Thriving With Change
One thing I know is true and inevitable in the universe is that change happens. Even the basic cycle of life includes birth, growth, life grown, aging, and death.
For me, narcolepsy wasn’t as devastating a change though, as I had enough going on during the time of my diagnosis, which did not make it seem so impactful as selling my condo, moving 500 miles for a new job, moving away from everyone I knew, separating my children into 2 homes and divorcing from a marriage that lasted almost 15 years. All within a 2-month time period.
The diagnosis happened, but the change had occurred many years prior. As Shakespeare wrote, "A rose by any other name would smell as sweet." A medical condition by any other name is, well, a misdiagnosis. But no matter what you call it, you still have a medical condition. I suffered from narcolepsy with cataplexy (type 1), but my symptoms weren’t usually my greatest challenge.
Adapting during my teenage years
As a teenager, falling over laughing seemed normal and natural. Didn’t everyone do that? I became self-conscious though when I got stuck laughing… I used to sound like a machine gun had gone off or when the Joker dies at the end of Batman and you find out his laugh was a tape recording. I stopped laughing as a teenager because people would joke more about my laugh than what started the laughter in the first place.
I adapted quickly as a teenager, though not always as successful as I had hoped. Like the time I fell asleep in German class because it was my first period of school, but I had practiced ice hockey for an hour prior to that class at the bright and early 5:00 AM. My teacher didn’t give me a lot of grief because I had the best grade in the class, but I know he was disappointed whenever I didn’t participate.
Amazed at how I pulled it off
Despite having been very sick my 9th grade year due to a chemical accident, I had really good grades and worked hard to get myself through what I considered the hardest time of my life. My family had moved 13 times during high school and we sometimes lived in conditions less than ideal.
We survived that ordeal, but I look back and wonder how I managed the brain fog, chronic fatigue, sleeping on textbooks, and still got good grades. It still amazes me at times.
Coping in college was much harder
College was phenomenally more challenging and I faced stress that led to significant episodes of sleep paralysis and pushed the hallucinations to the limits. I had to ask for accommodations and thankfully my school provided them without significant hurdles.
I am so grateful for that time because I would not have made it through that year without my mother. She gave up her career to care for our family but she wasn’t always available because I have 2 older siblings and a much younger one as well. The semester I requested accommodations from the university was the year I withdrew from more classes than I remember taking.
Graduating from college and more life changes
Somehow I graduated college, got married, and had 2 beautiful children. In all this time, I had narcolepsy, my life had changed in so many ways, and I continued to live. I know my diagnosis took many years.
Despite not knowing the name for my condition and accepting basic facts about how things had already changed, would likely never be the same and in fact, continue to change, I persevere.
New diagnoses, new growth
I am sure that I grieved over the loss of a healthy, non-complicated body years ago. Even that is a process and in the end, leads us to a new place and a different part of my journey. The challenges of narcolepsy are not a light matter and often come hand-in-hand with other conditions.
For me, I have type 1 narcolepsy, obstructive sleep apnea (OSA), scoliosis, and thoracic outlet syndrome (TOS), which is only naming a few. Each new diagnosis is a change in my life, yet I can say that I get one step closer to managing my health in ways that are more within my own grasp of handling.
Embracing a life of change
Life is ever-changing for me and I continue to embrace each change that comes. Some days it is coping, some it is dealing, but other days I’d like to say I thrive in a life of change.
I say this as my country prepares for a change in leadership, my hair turns from gold to silver, my children grow into young men and the cat that I have had for almost 17 years nears the end of her life. Change happens and this is the life I am living.
How have you handled living with narcolepsy throughout life changes? Join our community and share in the comments below.
Do you feel that your doctor understands narcolepsy?