Tethers and Navigation

One year ago, I was rushed to the emergency room directly from a doctor’s appointment. This was not my first hospitalization and I reckon it won’t be my last, but it was different in that the reality of my mortality and the loneliness accompanied by being in a space where visitors weren’t allowed because of COVID with a cell phone that had been dead for hours (the dark irony was not lost on me) …it was an especially terrifying and traumatizing few days.

I keep the ugly and scary details of that particular stay to myself because honestly, I’m not sure how to share it in a way that would fully encompass what happened. Maybe that’s because I haven’t fully processed it. Maybe it’s because someone recently told me that I overshare and so now, I’m self-conscious to give away too much. Or maybe it’s because I was alone in the moment and something, somewhere deep in the inaccessible parts of myself wants it to stay that way.

I bring it up because the aftermath of this event brought to me a sharp pivot in some internal dialogue I’d been wired to carry around for ages. The same doctor who rushed me to the ER, in our follow up appointment a week later, sat in the chair adjacent to me and told me that none of this was my fault. That story here (please give it a read if you haven’t—it was a beautiful and powerful moment that I hope will happen more often for more people; real, empathetic validation from a doctor to a chronically ill patient): https://adonkumentary.com/2021/05/30/single-statement/

True, hearing this from a highly accredited, top-of-his field medical professional brought to me validation that I so desperately needed, that I still find myself tearing up over it today. But validation of my feelings only pokes out of the water like the cliché tip of an iceberg. It’s something concrete that I can (and we all can) see—what’s happened to me because of my health isn’t my fault. I can hear that doctor say those words and despite the fact that I’ve been hardwired to believe otherwise, I’ve got that statement to tether to.

But that’s not it, is it? Beneath the water is a sack of ice so large and immeasurable (and constantly changing in the current and climate) that simply seeing this one little peak of truth only serves as a reminder that there’s so much more I can’t see.

…and that’s where I gum up. As soon as I start to imagine the complexities in which this truth sits atop—that being chronically ill isn’t my fault—my mind becomes overstimulated and I sweat and shake because of just how heavy it is under the surface. Like trying to imagine the size of the universe, I just don’t think I have the bandwidth available to sort through every little nuance that comes along with being sick in a world not built for sick people.

So, I steer away. A ship who sees that truth on the horizon, I steer far and wide around it, scared I might crash into the reality that chronic really can (and often does) mean forever. Scared that I might sink into the overwhelming fatigue, pain, and sadness that comes with unavailable and/or inaccessible treatments that could be the very thing to help keep me afloat; afraid to burden the other ships passing me by because my load is so much heavier. I pretend I’m fine and don’t (and would never) need a tow.

I steer away from the countless times I’ve been told by other doctors and medical professionals that, “it’s your anxiety, it’s your anxiety, it’s your anxiety,” which puts the ownness completely on me to fix. “It’s your fault, silly girl, now quit being hysterical and go do some breathing exercises. Drink more water. Hop into any ole’ yoga class taught by someone who knows as much about yoga for people with neuropathy and POTS as the potato rotting in the bottom of your fridge. Whatever you’re feeling, let me be very clear, is your fault so you need to fix it.”

I steer away from the guilt I feel when I get upset at the questions or comments I receive from others about my illness. No one means to hurt me when they say, “so you’re feeling better?” But asking the question forces the answer: no. No, I’m not. I’m just not spending every waking moment discussing how terrible I feel. I don’t know if I’ll ever feel better and now, I’m back to contemplating forever. But I love that you’re concerned. And thank you for being there. But please only ask these questions or those.

How can one navigate that territory? Do I write a handbook on how to have a relationship with me? Here, put these bumpers on your lane before you bowl here, please.

I steer away; it’s just easier.

I putter along in my ramshackle boat watching everyone else pass me by, obsessively avoiding what I can’t see under the surface because I fear it could end me. I cork holes when they spring in the sides of my ship when I find them, knowing they probably won’t last—they haven’t thus far.

I gum up. Writer’s block. Creative shut down. Recluse deeper into my shell. Fear of honesty but also desperately craving it?

It’s just so hard.

But sometimes you are seen and despite that not taking the pain away, it reminds you that if you needed it badly enough, you could shoot a flare and someone would be there to see it—to know that you’re there and you’re struggling and maybe they could just pull their boat alongside yours so you don’t feel so lonely (like my friend from this post).

Maybe it’s someone in their own shanty ship using every ounce of strength they have to keep going and seeing your flare gives them hope. Bursting reciprocity.

I happened across a post on Instagram by author and Psychotherapist, Daniell Koepke, which resonated profoundly. Stumbling and tripping over my own, clumsy feet as my ship rocks side to side, she shared some words that felt like a lighthouse. Something I could steer towards. That post here: https://www.instagram.com/p/Ccnmj0Erf1t/?utm_source=ig_web_copy_link

Here’s a snippet from that thread:

“…Creating a world that values people with chronic illness, disability, and pain means challenging the belief that health is a moral virtue. It means we stop vilifying people for being sick and recognize that bodies have different abilities and limitations. It means affirming that disabled and chronically ill people do not need to “overcome” their limitations in order to function like non-sick and able-bodied people—that many of us can’t overcome because there’s no cure; that what we are able to do and give is allowed to look different; that what we can do and give is enough, and still matters…”

– Daniell Koepke, M.S.

The pieces of this heavy sack of complexities that Daniell addresses are incredibly important. She gave words to feelings that I’ve been either shying away from, throwing things at, or falling short of finding any sort of viable explanation for. I thank her for that.

In a world where a lot of discourse amidst this pandemic has been, “it only affects the elderly and people with underlying health conditions,” it’s very easy to feel sacrificial.

My therapist told me last year that I’ve obsessed over a diagnosis—that I’ve put all my hopes of a happy future in the hands of a concrete diagnosis. Sure, I have a couple solid, diagnosed pieces: neuropathy and POTS. But then there’s this unnamed auto-immune condition. Something that’s attacking my entire autonomic nervous system but no one can figure out what it is. Something weird with my bone marrow. Some other numbers that don’t make sense but are scary, at least.

It’s that unhealthy equation that none of us should be living by but so many of us do (even if we don’t realize it): “If I could just _________ then I can happy.”

My blank is filled in with “find a diagnosis” because in my mind, that means, “if I could just get a solid diagnosis which encompasses all of this, then I can find a cure and I can be happy.”

But a diagnosis doesn’t always mean a cure. And a diagnosis more than what I’ve got might not ever come, either. So, does that mean that I can never be happy?

I come back to what Daniell says, “…chronically ill people do not need to “overcome” their limitations in order to function like non-sick and able-bodied people…”

Somehow, someway, I have to find a way to walk along the line of not assigning all of my hopes and happiness to getting an “all-encompassing diagnosis” while also not giving up hope, continuing to do my best to feel my best.

That, my friends, is a very, very hard line to find, and for the people in my orbit, I’m sure an even harder line to find.

But I think that’s what this entire post is unfolding to show: that it’s worth finding that line and that it’s probably a lot easier to find when we work together.

I think you can tell your loved ones how much it means to you that they are rooting for you to feel better and that their optimism inspires you. At the same time, that it’s difficult for you to feel hopeful when you feel so bad, so let’s not focus on fixing me all the time, okay? Hold my hand, help me find this path that we can walk together: the one with a lot of benches so I can sit down and catch my breath and while we’re sitting there, let’s talk about anything but my illness, because I’m so much more than it.

I’m so much more than my illness.

More from Daniell:

“…It means recognizing the value and merit of interdependence and acknowledging that none of us are truly independent…”

It comes to this: we all have to do a better job communicating with one another, remembering that also means listening. Really, really listening. It’s a good thing to establish boundaries. It’s a good thing to express needs. It’s a good thing to cut loose the things that poke holes in your boat. It’s a good thing to see and hear those who need to be seen and heard. It’s a good thing to do your part to lift others up, even if you get nothing in return from it. It’s also cliché, but truly, we are all in this together. We can’t forget that.

“…none of us are truly independent…”

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