Am I Doing This to Myself? Illness as an Identity, Limitations Around Happiness, & What It Took to Gain Back a Voice After Ten Months Without One
I decided to start having an audio option to the written words on this platform, that way you can go about your day while tuning in to the inner working of More Than Lyme! Let me know what you think as this is just the start of us on this medium & I'm so excited to finally be here.
However, please excuse the odd jumbled sentence and mispronunciation, as it was late and I was recording this from the closet of our bedroom, curled up on the floor, attemping to be as still and clear as I could. Turns out, too much focus can work against you.
Who knows, I may decide to re-record it, though without imperfections, what is a real talk, anyway?
I write to make sense of things, or at least that’s what I tell myself.
I pull on thought, put it there, then I pull out another, and put it there—over and over I go, mind churning up bits of debris, entirely unsure of where they came from. Actually, I’m convinced they were nothingness until I began to share their story, not mine.
There’s a plot line, so into it I dive, pulling up more and more until I’ve exhausted myself and conjured up a scenario; a moment, a conversation, seemingly impossible limitation; I'm so far from reality that I have to call in a lifeboat to carry me back to me, where dinner is growing cold, my computer glares at me from across the room, and the only signs of this mind-excavation is being worn on my face and in the heaviness behind my eyes.
The audible silence sends shivers down my arms.
The need to explain comes bellowing out of my chest, a near explosion of emotion all over this thoughtfully cooked dinner. I try to make sense of what's coming out my mouth, but for some reason there's a disconnect. A barrier between what I am able to say on paper and the physical voice I thought I knew how to use.
“Thought I knew how to use,” I roll it over in my mouth a few times before speaking it aloud.
So, I got my voice back, in a sense.
Physically, there’s no question of improvement, though acknowledging that, for the first few weeks or so, felt impossibly big—I’ve always been rubbish at transitions, that must be it, right?
Processing. I just need to process a little longer.
I think of the words my speech therapist told me back in May, “if you want to get your voice back, you have the power to do so, you might have just become comfortable without one. Ok with being in the background.” Or that’s what it felt like; a punch through my flesh and ribs, vibrating off my lungs, eventually settling in and depleting my self-worth.
I couldn’t breathe.
Am I doing this to myself? There’s no way. She doesn’t know me, I know me. I know me best and we’ve only just met, so any view she has on the situation is from the standpoint of a doctor. An outsider. Someone I have yet to trust.
Then there was the three-hour car ride back home, in silence, where I questioned everything. Every. little. thing. I was furious at her, how dare she say such a thing! How dare she say I’m not trying hard enough. I mean, that’s what she’s saying, right? Right.
The negative-thoughts followed me home, into my dreams, and with my morning coffee.
I wallowed in them. I let them dictate my every move. I wanted to explain myself in full—there was so much to say on the matter! So much to sort through, put in boxes, folders, and file away until I was ready.
Inevitably, life picked up again and I tucked it behind this and that, so much so that it would take days of mind-excavating to uncover. To bring to the surface.
Though it wasn't long before storage became full and I was facing the lot of it.
I blamed her words instead of asking myself the hard questions; I deflected any responsibility for what I was feeling and why I was feeling it, and the truth is, I knew. I knew that until I got out of my own way, at least enough to be fully seen and heard, would I be able to live at more than a whisper.
Would I be able to do all the things I wished to do.
or at least try, anyway.
In more ways that one, this lack of voice became my identity, just as Lyme tends to do now and again, which then often leads to the question of, 'is this the only perspective my story can be told from?' No, not at all. I’d want to tell you it from that of my child-self, walking you through the moments that have so often been overlooked, sitting in the shadow of an illness that does everything it can to control your thoughts and suppress the joy found in-between its roar.
I’d want to share with you the bond that secured writing as a constant, and how initially reluctant I was to the idea of it, and take you with as we dig up potatoes at Tuckaway Farm, all gathering around for dinner after a hard days work, celebrating each other by sharing the food we harvested that very day. And after that, I'd invite you to roam the fenceless hillsides of the Scottish Isles, playfully avoiding the marshy grounds by way the stones scattered across the land.
And yes, there are the obstacles in those moments too.
Very present and very real, but I wouldn’t want to lead with them. I wouldn’t want to have them be the start, beginning, and end to every story--every feeling that I have cultivated around worthiness and belonging; They, the harder moments, add to the richness and complexities of life, but they are certainly not the entirety of my life, no matter how much of it they have walked through with me.
They shaped me then, yesterday even, and I’d say parts of this moment as well, but no longer are they the lead. No longer do they dictate my pursuits, set limitations, and decide what perspective my story will be told from.
It’s been close to a month since I have miraculously gained back voice, and the urge to explain and make sense of the in-between, the why’s and the how’s and the when’s, has me tempted to twist up my words, set rules, and put walls around myself again.
Only to be reminded that...
It’s in the going that we can forgive ourselves for holding on a little too tightly.
That we can marvel at what we’ve been through to get to where we are now, without feeling the need to retrace our steps, dutifully drawing out the map of how we got from here to there, just so there's an explanation, a rebuttal, and a well thought out plan for when those harder conversations take place.
And in turn, sharing from the perspective of, ‘my story is already enough,’ rather than, ‘this is what I need to do in order to make it enough. To make it worthy of sharing.’