It rains in Maine just like everywhere else, but after a storm, you never see puddles on the beach at Pine Point. Only broken sand dollars.
It’s raining as I sit here on the screened back porch in the dim pre-dawn light. Rain is falling softly on the dunes and the patter of each drop sounds with a distinctive plunk against the cedar shakes of the roof. The music woke me about an hour ago so I made some coffee and came out to enjoy the concert. It’s the first time I’ve been up before dawn in several years. That may not seem surprising, but during that time I’ve been in the middle of a life storm and the water seemed to be rising every day.
I have been battling an elusive disease called Lyme, not knowing that I had it. Not being treated because there was no diagnostic medical test that spotted it. What began as an inconvenient puddle of symptoms rapidly developed into raging river that swept me away. Careful examinations by a team of highly skilled doctors revealed nothing definitive. Thinking that I was dying from some supernatural infirmity--or was going mad--I slipped into despair. Each day I required more and more sleep until, at one point last winter, I was sleeping more than I was awake. Fatigue was my constant state of being. Aches and pain followed me throughout each day. I felt the waters were washing over my head. I was drowning.
Finally, yet another test produced sufficient “bands” to persuade a skeptical medical team that my malaise was, in fact, Lyme disease and I was reluctantly given a stiff course of antibiotics that fought off the invading spirochetes and turned the course of the storm. The maelstrom subsided and, very gradually, the symptoms are resolving.
In the course of all of this, I’ve met some incredible people and learned first hand about what it means to have a chronic illness. Confined to my bed at night and a cozy leather couch by day, social media became my contact to the world. I traded brief messages and learned through snippets of dialogue about the anguish and the loneliness. I discovered that the grief I felt at the loss of the vibrant person I’d been is a universal constant in this foggy realm. And now that my own Lyme fog is clearing, I’m fighting to make the world at large take notice through a funny little phrase called LymeSexy given to me by a sweet young lady named @Jaisibel on Twitter. Jazzy lives in the mid-west. Thousands of miles from me, but we weather the same storm. She struggles to keep her head above the rising waters of her own puddle with her music. She’s fighting the good fight.
There are hundreds like her who follow each other’s musings on Twitter and draw comfort from the community of what we call LymeTweeps. But there are tens of thousands who don’t--many who don’t even know how to stop the rain because they don’t know they have Lyme. I’m very lucky. I was diagnosed quickly enough that the neurological ravages of Lyme are reversing. LymeSexy appeared in my sky like a rainbow offering inspiration and goal for my self-renewal: bring awareness of Lyme disease into focus and bring the hope of a return to sunny skies to those who are still fighting against the murky waters of the Lyme puddle.
I need to spread the message that Lyme disease isn’t just a threat in the woods and fields, it’s present in gardens and backyards. Pets bring it into homes and bedrooms and if you’re bit you may never know it … until it’s too late. I need to advocate reform within the medical profession, the health industry and legislative halls to recognize a reality that’s been kept quiet like some dirty little secret: Lyme disease is a raging epidemic that’s been here a long time but invisible because there has been no effective way of diagnosing it. Most importantly, I need to help others realize that finding their own LymeSexy center, that locus of positive spirit way inside, is central to regaining what they fear has been destroyed. Like the Phoenix, we can rise again.
I’m lucky because I was able to move to the beach, both literally and figuratively. Here I have new opportunities to work in areas that help people. Mainers have an enormous sense of community and social responsibility. And because I live at the beach, I watch the pouring rain but know that shortly the waters will drain through the sand. The sun will shine again. The puddles will disappear and perhaps I’ll find a sand dollar that’s weathered the storm.
Cris Edward Johnson, Maine