World Narcolepsy Day is a special day of celebration for my family
On Sept. 22, I celebrate the narcolepsy community and two birthdays
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Sept. 22 has always been a special day in my family.
Long before it became a day when I would celebrate and advocate for the millions of people around the world affected by narcolepsy, Sept. 22 was already reserved for two very important birthdays: my father’s and my mother-in-law’s.
Yes, somehow I married into a family where my dad and my husband’s mother share the exact same birthday.
When my husband and I started dating, I remember how much fun we had going birthday shopping for our parents together. We would laugh about the coincidence and shop for two of the most important people in our lives at the same time. Even then, Sept. 22 felt like a special little connection between our families.
Then life got even more interesting.
Another reason to celebrate
Our daughter, Savannah, now 11, was around 3 years old when we began celebrating something else on the 22nd: World Narcolepsy Day. Suddenly, our already busy birthday became even more meaningful.
Columnist Rachel Nesmith celebrates World Narcolepsy Day with her family. Back row, from left: Kerry Harrison, Susan Nesmith, David Nesmith, Lisa Harrison, and Janie Harrison; front row, from left: Rachel Nesmith and Savannah Harrison. (Courtesy of Rachel Nesmith)
From that year on, Sept. 22 became a day filled with celebrations. We had birthday celebrations for my father. Birthday celebrations for my mother-in-law. And somewhere in between the cake, presents, family gatherings, and birthday wishes, we also celebrated World Narcolepsy Day.
I have always joked that we get a great deal of parties packed into one day.
We have separate birthday celebrations, but somehow it all comes together around the same time each year. There is always plenty to celebrate, plenty of people to love, and now another reason to reflect on a condition that has shaped so much of my life.
World Narcolepsy Day is different from a birthday celebration, of course. Narcolepsy is not something I would ever choose to celebrate having. If I could blow out birthday candles and make narcolepsy disappear for everyone living with it, I would.
But that is not what World Narcolepsy Day means to me. For me, it is about recognizing the people behind the diagnosis.
It is about remembering the children struggling to stay awake in school while teachers may mistake their symptoms for laziness. It is about the adults trying to hold on to careers while fighting overwhelming sleepiness. It is about people experiencing cataplexy and losing control of their muscles during moments of laughter, excitement, surprise, or emotion.
It is about the people who have spent years searching for answers.
It is about the families who have learned that loving someone with narcolepsy sometimes means understanding a life that does not follow a traditional schedule.
And it is about making sure people living with narcolepsy know they are not alone.
A journey of love and strength
That is why I think it is so fitting that World Narcolepsy Day has become intertwined with such an important family day in my own life.
Happy World Narcolepsy Day, and happy birthday, Dad and Mom! From left, David Nesmith, Janie Harrison, and Savannah Harrison enjoy the festivities on Sept. 22. (Courtesy of Rachel Nesmith)
Sept. 22 reminds me that life can hold many things at once.
You can be exhausted and grateful. You can struggle and still celebrate. You can live with a chronic neurological disorder and still have laughter, birthday cake, family traditions, dreams, music, purpose, and joy.
Narcolepsy has taken many things from me over the years. It has changed the way I move through the world. It has affected my independence, my relationships, my confidence, and countless ordinary moments that other people may never think twice about.
But narcolepsy has also introduced me to an extraordinary community.
It has connected me with people who understand what it feels like to fight sleep when the rest of the world expects you to simply stay awake. It has given me opportunities to advocate, educate, tell my story, and hopefully help someone else feel less alone.
So when Sept. 22 arrives each year, our family has a lot going on.
There are birthdays to celebrate. There are gifts to give. There are cakes and family gatherings. And there is World Narcolepsy Day.
For some people, Sept. 22 may simply be another day on the calendar. For me, it is a reminder of family, love, tradition, advocacy, and the journey that brought me here.
It is a day when I celebrate the people I love. And it is a day when I celebrate the strength of a community that continues to fight for understanding, awareness, research, better treatments, and a world where people with narcolepsy are finally believed.
That is a lot to fit into one day.
But then again, after living with narcolepsy for most of my adult life, I have learned something important: Life does not have to be perfect to be worth celebrating. And on Sept. 22, my family celebrates just about everything.
Note: Narcolepsy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Narcolepsy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to narcolepsy.
Abbey Balamucki
Beautiful words I felt in my soul.