On Making the Bed

On many days—most days, actually—I spend more hours in my bed than out of it. This fact used to shame and spurn me. Not that the fact was the agent. I was. My bed-dwelling was cause for self-denigration.

Somewhere between my late high school and early college years, I came to believe that the bed was a stigma. It was the place for sinful lust and lazy sleep. It was a necessary evil and, as such, should be a limited realm to inhabit. I ran from my bed like the gazelle from the lion. Funny how a cat helped welcome me back into the luscious sanctuary of my nightly resting place—but let's put a pin in that for now, shall we? Something to look forward to after all of the angst and growing pains and meandering.

I have heard—and repeatedly failed to verify—that our cells fully regenerate in seven-year cycles. If this is true, then who I was, on a molecular basis, at twenty-four was an entity wholly different from my seventeen-year-old being. And from the state of my current physical organism too, writing these words at a ripe thirty-six. 

When I was growing up, I would travel and live elsewhere with my family every seven years when my dad took his sabbatical from the university. Is there a connection here, a pattern? My dad, the humble world-renowned economist full of pomp and intellectual confidence (oh, the contradictions!), would warn me here to not make such a leap in rhetoric. “Correlation does not equal causation." The tenet is etched in my consciousness as much as the tattoo on my wrist, a delicate "thrive" in my mother's expert calligraphy, her hand always touching the pulse of my heart. 

But I digress. I confess, it is a habit. This probably won't be the last time I waver. Buckle up. Or, maybe just consider yourself warned.

Why seventeen and twenty-four? you may be wondering. Why that exact era of cellular composition? What happened at seventeen? Nothing notable, really. I graduated high school. That's common for an economically stable middle-class American daughter born to two university professors. It's the norm, to be sure. 

What else? I picked a college, the same university where my father still works, the alma mater that would possibly birth my soul, should the Latin translation hold true.

My mom and I bought extra-long bedsheets for my forthcoming dormitory bunk. No longer would I rest on a twin mattress stacked atop box spring atop hardwood mosaic, lit by a north-facing second-story window, gazed down upon by towering cottonwoods and a massive gloss of shorn fashion magazines collaged to the wall. 

I was growing up. Flying the coop. Ready to roleplay adulthood and maturity. And I had my first boyfriend, who grew to become my first serious boyfriend, the first boy with whom I would share a bed overnight, tangled in hormones and flannel sheets and the conflicts of morality and longing. He was also my first heartbreak. But that came later, not right at seventeen.

Then, you may ask, why twenty-four? To this question, I can provide a concrete explanation. For, at twenty-four, my mostly myelinated brain became a feasting ground for my rebellious immune system. Autoimmunity flourished. It made its bed in my T- and B-cells, and forced me to retreat to my now queen-sized mattress, its cushioning quilted and semi-firm.

Did you know there is not a cure for multiple sclerosis? (Excuse my abrupt transition—the query rudely interrupted my train of thought. So I thoughtlessly inflicted it upon you. My sincere apologies. But do go with me here, if you please.) Did you also know that the medical minds of modernity do not exactly know the cause of multiple sclerosis? Sure, they have theories—or, rather, hypotheses, to be more scientifically accurate in my choice of language—but nothing has been definitively proven. They do know, however, how the disease works. That’s nice. That means they have been able to develop therapies that can manage the illness. 

I have been on five of these at one point or another in the past twelve years. Nearly two full cellular regeneration cycles (what percentage of therapy-to-cell-cycle is that? 5÷12? Is that even the math that I should be employing to illustrate my mental musings right now? I'm not sure. Maybe ask my father. He’s the PhD mathematician and economist, after all). All to say, I am not cured. I am only managed.

In turn, there are things I do, lifestyle choices, preventative measures, etc., to help those therapies in their disease management:

I attempt to minimize stress.

I do not smoke or drink alcohol (well, no booze anymore, but there was a soppy cellular cycle from twenty-six to thirty-five. A story for another time...). 

I exercise. Not consistently, but I have grown into moving with sustainable regularity. I’m getting better about it. I promise.  

I eat healthfully (a wonderful change from my starve-and-binge era from seventeen to twenty-four when I slept as little as possible. Was that causation? Probably not. Probably just correlation. Thanks, Dad, for helping me parse out the difference). 

And I rest. 

Oh, how I rest. Partially because it is necessary—fatigue is no laughing matter—and partially because it's regenerative for my fringed and frazzled neurons, spending 12+ hours cocooned in my bedroom cathedral, my dimly-lit chrysalis, my bear’s den—no—my lion’s den. See? I brought that leonine metaphor back around eventually. 

Please note: I am not the lion. My cat is. Fittingly. Although… an internet search just informed me that "lions generally do not sleep in dens. They typically rest in the open, under shady trees or in thick vegetation to conserve energy during the day." Thank you, Google AI, for helping me understand the fallacy of the phrase "lion’s den." I apologize to humanity for the excess water and energy that was just now frittered away on the artificial amending of my lack of pre-existing intelligence.

So. Rewind: ... my dimly-lit chrysalis, my bear’s den… where my miniature lion (AKA my domesticated feline, AKA Julius) joins me from ten p.m. to eleven a.m., just as I join him in his living room open-air den-not-den resting spot between the hours of eleven a.m. and ten p.m. We do a lot of energy conservation, Julius and I. Him because of evolution. Me because of lesions. It all comes out in the wash.

Oh goodness. I've done it again. Such excess of stream-of-consciousness roving. Allow me to return to the resting place of this entry: appropriately, the bed.

So: Twenty-four. Newly diagnosed with multiple sclerosis. Staring down a future of fatigue. And ever so averse to dwelling in bed. 

My illness did not care about any of that. My illness hungered for blood—well, myelin, actually, using blood’s circulation as a highway to arrive at its ravenous destinations. The illness being the ravenous object, not the destinations, which are the subject of the disease’s erosion: my nerve cells, my dendrites and axons, my grey matter, my spinal cord, my fatty, fluid brain. And as the illness ate, the bed rose up to catch me. 

Obviously that statement is hyperbole. I mean, I’ve had my fair share of hospital beds and MRI planks that literally raise and lower and hold my supine form, but it's not like the beds have a mind of their own. Humans are the agents in each of these scenarios. Lab techs and nurses and physical therapists and caretakers. And me. I was, and am, an agent in this too. And will continue to be so until my final breath. Or until the brilliant bioscientific researchers discover both a cure for MS and a magical remedy to give me my lost myelin back. They have made impressive strides, but I'm still not holding my breath. And since I’m not holding my breath, I have learned to embrace my bed.

And, oh, how I now adore my bed. 

Memory foam helps. Clean sheets too. And cloudlike pillows. And one of those fancy trays that transitions from bathtub accessory to laptop surface, perching on supple thread counts of bedclothes (bedclothes are sheets, right? Not pajamas? A former roommate and I got into a disagreement on this topic many years back. I don't think we ever arrived at a conclusion). Anyway, my fancy bamboo tray helps too. 

And Julius. Sweet, cuddly Julius, who snores and purrs simultaneously; and casts my surroundings in an infinite dusting of discarded fur; and licks my nose until it's chapped; and swats at me with talonless paws when his pupils dilate to the size of pennies; and has loyally accompanied me through the inescapable perils of illness. Lions, after all, are icons for loyalty.

The acceptance of my bed did not occur overnight (I fully intended that pun, by the way. I have intended every double entendre embedded in this account. You are welcome).  It took time. Maybe even seven years. But, actually, more time than that—so much for the cellular cycle motif. 

More than time, it took work. Not the kind of work you do with your hands. The kind you do with your Self and your psyche. It took introspection and self-compassion, reframing old narratives, eschewing the cultural addiction to hustle and grind. It has taken grace. It has taken surrender. It takes acceptance. Even, dare I say, an invitation for my illness to lie beside me. 

I would kick her out of my bed if I could. I have sure tried to. For many, many years. I still do sometimes. But she shadows me at all times of day and night, of waking and of sleep. She is a constant reality, no dreaming within sight. There is no severing of my illness and my Self. So I do my best to make the bed a nestling place for us both.

It has not been easy. But it has gotten easier. Perhaps when my cells fully complete their next seven-year cycle, some two years from now, we will have put our strife to bed, my illness and I. 

And then we shall sleep, shall end the heartache and the thousand natural shocks that flesh is heir to. 

Not to die, but to sleep, yes. And, perchance to dream. What an enchanting vision. Thank you, Hamlet, and goodnight.