She Looks Awake

I love museums.  I feel happier and safer in museums than almost anywhere else in the world besides my bed.

Me in my bed. Me at the National Gallery. I’m equally happy in both. Okay that’s a total lie, my bed always wins, but it’s pretty darn close.

So you can imagine my frustration when I got to the Ogden Museum of Southern Art on Sunday morning and I couldn’t read. As I walked the short distance from my Lyft to the lobby, I knew it was a bad day. I was a zombie. My head was cloudy, my eyes were burning, my sinuses felt congested, noises hurt my body, my hair hurt my head: all the things a person feels if they haven’t slept for 72 hours, except that I had.  As I focused on putting one foot in front of the other, I reminded myself that it was okay if the only thing I could do was stay standing. And if I couldn’t do that, then that’s okay too.

My intention was to learn, to be challenged, to be present. But the reality is that I’m not here. I’m not actually anywhere. I’m not awake, and I’m not asleep but rather in a purgatory dreamland that drains my energy before it’s ever restored.  Breathing is exhausting and as my shoulders fall slightly on the out-breath I fight to keep my whole self from falling to the floor.

I’m fit, an athlete, but narcolepsy doesn’t care.  My heart races, my breathing is shallow, and my legs burn after walking – slowly – up the museum stairs.

Before my diagnosis, days like this gave my abusive inner voice all the material it needed to eat away at my self esteem: the doctors say you’re perfectly healthy so why do you insist on making everything so damn difficult for yourself? You know how to read so stop being a lazy slug and just read!

The power of a diagnosis is that I finally have science on my side and my jiblets (the negative inner voices), as terrible as they are, seem to be persuaded by science. The results of my sleep study show that I am under the wrath of eternal sleep deprivation because my brain is 70,000 very-special-neurons short of having a regulated sleep/wake cycle.  My epic sleepiness, forgetfulness, klutziness, etc, stem from an insufficient amount of the neuropeptide orexin/hypocretin.  Boom.  Jiblets killed.

I fill my phone with photos of things I wish I could have learned at the museum but didn’t have the restorative sleep to comprehend and synthesize.

The museum is gorgeous and the pieces and subject matter are distinct from things I’ve seen at other galleries: race is a key theme, as is the unique southern landscape.  Or at least that’s what I can gather when I review the photos on my phone.  I find a book of letters from school children in NOLA to Trump following the election in the gift shop. The proceeds go towards a youth writing center so the purchase is a no-brainer.

I snap a few more shots before leaving the museum to meet my husband at the coffee shop where he’s working.  My college BFFLS text me – we’re in NOLA for our friend’s wedding – and they’re trying to get me to join them for brunch.  I want to want to go, I want to “seize the day” and “live life to the fullest” but when I get to the coffee shop and see the inviting surface of the table all bets are off.

Me 53 seconds after arriving at the coffee shop.  My husband was ridiculous while I was napping.  Twice he got in my face and made a noise similar to the one we make when we’re trying to get the bears to stop clawing at the couch.  And then he started playing the piano.  Alternatively, none of those things happened and I was tripping on an intrusive REM cycle.

I miss brunch with my girlfriends but a few of us meet up later on to wander around the Garden District.

On bad narcolepsy days like these, and sometimes weeks, I have no personality, aside from being a friendly shell. I don’t have the energy to express my opinions so that we can have an energetic exchange of ideas. You’ll think I’m a ditz. I might trip and fall (cataplexy) but I’ll giggle through it, pretending it’s okay. The best defense is a good offense and I’d rather own “personality-less ditz” before you can assign it to me.

If you could see past my puffy, sleep-deprived face and meet me beyond the purgatory dreamland that’s engulfed me as completely and as delicately as a spider web, you would find a woman who has lofty goals and ambitions, opinions and ideas, and yearns to not plan each day around horizontal surfaces. I stay hopeful that I can find my way back to “her” again tomorrow.  Hopeful that we can meet up to live the life that we have planned for ourselves and be challenged by things that are bigger than sleep.

Disclaimer: I take stimulants to “manage” my narcolepsy.  My symptoms are VERY different when I am unmedicated.  Please don’t self diagnose.  If you came here thinking that narcolepsy was your answer but you can’t relate to my story, that doesn’t mean a thing.  My symptoms might be different from yours. Or we might use different words to describe our reality. We might experience our symptoms in different ratios. Narcolepsy, and sleep disorders more broadly, are complex and misunderstood.  Speak to your doctor or a specialist about your concerns.

2 thoughts on “She Looks Awake”

  1. […] We got back from NOLA, I took a yoga class/guided nap, and then I picked up my first Xyrem shipment.  My anxiety level was at 1000.  What is it going to feel like? What is it going to taste like? Am I going to have insane side effects? What is it going to be like to wake up in the middle of the night for the second dose? Am I going to feel totally drugged in the morning? Am I going to stop breathing?  I cried, I was so scared.  I’d say it was kind of pathetic but I’d be selling myself short.  The decision to take Xyrem is a life-changing one.  Xyrem is THE DRUG and at this point all of my eggs were/are in the Xyrem basket; if it doesn’t work out, there’s nowhere else for me to go except back to the drugs that I use to make me look awake. […]


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