i want to change the world/instead i sleep

Although I have absolutely no interest in writing a novel and have thus ignored NoNoWriMo for a decade, I fully intended to write at least a little bit this year for this blog.

I failed utterly.

I meant to write about my adventures reading the last 15 years of Marvel Comics in an attempt to better understand the Marvel Cinematic Universe.

I didn’t.


I meant to write about my obsessive collecting, ever since was I was a child, and how I’ve used it as a way to stave off mania and anxiety, and how often that’s backfired on me.


I didn’t.

I meant to write a post that has been percolating for almost two years now, about music videos, because that’s obviously totally relevant to the year 2015.


I didn’t.

I slept.


My struggles with chronic pain have become more consistently overwhelming than they were in the past. I know there’s an autoimmune component; that’s been clear for a long time. But it’s not specific enough to really find anything to do about it.  Meanwhile, whatever the root cause, more and more afternoons, the only times I have free, are spent with a heating blanket wrapped around my neck and my head, in a desperate attempt to relax the spasming muscles that press on my occipital nerves at the base of my skull for at least a little while, before my children return home and engage me once again in the physical endurance test that is inherent to raising two sensory-seeking autistic kids under the age of 7. The specifics aren’t important.  Suffice it to say, when you combine an obstinate four year old mentality with the need for heavy pressure, everyday tasks become a much bigger physical challenge than anything those sadists at Double Dare ever managed to come up with.  And I don’t even win a new pair of British Knights or a Casio keyboard at the end of the day.


The fatigue is constant. I find myself drifting off when I’m sitting next to my son in the morning, much like a couple years ago I was drifting off behind the wheel.  I had a sleep study done back then.  Nothing out of the ordinary. No reason for me to be so tired; nothing obviously dysfunctional about the amount or quality of my sleep.


A few months ago I had a really crappy experience with a neurologist who clearly wrote my symptoms off as psychosomatic as soon as he saw the words “bipolar disorder” on my chart.  He did a standard neurological exam on me, even though I could tell him I wasn’t actually experiencing any of the vertigo or weakness or aphasia or tremor at that exact moment (it takes a little while for a referral to go through, after all), so obviously I would pass.  He told me I didn’t have MS or Parkinsons or Huntingtons, which I knew, and thus he was uninterested.  Tears welled up in my eyes when I asked him why, if there was no obvious neurological cause, I was having neurological symptoms.

He suggested yoga. Or maybe swimming.


I left the office holding in my sobs.

He sent me for a nerve conduction test, I think maybe as a sop so I would feel like something was being done. If you haven’t ever done a nerve conduction test, don’t.  It involves being poked with a ton of needles and then mildly electrocuted again and again.  The neurologist at the testing site bounded in like an oblivious puppy dog: “Good news, you have no signs of nerve damage!”


Yes, obviously that’s good news.  I didn’t WANT to have nerve damage.

What I wanted, though, was something approaching an answer.  He gave me none.

I’m starting to feel a little desperate.  I’m flailing. Recently I’ve had wildly fluctuating blood pressure readings.  Could I have some sort of dysautonomia as a result of autoimmune illness?  Maybe, but there’s only one doctor in all of Western New York who specializes in dysautonomia, and she doesn’t take insurance and seems like a bit of a quack. When I called the local headache clinic to see if they could help me with what I’m convinced is occipital neuralgia mimicking a lot of migraine symptoms, I get told they aren’t actually taking new patients (despite their ads on the radio) and are instead referring to the neuro center in Buffalo, over an hour away.


(Side note: When I hear politicians saying that single payer health care would be a disaster because people in countries with universal health care have to wait a really long time for specialists, I just shake my head.  What universe do they live in, that they don’t realize the same thing happens in this country, we just pay absurd overhead and out of pocket costs for the same shitty care?)

The day I took a shower and the water running onto my face burnt like fire, I got out of the tub and stared at myself in the mirror in shock.  The skin on my face was so red and raw and dry it was peeling off in flakes.  I have to wear two layers of moisturizer, repeated throughout the day.  I really like my dermatologist, she’s an old friend, but there is literally no point to going back to her every time I have an obvious cutaneous autoimmune attack.  Because it means nothing more towards the overall picture; it’s just another checkmark in the same column that gets checked over and over.  When I’m flaring, my skin flares brightest.


Some days I can’t squeeze the gas pump long enough to fill up my tank.  Whatever is going on in New York State that apparently mandated the removal of the little flip-down bars on gas pumps so you didn’t have to stand there squeezing like an idiot, I’m pretty sure it’s a violation of the ADA.

But whatever.  Some days I can’t squeeze my shampoo bottle hard enough for anything to come out, so it could be worse.

At the beginning of the year, I went to my daughter’s classroom for the yearly open house.  The teacher told us that one of the first activities the class was doing involved the concept of “filling people’s buckets” — some sort of convoluted metaphor for thinking of acts of kindness you can do for other people. Up on the wall were a few rows of orange buckets with semi-legible first-grader handwriting on it.  I scanned the wall, not sure if my daughter would have engaged in the exercise, and after a few seconds I recognized a couple of telltale letters that immediately identified the writing as hers.  My first reaction was shock and pride at the fact that her handwriting was actually better than most of the other kids, and she had written a longer sentence than almost anyone.  Fine motor skills are a challenge for her, and writing long chunks of text are a real source of anxiety.  I was so impressed that she had risen to the task.  And then I read what she wrote.

The way she could fill someone’s bucket was to “be nice to mom because she always hurts.”


I am broken, and my children know it.

So when they’re gone, I sleep, because then maybe when they’re here, I can pretend not to be broken for a little while.

And that’s why this is my only post for NaBloWriMo.

I suppose there’s always next year.



1 thought on “i want to change the world/instead i sleep

  1. Wow. Just…wow. *hugs* for you (not too tight), and I love your writing, but I understand if it’s too taxing to do regularly. Just write when you can, and I’ll read it.

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