“That is part of the beauty of all literature. You discover that your longings are universal longings, that you're not lonely and isolated from anyone. You belong.”
- F. Scott Fitzgerald -
I’ve been focusing on my writing again, now that the neurological symptoms from this relapse have begun to subside and I can write/read more than a few sentences at a time. Lately, I’ve been documenting the emotional toll this relapse has taken over on a new tumblr site, Lost in the Lymelight. While my blog used to be that outlet, I found myself censoring my words, wanting to offer words of hope for those who email me and share their own struggles with this illness.
But Lyme Disease is ugly and relentless, and surviving is hard–it’s a choice that you have to make day after day after day. And while there’s hope–there’s always hope–there’s also sadness and loneliness and frustration and disappointment.
Here, in this small corner of the internet, I’m giving voice to those emotions. I’m shouting and I’m crying and I’m doubting. I’m ripping out my heart and pouring it, raw, onto the page and telling myself it’s okay to be lost for a little while, so long as I let myself be found.
I’ve felt lost without my writing. I feel like I’ve lost a part of myself, like that voice that has guided me all my life has gone silent, and I don’t know how to find her again. I don’t know where I stand with my dreams. I don’t know what I’m working towards. I don’t know where I belong.
I don’t know where my place is anymore. Maybe it has to be enough that my place is right here for now. Even now I’m struggling against that thought because I want more out of life than to just exist day after day. But sometimes it has to be enough just to know that there is breath in your lungs and a beating in your heart. Once upon a time, my first book pushed me through the pain and fog and fatigue and helped me make sure I had a future to look forward to. I didn’t give up then, and I’m not going to give up now. Which is why I’m pushing though with my next book, The Last Letter–a fictionalized account of my experiences with this illness. I wanted to share my story, knowing that my experiences with Lyme Disease and similar chronic, “invisible” illnesses are shared by millions of people across the country and the world. I needed to write this story, knowing that the number of Lyme-specific cases keep growing exponentially, knowing that there are so many others, like me, who feel alone in their suffering, abandoned by the medical community, and who are struggling to just be heard. I had something to say, but I didn’t know how to say it. I had a story to tell, but I didn’t know how to to tell it. Until this character offered her voice and the right words followed. I don’t have much these days. Oh, I have so much to be grateful for–an incredible family, supportive friends, the unconditional love and companionship of my dogs. But I feel like I’ve lost something with this relapse–my sense of purpose. My dreams. My reason for being here. A way to belong to the world. This book is giving me a reason. Over the next few weeks, I’ll be pouring myself into revisions and writing and deciding whether or not to self-publish again. The important thing is, I’m forcing myself to dream again, when my dreams have felt a little lost. I’m giving myself a reason to keep going–to look forward to tomorrow and the tomorrow after that and the one after that. It’s funny how it happens–when I’m feeling despairing and lost, it only takes a few keystrokes for my soul to roar to life and decide to keep fighting. Writing is saving my life once again.