops are rallying before they rise up and send me crashing. I’m tired of being sick.