Wanted: Allies

I awaken long before daylight and relish in curling up, like a cat, snug against my husband’s broad back. This has become one of my favorite hours as we slip into late Autumn, as the clock loses more of its relevance to the rising sun and all of us, dogs included, stay floating in the inky darkness of our slumber for as long as we can. Here, in the haze of new dawn, I lose track of being in a body riddled with flickering nerves and aching lungs. I take in the warmth of my bed company and the steady rise and fall of his chest. We breathe together for a bit before my shoulder tingles and I retreat to my side of the bed, our feet still touching for another minute or so like a closing remark on this particular morning.

So few moments of my day allow for escape from the narrative that is pinging between my Tcells, my cytokines, my amygdala, my small fiber nerves and countless other actors revved up about something being very askew. Expression remains the same- shortness of breath, chest pain, electric firing across my skin- while the intensity of each surges and recedes with asynchronous timing. That none of you can actually see any of this happening, even staring me down via Zoom or across a room, burdens the experience that much more. As we talk about this or that customer or how your kids are or what travel plans are on the docket, I am straddling two worlds- the normalcy of our conversation and the insanity of a body deeply struggling to reorder whatever chaos continues to ensue. On my better days, this duality is slightly irritating; on my worst days, it takes all of my impulse control not to tell tell you how much I could care less about anything you’re saying, your feelings be damned.

Living with chronic illness, especially that which isn’t visible, can feel like living an ongoing lie. I have no way to remind you that I am actually quite sick, other than to verbalize what is happening in any given moment, which is exhausting, uninteresting even to myself and can often exacerbate the symptoms. But I am not as I appear; I am unavailable to you in significant ways- emotionally, physically, cognitively- because I am working my ass off - emotionally, physically, cognitively- to get better. Even working my ass off looks different than what you’re used to; lying in total quiet for long stretches, breathing to a prescribed cadence, putting myself to bed at 8pm on the dot.

I met with a group of LC folks today who are working towards helping the Vermont Department of Health understand, and resource, the ever increasing population in our position. And while the biomedical world doesn’t have definitive ways to diagnose or treat our disease, there is a wealth of information circulating in the big wide world about how to identify it, help manage it and support those who have it. Open any major newspaper and you’ll find a number of articles about Long Covid. And still, it is incumbent on those of us living with the disease to do most of the educating. Gather your exhausted Tcells, saddle up your low cortisol and talk to the people, you humans who look perfectly fine!

If this trope sounds familiar, then you’re paying attention to at least one equity story out there. Health equity is no different. That the CDC dropped mask mandates for health care facilities is not health equity. That even my beloved friends and family casually decide when and where to mask up, if at all, is not health equity. That workplaces plan in person events without hybrid options that actually support equal access is not health equity. And while I am very much singing a tune sung by too many to count before me, it is an important one to stay sonorous. We, the chronically ill, the very much disabled, are not indebted to be your guides. Bone up. And then show up, informed, and ready to take action.

Our community in Vermont is still nascent. We landed here in 2020 and live in a rural town where most of our friends and neighbors are still in what I consider the hatchling part of our relationship. Still, we have a treasured few who live nearby and want very much to support us. In moments, I’ve really struggled to articulate what that looks like. The occasional meal is nice. Consistency, in whatever action you take, is critical, even if it’s just a simple text. (or a new Spotify song!) Joining me for a walk is always welcome. But still I have found myself longing. Until I recently landed on a Zoom call with 40 plus Long Covid folks and 10 writing mentors from the Writers Guild Initiative ready to dig in for a two-hour workshop. The sheer sight of 40ish of us all suffering in similar ways immediately leveled me. I wept during introductions, during part of our writing prompts and especially in telling my husband about it hours later. Safe. Space. While friendship is vital during this time, it’s allyship that I also really crave. And yes, sometimes friends are allies but not always.

My dad, a retired dermatologist, has taken to sending me Long Covid articles he’s been reading lately. We text much more often that we talk, which is fine for my tired lungs. We banter back and forth about the validity of this or that journalist, what my LC community thinks about this or that treatment of theory, etc. While we live many states apart and don’t always operate on the same frequency, he has declared the goal of becoming the most educated dermatologist on LC, period. Dad as ally. I need not explain.