Living in the Lymelight

Today was one of those days where nothing substantial occurred, but nevertheless, it made me recognize that I’m lucky. It played out like most days: woke up early, taught my morning writing course at my dream college, submitted some photographs to an upcoming art show, picked a coworkers brain, attended a work meeting, napped, and went to work on our new home that we are currently renovating. Once we arrived there, I was too exhausted to do much, so I set up shop on the back porch with my camera, dog at my feet, barricade across the deck steps, and our stray cat keeping watch from her favorite tree stump. The birds, as they often do this time of day, were flitting about on the suet feeder: Cardinals, a Red-headed Woodpecker (female), Blue Jays, Chickadees, and our two Cat Birds. As I watched them, two Red-Tailed Hawks flew lazily overhead, letting out their familiar ‘kree-eee-ar’ to alert their prey community of their presence. Soon after, I heard a rush, and looked up just in time to see hundreds of Starlings flying overhead to their night-time roost, in a flurry of wings that made my heart race. How freeing to fly! As I sat enthralled by the nature that surrounded me, I was struck by the thought that all this beauty is the environment that cultivated my disease. It’s not something I’ve ever thought about before, but last week’s diagnosis changed everything.

I got the phone call as I was shopping at Wegman’s; the nurse practitioner calmly announced that I tested positive for Lyme disease. My response? “So, now what?” It was a disease we’ve diagnosed many dogs with at work, but it was something I knew very little about. I always thought, just treat with a round of Doxycycline and everyone gets better. I soon realized, with the help of some wonderful friends who unfortunately have Lyme also, that it was far from that easy. I had been telling my former doctor to test me for Lyme for the last 3 or 4 years — my mom says even longer, but my doctor plainly refused: “You’re being a hypochondriac, Corinne. It’s all in your head!” But I never felt right. My lethargy increased over the years — I gained weight because of my slowly increasing intolerance to lengthy activity, and I started beginning to forget things. Then the migraines, slight tremors, shortness of breath, and stomach pains began. Now, I can’t move for more than three minutes without getting extremely fatigued and out of breath. Sometimes, when I’m really exhausted, I start slurring my words. This happens every afternoon, like clockwork. It wasn’t like me, and I sure didn’t feel like me. And, while hearing “Lyme” on the other end of the phone meant I could finally put a name to my problems, it wasn’t necessarily a relief. Some call Lyme the invisible disease because you can look fine on the outside, but be in constant pain, brain fog, and exhaustion on the inside. I’ve already heard mutterings from some people about me having “an excuse” and wondering how long it was going to take before I started playing up my disease. I get it. I look fine from the outside — I’m aware of that, but they have no idea of the pain and frustration I’ve dealt with these last years. It’s really incredibly frustrating and terrifying to not remember names, certain words, past events or memories with friends — these are all things I used to be good at remembering. I can’t begin to explain how angering it is to forget words in front of your students. Thankfully, I have a great group who is very understanding!

But, I digress. With all of this, I’m still lucky. Having a long term, undiagnosed illness has taught me a lot of things, even in the short week of finally knowing what the hell is wrong with me. First, it’s taught me a lot about Lyme, how many people (and friends) battle it chronically, how insanely political of a disease it is, and just how debilitating it can be. I’m lucky because I’ve been untreated for only 4 years tops. Others have had it much longer, and had doctors who wouldn’t treat them or test them, and insurance companies often won’t cover the long-term antibiotic treatment they require. Some have more severe neurological issues, intolerable pain, brain fog, ticks, extreme lethargy — the list goes on. Some doctors have found a link between Lyme, MS, ALS, Parkinson’s . . . Terrifying, no?

Second, it’s made me realize how disturbingly intolerant some people are of anyone who has long-term or chronic illness. I’ve found this to be the most difficult thing to cope with — people who you believe to be your friends will actually exercise NO sympathy, think you are weak, over-exaggerating, lying, or a complainer. I’ve quickly learned that those are not people who deserve my time. I feel sorry for people who cannot empathize with others. What some people believe is my weakness, is actually my strength. Overly emotional people have extreme compassion for their fellow man and the trials and tribulations they may face. All the horrible things I’ve been through, including this disease, have not ruled my life, but they have changed me for the better. My strength knows no bounds.

Thirdly, I never realized how uneducated the world is about Lyme disease. It took one documentary to open my eyes to how dangerous this disease actually is (Under Our Skin. Watch and learn!). It is an epidemic. But, I don’t need science to prove that: my own friends have. When I made the announcement that I had Lyme, the amount of friends who reached out was overwhelming. I didn’t feel alone, I felt sad. Sad that so many people I knew had to suffer, sometimes very long-term, with this terrifying disease. But, it made me realize something else: how strong and supportive the Lyme community is with each other. The outpouring of advice has been nothing short of incredible. So to those of you who have reached out, I want to thank you. Thank you for extending your words of encouragement, thank you for the love, the doctor recommendations, treatment suggestions, and most of all, for making me realize that, right off the bat, I was not going to have to go this alone. I know because of all of you that this disease will never define me. ❤️