The Pause-and-Nod

So, it’s the holidays and I travel a lot around the holidays.  Recently, I sat next to a woman on a short hour-long flight.  We did the little awkward half-smile when she sat down, then I promptly fell asleep before the plane took off.  

About half way through the flight, I awoke and somehow got chatting with my neighbor. Only a few sentences in, “it” came up. She’d asked a simple question, but the answer would disclose that I have narcolepsy. Should I divert the conversation or tell her?

I decided to go for it. I told her I have narcolepsy and knew exactly what was coming next -- she paused for a split-second and nodded her head “yes,” in apparent recognition of narcolepsy.

I used to cringe at the pause-and-nod, fearing where the convo would go from there, as it could take one of many directions.  The person could ask, “So could you fall asleep right this second?” or they might offer an anecdote about a time they fell asleep in an odd place.  I used to smile and nod back politely, realizing we weren't on the same page.

Worst of all, the pause-and-nod could be followed by nothing at all.  During the first two years following my narcolepsy diagnosis, I dreaded this nonchalant conversation drifter the most.   It was not uncommon that after saying I have narcolepsy, a person simply paused, nodded and moved on to another topic, as if I’d just reported a random tid-bit like tomorrow’s weather or the score of a sports game.  Time after time, I watched in disbelief as a major part of my life fizzled and disappeared in the empty space between others and myself. 

After collecting a handful of distasteful exchanges, I stopped telling people about my narcolepsy as freely.  I told superiors only to explain particular behavior or actions.  I kept the information private from casual friends and acquaintances.  I even hid narcolepsy from a guy I liked until our fourth date when I panicked and awkwardly busted it out with full-blown tears as if I’d been holding back top-secret classified government secrets from him for years.

All this changed after I graduated from law school and moved to Washington DC to begin working on a memoir about my experience with narcolepsy.  In DC, people strike up conversation with the question “What do you do?” This took me off-guard, as work status was a third or fourth layer conversation topic in Boston.  And what would I respond? I was working full-time on a memoir about narcolepsy…

Ready or not, I began talking about narcolepsy quite a bit. I’ve told countless acquaintances, strangers at bars, fellow passengers on flights, store employees and nail technicians.  I’ve perfected my “talking points”  - and depending on circumstances, I can steer the conversation in many different directions.  I wait for follow-up questions and always maintain control over the tone and direction of the conversation (At the bottom of this post, I’ve drafted a few general guidelines and sample responses to common questions.)

On this particular plane ride, the woman next to me was very fascinated to hear my story.  Like many other people, she enjoyed learning about something she’d “heard of” before but didn’t know much about.

I now see these interactions as opportunities to raise awareness.  Maybe someday one of the people I’ve told will think of narcolepsy when someone they know has issues with sleepiness or experiences muscle weakness with emotions.  Putting narcolepsy on people’s radars has become a fulfilling part of my life.  I no longer dread these conversations, instead looking forward to them – relishing in the pauses and inquisitive looks. I expect the odd-ball questions and I am caught off guard when someone has a cousin or friend with narcolepsy and already knows what it’s really about. 

Most importantly, I no longer let others’ misperceptions or lack of knowledge about narcolepsy control the conversation or shape my self-image.   I still encounter conversation-drifters.  Some people aren’t interested in learning about narcolepsy.  Like sports or ballet, health and science aren’t everyone’s cup of tea. I accept this and move on. Yet strangely, it is often the people I least expect who are moved by my story.  

In closing, wishing everyone safe travels and abundant happiness this holiday season! Thank you for reading my blog and supporting my experience this past year.  Sharing my story here has given me the strength and courage to raise my voice in other spaces.

A few general guidelines for conducting conversations about narcolepsy:

1. Keep an upbeat tone. The information I am imparting may be serious, but I try to keep a positive demeanor.
2. Leave out the big “science-y” words – they’re distracting.
3. Less is more – I try to limit myself to one or two sentence responses and let people follow-up if they are interested.

A few of my favorite responses to general questions about narcolepsy:

Q: So that’s the thing where you fall asleep all the time?

A: Sleepiness is an aspect of narcolepsy, but it’s a much more complicated disorder. 

Q: Could you fall asleep right now?

A: Probably not. I experience episodes of extreme sleepiness, but it’s generally brought on by situations that would make anyone tired (like dark rooms, hot rooms, and jet-lag), but these situations make me 100 times more tired than a normal person.

Q: So how does that work - were you born with it?

A: No, people aren’t born with narcolepsy. It’s an autoimmune disorder in which a particular group of cells in the brain deteriorate. Scientists are still figuring out what causes the autoimmune attack on these particular brain cells.

Q: Is there treatment? 

A: I manage my symptoms by taking medication twice a day and twice a night. I also nap twice everyday. The best medications improve my symptoms somewhat, but make me sick in other ways.  It's a give and take situation.

Q: Is there a cure?

There is currently no cure and better treatments are needed, but scientists are working towards one, so hopefully someday! 

Moving Research Forward

As I arrived in Boston this morning, nerves tumbled in my stomach. I walked through a picturesque snow-swept Copley Square, past the finish line of the Boston Marathon.  I was in Boston -- not to run, but to face another formidable challenge. I was here to participate in a Narcolepsy Stem Cell Research Study.

As described by the research materials:

"It has been possible to study disease in animals by using their skin cells to make stem cells.  You may have heard about these special cells that can develop into many types of body tissues in the laboratory. We believe that stem cells may one day be useful for curing diseases as well.  As an example, replacing the nerve cells that are missing in the brains of people with narcolepsy might cure this disease. 


We want to make stem cell lines (cells grown in dishes that keep growing in the laboratory) from the skin of people with narcolepsy. We will take a skin biopsy from the leg. We will then induce these cells to become stem cells. These cells can then be developed into more specialized cells, such as nerve cells. Then we can test the cells to find out why they die, and also how to keep them alive and healthy. Saving these cells might one day offer hope of a way to prevent or cure narcolepsy."

A few months ago, when I heard about this study, I signed up immediately (you must have well-documented narcolepsy and a clear history of cataplexy). I didn't think twice about it - of course I'd love to help move narcolepsy research forward in any way - running a marathon or contributing a small amount of skin. No big deal.

Nevertheless, as the day of the appointment approached -- my nerves set in.  I may be "strong" when it comes to athletics, but medical procedures are a whole different story. I am very squeamish just thinking about blood, etc.  

Luckily, I was able to consult with a close friend in the narcolepsy community who had already participated in this study. She reassured me that it was a quick process with minimal discomfort. Entering the building for my appointment today - I had mixed feelings. Intellectually, I knew I'd be okay. Emotionally, I was a hot mess.

My nerves were quickly calmed when Dr. David White greeted me with a smile. Dr. White is conducting this study with several investigators from the Harvard Stem Cell Institute.  The procedure went very smoothly. I will have to take two days off from exercising to allow the area to heal.

Although this skin biopsy procedure was slightly outside of my natural comfort zone, I am so glad I participated. I am honored to be able to help narcolepsy research in this capacity. I look forward to hearing how this research helps improve our understanding of hypocretin cells and why they are missing in the brains of people with narcolepsy.

Note: More participants are needed.  If you are in the Boston area and interested in finding out more information and possibly participating, call 877-SLEEP-HC or email sleepresearch@sleephealth.com.

Adventures of the Sleepy Yogi Part I: Meeting the Double Pigeon

A fistful of frosted night air punched across my cheek as I crossed the parking lot.  A shiver slithered down my spine.  Drifts of lost snowflakes danced aimlessly in a street lamp. I'd rather be home, I thought, as I tugged the yoga studio door open against a resistant gust of wind.

Entering the Tranquil Space studio in Arlington, subtle hints of lavender and incense quickly brought me far far away from the brutal outdoors - I'd entered a whole other, more awesome universe.  I checked in at the front desk, shimmied out of my shoes and excess layers of clothing and slipped into the warm wood-paneled "Rain" room, just as the instructor finished announcements.

About twenty young females sprawled over their mats, bending their long limbs at various angles - showing off their flexibility.   Instinctively, I tip-toed towards the back of room, rolling out my purple mat in a spot in the far righthand corner of the room, as far away from the web of yogis as possible. I wanted to be invisible, or at least as conspicuous as possible.  It had been a year since I'd attended a yoga class.

The instructor, a young upbeat blonde woman began by asking us to forget everything that was going on in our life, she said "Just for now, forget about the Holidays and whatever else is weighing on your mind."  My stomach clenched, Oh goodness, the Holidays!  Her reminder to forget reminded me to remember.   I have so much to do, I thought, I shouldn't be wasting my time here.

Next, she instructed us to breathe into three different places. "First, breathe into your stomach, then into your rib cage, then into your lungs." I closed my eyes and lifted my stomach up, filling it with the fresh warm calming energy.  Next, the energetic breath rolled up my chest, lungs and throat.  My neck and head relaxed onto the mat.  Goosebumps formed on my forearms.  It was a simple exercise - yet breathing never seemed so deliciously complex.  In a way, I felt as if I was breathing for the first time - letting new air reach places in my body I'd forgot air could go.  

After this, we moved into traditional yoga flow exercises and twist positions.  The various positions' names were familiar - Warrior One, Warrior Two, Downward Dog, Plank, Chaturanga, Cobra, Child's pose.  Out of the corner of my eye- I constantly monitored my fellow yogis to make sure I was in the right position.

In a few awkward twisty balance positions, I literally toppled over - catching my balance by reaching out to the conveniently close side wall.  Although frazzled with embarrassment, I tried to quiet my ego, reminding myself -- So what, Julie, you stink at yoga. Gotta start somewhere!  Thankfully, I was in the back of the room, so my fumbling wasn't too obvious anyway.

Towards the end of class, the instructor announced, "Next, we'll do the Double Pigeon."  I knew the Pigeon Pose well - an intense butt stretch that is particularly helpful for my running knee problems, but I'd never heard of the DOUBLE Pigeon. The instructor led by example, nonchalantly lifting her right foot over the opposite knee - a more intense pretzeled crossed-leg position (see image above). 

I grabbed my right foot and forcefully drew it towards me and placed it on my left knee. My right leg wavered and sprung out of position.  "This is a very intense stretch," the instructor qualified as she bent her chest over her crossed legs, "so if you prefer, you can do a simpler single-leg pigeon pose."

Although intrigued by the Double Pigeon, I wasn't ready for it.  So while everyone else leaned over their pretzeled legs, I shifted my weight around to take on the original "simpler" Pigeon.

I managed to stay awake through the final minutes of quiet meditation - a rare occurrence for this sleepy yogi.  Much to my own surprise, this yoga class turned out to be the most cherished hour of my day.  Returning to my car in the parking lot, I barely noticed the frigid conditions, having warmed my body and spirit to face the rest of "life" with a slightly greater sense of peace and strength.

Mission REM Reach

I can't touch my toes.

No, it's not the end of the world.  Yes, I have more pressing problems.  There's laundry to do.  Bills to pay.  Holiday cards to send.  Phone calls to return.  Deadlines to beat.  My "to-do" list has gotten so long recently that I've separated it into multiple shorter lists to make it less intimidating visually.

Yet, late last night, I stood next to bed and collapsed my upper body over my lower half, hanging my head lethargically upside down for a few seconds, hoping to calm my mind before sleep.  However, this simple exercise didn't have the soothing effect I'd hoped for.

REM Rusty

Instead, a burning session radiated from the back of my legs.  My butt ached like woah.  My hands hovered a few inches above the ground.  Really, Julie, that's the best you can do?  I took a deep breath and leaned into the stretch with full concentration.

Still, my fingertips dangled in thin air.  I stood up quickly, shook out my legs and jumped into bed, hoping the stretching Gods weren't watching.

Although I've never been particularly limber, my flexibility has reached an all-time low. Over the years, I've dabbled in Pilates and various forms of Yoga -  from Vinyasa to Yin to Nidra (Dream Yoga - very interesting practice for people with narcolepsy).  However, I've never established a long-term commitment to stretching the way I have to running and eating healthy.

To be honest, I hate stretching.  I'd rather run for an hour than stretch for half an hour.  Yet, my tendinitis in my knees has been so inflamed recently that running an hour is painful. Stretching on a regular basis would drastically improve my condition and allow me to run longer distances.  So what's holding me back?

Sometimes it's hard to get it "all" done.  I often pick out ten goals for a day and find myself inevitably  falling short.  There are big priorities that can't be avoided.  Then, there are smaller things that pop up.  I put off things - like Pilates and Yoga - for no good reason other than the fact that the only person hurt by this is me.  And slowly but surely, my body and mind disconnect.    

Photography by Julie Flygare

So, it's time to slow down, stop hurrying and worrying. It's time for Mission REM Reach! The goal of my mission will be to reach my toes and reconnect my body and mind.  To fulfill my mission, I vow to explore various meditative, stretching, and exercise routines and practices and share my experiences here.

I am open to suggestions, but cost will be an important consideration.  I would love to travel to Italy, India and Indonesia to find "myself" but I'm hoping that Washington DC will provide a romantic enough backdrop for my soul-searching health-enhancing stretch-quest.

Inflexibly yours,
Julie