I'd Rather Not Talk About Lyme Disease: On Doing What's Best For You Right Now, Even If That Means Less Lyme Talk + More Wildflowers

MTL Real Talk

Just like that, I'm curled up in the floor...

Hands grabbing at two bobby pins, missing, falling, and missing again, eventually with one in each hand I move my fingers quickly, tangling and un-tangling the two pieces of wire. 

When I stop, my hand convulses, vibrates even, sending shivers of pain and pressure through my veins. And you know what really gets me? The anger. The there-is-no-way-this-is me anger that wriggles and ties my insides in knots. 

I don't set it free, not this time, but it takes everything I've got to keep it under control. I want to scream and smash things. I want to be angry with myself as hurtful words bounce back and forth in my head. But I don't. I just sit here, hands and forearms now wrapped tightly around my chest, focusing on everything and nothing at all. 

Vision blurred, neck throbbing, shoulders twitching, and limbs weaker than they've felt in months, I feel the need to run. Run as far away as possible from this feeling, maybe then the anger will be swallowed up by distractions and fresh air. 

Recognizing that a change of scenery might do me some good, with some help I climb into the truck as Adam started the engine. Our night of camping was off the table, so we head east 20 minutes, but it was only about 5 before I slumped over and fell into a weird deep kind of sleep I cannot explain. It was most likely pure exhaustion. 

When I woke, I found that my muscles had relaxed just enough for me to stretch my legs and take a peek outside the now parked truck. The evening was warm; ants wandered about between my feet as the dessert sun streamed between the juniper trees. My first thought was, it will be ok. Hard, often times yes, but we will make it through. My second thought, holy crap I'm beat. Third, I want to pick a bouquet of these wildflowers. 


This isn't always how these moments end up: three years ago I would have most likely wound up in the ER, two years ago my bed for a few days, one year maybe a few hours wrapped up in a blanket. But now. Now I get to be here in this wide open space, reminded that progress, time, and how we interpret the two are funny, funny things. And you know what the craziest and most devastating part is? People go through this daily, uncertain of whether or it they will make it through. That things will turn out ok. 

This needs to change, and this should not be seen as normal. If you let it, this cycle can break you down and tear your confidence, motivation, and even curiosity for the world into pieces, leaving you with what feel like an endless amount of broken to be put back together.  

So, what can we do to help? How can we change this? We can share the hard moments as well as the good. The ones we'd rather forget about and the ones that keep us going, and when we don't feel like we want to share anything at all? To do just that and not feel guilty.

There is a place for everything, and sometimes that means focusing on other things, just as long as you know that this community is here for you. Here for you to share your story when you feel ready, and here for you to sit, listen, and lean in as we slowly but surely lift each other up went we don't. In turn, each putting forth our unique, beautiful, and already worthy selves. 

And in that moment, letting the dust settle on my feet and hands as the warming scent of June's sun calmed my nerves, I feel encouraged to pluck these bright reminders and see them for just that, a reminder that moments like these can stay with you and you alone. And if that moment does strike? The desire to share the whole story or a maybe just a snippet of it, you'll listen to your gut and the thump-thump-thump of your heart, asking yourself, what do I need right now? 

When you decide to not share, someone else shares, and so the cycle goes: we give each other room to listen and room to speak up, letting the people around you know that all of this, it doesn't have to be carried alone, even when we choose to keep something to ourselves. 

That yes, Lyme is part of our lives, but it is not the whole story. Finding out that what drives us and brings us together isn't alway Lyme, and that by seeing this fight through the eyes of curiosity and self-discovery, we can better come together and make the steps between here and the health we deserve in a much clearer light.

You may have Lyme Disease but Lyme Disease is not you, and you can still be an advocate for it even when you decide to choose a different topic of conversation or adventure headed in this direction or that; you get to decide how you'll do this, and no matter what that looks like, we'll be here for you. 

Cheering you on the whole way through. After all, finding out what makes us more than is different person to person, and in the name of happiness and all things good, we must find that thing, or things, that keep us going.