How to get to sleep….
How do you get to sleep when you are burning in a pool of fire? You don’t. That was one of the tortures of Hell that I was taught about as a young girl in a Roman Catholic school: Hell is endless pain, so bad that you can’t even seek solace in sleep. At that age – 5 or 6 – I couldn’t really visualize what they were talking about. Pain like a skinned knee? Pain like my sore, raw throat scar after running in the cold winter weather on the playground, or after my tonsils had been removed? The nuns said that we should imagine getting a burn from a stove, or from a hot pan or dish – only it was all over your body, and it never, ever ended, and you couldn’t ever escape it. Plus, you never went to sleep. Yes, my nuns talked about Hell in italics, perhaps so that little children who had never really suffered pain might try to comprehend it. After all, *not* going to Hell was the big reason to be “good.”
So now I live halfway in Hell, and consider myself lucky. Yesterday I met a 47 year old single father, who injured his cervical spine in a car accident almost 20 years ago. He has had CPS that has gradually advanced so that his entire body is racked with pain. The electrical shocks are so bad that he loses muscular control and falls down without any warning. (Talk about a dangerous situation!) He can’t get health insurance, so he can’t afford to be treated. He can’t get disability, because both the insurance companies and the Social Security Administration deny that he is “disabled.” Of course, with Spinal CPS, there are almost no drugs that are effective for his pain. Worst of all, his doctors have no idea of why he is in that much pain, and are at loss to treat him. All he can be offered is Oxycodone and distraction.
Compared to his situation, mine is a romp in the daisy-strewn summer fields. But we both agree on one thing: it is almost impossible at times to get to sleep. You lie there, exhausted, drifting in and out of early REM sleep, only to be awoken by either a gradually increasing awareness of extreme pain, or perhaps by a sudden stabbing, or crushing, or electrical shock. The sudden ones are the ones that awaken you completely… leaving you to try to get back to the state of exhaustion, which might lead to sleep.
All of us with CPS are racked by sleep problems, We can’t get to sleep, and lie there most of the night in agony. We know that we need sleep, because only sleep will create the neurotransmitters that give us *any* relief at all. It is only after five or six hours of sleep that we can think clearly. For instance, I can only write this little essay now because I got nine hours of sleep last night -hooray! Most days, however, I can’t get to sleep until 2 AM or later, and then am troubled by nightmares, as the pain seeps into my sleeping consciousness. I take all my most soporific drugs in my last batch before bed. Sometimes these have worked so well that I have collapsed with water leg muscles before making it to the safety of the bed. The prescription drugs we take give us very vivid dreams to begin with, so the dreams of horror and torture are very realistic to our REM state. Our blood pressures must sore during these dreams, but what can we do to prevent it? Only take our drugs (if we have some that work) religiously. The gabapentin and baclofen and amitriptyline and Fentanyl and morphine patches have become our new Communion wafers. We are told that stress is the single largest trigger, but how do we avoid that?
So, in spite of all our religious practices – pills, meditation, gentle exercise, carbohydrate avoidance, gentle yet exhausting exercise and the rest – we will still find ourselves staring at the darkened ceiling, but seeing flames. How do we get to sleep? That is one of the big questions we ask each other, and we pass around our successful practices like talismanic rituals. “This is what worked for me,” we say, “so you might want to try it.” Even as we recommend our sleep systems, we know – just as the CPS patients we talk to know – that what works for us may not work for them. CPS is an umbrella diagnosis like cancer, and each case is different, and will respond differently to treatment.
Listening to audio books, what were called “books on tape” just a year or so ago, has been one of my main antidotes to sleeplessness ever since I was in the hospital following my stroke in October 2007. Back then, my brain was too battered to think very deeply. It gave me a headache to attempt to read, and logic puzzles frustrated me. Current events, one of my great passions, made me so distressed that I had to turn off the news of the hospital television. I was frightened by having apparently lost great portions of my intellectual capability, my “Self,” and needed comforting. One of the only things that I *could* stand was watching “Meerkat Manor“, which was in heavy rotation on Animal Planet. The story of the Whiskers family was both familiar to be comforting, and distant enough to be non-distressing. When I wanted to get to sleep, however, I listened to narrations of Agatha Christie books on my iPod.
I had read a few Agatha Christie books in decades past, back when some of her Poirot novels had been made into films. I knew the surprise twists in “The Murder of Roger Ackroyd, “Murder on the Orient Express,” and “Death on the Nile“. I had watched the PBS Mystery! dramatizations of the Poirot novels, which starred David Suchet, and the Miss Marple novels, starring Joan Hickson, back in the 1980s. So these stories were comfortingly familiar to me, even if the details had been forgotten. They were diverting enough to distract me from the pain. They could command my attention if I could not sleep. They could lull me to somnolence when that blessed spirit laid its hand on my brow. They followed predictable patterns: Poirot always gathered all the suspects into a single room, in order to reveal the killer, at the end of each book. There was always a successful conclusion to the mystery, which was a condolence to one faced with an intractable problem. The language Christie employed was advanced and British, and yet not academic, so listening to them soothed my battered verbal facilities back into shape.
There was also a distinct pleasure to listening to Agatha Christie books, in that the woman wrote so many of them – 82. I certainly hadn’t read all of them, so there were new mysteries, with their solutions unrevealed, for me to listen to. Because Christie is the undisputed favorite English novelist of all time, all of her books had been made into audio books, even the slighter series like “Tommy and Tuppence,” and “Inspector Battle,” or her one-offs, such as “Ten Little Indians.” It was fun for me to search for the collect the audio books. (MP3s don’t take up a lot of room, either, which is essential for a clutter-addict like me.)
Listening to as many of her 82 novels as I could find, in addition to narrations of her short stories, and BBC Radio dramatizations of perhaps four dozen, took me the better part of 18 to 24 months. After that, my bedtime listening became that of P.G. Wodehouse works, another vastly prolific and somewhat formulaic British author of the first half of the 20th Century, with over 70 novels and 200 short stories to his name. Wodehouse was the author of comedies – romantic comedies, manor-house comedies, and comedies of errors, but was like Christie in that they were somewhat formulaic, and often found in series, such as the Jeeves novels, or the Castle Blandings books. Wodehouse, like Christie was someone used the English language like the paintbox and brush of a true artist. Almost all of his works had been read into audiobooks, because Wodehouse, like Christie, has almost obsessive aficionados, many of which had discovered him in the 80s in British television dramatizations. The parallels with Christie are numerous, and his novels were a natural followup to hers. Listening to his audiobooks gave me great pleasure for another one to two years, and I was sorry to see the list end.
I’ve listened to other audio book series, most transfixingly the Aubrey/Maturin series of novels by Patrick O’Brien. These have been some of my great novelistic loves since reading “Master and Commander” in 1980. I was fortunate enough to be able to read many of his books as they were published, and looked forward to each new volume. I was very sad that O’Brien died before he was able to finish his final, 20th volume, which would have finally brought Captain Aubrey home to his Sophie for good. Listening to those 20 books on audio took another year or so.
This has been my bedtime listening since my stroke – mainly fiction. They are like the fairy tales and children’s classics that my grandmother would read to me to help me get to sleep as a tiny child, ill from her tracheotomy or her frequent throat infections, or even her tonsillectomy. I suppose that if they had given me a bottle of warm milk to get me to sleep, I would have been craving something similar as I lay in the dark nights these past five years. Instead, I was fortunate enough to have been rocked to sleep with stories.
So I have loved listening to the audiobook of “A Distant Mirror: The Calamitous 14th Century,” , for which Barbara Tuchman won the National Book Award for History in 1980. I had never read it before. It was a wonderful experience to hear how Tuchman wove so many disparate threads- the personal, the political, live daily lives and vast historical sweeps, and the analogy to our own times. For the past three months, I have looked forward to hearing a chapter or two as I fell asleep, transporting me back to a time so distant as to be almost completely unlike our own in its surface appearance, and yet still peopled by the same sorts of individuals, motivated by the same goals, and creating the same conflicts.
That anticipated and pleasant nightly sojourn was ended two nights ago when I could not get to sleep, no matter what I did. I was so tired that I fell asleep sitting up, and yet could not stay asleep as a paroxysm of pain would seize me. I drank a shot of gin as an anesthetic and laid down in bed at 1:30, figuring that it was safer than falling out of my chair. I turned on my iPod, and dialed up the Tuchman, knowing I had at least one-fifth of that 600+ page book to divert me. Surely, I thought, that would be long enough to carry me to Slumberland.
No, it was not. The pain won that night, beating darkness, warm comforters, gin, extra gabapentin, and one of the best narrative historians who has ever written, When I heard the final chapter end at 5 AM, I was still writhing. The dependable panacea had failed me. As I watched the dawn light rising – so much earlier in February than it had been in December – I tried to gather what comfort I could from the wondrously dependable presence of my husband next to me, in the bedframe that we had shared since switching to a futon in 1992. I used one-point meditation in an attempt to change the mental subject, and finally fell asleep right after the clock radio burst on with “Morning Edition” at 6 AM.
I know how much more productive I could be if I could only get eight hours of sleep a night, and arise at 7:30 or 8 instead on 10:30 or noon. One-point meditation usually isn’t the answer unless everything else has failed. It has been five years that I have been racked by broken sleep, broken dreams, terrible hours, and the dark nights of pain.
Yet, as bad as my nights may be, they are as a stubbed toe in comparison to some of the other CPS patients I know – the Spinal CPS sufferers. Yesterday, my friend with Spinal CPS told me that he didn’t understand how our government could be so cruel, denying any form of help to those of us suffering from this. I replied that it was in corporate interests to make sure that we are never recognized or supported financially. We paid into our disability pools, insurance plans, and Social Security funds all our working lives. If the people that received our money can find a way to keep us from receiving benefits, they can “keep costs down and profits high,” and thus earn themselves millions of dollars in salaries and benefits each year.
In the meantime, all we can do is hope to survive until we reach 65. Sometimes I believe that the actuaries and Boards of Directors that run our for-profit system have made a calculation that it is cheaper to let us die than to pay us. Would the American people as a whole decide that same thing, if they knew about CPS/? Would they chose to let the millions of us who are suffering from this worst of torments, living up to the fires of Hell analogy, continue on untreated for decades, until death takes us, whether due to “natural” causes or to self-slaughter?
That is a question that cannot be answered until it is actually tested, by placing this issue in front of them. In the meantime, if you have any tricks to help me get to sleep on time, please let me know.