When a Heroine Needs a Hero (Or Two): A Little Sister’s Perspective on Narcolepsy and Cataplexy

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This is one of my favorite photos of the older of my younger sisters and me.  (She’s on the left; I am on the right.)  We went on a trip to Daytona Beach, FL years ago.  2006 I think?  We had a blast as we do when we’re hanging out together.  I love all three of my siblings, of course, but she’s been my built-in best friend since she was born.  I asked her to write about how my diagnosis with narcolepsy with cataplexy has impacted her life, specifically cataplexy.  The following is what she wrote.  I’m forever thankful to have her in my support system.

What is cataplexy?  According to Wikipedia, “Cataplexy is a sudden and transient episode of loss of muscle tone, often triggered by emotions such as laughing, crying, terror, etc.  It is a rare disease prevalence of fewer than 5 per 10,000 in the community), but affects roughly 70% of people who have narcolepsy.  However, in rare cases, cataplexy occurs without the co-occurrence of narcolepsy.  The exact cause of cataplexy is unknown, but the condition is strongly linked to experiencing intense emotions and reduced levels of the neurochemical hypocretin. “

That’s the definition text books, medical journals and doctors offer, but in my life it’s an evil robber who comes and steals my heroine’s laughter as well as teaches her not to be so angry.  My older sister was formally diagnosed with narcolepsy almost two years ago (is that really all?) but it and its cohort cataplexy have been an awkward source of laughter longer than I can remember.  First time I can remember this bastard thing knocking my sister down was when I was 11.  We came in from playing on a hot summer day and she began chugging from water bottle.  Water started coming out her nose, yet she kept chugging for a few seconds later, more water gushing from her nose.  Laughter bellowed from both of our mouths until her knees got weak and the counter saved her.  Strange as it was, at 16 my sister thought it was normal and we kept going on with our days, months and years.

Then one day, I heard the words “narcolepsy” and “cataplexy”, and things started to make sense.  I also instantly became angry because these words gave my best friend a non-removable, incurable label.  I thought her life would be terrible from that very second and burst into tears for hours.  We have had so many fun times and here was this evil thing taking her life over.  Well, much like everything else Heather has faced, she strapped up her boots and geared up to face narcolepsy head on.  Her diet, lifestyle, medications, job…even her love life changed out of necessity.  In order to give her a fair chance she had to take back some of herself.  It was at this point that I learned the value of true love.

My sister’s husband, John, not only stood by my sister through every diagnosis, life change, and bad day, he tried to make every day better for her.  He taught their beautiful daughter how to torture her mommy and that her bad days can always be fixed with hugs and kisses accompanied with nap or two. :) John helped my sister find her passion of cake decorating and running to work off all the yummy sweets. He loves her unselfishly, beautifully, and humorously. These words “narcolepsy” and “cataplexy” scare many husbands or partners away, but not John.  In fact, John grew a superman cape and became my sister’s personal catcher, fall breaker and honestly main source of laughter in the first place.

In the kitchen while working on Thanksgiving dinner she had a cataplexy attack and there John was, catching the sack of potatoes my sister had become.  This was the first time I had seen this cataplexy so bad and John move so fast.  Over the next few months my sister became more tired and stressed, her narcolepsy getting worse along with her sensitivity to emotion.  This left her zombie like, lifeless almost. At a family dinner out at a restaurant, our father was doing what he does best and terrorizing the wait staff while complaining about everything.  My sister looked up at John and then I saw her eyes roll back and the lights turn out as her body slumped in her seat.  I panicked.  My best friend, my heroine, my rock was turned into a pile of sand unable to even support herself.  This was the worst thing I’ve ever seen.  I cried all the way home begging my dad to learn what it was because Heather deserved compassion and he needed to learn not to bring on her attacks.  Most parents don’t want to hear they cause their child harm.  Others are too stubborn to take themselves out of first in line.  Once again, John stood by her showing her true love and what family is.  It was then I took another lesson from my sister and took my life in charge. Thanks to her, I have tried to persevere through no matter what.

I can’t tell you how much I still hate narcolepsy and cataplexy because they still rob my sister of so much, but Heather has made them just another bump.  This became clear when we went bowling for our youngest sisters birthday.  Their daughter was cheering Heather on yelling, “Turkey! Turkey!” when suddenly the ball took out all 10 pins and all of us broke out in excitement.  Heather turned to see her loved ones cheering and all our love was too much.  Her left leg went first.  She stumbled then the next step was like one of my stroke patients dragging their leg behind them.  John with his superman cape and powers flew to save her from becoming one with the unforgiving bowling alley floor.

He carried her body to the chair and she didn’t sit – she melted in the chair.  I found myself panicking again.  Heather was fine until she was too happy, and it made me scared to provoke emotion.  The sleeping-but-not-sleeping look, the instant stature change, and the total shock weren’t the worst part of it.  No, the worst part was the carving of distance between us until she came to, which felt like years when in reality was 10 seconds.  No one wants to see their loved ones melting, but my sister does it with class and style with a hero of her own ready to catch her every failed step at a time.

Narcolepsy and cataplexy changed my life but not for worse.  My sister knows without a doubt she is loved, she has someone to always catch her, and knows no matter what this little sister will always have her back.

People with narcolepsy aren’t the only ones who suffer when a diagnosis is made.  Our loved ones also pay a price.  I’ll be thinking of my sister when I run next weekend for the Strides Against Narcolepsy Run/Walk to raise funds for Wake Up Narcolepsy, the only organization dedicated to helping fund research to find a cure.  If this story touched you in some way, and you have $5 you can spare, please consider donating towards this cause.  You may donate directly to WUN in conjunction with the event here.

 

Comments

  1. Katie says:

    Thank you for sharing. Very moving.

  2. This made me tear up. Proud to be running for life-changing research..

  3. Amanda says:

    Cataplexy with Class!!

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