The Girl Who Does Not Sleep

Once upon a time, a certain child was born (and you know who I mean. Me!). This was a much-awaited child, a beloved child, but she was born very small. To keep her alive, she was put in an incubator, basically a plexiglass box where only nurses could touch her to change her tiny diaper and adjust her tubes.

Her family would root for her from the hospital hallway through a glass window. Finally, someone waiting and watching saw a sign that she would live and that she would be a thinking person. The nursery door slammed, she jumped, and her grandfather was delighted. He declared that this small, jittery person was going to make it.

The Awake Baby

This is one of the stories that defines me.

I’m three months old here, which, if you know babies, you’ll know this is a very small baby. I weighed three pounds when I born, and I grew very slowly.

I have recently discovered a million pictures of me being held like a doll baby by various family members, who, I’m told, never wanted to put me down. They used to tell me that because I stayed small for so long, I was fun to dress up and play with. This is neither here nor there for this story, but I like the pictures.

This is what happened when I was put down. Now, I know a lot of babies don’t sleep, but I did not sleep. As in, my mom took pictures like this to show the pediatrician as evidence. “I go in there to check on her any time at all and she’s standing there, wide -eyed, with a crazed expression.” I remember that feeling because I still have it.

A Child on the Go

Once I was set down and on the move, I was hyper. You know the type.

Take this small doll baby who moved all the time, and add in some eccentricities. Like walking with non-shoe items on one foot.

That first would be a butter dish, and the second a dust pan. There were others.

This all kept up: for example, the school bus driver threatened to kick me off the bus for constantly moving.

I could go on and on with stories from my childhood and extremely cute photos, but I’ll skip ahead begrudgingly to the point of this story.

My Made-up Evolutionary Explanation

My problem is: the more tired I get, the more wired I feel. And I am a champ at feeling wired, ever since I flinched in that incubator. I have a theory that I claim is rooted in evolutionary biology.

Imagine you’re a prehistoric person low on sleep; maybe you’ve got bugs in the your bed furs or you’re planning how to divorce your cave mate. Then imagine a wildfire is creeping up on your encampment, so you have to leave your cave and really run to keep in front of the fire.  Day after day, you’re running to stay ahead.  Some nights you can lie down and rest a bit, but even then you can’t afford a deep sleep because the fire might sneak up on you. As you get desperately tired during these rests, your body gets twitchy to keep you from falling asleep. 

With this theory, being wired is a survival mechanism that flips on when you get super tired. Why else would a person be so danged tired unless they were running for their lives, right? In which case, sleeping is the last thing you should be doing.

I know this is actually about dopamine problems in the brain and is called Restless Leg Syndrome. Heck, maybe my theory is right, too, though.

Restless Legs

RLS has a scientific name that makes it sound serious (Willis-Ekbom disease), but in my family we called it the wiggles, and the ideal cure, as my mother would routinely ask for, was a velvet-covered mallet applied firmly to the skull. (We didn’t oblige.)

As you can guess, it’s genetic: Mom had it, I have it, my niece Katherine had it very badly in the hospital, and Finn has just the wee beginnings. A few facts: it gets worse as you age; certain life events can bump it to the next level of severity (like pregnancy and forced stillness in the hospital); situations and meds that make you sleepy trigger it (like sitting still or taking NyQuil). At its worst it feels like opioid withdrawal, because a dopamine deficiency is partly what’s going on. There are more facts, but you can read that stuff online from actual experts.

I began practicing good sleep hygiene 20 years ago. Bedtime routine, slow yoga, no caffeine, yadda yadda. Please do not ask me if I take melatonin or sleep with soap by my feet or use a weighted blanket or meditate. Yes, yes, yes. 20 years ago.

RLS is a problem in the same part of your brain that is messed up enough to produce Parkinson’s Syndrome. They are related involuntary movement disorders. So, back 20 years ago, neurologists prescribed the same meds, just one level of dosing for Parkinson’s patients and one for me.

What we now know is that most people with RLS on these meds for as long as I’ve been on them have built up an immunity, but, here’s the kicker, the meds have also done something funky in the brain so that now they compound the problem. So, all the meds I take make the wigglies worse, and I pine all the more for that velvet-covered mallet to the skull.

My specialist neurologist in Houston has recommended an even more specialist clinic here in Madison: a neurological movement disorders clinic, which I was thrilled to find. After weeks of getting records transferred here, I’m told by this clinic that it will take “several months” for the triage team to sort through the records and rank me among all the applicants for scheduling and get me an appointment.

Meanwhile, at night I still look like this:

And by day I am zombified by meds that sometimes help and sometimes hurt. I know, it doesn’t make sense. But, that is the story of the girl who does not sleep. It’s also been written in the middle of the night, so it ain’t that great. Really I just enjoyed looking at childhood photos.

Bonus content: more photos of family members on sofas, this time with dogs.

And that’s a great way to end this strange post.