A Year of Narcolepsy in Review

2021 has held quite a bit in store for me. I lost the entirety of my art collection along with most everything I own in a cross-country move. I arrived in my new apartment with nothing but a duffel bag of clothes, my laptop, and my service dog.

Upon reminding myself that I had everything I needed with me there – my service dog, my health and safety, my medication – I realized that this wasn’t exactly true. I needed a bed!

Improving my sleep schedule

As a person with narcolepsy, sleep hygiene is incredibly important. Without it, I become a narcolepsy zombie. This year I made improvements to my sleep schedule. I take my medications at 6:00 AM and 6:00 PM sharp. I am often in bed by 8:30 PM and up by 9:00 AM.

I’ll admit that I don’t always adhere to this exact schedule – some days, I have to let myself sleep in. This is especially true after particularly stressful or busy days, which tend to worsen my narcolepsy symptoms.

There is a fine balance between letting my sleep-deprived body soak up the ZZZ’s while I can and indulging in the depressive rabbit hole that this lifestyle can constantly form.

Learning American Sign Language

This year, I’ve continued learning American Sign Language (ASL). I was born severely hard-of-hearing, and learning to advocate for my narcolepsy has inspired me to advocate on behalf of my other disabilities.

Learning ASL has been an empowering experience. It can be difficult to stay awake during class, but my deaf teacher is understanding of my condition. It can be frustrating, I will admit, to struggle to stay awake during class, particularly because we only meet for an hour once a week.

Facilitating a narcolepsy support group

This year I began facilitating for Wake Up Narcolepsy’s LGBTQIA+ narcolepsy support group. I’ve been a participant in their groups since 2020. Being able to give back to the community through my role as a facilitator has been invaluable to me.

I’ve learned important lessons from my peers who face their struggles with grace and optimism. I’ve learned important lessons from the people who don’t, as well – because sitting in one’s grief is necessary to allow it to pass properly.

As people with narcolepsy, we become accustomed to loss. Narcolepsy can cause people to lose friends, careers, dreams, simple pleasures, sanity – all these and more are endangered.

Dreaming new dreams for 2022

Learning to dream new dreams empowers me in itself. In 2022 I hope to hike some of the many beautiful Pacific Northwest trails nearby. I hope to get to the beach, where my service dog can run free in the sand and I can sit on a blanket, contemplating nothing but the waves at my feet.

To do so, I will have a napping station situated in the back of my car. Its presence promises that I will always have a safe place to lay my head for when my eyes grow heavy.