The POTShole

Image of person with digitally altered skin on face to resembled a cracked paved road below which is a road with a pothole filled with water that reflects the subject’s face.

I like the word play of a — POTShole. I think it may be from growing up in Pittsburgh which by the late 70s had become the pothole capital of the world.

Indeed having old school POTS before the pandemic made it trending was an anomaly at the turn of the century. “My mom has POTS“, my teens would tell their friends. “Cool! Can I come over?!” (puff, puff, pass). Funny, cause when I was a teen my mother DID have POT and booze and ludes and occasionally cocaine. At the very least, I grew up in a funny house where we learned to normalize (numb) dysfunction. Which of course may be why my three stand up comics are all headliners in the dysFUNctional autonomic system club, because humor was the one good thing worth carrying on.

For the chronically ill with a life limiting illness there are daily issues and lifetime struggles. So it may seem odd to talk about a significant period of “bad health.” Right? Cause you are sick already, how much worse can it get? Sadly it can get really bad. Sometimes really quickly. And these are the dark times that I often call the POTSholes of having POTS.

At the beginning of my diagnosis I would have spells when I would go out on short term disability because I was literally too sick to stand and deliver. I didn’t even REMEMBER some of my down times, until I started looking back through my old journals. I don’t actually keep journals, I have a series of email messages to my SELF that get filed by automatically filtered subject lines into various folders kind of like spam 🙂 never to be seen again.

I also found MYSELF in a Google search dating back to 2008 in a forum that I SWEAR was private at a time I was a constant contributor. But somehow after many change of hands at the head, the discussion threads are now all open to the world. It shocked me of course, for one … dang, that’s not cool. But more so I was surprised by reading how the younger me was describing symptoms so close to what I am experiencing now but thought they were “new”. Clearly I tend to push the REALLY BAD TIMES out of my easy access memory chips. We all handle trauma in different ways, eh?

ID: Person squatting on the floor using a food processor on top of a wood table top also directly on the floor.

I found there were POTSholes as far back as 1981. Then every few years, 1992 (hospitalized), 1999, 2004, 2008 (hospitalized) and I was even in a hole in the beginning of 2011 when I first met Mr Monks in a virtual world where I came to realize my Avatar was never too sick to dance. I have more clear memories of falling into the abyss in 2014 during a difficult and stressful time. I remember how I couldn’t do even simple tasks without tremendous help from those around me. I would eventually change my kitchen all around so that I did dinner prep directly on the floor in a tight squat.

So while I have ideas about what caused this current sabbatical from sanity and self which began last February … I doubt the details matter as much as the process and the practice. And for that I am grateful to my family who have each stood by me night and day during the throes of what I can only describe as barely living hell. Reminding me to hydrate as best I could, making fresh salty broths and helping me keep tabs of what foods were helping and what seemed to be making matters worse. I’m sure as I recover spoons, I’ll make cross reference in the RedneckVegetarian so that we have POTShole tips for … the next time.

While I am often introspective in the moment, I tend not to want to write when I am deep inside a POTShole. Because in truth, each time I enter the belly of the beast I wonder if I’ll ever escape the jaws of the whale. And to be honest, this time has been bad in a way I will likely not remember. So unless I post about this at length in a random chat group that will also be set to global view in 15 years, it’s unlikely I will have a “record” of what happened.

I certainly don’t have a story about what doesn’t kill us makes us stronger because my direct experience is what doesn’t kill us leaves us with PTSD and trauma triggers that run so deep we can’t help but fall into the same rut in the road every time we walk down that street. Indeed if I held firm to my reluctance to write at any cost, I wouldn’t mention this latest season of suffering, because it has not in fact passed. I can’t talk about it in the past tense because I am still not back to the illusive remembered self of even 2021. I did however make coffee twice last week. I started eggs a few times. Made mac n cheese once not withstanding an hPOTS flare that hit HARD letting me know I wasn’t ready to be standing or even sitting up for 30 minutes all in a row. Not yet. And it may be down the road here, I figure out new strategies that help me do more.

It took me much resistance to finally break down and admit I CAN NOT shower and dress myself in the ways I had been use to. Even simple things like putting on my very loose capri pants were a deal breaker as my heart rate soars to 145 as I struggle with post hoc shower perdition. Resulting in surrender to the fact that showering isn’t going to happen more than once every three days. And even then my definition of “shower” now includes bending over the threshold and shampooing my hair we take what we can get.

So it’s been a messy time … on every level of existence. And I don’t know where the ride stops. But I can say with great confidence that I am so very fortunate to have family who are willing and able to help night and day. I know so many disabled people who do not have adequate resources, housing or access to medical interventions and it is heart breaking to know that without the extraordinary efforts of a handful of people that would be me.

id: Two people sitting on a wooden structure holding a small dog (schnauzer) and a hairless dog on the ground.

So today .. I decided I’d mention the hole I’ve fallen in. Breaking my silence and yet still not really saying anything much at all. True to form. And knew I wanted a picture. So, I looked over to the redneck who was enjoying his cup of coffee and said softly .. “I haven’t been able to take a pretty picture in a very long time. Can you put the tripod by the cat tails and can we just take one quick picture?” Even with a come as you are, it still meant he would need to put down his coffee, grab his hat — I’d take my hair down from it’s perpetual messy bun and we’d grab a dog cause that’s apparently what we do. But I wanted that one picture. To remind me that progress is slow, but I am doing better than I was. I don’t know what happens next, but I’m here in this moment and that will have to suffice despite any story of “not enough”, “unfair”, “I can’t handle”. And that’s what we did. I was back in bed within minutes. Cursing that the pictures were awful, I was too tired to take them again. But after the orthostatic FEELS fell away … I saw that they were perfect. This is just what perfect looks like, when you are coming out of a POTS hole.

Then of course I got to drawtograph with them endlessly in AI photo editing. Because some of us process our pain with paint.