Friday, October 10, 2014

Teetering On The Right Side Of The Road

The Right Side Of The Road:
Some of Dad's Life Instructions
By Lori (DeMartin) MacKenzie
written October 2014

Which is the right side of the road?
Is there really a right and a wrong?
Show me Daddy, I don't understand 
Help me to bike along.

What is the right way to ring the register? 
How do I count change back?
I build my confidence by watching you. 
With these things, you have a knack.

What is the right way to turn around?
Why is it called a three point turn? 
What would I do without you Daddy?
How would I ever learn?

What is the right time to check the oil?
How do I change it too?
Thank you for all your help Daddy, Without you I'd have no clue.

What is the right time to move away?
When am I ready to leave?
You never hesitated to encourage my plans   
You even helped me to believe. 

What is the right way to plan my day? 
How do I know what to do when?
I know. I'll make a list like you
I'll get me some paper and a pen 

What is the right major and job for me? 
What should I do for work?
Do your job even when you don't want to
It's a responsibility you cannot shirk

What is the right way to handle
money? 
How do I keep it straight? 
Buy what you can afford and nothing more.
Pay on time and never be late.

Who is the right man for me to marry? 
What if I make a mistake?
There are not many out there like you Dad
I discovered that once a little too late  

What is the right way to deal with loss?
Why did you hate my tears?
You didn't want to see me sad
I didn't know for all of those years

Now I know the right side of the road 
What you've shown me, Daddy, I apply
Work hard and plan, be honest and cautious 
and it turns out, it's ok to cry.  

Sunday, October 5, 2014

Teetering Between Freely Mobile and Fully Comatose - Sleep Paralysis

She lay down to go to sleep for the night, mulling over the day's accomplishments and considering unfinished tasks pushed to tomorrow's to do list.  It happened right away, or at least it felt like it.  Her head hit the pillow, her eyes just closed and she was there, in that place.  "Oh no, not this.  Not tonight" she thought as she braced herself for what would likely be an unpredictable and exhausting night.  "Maybe if I can catch it early, then walk around or watch TV for a while, it won't be so bad.  Ok, here I go.  Should I relax a minute or just start fighting?  I'm so tired. I don't feel like fighting"  She knows that waiting almost always makes it harder to get out, it ends up being more work and more exhausting, "If I'm not careful, I'll go deeper and it'll hurt more"  The hurt is a sort of throbbing, achy all over feeling.  

"If I can get a finger or some toes moving, then maybe I can catch it now"  Although it is very painful and takes a tremendous amount of effort, the slight movement of one digit is a good place to start.  She has come to find that trying to move a digit, try not to go deeper and dealing with what feels like asphyxiation need to be carefully juggled.  If she focuses too much on the breathing, then she may go deeper, if she focuses solely on her moving a finger, then her breathing seems to get worse.  Too deep a breath can be bad.  A shallow breath, then some fight to move, then a brief pause to "rest" has been the best formula.  She has no idea how long it lasts. It likely feels much longer than it actually is. "Am I dying?  It feels like it this time"  She has been through this many times.  In her head, she knows she's not dying, but it always feels like she is.  She manages to move part of her right hand, "There, I can do this. Just keep trying to move, with only a quick breath in between. Try not to rest. You may lose it. Fight. You're almost there"  Philippians 4:13 runs through her mind, "I can do all things through Christ who strengthens me."  Finally, she can move her hand and with immense mental effort, she breaks free.

This is one example of me enduring an episode of sleep paralysis.  My next post will show that this is a milder example of my experiences with sleep paralysis, something which at one time in my life, occurred every night, often multiple times.  You see, when I finally break free, the distress in not over.  Despite how horrible these occurrences are and the past experience of knowing that if I try to go back to sleep right away, it will immediately and automatically reoccur, the urge to do so is stronger than words can convey.  I am compelled to go right back to sleep. These episodes leave me drained, as if every bone muscle cell in my body has been sapped of something essential to go on.  Every part of my body feels depleted of something.  It's as if some of the life in me has been removed.  It is very difficult to explain. 

There is so much more to sleep paralysis than what has been described above.  Along with the sensation of difficulty breathing, there is a feeling of pressure, sometimes milder and other times more intense, on my chest.  The episodes almost always happen when I am lying on my back, which gives the sense that breathing and breaking free are even more difficult. Also involved is an unpleasant tingly feeling in my body, especially my head and chest.  I can compare it a little with the hyper-sensitive "pins and needles" feeling when a body limb falls asleep.  Then, there is the nagging ringing "rushing wind" sensation in my ears.  This is more of a feeling than a sound.  For others, the paralysis can feel like an out of body experience.  I have only experienced that on a few occasions.    
The line between real and unreal is virtually non-existent during an episode of sleep paralysis.  Reality becomes something a sufferer determines through repeated experience and, at least for me, investigating through "trial and error".  For instance, on many paralysis occasions, I had the impression that my eyes were open, but I believed they probably actually were not.  So, I tested it myself one time to determine it.  I strongly recall one particular time when I had my mom's handmade knitted afghan over me.  When I sensed my eyes were open, I looked at and memorized the pattern, folds and layout of the afghan.  When I finally managed to awake myself, I observed the afghan to be exactly as I had observed it to be while immobile. It seems likely that my eyes open and I see while paralyzed, although not knowing for certain, it also crossed my mind that perhaps my subconscious mind could "know" small details that I am not aware.  The opposite end of the spectrum with regard to the question of reality is that of false awakenings.  The belief that I have awoken, broken free and am up and about, only to discover that I am still paralyzed lying on my bed.  Either way, it all is kind of fascinating in a way.  It would be even more so if I didn't have to endure it. 

Remember from my last post that narcolepsy is a disorder of sleep/wake cycle confusion.  So, people with narcolepsy can go into REM sleep immediately when they become drowsy and close their eyes.  Yes, that's right, I wrote IMMEDIATELY!  As many people are aware, normal sleep goes through a series of stages, with roughly similar time frames of each stage.  The first stage of REM sleep usually occurs about 90 minutes into sleep.  At this deeper level, the most restful and rejuvenating sleep occurs.  Our body, when it functions properly, is designed to operate in ways which support solid, deep refreshing sleep.  One way to ensure this is to prevent our bodies for moving.  Temporary but complete paralysis keeps our sleeping bodies from acting out our dreams and at the very least, from repeatedly falling out of our beds.  Simultaneously, our breathing changes to a less conscious type of breathing, again, to support a sufficiently deep enough sleep.  Now, imagine if you will, this process of paralysis and unconscious breathing taking place the moment you begin to enter sleep.  That explains the distressing sensations of narcoleptic sleep paralysis.  

It does not, however, explain the intense fear I have every single time, the fear that someone will find me in this state, try to wake me and not be able to.  I won't be able to tell them I am trying to wake up and can't. Some paralysis sufferers have reported that sleep partners have successfully woken them by simply touching them.  I have never experienced this and when I encounter an episode, I am utterly convinced that another person will NOT be able to help me.  The alternative is some unknown catastrophic fate I am desperate to avoid.  The ultimate fear is that I will not be able to awaken and that my loved one will think I am dead. 

For me, sleep paralysis, with all of it's varied and confusing aspects, can occur without it's common counterpart, hypnogogic (just prior to falling asleep) and hypnopompic (just prior to awakening)  hallucinations.  Although the paralysis can occur without these hallucinations, the hallucinations, at least for me, always occur with the paralysis.  In REM sleep, we not only become paralyzed and breath automatically, we also begin to dream.  Technically still awake, these dreams are actually very lucid hallucinations.  Why they are terrifying experiences and not just benign figments has peaked the interest of psychologists and theologians alike for centuries.  These vivid and terrifying hallucinations add fright to the already existing panic. Personally experienced primarily upon falling asleep, I still have yet to share the most tormenting aspect of immediate onset REM sleep. 

Friday, October 3, 2014

Teetering Between Wakefulness and Sleepiness: Narcolepsy

There she was, sporting that blue and white dated eye-sore of an ensemble and eagerly heading to the break room. "I'm not that hungry" she thought as she entered the stuffy room, littered with dirty plates and overflowing ashtrays positioned in the exact spots from several days before.  "That spot will do" she thought as she made her way into the right hand corner of the room leaving the door only slightly ajar.

She carefully settled herself in, moving the items which lay in front of her a good arms length away.  She made a couple more shifts in the chair and a scratch or two here and there where her skin was irritated by the rough checkered polyester.  "There, ready." With her arms intertwined, she lay her head as comfortably as possible settling in for this shift's brief siesta.  There she was on a beautiful summer day, a full 18 years young, catching a survival nap hunched over a dirty restaurant break room table.

Yup.  That was me nearly thirty years ago.  A teenager needing a nap after only a few hours on shift as a waitress.  The answer to your next question is no, it was not due to partying late the night before.  I was a typical young adult home from college for the summer needing naps in the middle of the day.  It would be another seven confusing years and many more naps later before I would learn of my narcolepsy diagnosis.  I don't think I thought much about it back when I snoozed hanging over the break room table in the back of Friendly's restaurant in Hyannis, on Cape Cod, where I grew up.  Along the way, however, the efforts to get those zzz's became more frantic; the locations, more daring.  Being desperate enough to lock the door to the small counseling office I used at my graduate school internship, about a year before I discovered my condition, and laying on the cold hard floor with my bunched up jacket as a pillow was for me, no pun intended, a wake up call. 

Hey, it's not like they were paying me.  I was an intern.  I would, however, in future positions, come to have my share of paid naps.  I got real good at covering too.  Pretending to be checking charts stored directly behind the door, which I "accidentally" locked, was my reason at the residential program I worked at for seven years post-diagnosis.  If a client knocked, I was checking charts and would be "just a minute".  If they slept late, then, well, I joined them, finding good enough comfort with my feet up on the desk leaning slightly back in the one chair out of window view. 

The ideal scenario came when I did individual counseling in a room with a love seat sofa in it.  I scheduled my own appointments and could schedule my naps and set an alarm.  Being fee-for-service meant my naps were on my time.  No wonder they call it a love seat. My drowsy self had a lot of post meridiem slumber on that sofa. 

Drowsy.  That is the word which I feel best describes the sleepiness of narcolepsy.  At the risk of seeming to embellish, this is not the tired which non-affected people describe when overworked or when experiencing the impact of the occasional poor night's sleep. It is the drowsy you feel when you are trying to stay awake and almost can't.  It is the drowsy a college student feels while in class the day after pulling an "all nighter" to get a procrastinated term paper in on time.  It is the drowsy a Red Sox fan feels when the game goes into extra innings but they finally go to bed because they "just can't keeps their eyes open another minute" (ok, maybe not the diehard fans!).  It is this kind of drowsy every day for a good part or most of the day; usually until it is time to go to sleep.

This is where trying to explain narcolepsy goes from tricky to bizarre. The best general description I have ever read of how to briefly describe narcolepsy is that it is a disorder of sleep/wake cycle "confusion"  How else would it make sense that someone who can barely keep their eyes open during the day lies wide awake and frustrated at bedtime?  That's right, struggling to stay awake during the day then suffering from insomnia, to a greater or lesser degree, at night.  The insomnia is without daytime naps to make sleep at night difficult and the daytime drowsiness of narcolepsy happens with or without the sleeplessness at night.  The brain of the narcoleptic suffers sleep/wake cycle confusion, and it is quite confusing indeed.

This excessive daytime drowsiness (EDD) is the one symptom common to all narcoleptics.  There are other symptoms which are not shared by all sufferers.  This is where bizarre goes to a whole other level.  Among narcoleptic support circles, both on and off-line, we often refer to ourselves as either having narcolepsy with cataplexy (NWC) or narcolepsy without cataplexy (NWOC).  I am a NWOC, so I cannot speak of the dread, inconvenience, embarrassment or fear in experiencing cataplexy.  The sudden complete loss of muscle tone, usually triggered by strong emotions, creates challenges and requires planning of which I cannot even imagine. Depending on how severe it is, this, as well as the extent of one's EDD, can deem an individual disabled and sometimes even not able to drive. 

My EDD has never got in the way of my driving.  I have, however, pulled over for a stretch or even an occasional nap.  There have also been more times than I would have liked when a bad night's sleep meant canceling plans. I spent a number of years taking jobs and planning my entire schedule around my unpredictable sleep needs.  A poor night's sleep could throw me off for a week or more and necessitate some of those desperate attempts to catch some Zzzzs at strange times and risky places. 

Narcolepsy doesn't end there though and despite the gratitude I have for not suffering with cataplexy and never experiencing any indications of needing to relinquish my driver's license, I have yet to describe the horror I endured for most of my young adult years.  Perhaps this was why sleeping nestled on the break room table didn't much stand out in my memory.  Back then, a mysterious tormenter entered my life and threatened my sense of normalcy.  A terrifying affliction, which, like the EDD, was rooted in my then undiscovered neurological condition. This tormenter had me thinking I might be going mad. The reality, though, is more transient and less predictable than madness.  A frightening and seemingly random mingling of air gasping paralysis and a barrage of phantom assaults.  Sound improbable? A bit sensationalized? Stay tuned to discover the very real and bizarre world of sleep paralysis and hypnogogic and hypnopompic hallucinations.