Wake Up to What Matters Most!

Wake Up to What Matters Most!

The Challenges of Living with a Sleep Disorder

By Anthony Lequerica, PhD, research scientist in TBI Research at Kessler Foundation. Dr. Lequerica, a neuropsychologist, shares how he manages life with a hidden disability, and succeeds in helping himself and others with disabilities. 

 

At age 16, the onset of narcolepsy, a life-long neurological disorder, diverted me from my plans to go to medical school, but put me on a path to a career for which I have a great deal of passion. I decided to major in psychology and with much hard work and perseverance, and the support of friends, family, teachers, and university organizations, I earned my Ph.D. It took me a LONG time, but I did it. Along the way, I learned many important lessons about accepting my limitations and educating others about disability. As a result of my experience, I gained new-found empathy with others with disabilities.

 

Through an externship at a rehabilitation hospital and a postdoctoral fellowship in rehabilitation research, I found my niche - working with individuals with neurological impairment. At Kessler Foundation, I work to improve the lives of people with disabilities on two levels - with individuals through my clinical work, and on a global level through my research. My areas of expertise are managing sleep/wake disorders after brain injury and exploring how cultural issues influence rehabilitation outcomes.

 

For those of you who are unfamiliar with narcolepsy, this disorder causes symptoms of excessive daytime sleepiness, hallucinations when waking or falling asleep, cataplexy (sudden loss of muscle tone triggered by strong emotions or excitement), and sleep paralysis (waking up and not being able to move no matter how hard you try). Unless you see me having a cataplectic attack, I don’t appear disabled, so I describe my disability as a hidden disability.

 

Having a hidden disability makes it difficult meet the expectations of others. Looking at you, they may not realize the struggles it may take to do ordinary things. For me, things like laughing, catching a ball, or descending a flight of stairs, can prompt a cataplectic attack – causing me to fall suddenly, like a marionette whose strings have been cut.

 

Making it through the day requires me to schedule 15-minute naps at key times, and even then I may lose the battle to keep my eyes open. A former employer could not understand why I could not stay late at work to meet a deadline. At the end of the working day, it is often a struggle to keep my eyes open and I am more susceptible to collapsing from cataplexy or having hallucinations. My speech can become slurred and I am likely to say or write things that do not make sense.

 

For these reasons I make an effort to disclose my disability so that it is no longer hidden and I am not misunderstood. Disclosing my disability makes it easier to ask for help. Because I am not always aware of my bouts of daytime sleepiness, I have asked certain co-workers to tell me when they see my eyelids half closed during a meeting so that I can take a break before my work is affected.

 

In rehabilitation research, we often measure “adjustment to disability.” For some of us, just trying to live a good life means constantly adjusting and coping with our disabilities - at home, in our community and at work.  This may sound depressing, but it is actually a good thing. I see life as a series of endless opportunities to grow, and every day as a learning experience.

 

I am very lucky to be where I am today. Rather than focusing on problems, I have learned to think in terms of solutions. I can’t ignore the negative aspects of my disability, but I give more attention and power to my abilities because they are what matter most.

 

Dr. Lequerica created this silent animated film to illustrate the symptoms of narcolepsy:

https://www.youtube.com/watch?v=B4LK2Ss4y7E