How I Sleep (Or Don’t): Powerless/In the Dark

Today’s post is for the December edition of the Disability Blog Carnival. This month’s host is Dave Hingsburger at Rolling Around in My Head.

The carnival is scheduled to go up on December 21 (the longest night of the year, for those of us in the Northern Hemisphere). The Disability Blog Carnival always makes for interesting reading, so do check it out.

Dave’s topic, and attached metaphors, are beautiful and inspiring. Here is a tidbit:

The theme is ‘dark nights of the soul and what gets you through them’ … I’d like stories and posts about how you’ve survived those times when it was ‘darkest before the dawn’.

A couple of weeks ago, I posted the first part of this series,^[1] about how I was sleeping a year ago, when Gadget was sick, then dying, then gone. Most of it was written, but not published, in February, when it was all still very fresh. The time it describes is definitely one of the “long, dark nights of the soul.”

I have sleep disturbances and insomnia from multiple illnesses; sleep issues have been part of my life since 1995. However, there are definite “up” periods and “down” periods. Insomnia-wise, some times are worse than others. The last two years have been a long stretch of “worse.”

Until I started writing today’s blog, I didn’t realize why my sleep has been particularly bad the last couple of years, and especially very recently.

Maybe people who aren’t as forgetful and confused about dates and times as I am would have figured it out — even seen it coming — but the cause seems to have been the “slumbering giant” in my consciousness.

Two years ago today, December 12,^[2] 2008, The Northeast Ice Storm hit. The weight of the iced trees snapped power- and phone-lines like dental floss. Even cell-phone towers came down.

I never saw the damage, I just lived its effects.

Due to my disabilities,^[3] I was stranded in my house (in my bed, actually), unable to evacuate, for a week.

A week without power: no lights, no phone, no water, no internet, no plumbing, no heat.

A friend with the same disabilities as I have, was even more severely affected by the storm, ending up in the hospital — an experience from which she has yet to recover.

After it was all over, my friend described the beautiful and surreal landscape she saw through the ambulance windows. She also emailed me a picture of herself holding up a newspaper from her hospital bed. The huge headline reads, “Powerless in the Hilltowns.” That pretty much summed it up.

An example of the dazzling landscape many described. Even now, though I see the beauty, I'm disconnected from the magic of such images; they evoke anxiety, not enjoyment.

[Photograph by Judy Stalus. Used with permission.]

Those were longer, darker nights than I’d ever known. I wrote out my will by flashlight in case I didn’t survive.

What got me through, in addition to my PCAs, my partner, Betsy, and my (now former) best friend with whom Betsy stayed, was “capital-G”-Gadget — my service dog and love of my life — and a lot of “lower-case-G” gadgets:

• My book on tape machine
• My iPod
• My flashlights
• My TTY^[4]

Wearing my warmest clothes, covered in all of the blankets in the house, I kept them all within reach.

Little things became hugely important, such as batteries.

I turned a flashlight on as soon as it got dark. I left it on until it was light, regardless of whether I was awake or asleep. In addition to the flashlight that was on, I kept a second one, with fresh batteries, at hand. When the first one grew dim, I’d turn on the second, then replace the spent batteries of the first.

When my talking-book machine’s or TTY’s batteries lost their charge, I panicked. I’d lie there, obsessing over when Betsy would be able to come and take it away to recharge it, and if I’d get it back before dark fell again.

During the day, I limited how much “juice” I used with anything that ran on batteries. I was very careful never to expend the charge on more than one device at a time. At night, I doled out the time with my book machine or iPod, forcing myself to take breaks to make them last longer.

Although, due to sound sensitivity from Lyme disease, I have not usually been able to tolerate music in the last few years, there was one song I relied on during those too-quiet nights.

I’ve never admitted this to anyone before, except Betsy: the Beatles’ song “Let It Be,” helped me get through. I listened to it at increasing volume, the ear buds vibrating, over and over. When the iPod died, sometimes I’d just hum it and cry.

Why does relying on “Let It Be” feel like such a dirty little secret? Partly because I’m Jewish, and the song, if you don’t know much about Paul McCartney, seems to have a very Christian tone.^[5] Partly because finding sustenance in a song, especially a pop song — especially a Beatles song — seemed such a cliché. (But — “Whatever gets you through the night, it’s alright” — isn’t it?)

Honestly, in the middle of that seemingly endless night, being Jewish, having no connection to “Mother Mary” — none of that mattered. It’s pretty much a Buddhist concept, letting it be, though it seems like all religions have some form of “turning it over.” When you’re powerless, there’s really nothing else you can do but turn it over, let it be.

Unfortunately, life didn’t get better after the emergency ended. It got worse, severely and quickly.

My dear friend, mentor, and colleague, activist Norman Meldrum (with Beatrix Underfoote). Norm died January 6, 2009.

Within three weeks of the storm, as I struggled with the PTSD it had caused, one of my best friends died, my best (and only nondisabled) friend ended our friendship in a nasty way, and my therapist terminated with me (largely because she refused to get a TTY).

A few months later, Gadget, my service dog, was diagnosed with cancer. Then I lost more friends — some to death, some to abandonment — then Gadget, until it felt like I was pared down to a numb nothingness.

I think the piling up of too much loss and trauma in a short period explains why my sleep has been particularly bad for two years.

It’s not just the chemical injury, chronic fatigue syndrome, and tick-borne infections interfering with my body and brain’s sleep cycles — though that certainly is enough. At a deeper level, it’s also that part of me is afraid to go to sleep because the literal and figurative darkness and stillness of night and sleep are too reminiscent of the outage.

Indeed, I can’t tolerate total darkness, or true quiet, now. At night, the sound of the air filters blowing and freezer humming, the shine of the LED lights of my clock, and the glow of my sleeping laptop give me comfort.

If there’s an outage, even during daylight — even during the summer — I panic. I never know how long it will last. I now keep lots of batteries, along with glow-in-the-dark flashlights, mylar blankets, and hand- and foot-warmers, next to my bed. For a long time after the storm, I kept a flashlight in my bed.

Lately, my sleep debt accrues with every day.

It started in November, with the anniversary of Gadget’s death. Grief hit me hard, kept me awake, dragged me to sleep during groggy afternoons, then broke me open again when I should have been sleeping.

However, even as the grief recedes, I continue not to sleep. In fact, as much as I long for sleep, I keep fighting to stay awake. It took me a long time to become aware that I was doing this. After all, if I’m desperate for sleep, why would I want to stay awake until dawn?

A happier time: Gadget and I meet Norm in Maine for the reading of my work he organized.

I now realize that it’s because some part of me recognizes these short days as the same natural patterns that occurred during the power outage. That wisp of panic urges, “Keep the lights on. Don’t stop working at the computer. Write; make sure people know you once existed. Live through the night.”

When gray light starts seeping through the curtains, I feel my body relax and begin to give way to sleep.

Of course it’s not a good coping mechanism. Sleep deprivation drives up my pain in a very predictable manner, which interferes with all other forms of functioning: speech, movement, thought.

Lack of sleep weakens my immune system, which is under the massive burden of fighting multiple infections, in addition to being upregulated for two decades, overreacting to foods and chemicals. Not sleeping also brings a host of little irritations: grouchiness, (worse-than-usual) cognitive problems, emotional brittleness, a continual buzzing in my head, and dry, itchy eyes, and on and on.

Nevertheless, there are times when I make peace with the insomnia, when I can look into the teeth of a long night of wakefulness with equanimity, even eagerness.

• When I’m feeling antisocial or my moods are being affected by “the bugs,” and I think it’s best for all involved if our interaction is kept to a minimum. (This works even better if I can manage to sleep when others are awake, too.)
• When I’ve gotten sleep during the day, and I know I won’t be able to fall asleep anyway, so why bother trying?
• When I can write, which has been such a rarity for so long that I will give up almost anything to have that part of me back. (Especially since some of my best or most successful pieces were written between 2:00 and 5:00 AM.)
• When I know I’ll have to wake up early anyway, so there doesn’t seem much point after a while in catching those one or two hours of shut-eye.
• When Barnum has both an appetite and an attention span, so I opt to train instead of sleep.
• When I’m hungry, which keeps me awake, so I distract myself until someone can make me a meal.
• When I have to pee, which keeps me awake, so I distract myself until I can get to the bathroom.
• When I’m in too much pain, which keeps me awake, so I just lie still and wait for the painkillers to work.
• When I’m writing a blog that helps me make sense of it all.

Peace.

-Sharon, the muse of Gadget, and Barnum (snoring away)

Footnotes:
[1.] Originally I planned to write two posts about sleep, but working on this post took me in an unexpected direction, creating a third piece. Since I seem to have a lot to say about what underlies sleep — or lack of sleep — in my life I’ve decided to turn “How I Sleep (or Don’t)” into an ongoing series. Look for other new series, as well. (I’ll also pick up the thread on some I’ve dropped, such as Barnum’s training logs — lots of developments!). Back to post.

[2.] I started writing this post a few days ago. I actually do know today is not the twelfth. Back to post.

[3.] CFIDS and Lyme made me too sick to be moved, but the real barrier was MCS, which meant that no shelters — neither the homes of friends nor disaster shelters, such as fire stations, were accessible to me. In fact, partway through the crisis, I located a friend who lived nearby who also has MCS and CFIDS, who was hypothermic and desperate, alone in her home. She stayed in my bedroom with me until her power was restored. Back to post.

[4.] Even though there was no phone service for most of that time, I used the TTY to communicate when it was too dim for Betsy or my PCAs to see my lips, gestures, communication board, or signs. Back to post.

[5.] During the time of the outage, I didn’t know that the “Mother Mary” in the song refers to McCartney’s mother, Mary, who died when he was a boy. Back to post.