“YOU AWAKE?”
By: Kathleen Kiddo
Tags: Insomnia, Loneliness, Chronic Illness, Parkinsons Disease, Isolation

“YOU AWAKE?”

Photo credit: Ramiro Barris

Peanut butter and jelly sounds good.

Did I lock the car?

I wonder if Karen is bringing her toxic positivity coach to the school board meeting. That didn’t go so well last time.

Does this window face northeast, or southeast? Who knew there were so many shades of white paint!

Tomorrow’s presentation sounds like pushing a broken washing machine uphill. Where is my copy of Sisyphus?

Is that our dog barking?

Would spiders still spin webs in zero gravity?

It’s 3 AM, again.

Insomnia is a common feature of Parkinson’s, and it’s hardly a unique one — all kinds of things can cause the literal waking nightmare of being constantly exhausted and yet biologically incapable of sleeping. It’d be sweet if there were some flipside to it, like: sure, I’m not sleeping, but look at all the filing and organizing I’m getting done!

Or:

Move over JK Rowling! This author enjoys going out to lunch with her colleagues during lunch hour, because endless hours of uninterrupted writing time are available…every night. Unlimited solitude!

We interrupt this broadcast for a spoiler alert: when you don’t sleep, executive function is a pipedream, even if you don’t have Parkinson’s. It’s not possible to be awake for days and also “focused.” It just isn’t.

I can fall asleep anywhere. On the bus. In a meeting. In the middle of a conversation, a wedding, an interview, or sex. (Don’t be mad honey, it’s not you, it’s me.) But staying there is a whole other thing. Here’s what insomnia does do.

It forces you to meditate. Then everything melts into peace and quiet — the noise of my pain, and the weight of the world, the ghastly burdens of loved ones. All completely dissolved…NOT.

Insomnia warps your sense of reality. All day.

If you’re old enough to remember cassette tape technology you might recall the US invasion of Panama to extradite Manuel Noriega from where he was holed up in the Vatican Embassy. If so, you probably remember how they finally got him to surrender: they blared hard rock music at him 24 hours a day until the inability to sleep became so overwhelming that prison seemed like a valid alternative. This shit’s real, people. It is a form of torture. Not sleeping can make you hallucinate. It can cause mania, delusions, severe depression, a psychotic break. Even if it doesn’t do that, it can and will destroy your ability to organize your mind. Your sensory organs start to misfire: light looks weird, shadows are exaggerated, sound processing is warped, things don’t taste normal. Even a couple of days with minimal or no sleep will (not “might;” will) affect your mood, your pain threshold, your impulse control, your sense of logic, your ability to be “rational.” Insomnia distorts the way the brain sorts information. Whether or not you’ve got a progressive illness doing a number on your brain, most of us can simply not afford to malfunction on this level, so it’s lucky if you only deal with this on rare occasions. Once it becomes a lifestyle? Not to be negative or anything but you’re totally screwed.

It’s seriously hard on your body.

Round up 100 people with progressive neurological conditions and ask them how badly they need additional pain, system disruption, or malfunction of the immune system. None of those people will say “Yeah, I could use more of that.”

The medications my body must metabolize for basic functioning, such as walking, bathing, and preparing food only work if my digestive system is functioning. Hunched over and shuffling around our cul-de-sac as the sun dips low, I have noticed the neighbors gawking and pulling their young in a bit closer. Understandably, they’ve grown wary of the howling of a pitiful beast trapped in damp bedsheets whenever the moon is round and full, Werewolves of London remains my favorite tune about long sleepless nights for good reason.

The stress of not sleeping shuts down your intestines. It can make you feel constantly queasy, or ravenously hungry even when you’ve definitely had more than enough to eat. Gut dysfunction in turn causes your inflammatory response to activate, leading to increased pain, stiffness, and movement challenges. It aggravates nerve endings: a stubbed toe or a paper cut can reduce you to hysterics. It raises your blood pressure, tanks your sex drive, destroys your balance (find me a Parkie who needs this side effect, please; I’d love to interview them) and elevates your risk of additional chronic diseases, like diabetes and heart disease. Oh, and while your intestines are offline, guess what? Emotional processing is apparently tied to metabolic processing: please visit Professor Google and ask about the “gut-brain axis” if you think I’m being colorful. Inability to process food and inability to process feelings can be inextricably tied together. It’s no surprise this predicament can turn even the most noble and genteel among us into ghastly beasts.

It’s lonely as hell.

This might sound obvious, but a key piece of the unique hell of insomnia is the feeling of detachment and isolation it often provokes. One bad night might not derange you, but much more than that without a break and you’re going to find the world has changed, and that you are now looking at it as if from under water or behind thick glass, a creepy, hyperreal-but-unreal “I live in a fishbowl” sensation in which people can see you but they cannot hear or understand you or connect with you in any meaningful way. A creepy otherness takes hold. You feel like you recently landed on an alien planet. It’s faintly hostile and you’re not sure how to work with it. No one can help you because they don’t hear sound when you try to talk, they just see an agitated person moving their mouth. Everyone knows loneliness can cause insomnia. I’m here to confirm it works in reverse too: insomnia can be a cause of loneliness as well as an effect. Probably this has both psychological and physiological components (most things do; as it turns out, the brain is part of your “physiology”), but whether it’s the brain, the mind, the ascending colon or a Satanic consortium of all three, the result is profound isolation in your own personal padded room of the mind. There you are, it’s three in the morning, the dog is snoring, you’ve already rewatched that show you like and now the cinematic multiplex in your head is showing blooper reels of every thing that ever embarrassed you as a kid. It’s replaying the footage of that time your husband cheated on you with the neighbor. It’s offering every hideous director’s cut extra from the last 40 years.

How do you fix it?

If knew the answer I’d be a wealthy woman. What I can tell you is: everything is about making the room as comfortable as possible. You will spend your last 90 bucks on a pillow. Go into debt for high thread count sheets. You will go on a Princess and the Pea odyssey through various specialty mattresses, none of which you can afford, except you also cannot afford to go on like this so…

It won’t matter. There is no mattress on earth that will stop your foot from twisting into a dystonic pretzel. Or your shoulder. Or your neck. You will watch every single short film on the Criterion Channel. You will lie on the floor, fantasize about dusting the baseboards, reject the idea because it’s exhausting. Then you’ll spend 45 minutes making carpet-angels. Maybe you’ll see something exciting, like an ant. What’s it carrying? Oh. A dead ant. Well, that’s nice. And then unpleasant analogies start running so you turn Criterion Channel back on because maybe there is a James Cameron offering that will finally put you to sleep.

But even that might not work.

“Sandman…hello…You up?”

Heather Kennedy is a ferocious Parkinson’s advocate taking what appears to be a permanent break from the distractions and perils of social media. She writes and sings as often as possible (not simultaneously). She’s a Virgo who enjoys making sand angels on the beach or watching Painting with John. During daylight hours you may find Heather somewhere in Northern California proclaiming to no one in particular:

“I’m just resting my eyes.”