About REM

 EMail - jdcowling@tampabay.rr.com  


         My earliest memories are of watching rain drops as they dripped down the window pane by my bedóor perhaps was it my crib, Iím not sureóand feeling terribly alone.  I know I was not alone.  My mother and father were asleep in their room and my brothers across the room.  But I was awake and knew something was wrong; I did not know what it was nor could I explain it to anyone else.  Thatís why I felt so alone.  Fifty years later I was diagnosed with rapid eye movement (REM) sleep disorder.  I donít go into the deepest levels of sleep, the ones needed to enable concentration, memory, physical coordination and emotional stability.  Worst of all, REM sleep disorder means nights of constant dreams, often nightmares resulting in screams, swinging arms and sometimes sleep walking.

          REM sleep disorder was not recognized as an actual physical affliction until 1986.  Research has determined that approximately .5 percent of the population suffer from the lack of deep sleep, but thatís just a guess because many people donít realize they have a condition that needs medical attention and when they do go to a doctor they are misdiagnosed.  This is not a fatal condition but progressively debilitating.  Injuries can occur if the person rolls out of the bed or jumps to the floor and runs into furniture or if he or she strikes the spouse next to them.  REM sleep disorder occurs mostly among elderly men but not exclusively.  As with myself, children can be afflicted.

           A cause has yet to be conclusively established, but researchers believe disruption of sleep pattern may be related to malfunction of brainstem mechanisms resulting in the reduction of dopamine transporters causing voluntary muscles to move and the brain to remain active.  It may occur in association with other conditions like multiple sclerosis or Parkinson disease, but no data suggests itís caused by the other ailments.  Daily stress can make it worse but does not cause it.

           My mother always said I watched too many scary movies.  One brother enjoyed talking to me when he could tell I was in the middle of a dream that caused me to speak.  He thought it was funny to say contradictory statements to confuse and aggravate me in my sleep state.  My dreams were no longer funny after my mother died and my brother would have to catch me before I ran out the door.  To my best recollection, though I did dream of my mother, they were never unpleasant.  I would think how happy she seemed and how rude it would be of me to remind her that she was dead.

            She also had nightmares which caused her to get out of bed when a train passed.  The same dream every time, she said a train was coming straight at the house and we all had to get out.  As the years went by my father grabbed her before her feet hit the floor.  He used to tell a joke about it.

            ďYou know how some people have dogs that chase cars?  Well, Iíve got a wife who chases trains.Ē

            She didnít think it was amusing and had a distinctive way of letting my father know how she felt, so he stopped telling his story.

As I look back, I can see other symptoms in her.  The day after one of her nightmares she would be particularly dragged out, unable to do any housework and impatient with us children.  Holidays such as Christmas became an ordeal as she grew older and the accumulative effect of sleep loss built because she would become irritated after all the house decorating, cooking, shopping and gift wrapping.  I have more sympathy for her now, though I never blamed her much for losing her temper; after all, she did have three rambunctious sons, and she was also slowly dying from pancreatic cancer.  Her doctor kept telling her not to let those boys get on her nerves.  She underwent surgery supposedly for gall stones March 15, and the doctor discovered cancer instead.  She was dead by the end of June.  So much for a case of nerves.

Doctors might disagree with my hypothesis that REM sleep disorder is genetic.  Perhaps my mother and I both had injuries to our brainstems in infancy, and we didnít know it.  Research is continuing, and perhaps someday we will know the cause and even a better way to treat it.

By the time I was in high school I could see a definite pattern arising.  Every other year in the spring I would go through a month or two period of being in a complete daze.  To this day I still donít understand related and unrelated clauses because I was doing good to stay awake in sophomore English class and when it came to chemistry my senior year, forget about it.  I think I must have had a reputation as a rather odd character.  Most of the time I was sharp and knew just about everything the teachers were dishing out, but on the other hand I could seem to be in a fog on another planet, if other planets have fog.

The pattern continued through college and my first few years of working for newspapers as a copyeditor, but as time passed, the periods becoming longer and more frequent.  I thought there was something wrong with me when simple misspellings and inaccuracies slipped by and my headlines wouldnít make sense.  Thinking a change of scenery would make a difference I went from newspaper to newspaper until about 1980 when I reached a point I knew it wasnít the newspapers or the scenery but me.  My wife and I had a conference.  We agreed I would work at whatever I could until she earned her masters degree and become a probation officer, then I would stay home, raise our son and keep house.

This worked out well, as we had another child, a daughter which I raised to be an independent intelligent young woman who briefly when she was five thought washing dishes was menís work.  Come to think of it, I believe she still thinks that.  Anyway, during this time I also took temporary and part-time jobs, dabbled in theater and wrote several long, not-quite-right novels, receiving enough rejection slips to wallpaper a room.  I did have several plays produced and one was even published.   Some of my dreams and nightmares actually were pretty good stories which I used as plots.  Others seemed good in the middle of the night but in the light of day were actually rather nonsensical.  I graded essays for the state of Florida one year, wrote press releases for a mental health organization, taught a creative writing class and was represented by an agent who tried to sell a few screenplays I had written.  Nothing came of that, and I donít know if that was my fault or his.

 However, by the time I reached forty-nineócoincidentally the age my mother diedóthe bottom seemed to drop out of my energy supply and no amount of patience waiting for it to come back as it had before was enough.  I began seeking help from doctors, who incidentally have not learned much about diagnosis since 1960, and was told all I needed to do was get a job, see a psychiatrist, get exercise and eat plenty of raw vegetables.  I tried to get a job and failed; the psychiatrist told me to use cognitive therapy which helped me deal with the condition but didnít solve it; I exercised until I couldnít get out of bed; and Iíve always eaten raw vegetables so I knew that wasnít the problem.  One doctor at least acknowledged I had a physical problem and labeled it chronic fatigue syndrome, an umbrella term for various problems which were unknown and basically untreatable. Friends and relatives suggested various vitamins and even a form of enhanced algae, which looked like pond scum.  I held my nose, drank it and still couldnít sleep.  Then one day on the television news my wife and I saw a report about men who hit their wives in their sleep.  On the screen was a man rolling and flailing in bed, yelling incoherently.  My wife looked at me.

ďThatís you.Ē

I immediately made an appointment with my doctor, cautiously explaining what I had seen on television and how it matched my symptoms.  Thinking I had sleep apnea, the doctor referred me to a local sleep clinic.  After attaching wires around my head and watching me sleep one night the clinic diagnosed me with REM sleep disorder.  I would have rather had apnea, which is more common and can be readily corrected with a breathing device used during sleep.  The next couple of years were spent finding the right combination of medications to help me.  One upset my stomach, one made me even grouchier and another didnít help at all.  An anti-depressant helped me deal with the fatigue but didnít help me sleep.  A sleeping pill by itself would make me feel dragged out the next morning and not very pleased about it either.  Finally, by my mid-fifties, my sleep specialist and I found the right combination of sleeping and anti-depressant medication, and life became clearer again.  There was no returning to the job market, even part time, but I was able to crawl up and out of that trap door that had sprung on me several years earlier.

Which brings me to the point of my story.  One particular dream back in 1989 has become my dream come true.  I remember it vividly.  I was watching it, like a movie or play, and Abraham Lincoln and his wife were being escorted at gunpoint into the basement of the White House, which in my dream bore a remarkable resemblance to the dungeon in Man of La Mancha.  Secretary of War Edwin Stanton was there and said the president would stay in the basement until the war was over.  A fresh-faced soldier held the gun on the Lincolns and agreed with Stanton too enthusiastically.  In the corner was the janitor, a hunched-over pathetic old man who overheard the conversation and began to believe that he was the president who was being held captive in the White House.

From that time I wrote the little story over and over again, each time longer and with more characters.  A year or two maybe it sat forgotten in a desk drawer until the moment of the great diagnosis and slowly I began to get more sleepónot deep restorative sleep like most people haveóbut a better sleep that spurred me to continue to expand on my weird dream.  I went to the library, I bought books, I scanned the internet, getting the historical glue to hold the story together. 

Finally, in 2005 I self-published my novel Lincoln in the Basement and have sold more than 500 copies at Civil War re-enactment shows, booksignings and speaking engagements in Central Florida. With the help of the medications to combat my sleep disorder I finished another novel which I had started in the late 1970s and self published it in 2007. Sins of the Family has joined my other book on the table and has sold well. I am now putting the final touches on a third book which began as a play in the 1970s, Butterfly in His Hands which is about David Crockett. In addition to my novels, I have begun writing for a monthly newspaper called the Brooksville Belle and I am the secretary on the Hernando County Fine Arts Council.

All of this activity would not have been possible if I had not found the right doctor to make the right diagnosis. Besides the medication I have to use common sense on my schedule. If I spend a weekend selling books at a Civil War show I have to realize I'll need to rest more during the next week. If I have a fine arts council event at night I have to take a nap in the afternoon. This condition won't go away but I am learning to live my life around it.

REM sleep disorder sufferers all share a physical condition that can only be imagined by people blessed with good sleep, and we share a frustration of not being understood, just as others including myself cannot understand the trials of addictions, obesity, attention deficit disorder, dyslexia, among other states of health.   I donít want to count the number of times when as a child I was lectured, ďYou have to learn how to control your emotionsĒ or ďYouíre too sensitive.Ē

It is not a matter of learning behavior which comes naturally to most people; itís a matter of learning, patience, and looking for answers that take fifty years.




National Institute of Neurological Disorders and Stroke.Nih.Gov.

Sleep Disorder Channel.Net.