I've sat down countless times over the last few months, determined to write a blog post. I felt this compulsion to share my life with others, to talk more about the realities of lyme disease, to raise awareness about its often unrecognized impact. But mostly, I felt compelled to write because I was just so desperate to open up my tiny world to a larger community. To invite people in. Lyme can be lonely. And confining. And scary. And writing about it felt like a life-line that I was throwing out into the world. It felt like a window I was installing to bring sunlight into my dark and lonely moments with this disease.
The only problem was that every time I tried to write, to reach out, I couldn't. The words didn't come. No matter how hard I tried, everything that came out just wasn't right. And it was infuriating. But mostly, it was just isolating. I couldn't build any windows for the light to come in. I couldn't see where to start.
I have spent a long time thinking about why this happened, about why I lost my ability to share my voice in an authentic and meaningful way. And i've realized that its because over the last few months, as my lyme symptoms got bigger, I made my world smaller. I made my world smaller out of survival. It became too difficult to be out in the real world all day, working and pretending to be healthy, and then to come home and invite the real world in to the aftermath. To the real stuff. To the exhaustion, and the anxiety, and the fear. I spent so much of my day acting healthy, that when it came time to take the mask off at the end of the day, I was so depleted that I closed myself in. I couldn't invite people into the mask-less me anymore. My home became my shield. These four walls in my tiny little apartment became my protection. And the thought of letting people into this tiny little area felt like a threat to my survival.
It sounds dramatic, I know. But the outside world isn't always a friendly place to those who can't keep up, who can't measure up, who can't one up another. So I needed to keep my lyme life private. I needed to keep it windowless. I needed to separate my two selves, and make sure they didn't coexist. I couldn't be sick in the real world, so I shut my lyme out during the day. And then, when night time came, I was so busy recovering, so busy being sick, that I couldn't imagine sharing anything with the real world. It had taken enough from me for the day.
I was the healthy me when I was outside of my home, and I was the 'lymie' battling these bugs inside of me, sometimes successfully but mostly not, when I was inside of it. And as long as those two divisions remained in tact, it felt manageable. 45 hour weeks felt doable, because it wasn't the "sick me" doing them. But I lost my ability to share about my private life, because it threatened to dismantle this container I created for my disease. And for a while, this division of my life worked well for me. It worked well until it started to feel like I was alone in both worlds. Like I was abandoning a part of myself each time I left in the morning, and each time I came home. It worked well for me until I started to feel alone in both places, all of the time. Until I started to get worse and worse symptom flares, and the neat divisions I had created became sloppy and overwhelming to navigate.
So here I am, back to writing. Back to building a window into these four walls i've been hiding in. Back to sharing how exhausting and relentless lyme disease can be, and how infuriating and confusing an invisible chronic illness is. Because it is a message that I need you to hear. Because it is a lesson that I need to learn.
As isolating as the last few months have been, though, I wouldn't take them back or do them differently. When I first started getting sick, I was so scared of my world shrinking. I was so scared of all of the things that I would lose, and I was heartbroken for all of the parts of me that I wouldn't have any room for anymore. As my world got smaller, I thought it meant that I would too. But the really cool thing that i've learned in the last few months is that as my world got smaller, my understanding of myself got bigger. My sense of who I am, what I want, why i'm here, and where I'm going grew exponentially. In my tiny world, I reconnected with myself. I got intimately acquainted with every little piece of my small world. And my love for those pieces grew. A lot.
I've learned that sometimes our worlds have to get smaller so that we are forced to figure out what to keep around. So that we're forced to meet ourselves. When there isn't room for much, you have to choose whats important. When your world is reduced to a small tiny space, there's not a lot of room to run from yourself.
Small worlds don't mean small minds, or small dreams, or small goals. Sometimes, small worlds just mean more intimacy, more connection, and more honest vulnerability with everything still in it. A lot of knowledge can be found in a small little world. A lot of healing can be done.