Warning to readers: brutal honesty ahead. Continue at your own risk. :)
Many family and friends have told me I should chronicle my Lyme disease recovery process. I’ve been on treatment for ten months and making progress, but honestly I haven’t been able to provide further updates because I’ve been physically and mentally unable to do so as often as I’d hoped. This isn’t an update as much as a reflection. I apologize for the lengthiness. I tried to make it shorter, but it wouldn't listen. :)
At some point in my life—perhaps 15-20 years ago, we don’t know for certain—a tiny tick crawled onto my skin and bit me. I didn’t see him and I didn’t feel him at the time, but we’ve been worst enemies ever since. He injected poison into my body that’s grown into a raging monster. The symptoms have left me feeling like I’m 37 going on 97.
Over the past 10 years in particular, I’ve fallen into a black hole called Lyme disease. I wasn’t diagnosed until January 2018. Lyme disease is a terrifying, disorienting place where your body is besieged by up to 60 mutating symptoms ranging from seizures to paralysis to chest pain and joint stiffness. I’ve experienced most of them.
I’ve tried to fight and write my way out, but the more I struggle, the deeper it pulls me into the dark. I’ve had to grieve the life I thought I’d have, the one I diligently planned and plotted out like a timeline. That self is gone, that version of me with specific possibilities attached to its perfectly healthy, capable body. What remains is a different model. Now I must craft new dreams that conform to the contours of this model. I use the word “different” rather than “inferior” when referring to my diseased body. “Inferior” would be a fair assessment when comparing it to my previous healthy self, but it’s a positive self talk thing. Sometimes prayer and positive self talk are the strongest supports to help me crawl out of bed in the morning. They’re a metaphorical cane to prop up my weakened frame when my physical cane isn’t sturdy enough.
Honestly, the most difficult symptom to manage has been brain fog. It’s not merely a casual forgetfulness here and there. It’s a pervasive block, a mental mist descending around my mind, impossible to penetrate. I can’t form coherent thoughts, I can’t remember words I just read, and I can’t string together sentences with any clarity. The technical term is Lyme brain. It causes me to struggle recalling my memories, and it makes me question whether the memories I can retrieve were accurately formed in the first place. Sounds like a good plot for a thriller novel, huh? :) Even as I’m writing this, I’m fighting to break through brain fog to find the thread of this piece. It keeps disappearing into the mist.
I’ve been working on a new novel for the majority of the past year. Progress has stalled out again and again. Every day I sit at the computer, unable to trace my ideas to the spot I intended to cast them. It’s like a fisherman throwing out a line into the water, but when he blinks, he realizes there’s no line, no fishing pole, and he’s not even in a boat. It’s all a cruel hallucination. Yes, it’s that disorienting. I’ve had mind-bending visual and auditory hallucinations. It’s hard to feel connected to reality and other people when you question what’s real and what’s not.
Patience is an art I’m learning. So is resting. I’m not good at either of them. I want to flip a switch and reactivate my mind and body, but they’re unwilling participants. They require time and healing I feel I don’t have the energy to provide.
My perfectionism has been cracked in half and left in shards. I don’t have it in me to refine anything anymore. I’m sure this prose would be cleaner and tighter if my brain weren’t unspooled like a ball of yarn spilled across the floor. It’s strange, helpless, and somehow liberating to be undone by something I can’t control. I’m no longer responsible to keep up the appearance of being the person I thought I should be because I don’t even have the wherewithal to do so anymore. I can simply be my messy self. That’s all I have left.
Nowadays I’m revising my personal narrative and learning to self-edit who I am in my ill body. I live indoors most days. Sometimes I can’t leave the house for a week or more, but I’m trying to find the good in it. Rather than seeing myself as trapped, a victim of circumstance forced to brood in ever growing interiority, I want to live beyond these walls even if I can only travel there with words. I am diseased, but not dead, so living requires adjustments I never considered before. I used to walk with a cane every day. Now, only some days. That’s progress. I used to be unable to read or write at all because my brain couldn’t follow the words on a page or formulate coherent thought. Now, I can read several pages in moderation and churn out words a few pages at a time. More progress.
I’m not polished like I used to be. Most days I feel exhausted and talentless. That’s embarrassing to write, but it’s also refreshing because it’s honest. It’s important to recognize that I am not my disease. It’s equally important to distinguish that I am not what I’m currently feeling. Feelings change, so as they fluctuate, I need to constantly identify that my worth isn’t based on my accomplishments, or their current glaring lack thereof. It’s based on who I am. I still have value. I still have purpose. Even if my body is decaying around me. I find beauty in that. In that, I see God.
I hope to climb out of this black hole one day. When I do, I won’t be the same as when it first swallowed me. I’m certainly not who I once was. I’m quieter, more reserved, more sensitive, more emotional. I listen more, observe with greater awareness, and speak less. I don’t have as much to say in social situations. I have greater empathy than I did before, especially for those who are hurting. Much of the artifice of what I thought was important, which I’d layered around myself as a comfort to cover my own insecurity, has been stripped away. I have a tendency to be bizarrely honest nowadays. Some of it is symptomatic, some not.
I’m living life shed of distraction, but discovering a simpler life grown at its true living root. Yes, I’m often housebound and technically disabled, but in many ways my life is fuller than when I raced around busying myself with important things. Ironic, I know. Could it be that something that almost killed me ended up saving my life?
Healing isn’t always a straight line. Sometimes it’s a seismograph needle measuring an earthquake. The mind and heart can only hold on for dear life as the body’s upswings and downswings fling them back and forth. This, too, I believe, in all its disquieting madness, is progress. It’s not tidy, pretty, or preferred, but it’s real and it just might change my life for the better.
All thanks to a tiny, crawling critter. We’re still not friends, but I don’t hate him. I don’t have time for hate. I have a new life to live. It won’t look like I thought it would, but I can’t lie down and wallow in all I’ve lost. I’m still breathing, even if it’s labored. I still have thoughts, even if they’re foggy. I still have a story, even if the chapters are choppy.
I’m more than a vegetable with a broken brain. I’m a work-in-progress. The perfect sum of my imperfections. I’m being refined, even though I lack polish. Every day I can choose to keep breathing, keep thinking, keep living. This is the way to write my life. Word by word, step by step. As my brain inches out of the fog, so may my body.
So many times in life it’s easy to ask the question, “why”? “Why” am I suffering, “why” am I in pain? Why do I have Lyme disease? Why does my wife have multiple sclerosis? I don’t know the answers to these questions. I may never know. But I don’t have to know. Instead of asking “why”, I can ask instead “what now”? Asking "why" is immobilizing. It centers the focus on me and presupposes I could somehow master my situation better if only I could comprehend the reasoning for my suffering. But pain doesn’t work that way. It’s untamable, masterless. So instead of throwing up my hands to heaven and demanding for God to give me a reason, I’ll ask him instead “what now”? Asking “what now” is empowering. It moves my life forward and forces me to take action. It demands a daily choice: to lie down or get up. I’m rising and walking, even on days I can barely stand.
How I respond to my pain determines whether I grow through it or become consumed by it. I choose to grow, even if I never know that elusive “why”. “Why” won’t fix me anyway. What I do after I stop asking “why” is the only thing that counts. That’s when I become who I’m supposed to be. I won’t be the together, shiny person I hoped I’d look like, but I’ll turn into someone more vulnerable and honest, a truer me.
Disease is part of my story. It’s shaped me into who I am. But it doesn’t define me. Lyme disease is life altering, not life ending. Every day I have the choice to identify that difference and embrace the hope inherent in it.
That is worth fighting for. Worth writing for. Worth living for.
If you’ve fallen into your own black hole of pain, suffering, or grief, keep pushing through until you can punch some holes of light in the surrounding dark canvas. There are more people standing with you and cheering for you to overcome than you might believe. I’m one of them. Hold on to hope, friend. You can make it. If I can, you can, too. Press on. :)