TO SLEEP FOR A THOUSAND YEARS: Recent observations from chemo base camp, part 5

Part of the THIS IS THE MOMENT series

October 11th, 2018

Last week, in Hudson, most of the deciduous trees were still green, and with all of the towering old pines thriving in the sandy soil, autumn still seemed more anticipated than real. But with the arrival of colder, greyer days, there’s been change.

In the wake of chemo last Wednesday, I missed it, spending almost all of my time inside a strange and artificial world of side effects and rest. But yesterday, Christian and I drove to the Village grocery store, and that’s when I noticed how quickly the colours of fall have taken over the landscape.

It’s pouring rain as I write this, and the forecast says that’s about the size of today. In an hour, a man will be here to change the carpet on the main staircase and upstairs hallway of our house. First, he’ll remove the one that’s been here since 1975 (with a zillion staples and small nails holding it solidly in place), and then he’ll put down the new and hopefully resistant replacement. I wonder if this will still be Simon’s house in 45 years? He will be 80 years old then. And probably still changing the world.

Earlier this morning, around 5:30, some of the rain sounds entered my bedroom through the inch or so of window I had opened the night before. No matter how well or unwell I feel (or how cold), I like to keep an aural connection with the world outside.

Devas, Nicolette Macnamara; Juanita in the Morning; Manchester Art Gallery; http://www.artuk.org/artworks/juanita-in-the-morning-205486

I’ve never had my own bedroom, and before my separation from my husband and my move to Hudson, I had not slept alone for any length of time for 37 years. Now, I have a room that’s mine, at the end of the upstairs hall, tucked away to the right. This bedroom of my own is a strange place for me. I’ve spoken a little about this. I suppose that in my mind, it was going to be the bedroom in which I lived to be an old woman. I remember, when we were house hunting, Simon talking about houses with too many stairs that would be a problem for me as I got older; and I also remember rolling my eyes, thinking of my 83-year-old mum, who climbs 14 steps multiple times each day, going about her business (though she now rations her trips to the basement). And besides, I’ve only just turned 60!

It’s no longer possible for me to look at my room this way. It isn’t a good idea to look so far ahead.    Like everything else in my life since my cancer diagnosis, what was once excitement and anticipation regarding our new home in Hudson has been tempered. I’m still not completely settled in yet. A lot of my things—those objects whose value was never decorative, but were mementos of a timeline that rooted me—are still in boxes or drawers, or shoved on a shelf, jumbled with stuff I don’t care about.

I suppose the fact is that I don’t know what—though I emphatically know who— I care about now. Do any of these things matter to me? I was happy when my husband came to the house and put plain white curtains up in front of my window. It was kind and helpful and I now have valuable privacy, as my window looks out onto the street. I value each and every piece of jewelry, each book, and jar of skin cream, and tube of hand cream, and box of tea, and cookies, and tray of squares or muffins that I’ve received since July, all of which were meant to proffer love and care and healing. They are—and more likely were, if they were among the delicious things—my talismans and elixirs.

And now I find that I’m coming to love my room. The past few chemo cycles have been harder to get through. Their after-effects have lasted longer and longer and been more debilitating. Today is Thursday, which means that in 6 days, I’ll be back in chemo again. The skin on my hands still hasn’t stopped peeling away. My nose still bleeds easily. My legs are still wobbly at times. My eyes still leak sticky fluid that’s irritating. I’ve started getting discomfiting stomach cramps, out of the blue.

But there’s my room with a view, and in that room, there’s my bed. And during the past few chemo cycles, they have become a haven.

At the worst of this past cycle, on day 3, when the burning in my hands and eventually in my feet had reached a point where they were utterly useless to me but so painful that all I could do was shiver and whimper, evening came, and with it, the comfort and safety of my bed. With only Extra Strength Tylenol in my chemo management arsenal, I really didn’t know if it would be possible to sleep.

It must have been exhaustion that cleared the path (and the two Tylenols), but I slept ten hours that night and woke at 8:21 the next morning, still in pain, but less so. I took all of this in without even pushing back the covers. My comforter and blankets felt light, and warm, and I can honestly say that I considered staying there for hours longer. Being under those soft covers was heaven, and I didn’t want to leave. What made this so strange and delicious is the fact that I haven’t slept well—haven’t fallen into deep, restorative sleep—for years.

Balmer, Barbara; Domenica; Leicester Arts and Museums Service; http://www.artuk.org/artworks/domenica-81064

There’s no shame in escaping the effects of chemo and the exhaustion of the heart, soul and body. I often want to lay down mid-afternoon and just nap…Let the hours fall away…Escape a situation that has become in large part a struggle to manage my reduced life. But I resist, as much as I can, because there are better reasons to stay awake, to take in the sun and sky, to write like this, and to write to everyone I care for, to have friends over, to try to be helpful to my sons who carry more than their fair share, to be with my grandchildren, to read and read,  to go for blessed walks in the winding streets of Hudson and gawk at how lovely it is, and to reconnect with life, and the joy of living.

But there are days when I could sleep for a thousand years.

Selway, John; ‘As I rode to sleep’ Fern Hill Series; Amgueddfa Cymru – National Museum Wales; http://www.artuk.org/artworks/as-i-rode-to-sleep-fern-hill-series-162254

 

THE DREAM OF DEEP AND VITAL SLEEP

Keirle, Gordon; Guardian of Sleep; Leicestershire County Council Artworks Collection; http://www.artuk.org/artworks/guardian-of-sleep-82510

I suffer so from poor sleep—

Interrupted sleep, to be precise.

(I can barely keep my eyes open after nine pm)

And once again, last night,

awoken by noise and movement,

I found myself staring at the digital display

on the clock radio:

 1:30

(I was unlucky, it’s usually more like

3:10 or 3:30 or even 4:00)

 

 

When this happens, I know

I’ll toss and turn for a long,

time-devouring stretch,

awash in thoughts of everything

unresolved in my life, feeling flushed,

ants of anxiety under my skin.

Sometimes, if four is antemeridian, and

I find myself awake, I forfeit the sleep

in exchange for time alone which

is nothing like lonely or uneasy,

but feels rather more like time stolen,

appropriated from the Universe and

made mine.

There’s a cost to this brazen shoplifting

of minutes and hours—a penalty.

Research shows that the hours unslept

are snatched from the end of our lives.

(I learned this only this week)

This seems unjust, and yet

While I covet the dream of deep and vital sleep,

I’m caught red-handed with the irony

that I did in fact fall back into sleep sometime

after 1:30 this morning, held on tight till

7:02 and have felt cheated

and pressed for time

ever since.

Selway, John; ‘As I rode to sleep’ Fern Hill Series; Amgueddfa Cymru – National Museum Wales; http://www.artuk.org/artworks/as-i-rode-to-sleep-fern-hill-series-162254

 

Somnum Interruptum

Not too long ago, I went through a strange period when two of my molars abscessed in quick succession and had to be «devitalized»—an alarming term, but the official dental euphemism for killing a tooth by performing a root canal. It was pretty disturbing. And painful!

I remember the dentist saying that our teeth are peculiar body parts because basically, they’re supposed to do their job unnoticed and we resent anything different.

Mine were clamouring for attention (and payed for it!).

Sleep is like that too. It’s effortless and predictable and restorative…until it isn’t. And then it has our attention.

My granddaughter Penelope, losing her fight to stay awake.
My granddaughter Penelope, losing her fight to stay awake.

My son Jeremy and his wife Anne are in that predicament. Sleep—or the lack of it—is devitalizing them. They’re the parents of two young children.

Ah.

The block of battery-recharging time they once called sleep has morphed into a hit and miss latticework of nightly «naplets». The golden standard of 8 or 9 hours of peaceful rest hovers out there like a promise and a torment.

But things should eventually sort themselves out. After all, the causes of their sleep deprivation are external. If my grandchildren can just cooperate, their parents will soon rediscover what it means to lay your head down on a pillow, close your eyes and gently drift off for hours and hours…

Oh God.

What do you do when the causes of sleep deprivation are internal?

That’s where I’m at.

I can’t say with precision when things started to go awry. It must have been incremental.

I’m not an insomniac and haven’t yet asked my physician for a sleep aid, though there are times when I feel like banging down his office door in desperation (usually at 2 in the morning).

Poor sleep, like anemia or migraines or bad knees, is something you learn to live with until you can no longer remember what it was like to feel great.

All men whilst they are awake are in one common world: but each of them, when he is asleep, is in a world of his own. – Plutarch

I wonder if there are as many understandings of sleep as there are people.

My grandson Graeme, napping on me.
My grandson Graeme, napping on me.

For my husband, sleep is escape. He discovered this when he was just a small child, running to his bed and falling asleep under the covers—no matter the time of day— when something had gone wrong or he had misbehaved. And as long as I’ve known him, he’s been able to cat nap several times during a lazy day or even a stressful one, and relishes the thought of bedtime at day’s end, when the comforter (really, that word says it all, doesn’t it?) is like some sort of thick curtain he can pull up over his head to shut out the worrying world.

 

“Sleep is my lover now, my forgetting, my opiate, my oblivion.”
― Audrey NiffeneggerThe Time Traveler’s Wife

 

A couple of friends and family members, who are on anti-depressants, have told me that the medication has turned their sleep into an unpredictable ride through a dreamscape that sometimes borrows from Lovecraft, sometimes from Tarantino—or both—with flashes of Lars Von Trier occasionally thrown into the mix. They tell me that everyday life looks great after such hallucinations.

Another day, another nap.
Another day, another nap (in my arms = heaven)

In the writers’ workshop that I belonged to a decade or so ago, I remember a few enthusiasts who had programmed themselves to awaken from their dreams so that they could record them in a special notebook. At the time, it seemed as futile as trying to catch a cloud; today, it seems more like intentional sleep deprivation.

But maybe that’s because I’ve never set much store in dreams. Besides, the only ones I can remember are the bad ones.

Every dream that anyone ever has is theirs alone and they never manage to share it. And they never manage to remember it either. Not truly or accurately. Not as it was. Our memories and our vocabularies aren’t up to the job. ~Alex Garland

I fall asleep easily. It’s staying asleep that’s so difficult. Every now and then, I sleep like I used to, and wake up feeling so good! But my sleep has become crepe paper thin, and every little sound and movement wakes me up me now. On the worst nights, my eyes spring open and stare, in the dark, at the digital display on the alarm clock: 1:15…2:23…3:10…4:07…

It’s a relief when it finally shows 5:00, because it means that I can slip out of bed and into the shower which, God-bless-it, brings me to life. Though I’ll never again take a good night’s sleep for granted, I’ve also made my peace with my interrupted nights.

Gorgeous autmun moon above our house, August 2015
Gorgeous autumn moon above our house, August 2015

I’ve left behind the quickened pulse, agitation and anxious thoughts swirling in the dark. Instead, I’ve learned to lie quietly, breathe deeply and let my thoughts wander beyond the night sweats, to good things. It’s often in the dark of night that writing ideas—like this one—come to me. Sometimes, I replay in my mind moments or events that gave me joy, until I slip back into fragile sleep.

 

“The night is the hardest time to be alive and 4am knows all my secrets.” 
― 
Poppy Z. Brite

 

 

Before sunrise. A beautiful winter dawn, caught last week.
Before sunrise. A beautiful winter dawn, caught last week.

What I’ve discovered most of all is the quiet solitude of early mornings—those few hours before sunrise (especially in winter).  The life I live before dawn is separate from everything that follows. It’s as though the whole house is mine. I go to the dining room table, where I do most of my work, make a cup of tea or coffee and turn on the computer.

It’s a time of gathering my thoughts, and it’s my favourite time to write. Once everyone else gets going, the bubble bursts and daily life comes flooding in. But until then, I live in the space left behind by fleeing sleep.

 

“Anything seems possible at night when the rest of the world has gone to sleep.” 
― David AlmondMy Name Is Mina

 

I’ve read that insomnia is associated with weight gain, depression and a shortened life span; I hope that my subpar 5-6 hour attempts at sleep won’t cost me that much.

 

There’s a thread that runs through literature which links sleep with death. Edgar Allen Poe lamented: “Sleep, those little slices of death — how I loathe them.”

 

And in the late 20th century, J.M. Coetzee wrote: « “Sleep is no longer a healing bath, a recuperation of vital forces, but an oblivion, a nightly brush with annihilation.” 

 

People who have experienced deep, restful sleep often say I was dead to the world.

 And then there’s Shakespeare’s Hamlet:

 

“To be, or not to be: that is the question: 
Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And by opposing end them? To die: to sleep;
No more; and, by a sleep to say we end
The heart-ache and the thousand natural shocks
That flesh is heir to, ’tis a consummation
Devoutly to be wish’d. To die, to sleep;
To sleep: perchance to dream: ay, there’s the rub.

 

I’ve never perceived sleep this way, but I know, from having experienced it twice, that being put under a general anaesthetic is a rehearsal for death. One moment you are, and the next, you are not. I’ve made my peace with that.

Rather, as most of it is experienced in the dark, our sleep connects us to our most primitive, essential selves. Our cave dwelling ancestors sought the safety of cover, and of each other, before closing their eyes to sleep. Young children, who still rely on this instinct, resist our attempts to leave them alone and isolated in their impeccably decorated bedrooms. I was lucky, I always shared a room with my older sister.

Penelope naps with me on her first day in her new home.
Penelope naps with me on her first day in her new home,  summer 2013.

When all is said and done, at day’s end, laying down to sleep is an act of faith and trust in the world and in each other. When we close our eyes, it’s with the belief that no harm will come to us, and that tomorrow will always be…another day.

 

 “Sometimes at night I would sleep open-eyed underneath a sky dripping with stars. I was alive then.” 
― Albert Camus

Night owls
Night owls