A Dreamy Valentine's Day

The stage was set for a perfect Valentine's Day.  Walking into my boyfriend Ben's house, I saw flowers and gifts beautifully displayed on the entryway table.  Butterflies fluttered in my stomach and I smiled to myself.  I didn't know yet that this evening of love would bring me down, literally.

For Ben, I'd planned a scavenger hunt around his house to lead him to his presents (a glittery homemade card and a book about vegetable gardening).  While he walked around the house, settling in after a long day's work - I stealthily snuck around hiding the scavenger hunt clues in their planned spots.  I shoved the first clue in my pocket, thinking, "This will be fun!"

When it came time to exchange presents - Ben brought his gifts in from the entryway and we sat down together on the couch.  I opened his gifts slowly - savoring the moment.

Then, it was my turn to give. I reached in my pocket and felt the small piece of paper - his "first clue" crumpling between my fingertips. It occurred to me that Ben would be confused and think "this tiny piece of paper is my Valentine?" This struck me as funny and ironic. I was clever to trick him.  He wouldn't be expecting a scavenger hunt!

I pulled the paper out of my pocket but my arm didn't make it across my body before giving out on me. Excitement and anticipation got the best of me and cataplexy set in.  My arm lay limp against my body, unable to move. My fingers relaxed, the clue gently falling into my lap. My eyes fluttered and closed. My jaw muscles slackened; I could not speak. My neck muscles gave out as well, so my head fell back against the couch cushion.

Ben is very attuned to my cataplexy and quickly recognized what was happening.  After a prolonged moment of silence, my jaw muscles returned briefly and I rushed to say, "Here's your Valentine. Read it." before more cataplexy set in.

Still unable to lift my own arm, Ben reached out to take the paper from my lap. He read the first clue out loud and laughed.  The feelings of fun and happiness were hard for me to avoid, leaving me fighting the muscle paralysis of cataplexy.

"Do you want me to wait a bit?" He asked, concerned about my cataplexy.

My muscle tone was coming and going. When able to speak, I replied, "No. Start!" I was so excited for him to begin the hunt.

"Are you sure?"

"Yeah, I'll just stay here. Bring clues in here to read." I wanted to go along to watch him looking for clues, but there was no way I could leave the couch (because I was struggling to maintain my muscle tones against my feelings of fun and excitement).

So he dashed off to find clue #2 and brought it back in the living room. He found it quickly! Before long, he had Clue #3 in hand.

As Ben read clue #3, another wave of happiness and cataplexy came.  I slumped to a laying down position on the couch so my head would be better supported.  My body lay like dead weight.

When I gained back some control, I started crying, frustrated by the uncomfortable loss of muscle tone.

"Why don't I take a break?" Ben said, upset to see me cry. "Lets watch TV or something until your cataplexy passes."

I shook my head no. I was so excited for him to finish the hunt and find his presents that I couldn't wait.  Even though cataplexy was getting the best of my body - I refused to stop our Valentine's evening.

So Ben continued on, finding the clues and eventually his gifts! He brought them into the living room so I could watch him open them.  By now, my cataplexy did pass completely so I was able to sit up and talk normally (something I would usually take for granted, but now I felt very lucky to have my body under my control again).

Cataplexy, a symptom unique to narcolepsy, is a loss of muscle tone usually brought on by emotions such as humor, annoyance, anger or surprise. For me - my biggest triggering emotion is when I think my own joke is funny - like this scavenger hunt.

The loss of muscle tone with cataplexy can range from a slight buckling of the knees or slackening of the neck to full body collapse.  This prolonged episode - drawn out by each time Ben read another clue - dragged on over a minute, making my Valentine's Day cataplexy attack one of the longest I've ever had.

Why is this happening? In people with narcolepsy, the wake/sleep/dream cycle is confused and aspects of REM (dream) sleep - take place at inappropriate times.  When a normal person enters REM sleep - thoughts and emotions run through the brain and the body paralyzes itself so that it won't act out these thoughts and emotions (the basis of our dreams).

During Ben's scavenger hunt, I felt emotions of happiness, excitement and humor - but my brain misinterpreted these, thinking I was entering dream sleep - and paralyzed my body accordingly.  Cataplexy is the same muscle paralysis of dream sleep - inappropriately taking place while I am fully awake and conscious.

So I guess you could say it was a dreamy Valentine's Day. Perhaps a little too dreamy, but dreamy none-the-less.  Thanks to Ben for his support and understanding.

Adventures of the Sleepy Yogi Part III: Traveling the World in Search of Peace

Just call me World-Traveler-Extraordinaire.  Two days ago, I took a boat-ride alongside the highest dune in Europe - the Dune du Pyla in the south of France.  Yesterday, I strolled the banks of the Charles River in Boston. Today - I walked barefoot on a beach in Jamaica.

Well, all that's not entirely true.  Although I feel like a globe-trotter - I've actually been visiting these amazing places from the comfort of my own home. Sound too good to be true? I know. I have some explaining to do.

Recently, a close friend of mine has faced some serious health complications.  Although I knew I couldn't take this illness away - I needed to do something to help. But what? I searched the Internet. I leafed through my sizable collection of inspirational books and medical memoirs.  What could I possibly give this friend to help them through this difficult time? And then, I remembered The Hypnotic Voice.  

Three years ago, a friend shared a CD of meditation/guided visualizations with me. At the time, I was over-anxious about law school and struggling to adjust to life with narcolepsy and the CD was designed to help with stress-relief.   I copied the tracks onto my iPod but didn't listen to it.  No soundtrack was going to solve my problems or cure my narcolepsy, I thought.  

A few weeks later, I was listening to my iPod on shuffle while studying in the library, when one of the meditation tracks came on.  I reached forward to skip to the next song, but something about the woman's voice caught my attention. She was soothing, friendly and hypnotic.  

Always looking for an excuse to procrastinate - I decided to sit back, close my eyes and give the Hypnotic Voice a chance.  In the exercise I listened to, she asked me to imagine a comfortable and safe place and insisted I spend some time really being there - looking at the scenery, feeling the air and touching my surroundings.  

I thought this was slightly hocus-pocus, but after the track finished, I felt refreshed and focused.  My mood drastically improved in 17 minutes. How odd. 

Throughout law school, I listened to the CD often. It helped me tremendously to manage my stress. Since then, I changed computers and iPods and forgot about the Hypnotic Voice. Until last week, in thinking about what I could do to help my friend - I unpacked my old computer, found the tracks and pressed Play. As the familiar voice filled my room, I regretted having gone a day without her. 

Although meditation may not take all pain and suffering away - it's probably the closest thing to a cure-all.  Various studies suggest that it has incredible stress-reducing and healing benefits.  For me, the most fascinating and powerful aspect of the practice is the freedom it gives me to control my feelings.  Meditation teaches that our outside circumstances mustn't always control our inner-experience.  As eloquently described here:

"Usually we find it difficult to control our mind. It seems as if our mind is like a balloon in the wind – blown here and there by external circumstances. If things go well, our mind is happy, but if they go badly, it immediately becomes unhappy…

Such fluctuations of mood arise because we are too closely involved in the external situation. We are like a child making a sandcastle who is excited when it is first made, but who becomes upset when it is destroyed by the incoming tide. By training in meditation, we create an inner space and clarity that enables us to control our mind regardless of the external circumstances."(www.how-to-meditate.org)

I highly recommend Meditations to Relieve Stress by Belleruth Naparstek (a.k.a. The Hypnotic Voice) for everyone (listen FOR FREE here). My favorite is Track 2: "Peaceful Perspective." It's simple and affective and just think -  you too can leave the snow and cold behind to travel to your favorite places in the world for 17 minutes a day!

Click here to read Adventures of the Sleepy Yogi Part I: Meeting the Double Pigeon
Click here to read Adventures of the Sleepy Yogi Part II: From Hallucinations to Inner Peace