When I was a child I would visit my Grandma Ruth in Los Angeles and stay at her single story ranch style house. My grandma was what you would call “a piece of work”. She was stubborn, abrasive and difficult. She was also wildly entertaining, a tremendous storyteller, and an adventurous, independent spirit. She squeezed everything she could out of life. After my grandfather died Ruth spent years traveling around the world by herself, and her house was filled with artifacts from various trips: Matryoshka dolls from Russia, cork paintings from China, figurines from Eastern Europe. I looked forward to my trips down to LA because Ruth’s house seemed like a wonderland and Ruth its magnificent creator. In addition to the exotic objects collected during her travels there were bowls of mini Tootsie Rolls in every room and citrus trees in her backyard. Escaping from the San Francisco fog to Ruth’s sunny SoCal home breathed new life into my sister and me. Ruth took us to the La Brea Tar Pits and the Los Angeles Museum of Natural History, where she was a docent. We window shopped and saw movies at the Century City mall, and she would take us to her favorite cheap restaurants.

When she wasn’t traveling she volunteered at a local elementary school where she would recite poems to the kids. One of her favorites was Robert Louis Stevenson’s Time to Rise:

A birdie with a yellow bill

Hopped upon my window sill

Cocked his shining eye and said,

“Ain’t you ’shamed, you sleepy head!”

I spend a lot of time in bed these days. I sleep late whenever possible and often take naps while my kids are at school. It has been something of a surprise to find that my favorite time to be in bed is the middle of the day. I wouldn’t have expected this as I rarely napped before becoming sick. Though my head and heart are often disgruntled when they realize they are about to be put back in bed (especially when the sun is shining and the birds are singing), my aching body is usually thrilled. It sighs with delight at the delicious feeling of cool sheets and soft comforter. I pull my blinds down but leave the sliding door open, allowing fresh air to wash over my resting form. Often my cat Abby nestles at my feet, keeping me company. I’ve found I drift off quickly during the day. There isn’t the pressure of achieving a good night’s sleep.

At night I’m the Princess and my mattress is the Pea. Nothing feels quite right. I adjust the hem of my tank top so it doesn’t dig into my hip. My right ankle rests uncomfortably on my left shin. In the dark and quiet all of my aches and pains are thrown into stark relief. I try to find a comfortable position. I want to twist my limbs into a crazy arrangement in order to ease my symptoms, but I am conscious of my sleeping husband beside me. He is lucky and falls asleep most nights as soon as his head hits the pillow. I attempt to make subtle, unnoticeable adjustments, and I wait. Some nights I catch a break. The tensions eases from my muscles, the deeper pain is released from my joints, and I sink into slumber. Other nights it feels as though a monster has entered my body, and his sole purpose is to make me miserable. Pins and needles travel along my spine and up and down my legs; my mind races; I imagine that I will never be healthy again. Eventually I give up trying to sleep. I get out of bed, tiptoe to the guest room, and read or write until the monster goes away.

For the chronically ill sleep takes on extra importance. Its deprivation almost always exacerbates symptoms. Therefore I guard my sleep like a jealous lover. I wander out of my room at 11:00am (or, let’s be honest, 1:00pm) on weekends, hair sticking out like a madwoman. My family laughs and calls me Sleepy Head. But I ain’t ‘shamed.