Yes, I know this. I spent more time in my old room at my grandmother’s house than anyone sane, free person should ever. Years. I barely left the house. I barely showered. I barely did anything more than breathe, sleep, and eat ( in between fits of starving myself out of despair, depression, lack of direction). In between that, the anger, or just trying to adapt to these new painful or discomforting symptoms, I’d spend my days playing this game, that game, or watching YouTube videos on all manner of things.
Then, I forced myself outside. First, to the store. I’ll never forget my sister asking, “Tony goes to the store?,” as if she were surprised. How much my life had changed, where it was normal of my family to think I never caught glimpse of the outside world, I thought. This is not right, I told myself.
Sure, it was awkward at first. I’d forgotten things, like smiling, making and maintaining eye contact. I still struggle. Over time, I noticed my body language when engaging people in conversation basically screamed, I want to leave. It wasn’t because I didn’t want to speak with them, but rather because I couldn’t. The brain fog wouldn’t let me keep up.
But, I kept with it. I’ve forced myself to do a lot of uncomfortable things, and somehow persevered. I can’t say I’ve mastered anything. I can’t say I’m all that much better, because I’m not. I just hang on, getting better, getting worse, life at a standstill. There’s no telling what my future holds.
I forced myself into a career where my role is to constantly interact with people. I put myself in situations that make me have to act like a normal person, even if I’m sick, failing at treatment, not putting enough into getting better, because that’s where life was before all of this. I was in class, I held work, I socialized with people, I was a part of things.
Lyme kills all of that, I get it. Health is everything. You have to feel well to do much of anything.
But, you also need to understand that most people never truly feel up to the challenge. They just push thenselves over that hurdle. It’s a normal thing, not just for Lymies. Granted, our bodies are a little weaker, a little more heavy, minds cloudy, but things are never gonna be perfect. Maybe that’s not what you’re asking for? But, you know, even then, maybe you’re asking for a little too much?
All I’m saying is, I don’t know how to get better. I don’t know how to be “me.” I don’t know if that person exists anymore. I don’t know if I want him to, because maybe that’s just wishful thinking? It’s like, worry not for a mind already so consumed by everything that is real and concrete about
his current state of being. The “what if” or “if only I felt X,” because God knows when that is gonna happen.
I fumbled around in my room at my grandmother’s for years before I discovered Lyme disease, and then a couple more while I tried to treat with a couple hundred dollars a month.
I come here, I say these things, hardly ever, I’ve found, as much for you guys as for me. I come and spew these reminders to myself that I have to keep pressing play, because otherwise my life is never gonna do anything.
Hell yeah, it’d be so much better if I weren’t sick, but you guys know how much of a trick that can be, right? Ask me in a decade, if I’ve beat Lyme disease. I sure hope so, but... if not, ask me about
the dreams I’m chasing or the ones I’ve already lived out, because I chose to ****ing go outside and do crap.
I’m fortunate, yeah. I don’t have terrible physical symptoms. I don’t have adrenal fatigue. I can sleep. Some crap in my life is good. I’ve felt worse. My heart goes out to those who are really struggling to find their strength. I get it. But, I’m also not willing to lie down and let the world pass me by either. I also exercise power of will.
I can sit here, cry and moan about
how I’m feeling, how bent up the world is, how people should help me, right? I remember every time these doctors wronged me. I remember every time a family member’s passed me some dismissive, hurtful conment.
My brain still works... kind of, right? Well, maybe I can go to school and put that to work? Maybe I can go to work and put that to work? Maybe I can? Whatever. Anything. As good as the rest? No, probably not. Is it gonna hurt, when it probably shouldn’t? Maybe, sometimes.
Are there times when it’s worth it? darn right.
I’m gonna stand tall again... tomorrow. I’m going to crawl back into my shell for today, because sometimes we need that.