Just got back from a long vacation to Transylvania. A vacation from the dull and modern world of DC suburbs. A vacation (almost) from 6 hours a day in the kitchen. A vacation from this dirty house. A vacation from doctors and lists. Unfortunately, not a vacation from Lyme Disease.
As I suspected, there were challenges. Remembering to tote around my pharmacy on the road trips. Panic attacks. Stomach aches. Vertigo. Allergies. Fatigue. But there were also profound moments of clarity, of beauty, of awe, of gratefulness, and, I believe, the start of my journey OUT. One experience in particular made me feel like this was the beginning of recovery. And I want to remember it.
Because even now, the symptoms are creeping back in and the voice in my ear is whispering that my life is going to waste.
I need something to throw back at it.
I have just the thing – this little rock I collected from a cold mountain stream in the southern Carpathians, after climbing to the top in a fit of sweat, tears, exhaustion, and sheer determination.
It began in the Romanian city of Sibiu. One night upon getting ready for bed, I noticed a bruise on my stomach. But not the green-purple kind I’m always acquiring from bumping into who-knows-what, but a crooked blue line. The dreaded varicose vein. I burst into tears. An overreaction for sure, but it was a lot of pent-up frustration. To me, it represented all that Lyme was taking from me. Lyme sucked the joy out of life. Out of my marriage. It ruined my career, it ruined my plans. It took away the food I loved, and more importantly the people I shared it with. It and Babesia took away my singing voice. They took my mind. They took all control of my body.
Not long ago, I discovered that my belly was the single unblemished part of my body. My legs are a mess of those big blue spiders, my back is covered in “weird moles” (doctor’s words, not mine), some sort of keratosis has made an alien of my arms, and even the very middle of my face is blessed with a scarred birthmark. I used to like my smile, but my gums were receding and I just spent a week nursing insane dental pain with coconut oil. Thanks to Lyme, I’ve gotten to know my body a little too well. What hurts, what rashes should or shouldn’t be there, and I’m checking far too often for new “moles” that could be ticks. So in a moment of sheer vanity, I realized I had one perfectly soft and smooth alabaster portion of skin that looked like a work of art (albeit the lumpy Baroque era, but art nonetheless). No one would ever see it or admire it outside the bedroom, but just knowing I had SOMETHING worthy of a canvas made me feel good.
Then this thing appeared.
The kind that doesn’t fade. This stupid disease had every rein over my body. It was taking the weight off my stomach (hurray!) but not my thighs (boo!), leaving me in a terribly awkward relationship with pants and safety pins. My last symbol of normalcy, of beauty, of feeling like there was SOMETHING left worthy of being married to... gone
I only cried harder at the fact that I had become so shallow. No one would ever see it. My husband couldn’t care less. But he wasn’t the one watching his mind and body fade away. He wasn’t the one who stayed home that night because his ankle gave out, and missed an amazing orchestra playing in the open square on a warm summer evening.
I went to bed full of sorrow and woke up much the same. My foot was in pain, I was limping, and we were headed into the mountains. I hoped all the beautiful sites were visible from the road so I wouldn’t miss anything more. I wrapped an ice pack in a towel and packed it around my ankle as we settled into the car as we headed into the mountains.
Those mountains. Those glorious, green, looming and majestic mountains. I was thrilled as they came closer and closer, and finally we were IN them. On the way up, we stopped at a busy tourist area to stretch. It turned out it was the path to the Cascada Bâlea waterfall.
My ankle screamed at me from below, and the mountains called to me from above. The path was wide and gently sloping. I could limp up enough to see it, right? If I stepped a certain way, I could alleviate some of the pain. I rolled up an extra sock for some arch support. That path stretches for at least 40 minutes. How much farther, no one could tell me. At about the half way mark it seems the trail ends at a small pool, but the waterfall is still far in the distance. Is this it? Some people were hanging off the rocks behind us. Is there more up there? Yes. The trail goes on. Or UP, rather. I don’t remember ever climbing such a steep grade. The mountain was a tangle of rocks and tree roots, there really wasn’t even much of a trail. You just went UP. However you could find a foothold to get there.
I had miraculously found a walking stick. All the trees were sticky sappy pine, and I feared I’d have to use my husband as a crutch the whole way up, dragging him down. I found the one single fallen branch that was not pine, and hacked away at it with a Swiss Army knife. I was tired of missing out on life. I’ve been to many places, and though I always dream of returning, money and time just don’t always allow it. Would I ever return to the Transfagarasan? Now or never. So UP I went.
I remember being in awe of the way my feet had to twist and turn to get a foothold among the roots and rocks. My ankle didn’t hurt at all. Now it was taking everything else I had to get up that slope. I could not forget that I’d been battling Lyme disease for over a year. I was severely out of shape. My muscles were not strong. I was sweating buckets, huffing and puffing, and quickly running out of water.
The ascent seemed never-ending. We stopped some people on the way up to make sure we were headed in the right direction, that there was something up there actually worth seeing. My husband spoke briefly with a young woman about the climb. “Ai curaj, it’s worth it.”
Ai curaj. Have courage.
I’m not sure at what point he pioneered on ahead, but I was soon alone. I had to stop frequently, and smoosh myself into the rocks and out on limbs to let other people pass me. Kids, teens, adults, making it look easy. Lumpy women in cheap sandals not needing nearly as much effort as I was exerting. Bombshell blonds in short shorts. The kind of girl who didn’t have varicose veins on her belly...
They also didn’t have a beast inside of them that knew how to fight an invasion of bacteria and parasites. I was a mess of sweat, noisily heaving myself up a mountain, the waist of my pants pinned together, the cuffs tucked nerdily into my permethrin-coated socks. No one wants to see me on their instagram feed, no one’s gonna whistle at this blob sludging up a mountainside.
But somewhere out there is a young woman whose life has just been derailed by this thing called Lyme disease. She’s sobbing on her couch, alone and scared, and unsure that life is even worth living anymore. She’s using the energy and blurry vision she has left to find some glimmer of hope, someone to tell her that this blackness isn’t going to last forever. For her, I am crawling on a mud-covered rock and throwing my aching muscles over fallen trees, 4000 feet up the Transylvanian countryside. For her I am declaring the fear of ticks will not keep me out of the woods. To her I say, “I was you. A year ago. Six months ago. Just last night. This thing will not kill us. This thing will make us LIVE, bigger, bolder, better than before. And from now on, everything you do is heroic. You are a warrior. You are a champion. You have stared a silent killer in the face, and you will tread it beneath your feet with every single step you take for the rest of your life.”
I could hear the water rushing, see trees opening up into sky. The whole way up this mountain, I was thinking, “This is it. I’m going to do this. I’m going to finish. This is where my recovery starts. This is where I see what I’m capable of. This is the first day of the Big Adventure that is my life. This is the part where Lyme doesn’t have me. This is where I stop mourning my life and start letting the warrior out to tackle the world. This is where God shows his mighty and merciful hand.”
The moment I arrived at the top, the sun broke through the clouds. A literal vision of what I felt in my mind and spirit.
I found my husband already there and collapsed around his neck in a sobbing heap. This thing didn’t define me.
I eventually regained composure, took the knots out of my hair and tried to get some sort of photogenic for a picture. I collected a rock from the ice cold stream and pressed some flowers into my passport. This moment is not one that I can allow myself to forget. This day that started in mourning and pain has led to a peak of determination, divine strength, courage, mercy, and healing.
After taking it all in and being wary of an approaching storm (which was beautiful and never touched us), I headed back down that mountainside with my husband.
“Guess what?” I grinned.
“I got a new tattoo. It’s on my belly. It’s a reminder of that day I was a Beast and climbed a mountain while being sick with Lyme disease.”
The vein has disappeared. Maybe it was bad lighting. Maybe it was an ink spot. Maybe it was a lesson from life’s chalkboard. My pudgy unblemished alabaster tummy is back to it’s vain self.
I am struggling this week. The fatigue and brain fog have descended again. But I have unpacked my little river rock, and am starting to go through the pictures, and I needed to remember this today and write these words, if only for myself. It’s just another valley that needs to be crossed so I can climb another mountain.