Losing Joy

I fear that losing joy is a bit inevitable as you battle Lyme disease. The daily onslaught of despair, dread, loneliness and fear is a heavy burden to shoulder. But, you have to keep seeking the rainbow after the storm. Somewhere, deep inside, you have to remain tethered to your inner self, no matter how hard it seems. I nearly lost my joy to hopelessness…

Losing my joy

I curl up into a ball against the world. I have been here, in this tiny shape of avoidance, for so long. The sun hurts my eyes and noises make me jump. Walking is dreadful. I feel as though I may collapse at any moment. The sun’s rays bear down on me with a gravity unknown to this planet. How can it be this heavy? A fear of everything has given shape to the tortoise shell I carry around on my back. Hunched over, ready to curl into myself at the first hint of any danger, internal or external. When that doesn’t work I crawl into my inky cave of solace.

My cave protects me, like crawling back into my mother’s womb. Nobody can touch me here. Lying here, on a smooth surface of onyx, I’m surrounded by a vast vacuum of nothing. An ambient light shines down on where I lay, glowing from some unknown source high above me. It provides an aura of comfort. My only connection to the outside world. I disconnected from the outside world when Lyme disease took from me any essence of my soul. Joy, ambition, belonging, security, wonder and amusement, all slowly stripped away by the razor sharp edges of despair.

The morning light intrusively pokes its way through my bedroom curtains, resurrecting anew the anxiety of another day. I’m forced to crawl out of my cocoon and face the ugliness of this body, mid-metamorphosis. I no longer recognize the woman staring back at me in the mirror. I avoid her now. But the reality follows me. Staring down at my bare arms and legs I see that I’ve transformed into a reptile. My skin is sallow and dry. It clings to my bones, lacking its youthful elasticity and prematurely creased. I wonder to myself, with little hope of a positive outcome, if it will ever regain its spring.

My husband goes to work every morning at 8:00 a.m., leaving a void behind him that sucks me into its grasp. I seek to fill this emptiness surrounding me. The tiny bugs invading my brain and nervous system have made it difficult to focus. Normally I would read to fill the time but after scanning the same paragraph over and over I resort to short TV shows. Movies are too long. I get lost in the narrative.

Today, I’m gripped with fear knowing that I have to make a grocery run. I’ve always hated going to the grocery store. Now I hate it because it feels physically and mentally impossible. Simply driving there feels terrifying. I forget where I am on streets that I’ve been driving for years. Once I arrive safely, I walk as quick as I can to reach the grocery cart for support, before I fall down.

Leaning heavily on the bar of the grocery cart I walk through aisles teeming with products I no longer recognize. I’m overwhelmed by logos and colors, stacks and stacks, aisle upon aisle. I look for milk in the cereal aisle and conditioner in the milk cooler. My brain swims with unrecognizable categories. I call my husband and he saves me. Honey, where do I find milk? My voice quivers and he guides me around the store from his remote location.

Back home now, I sink into my husband’s leather recliner. The leather is cool to my skin and I shiver. The tremble rocks my whole body, inside and out. Exhausted from the exertion of grocery shopping I curl up into a ball. Who is this person? What is this body? This body that used to glide effortlessly and gracefully across the stage. I fall asleep and dream of that woman, dancing in a field of wildflowers. I hope I’ll see her again.

Days and nights pass with little in between. The sun rises, I take a lot of pills, go through the motions of life and watch the sun’s movement across the sky. As it begins to wan into night I grow weary of what the next day will bring. More of the same. I lay my head down on my pillow and the stranglehold of fear coils around me, afraid I may not wake up tomorrow. Any sense of joy has long since escaped. Or maybe it’s buried deep inside me, cowering with the rest of my soul. Despair and dread are powerful emotions, knocking the wind of hope right out of its sufferers. I seek joy, I seek hope but they’re piled under rubble too deep to scale.

Hold onto something Jana, I tell myself. Hold onto something. In a desperate attempt to not lose myself entirely I begin listing things I’m thankful for…my husband, he hasn’t left me yet. He’s so supportive. I love our breakfast time together in the morning. As I drift into sleep, I cling to the image of my husband cooking breakfast and the smell of bacon wafting through our house…I love our mattress. My pillow is awesome. I’m grateful for the roof over our heads. Oliver, I’m grateful for Oliver curled up behind me. I’m grateful…grateful, for food. Yes, thank you for food. What else?… Eventually, sleep finds me and holds me dear.

What is your tether to joy? Where do you find hope?

In the early days of my treatment I had a dream that stuck with me until the end, even today. I dreamt of myself dancing in a field of wildflowers, a re-creation of a childhood day with my Uncle. I was care-free, graceful and beautiful. A genuine smile that resonated from a deep place of inner joy was adorned on my face. When I awoke I was gasping, crying out to her not to leave. I made a promise into the darkness that I would find that childlike joy again. I would find that woman, dancing in the field of wildflowers. That was my tether to joy.

We all process pain, grief and despair differently. It’s easy to judge yourself living in a world that compels constant competence and subdued emotions. Nobody can fully understand what you’re going through. Even as a Lyme warrior, I can never completely grasp your personal journey through your battle. Losing joy is a wretched experience. As you battle through day after day, don’t lose sight of the person you once were. You’ll find her/him again. Accept your own process of healing. You may even find some joy there, in that part of you that is a warrior against disease.