Self

So the tale goes, my first fully formed word beyond 'dada’ and ‘mama’ was ‘self’, but uttered with great theatrical emphasis so more like ‘SELF’. As in, I don’t need your help, I want to do it mySELF. Not only was this my first word, it was almost my only word for a period of time whenever one of my parents tried to assist in any activity like putting on my shoes or helping me get dressed or even buckling my car seat, a task well beyond my toddler dexterity.

Reflecting on this at 49, one, it makes perfect sense. Ouch. But, two, where did that clear desire originate? How did my 18-month old self determine the need to fight so vehemently for independence, and to what end? I don’t intend to drag us into nature vs. nurture here but in my current state of being far more dependent than I am comfortable inhabiting, I’ve been chewing on this as a way to make sense of how I’ve landed here. And much of what I’m unpacking isn’t tidy. Outside of my meticulously architected world of control, I’m unrecognizable, both to myself and to others. On a handful of occasions, now, I’ve heard people remark on how not my self I seem, that I’ve lost my light, I’ve dimmed. (this isn’t really helpful to hear, btw) I want to return to my 18-month old self and tell her to let up on the need to tie her own shoes, to let others in more, to receive and be coddled. Might that have shifted things such that today, feeling particularly run down, I’d still be a version of me that was familiar and at ease?

In the early days of my illness, I spent countless hours combing through research studies, mostly from our biomedical world, that offered potential insight into why this was happening or a proposal on how to fix it. I peppered my doctors with questions informed by my latest thesis, none of which held their attention or were answered in any way that moved the needle. I was self in full effect, bull dogging my way through a medical system that is siloed, overburdened and ineffective in addressing personalized care. Still, I held out hope that I’d find the ‘one’ who would see me as a case to be genuinely curious about, a case worthy of deeper listening.

This is simply how it goes for the vast majority of us struggling with Long Covid or other chronic illnesses for which there is no clear cure. And so online platforms become rampant with many selves debating research results, sharing drug protocols, relentlessly attempting to solve their own suffering at any cost. And while I find the community connection valuable in these spaces, I have to temper my proclivity for selfing the shit out of any and all available solutions, to not click ‘buy now’ on another supplement, to not sign up for the one diet that will solve it all if you just commit to eating soup for an entire month, though both of those things have worked for some. I have to depend on pieces of my self that feel shaky and underdeveloped, like faith in the belief that I will get better irregardless of western medical intervention, belief in a future where my chest doesn’t feel like a vice grip is compressing my sternum, and trust in this handful of humans who’ve shown up and been consistent in their care for me. Distilled, I have to depend, period.

My mom came for a ten day visit recently and it threw my entire recovery off course. (Ah, here we are again, self, believing that recovery is or isn’t to plan.) I’d been waiting to see her for months, which for various reasons had been delayed. Pulling up to the airport curb, catching sight of her for the first time since I’ve been sick, decades of priding myself on being totally capable of taking care of myself, through thick and thin, came to a screeching halt. I needed to be swaddled by her while I wailed, for hours, grief upon grief, for all that I am being asked to release. For ten days, we blundered our way through my needing her more than I can ever recall, likely more than even my sweet 18 month old self believed. My body responded accordingly with a sore throat, exhaustion and literal heartache, all of which I’m still feeling. Sure, we can call this post exertional malaise as common parlance in Long Covid world, but for me that term eclipses the notion that another level of transformation may also be happening, existential and ripe for the picking.

In the midst of this, my Chinese medicine practitioner emailed with a synchronous message and quote- "And do not worry your life is turning upside down. How do you know the side you are used to is better than the one to come?"  --Rumi
I’m holding fast to this during a harder week. Just today, my husband mentioned a shift he’s noticed in me that presents as a richer version of my self. Far from being dimmed, this version just has a different glow, more ambient and full, more like the moon than the fireworks of my former self. As my throat heals and my energy returns, I want to hold this notion close and remember that the self who arrived in a land of foreign disease is no longer here, already changed and changing still.