“We measure the quality of our day by the number of achievements we have. Number of documents published versus quality of work, or the number of times this week we beat personal commuting records to and from the office, or numbers of reps at the gym, or, worse, for those dieting, number of days without “cheating,” which represents even more harsh ways to harshly self-judge.
 
“We live in a culture of Other Peoples’ Success and thus exist in a competition with others for more successes than them and yet better ones. This is because, as Brené Brown, a famous sociologist, points out, we live in a “culture of scarcity. We wake up in the morning and we say, ‘I didn’t get enough sleep.’ And we hit the pillow saying, ‘I didn’t get enough done.’ We’re never thin enough, extraordinary enough or good enough—until we decide that we are. The opposite of ‘scarcity’ is not ‘abundance.’ It’s ‘enough.’ I’m enough.”
 
“I’m enough. Not “I’m good enough.” I’m enough. How hard that is to say, and to mean it to be about me, myself, and not you. It is even harder to embrace.— “Get Some Sleep Already,” October 24, 2014

I only remember my nightmares. Which means that either I do not have pleasant dreams at all (not the case) or that I have them all the time but they are unremarkable to me because I live my life under the self-centered guiding philosophy that the only life worth experiencing always feels like a victorious night at an awards ceremony, so I spend my waking life continuously happy and flinging thumbs-up signs at the world (not the case, either).

For those with a chronic condition that includes physical pain as a part of its menu of offerings, sleep is a brand-new experience each night. Just as I have to relearn some aspects of how to walk each morning, I seem to require a lesson in how to fall asleep each night. The punchline to this is I was an insomniac long before my SMA symptoms began to affect me. So now I simply have something to point at.

Every so often when it comes to sleep (and perhaps everything else) I lose my ability to think. (No one is accusing me of having had it restored yet, either.) My legs cramp during the night, a few times a week, something that happens to everyone, I believe, but seems especially common for those with neuromuscular diseases like mine. The pain is not incredible, but because it shocks me awake there is no scale to apply to it. It is probably a two on a scale of one to ten, but because it startles me awake, it feels like a twelve on a scale of one to two. Because being awakened by pain a couple nights in a row sucks, my unconscious mind’s solution was to not fall asleep. For several nights. I got exhausted cat-naps instead of anything else.

Everything that I quoted in the box at the top? Most nights, they are just nice quotes. Too bad I wrote them.

Part of the problem rests in a deep discomfort to do what I am doing right now and simply sometimes say things like “I hurt.” My non-Brené Brown inner critic tells me that “I am enough,” so thus I should suck it up. “You know,” it says unhelpfully at around four a.m., “Some people can’t even feel their legs.” My inner critic is a bully.

My inner critic tells me that I am thin-skinned and co-dependent and sensitive to insult. (Check, check, and check, please.) If and when someone expresses hurt or confusion or simply does not like something I have said or written, my inner critic tells me my legs hurt as an penance for offending others, which is an emotional equation that in the light of day reminds me that I flunked algebra in school but makes complete sense, if not very peaceful sense, by night.

This website and its associated Facebook/Twitter/Instagram projects receive enthusiastic thumbs-down comments weekly. I receive them weakly.

Ah, well. Hooray for the thin-skinned among us. It just means we care. Hooray for the too-sensitive. Let us all join forces and insensitively, but not rudely, proclaim our thin-skinnedness.

At its best, my life has moments that make sense like this, instead: My hands are losing dexterity, either from normal aging (I am 47) or the process of SMA. Some nights when we go out to dinner, I will reach to pick up a paper napkin from the top of a pile at our table and I find myself watching my thumb stroke and re-stroke the pile, pointlessly, as if I have grown affectionate for this stack of napkins. I stare at my hand while it refuses to move as my brain orders it to ddo.

From the first time she saw this till the most recent (last night), my girlfriend does not attempt to fix everything by grabbing a napkin for me, nor does she add to my breathless moment of wondering “Is this a new symptom?” by saying anything at all like that. Instead, she cheers me on in the battle, yells at the napkins for teasing me, and cheers when I win (by using two hands to retrieve one napkin). “Those napkins were rude,” she will say after. She’s cool like that.

But most nights after incidents like that one, I do not sleep My inner critic waited to tell me at four a.m. that Jen deserves better, someone who walks better, does not hurt, sleeps soundly, never complains. She deserves someone who can pick up a napkin.

You know, no one deserves my inner critic. Not even my inner critic.

* * * *
This column first appeared in 2015.

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