Dancing in the Dark

Comics and classics alike portray somnambulists (sleep walkers, for the uninitiated) doing all sorts of bizarre things. Lady Macbeth walks the castle parapets washing blood off her hands and manifesting daggers. Stage hypnotists make volunteers walk like a duck and quack like a duck. Orpheus travels through the underworld searching for his lost love Euridice and almost coaxes her back to the sunlight before he succumbs to curiosity, to the need to know that Euridice is still there, and turns to take a forbidden look before she evaporates like a dream that can no longer be grasped once the eyes are opened. Each of these examples shares something … they tantalize with the possibility that reality can cross the boundary between the physical world and the subconscious.

There is something else in common with these references. Each of them occurs in a safe environment. When you watch Macbeth or Orpheus, you are either sitting in a live theater, watching on TV, or at a movie theater. The action takes place outside of yourself, and you can always fall asleep, or close your eyes, or even get up and walk away from the action. When you are directed to quack like a duck, the worst that is likely to happen is that a drunk crowd at a nightclub laughs at you, and you are briefly embarrassed.

Now imagine that any of those events happened to you in a dream. There are different depths of sleep, and scientists recognize that most dreaming takes place during a light stage of sleep called REM sleep, or Random Eye Movement, which is a characteristic of most REM sleep. You might or might not wake up from the dream, but even if you remain in a dream state, there are mechanisms in your brain that freeze your muscles, that essentially turn you into a virtual spectator in your own dreams. This state is called atonia. The muscles do not respond to signals from the brain while you are asleep, so you are not physically endangered when, for example, you walk the castle parapets in your dream. But things are different when you introduce a sleep disorder.

During REM sleep, there are usually chemicals in the brainstem that prevent “movement” signals from reaching the body, so the sleeper can have a vivid dream with plenty of action, but there will be only minimal body movement. Sleep disorders, in which the usual level of paralysis is overridden. The one I’m most familiar with is called REM Behavior Disorder, or RBD. In spite of being sound asleep and sometimes not even recalling any dreaming activity, a person who has an RBD condition can physically act out a dream, kicking and punching, shouting, talking, even sleep walking (which in itself is a different sleep disorder).

I’m familiar with RBD because I started having episodes around the time I turned 50. I characterized the episodes as nightmares. At first, there was always an evil humanoid trying to reach me through a semi-transparent membrane. I remember taking a hard swing at the nightmare monster, but succeeding only in waking myself up and nearly breaking my arm on the bedframe. To my wife, it was culmination of several minutes of hiding while I kicked and shouted. After I woke myself, my wife suggested I roll over and try sleeping on the other side. I was back asleep in seconds. My wife was sleepless for the rest of the night.

There were other notable nights. My thrashing during dreams led to me fall out of bed while sound asleep, smashing my chin on a bedside table, then on the floor, nearly biting the end of my tongue off. When I went to the doctor the next morning, I wasn’t sure whether I had a broken jaw or a concussion, but I did know that I had put a tooth clear through my tongue.

Another night, I was sleeping in a dormitory room in a youth hostel the night before a flight. My roommates in the hostel seemed to be a group of marines who were having a night out before they shipped off. I finally drifted off to sleep in spite of all the drunken swearing, the yelling and singing and the teasing of one of their mates who was busily writing a forlorn love letter to his sweetheart. I dozed off, but when I woke up, I found the entire squad of marines backed against the wall, afraid to approach me, the crazy old man who was yelling and punching and kicking, with blind eyes and apparently unconscious in spite of all the activity. I finally pulled myself awake, saw what was happening, quickly packed my suitcase and left, walking several miles in the cool night air until I reached the airport.

Ultimately, working with my personal physician, we determined that I needed a sleep study rather than a psychiatric evaluation. The nightmares and crazy behavior were more than just a manifestation of PTSD.

The sleep lab I got sent to was the same one the doctors use to evaluate someone for obstructive sleep apnea, but I wasn’t looking for a CPAP machine. I wanted my bad dreams to stop. I wanted a peaceful and safe night’s sleep. So I drove to the far end of town and made my way to the sleep lab for a 7:00 pm appointment. After checking in, I was taken to a large bedroom that looked more like a hospital suite. I had to sign a consent form to allow the video camera to record my night’s sleep, then I was hooked up to numerous electrodes that would simultaneously record my breathing, my heart rate, my pulse, and my muscle tension, plus a few extra electrodes to provide an EEG so that they would know when I was in REM sleep so that they could compare it to my waking state and deeper sleep states. I’ve looked around for the selfie I took, but thankfully that appears to have been lost.

Speaking of lost … you try sleeping with electrodes all over your body! A lost night’s sleep, although the doctor assured me they got plenty of information from all the electrodes, and yes, I really did sleep even though I felt as if all I did was toss and turn, such as I could with all the wires binding me to machines.

I never got to see the films of me acting out my dreams, although I have seen other examples of people acting out dreams with RBD. When the neurologist saw me, he was brusque and unsympathetic, but he did seem to show some bemusement when he looked at my files. He prescribed a small dose of Clonazepam every night before I went to bed, but didn’t suggest a follow-up appointment. That was about fourteen years ago, so I was pretty much left to my own resources.

My creative solution was to sign up for a clinical study. The study took place in Houston, which was a long two or three flights from where I lived, but I wanted to know. There must be something that someone could do, and if I couldn’t solve my own RBD, maybe I could at least help others solve theirs in the future.

At the MD Anderson hospital in Houston, I underwent my baseline screening. Most of it would be repeated every year to see if there was any deteriorization in my mental and motor skills. I don’t think I mentioned it, but the study was looking at the long-term conversion of idiopathic RBD into Parkinson’s Disease (PD), which usually happened within around 10 years, if it was going to happen. The theory was that if they could find patients who were in a prodromal stage or pre-symptomatic stage, they could perhaps discover early interventions. I learned from the doctor that, in addition to PD, idiopathic RBD was also associated with multiple system atrophy (MSA) and dementia with Lewy bodies (DLB). The occasional person was just had idiopathic RBD (without any apparent cause).

My baseline study started with a blood draw, a screening questionnaire, then a smell test. The smell test consisted of a book filled with scratch-and-sniff scents that I was supposed to identify. Soil. Peaches. Roses. Manure. Garlic. Popcorn. Strawberries. Barbeque chicken. I’m just guessing at these, because I really can’t remember the details. I just know that, for each scent, there were four options. Out of 48 scents, picking randomly, I would expect to score somewhere around 12. If my sniffer was working correctly, I might get 40 right. I got eight. Loss of smell is one of the symptoms of PD.

Then I did the cognitive tests (remember these five words), what date is it, who is the president, etc., followed by manual dexterity tests. These were speed tests touching fingers in a repetitious pattern, and rhythm tests, etc. I passed everything with flying colors. There was also a gait test to see if I had any hesitation or imbalance, and how I got out of a chair. These are all standard PD screening tests. That first year also included a repeat sleep study to confirm that I had RBD, and a functional MRI … lie still on your back and follow the blinking lights, if I remember correctly.

I returned every year over a five year period for the cognitive, dexterity, and gait tests. My dexterity and speed actually increased from year to year, and the lead researcher assured me that it was very unlikely that I had prodromal PD. However, during one of those visits I also submitted to a spinal tap. They assured me that my spinal fluid would be deep frozen and might be used over the years whenever they wanted to check for other prodromal symptoms of PD, or other RBD studies.

Even though I’ve been idiopathic for so many years, I still closely follow the latest developments in RBD. When it makes news, for example with the death of Robin Williams and the revelation that he had dementia with Lewy bodies, I sit up and take note of it. There but for the grace of God go I. Occasionally there will be a news story where the defendant claims that he “did it” in his sleep and has no memory of assaulting someone of causing property damage. It is like the classic movie, the “Cabinet of Doctor Caligari.” I know from my own experience that that really is a feasible defense. But mostly, I read summary search results from the National Center for Biotechnology Information (NCBI), once a week providing current research and scholarly articles on RBD from Pubmed. Perhaps as a dubious side benefit, I also get way more research than I want on SARS-CoV-2 research, since of their keywords happens to be “receptor binding domain,” with the acronym “RBD.”

Before I sign off on this bizarre and ongoing chapter, let me give a pointer to anyone who may be suffering recurring nightmares. I found a cure for mine, though it is not easy to implement. The short answer is, use lucid dreaming. It is easier said than done. I joined the International Society for the Study of Dreams, and reinforced my own experiences that in some instance, dreams can be manipulated by the dreamer. I started doing lucid dreaming when I was 5-6 years old and shared a bedroom with my next-younger brother. Before we went to sleep, we would discuss what theme we wanted to dream about, then what role we wanted to play in the dream. In the morning, we would (usually unsuccessfully) compare notes.

But back to the nightmares. There was always a “being” who manifested evil, who threatened me and gave me great anxiety to the point of panic. In different dreams, the evil entity would change personae, but there was a sense of continuity. No wonder I would wake up the household screaming and kicking and punching. Yet I knew that objects in my dream could not really harm me, and from that, my waking mind surmised that if I confronted the evil entity, regardless of my fear, I could gain the upper hand and be more in control of my dreamworld.

I was traveling on my own and stopped for the night in a small-town non-chain motel. In the middle of the night (I’m making an assumption here), the dreams started. When I saw the entity, I swallowed my fear, approached him and reached out to grab him by his neck. Funny … his neck felt like wires and cables. I don’t know if I woke up or not, but I became aware that the cables in my hand were the cables connected to the back of the television set in the motel room. I dropped them and tried to walk back to the bed, but my leg muscles had no tone. I collapsed onto the edge of the bed with a bit of a dive, then crawled back to the pillow, covered myself, and was instantly lost in sleep again.

In the morning, I remembered that dream. I remembered confronting the evil entity and feeling it evaporate into non-reality. I said to the evil entity begone. You are nothing but a figment of my dreams. You have no power over me.

I haven’t seen the evil entity since then. I have restless sleep and vivid dreams. I am tired during the day. I still have RBD, and occasionally do bizarre things in the middle of the night, so I’m told. But now, I am armed with knowledge. I can watch with a knowing eye as my life unfolds as I prepare to wake, perchance to dream.