Anyone who’s ever experience one with me always said that I’m good in an emergency. I’m the first to organize, make a plan and execute. No time is wasted on freak outs or fear. And I agree, I enjoy being on my own team any time the shit hits the fan. But I’ll tell you what. This kind of survival spirit, it comes at a cost. And that cost is delayed emotional processing.
You see, I find myself in the early months of year 2 of late stage Lyme disease treatment and I am just now starting to feel the full impact of what’s happened to me. Of what I’ve lost.
I think at all points up until now, I was just enduring. I was living through it. Between the hearing loss, the vestibular challenges, the panic disorder, the weeks without sleeping, the mysterious traveling pain, the hundreds of doctor’s appointments, the conflicting information, finally the diagnosis, figuring out treatment, selling my home, changing my diet, learning about “herxing” and trying to understand how to keep myself at all functional… there was never room to think about what was lost, about what it all meant to my heart, to my soul.
My therapist and I did an exercise recently where he had me describe an illogical thought by saying what it was (“I am not safe”) and naming where it came from. Without even thinking, I blurted “from direct mother fucking trauma”.
Lyme disease has been nothing short of that: direct mother fucking trauma.
I’m not even sure I can quantify it now. Not yet. The best I can describe so far, my life… even the very heart of who I am… was torn down to rafter through this. I mean, 2 years ago I was doing crossfit 5x a week, I was working 60 hour weeks, I was going out with friends every single weekend, I was vivacious and witty and fun. And then suddenly there I am… homebound, dependent, terrified and very very isolated. FOR A YEAR. At the beginning of this, I was practicing walking a few yards at a time with my hiking sticks. I was missing cognitive function enough that I would get lost in my own neighborhood, and I faked my way through most conversations. I was truly sub-human. I understood, for the first time, how someone would really truly just want to die. At times, I would have accepted it without challenge.
Coming back to life after nearly a year of that… it’s… an unexplainable surreal experience. When you’ve lived through week long periods where you simply struggled to keep your last breath in your chest, your whole span of reality shifts.
Last night, I went to an old friend’s birthday party. About 20 or so of us met up at a Mexican restaurant and sang karaoke. True to form, the evening was raucous, loud, quick paced and booze fueled. This used to be my everyday life. And while I abstained from any alcohol, and was the only one performing “soberoke”… for just a few hours I felt like my old self again. I laughed. I joked. I kept up with stories. I sang several songs. I danced. I hugged the people who’d only ever known me as that girl. I stayed up late… I didn’t think about Lyme disease. And it didn’t hit me until I got home, until the man next to me was asleep and I was alone with reflection… how incredibly HEARTBROKEN I am that that isn’t my life anymore.
The tears just streamed.
They still are.
I’ll never get to go back to that life. Functionally, I’ll probably never get to go back to multiple whiskies, or late night junk food, to yelling across bars, to staying till close, to being part of every fun adventure my friends have. No, to stay in remission (when I get there) will take a lot of healthy habits. And that alone is enough to grieve. But what gets me the most is that I’ll never get to feel that INVINCIBLE ever again. I’ll never feel completely safe, okay and full of possibility.
What Lyme brought into my life is close up knowledge of the kinds of horrors that are potentially – at any moment – just minutes away. Horrors of your betraying body. Horrors of your unsound mind. Horrors of so many friendships lost. Horrors of great loves that leave you. Horrors of baby carrying dreams that’ll now never be. Horrors of standing abandoned by modern medicine. Horrors of going bankrupt for treatment. Horrors of being misunderstood, isolated and alone.
No. I will never feel safe or okay again. At least not in the naive way that I used to. And this is right. This is good. This is enlightenment. This is the TRUTH. But damn if it doesn’t feel heavy on my shoulders right now.
I know this is a sign of healing. The emergency is ending. And so the feelings hit.
I know someday I probably will be okay again. I’ll be happy. I’ll develop a sense of trust. I’ll rewrite myself, my soul, and my heart. And I have no doubt, I will find happiness in this new life, this new me. Whatever and whoever that ends up being.
I guess the first step is to feel the pain of the loss.
And feeling it I am.