I’ll just say it: my mother was a toilet paper hoarder. It’s more interesting and instructive than that, though, and I as I’ve reflected on it, I think it applies to other facets of life and coping with uncertainty and adversity, particularly at times of disruption and upheaval. For this year’s Ehlers-Danlos Syndrome Awareness Month essay, I’d like to examine that (though, sorry to disappoint you, there will be nothing particularly scatological here).

Allow me to paint the picture. I grew up in a house with 1 ½ bathrooms. The toilet tank in the small half bath on the main floor was lined with several rows of Scott Tissue (do I get any kind of endorsement bucks for the plug?). The full bath upstairs had a radiator also lined with several rows of the same. In both cases it could be viewed as a museum exhibition of the history of Scott Tissue packaging, as there would often be three different subtle variations on that amidst the topographical layers. This (along with other, similar relationships with certain other “staple” products like cat food) was the source of much good-natured teasing, but it was fairly benign in the sense that it didn’t fit the stereotypes of hoarding (overflowing into other rooms, etc. – indeed, the AMOUNT of toilet paper, while more than was being used, remained impressively uniform). Still, it was a consistent pattern for as long as I could remember, familiar enough that I took it for granted and never looked that closely at it (at the pattern, that is – when sitting on the upstairs toilet I had no choice but to look at the toilet paper).

Fast forward to March of this year, when suddenly “toilet paper scarcity” became a thing and people hoarding it became a phenomenon that garnered broad awareness. As I observed the unprecedented (in my lifetime) phenomenon of people actually not being able to get toilet paper when they shopped (and/or not even being able to shop safely in the first place), I wondered how my mother would have handled the stress – she would have on the one hand been well-equipped to weather the scenario, what with all the stored-up TP, but to deplete that supply would have pushed her far outside her comfort zone. As such, gradually a light bulb went on and I began to understand my mother’s pattern and how, while the specific behavior might have been quirky, the underlying craving for security is far more universal.

She grew up under challenging circumstances. As she was a private person, I will not get very specific out of respect for her memory, but as a youth she experienced multiple layers of instability, domestic and financial. The lingering doubts and fears that came along with that followed her throughout her adulthood and fueled several compensatory behaviors, and one of those was the toilet paper pattern. Basically, she couldn’t bear the idea of some circumstance (illness, snowstorm, other interruption to shopping access) leaving her ill-prepared to ride things out. I don’t know if she ever quantified the amount of toilet paper that would be “enough” to ease the anxiety or if it was more intuitive, but either way, there was a “sweet spot” that made her feel more at ease. As I got older, I did gradually understand this aspect of things, though I never perceived that I could relate, not until confronted with the possibility (thankfully not yet manifested) of running out myself.

As such, I began thinking about what it really meant for her. In essence, her default state was one of substandard inner security, an inadequate sense that everything would be okay. Anything that could fortify her line of defense against difficult times was a source of some ease, some relief. Did she rationally perceive that she was in danger of having to use the shower as a bidet? I think that’s probably beside the point in the same sense that it’s beside the point what rational discourse is needed to debunk a scared child’s fear of the monsters living under the bed. A certain degree of fear or uncertainty naturally leads us to crave reassurance that “it’ll be okay.” Ideally, children receive that reassurance in the form of affection and attention and stability and generally compassionate, responsible care from the adults responsible for them.

So as adults, how do we navigate that desire to feel like things will be okay when those kinds of anxieties flare up. And most especially, how do we navigate that when telling oneself “everything will be alright” may not literally be true? I know I’m not alone right now in an unresolvable dichotomy, in that I desperately crave that sort of reassurance and at the same time I would be incredulous if it were offered since it is so obviously not true (the state of racial justice in our country is NOT okay . . .  the state of public health and politics amidst the pandemic is NOT okay . . . I won’t go on).

This is where life with Ehlers-Danlos Syndrome has at least provided me with the silver lining of being somewhat prepared. This week I found myself reminiscing about instances in my late teens when my entire future was being called into question. Would I be able to keep doing music? Would I have any career at all? Would I even be able-bodied enough to navigate something resembling a self-empowered life and/or a life without constant and overwhelming pain? I’ve written at some length about inspiring people or moments in my past that allowed me to get past these periods of despair, but what about the times leading up to those moments or transcendence or heroism or even legitimate cause for hope? This is what I’ve been reflecting on, remembering how I even got through.

What I’ve realized is that I DID comfort myself, but it was more esoteric than any contrived and insincere self-assurance about specific outcomes that I couldn’t legitimately control. Instead, there was something in me, something I painstakingly and often painfully cultivated over time (eventually, though not initially, through conscious determination), that gave me a sense that I could endure. And if I could endure, there was at least a broad level at which things would indeed be alright, even amidst suffering, even if my life or those of people I loved were turned upside down. As I have experienced since through both global and personal tragedy, that sense of knowing I can go on is powerful and important even if I can’t imagine a satisfactory resolution of the adverse circumstances.

And in that sense, maybe I was and am not as different from my mother as I thought, except that I swapped out the toilet paper for something internal, something that is less vulnerable to shopping access or supply chains. And so it goes in these challenging times. I would like so much to be able to wrap this up with words of specific reassurance for everybody reading this, reassurance about your capacity to remain healthy, about your loved ones’ safety, about society becoming more just and equitable, about fiscal health and flourishing relationships and the pot of gold awaiting us on the other side. I can’t do it, though, and I can’t claim that this perspective is some sort of magical elixir that will spare you from sleepless nights or worried days. But I can cheer you on as you seek and cultivate your own inner toilet paper and I can assure you that it’s worth the effort.

One Responses

  • Justine

    I don’t know if I’m just particularly emotional right now, but this brought me to tears, Noah. Thank you, for your music, for your wise words, for your constant compassion, for your grace.

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