Grieving Lost Dreams and Imagining New Ones
The moment I received my diagnosis as having narcolepsy with cataplexy is seared into my memory. The shock of the moment seared the memory for a lifetime.
Etched into the memory are the sights, the sounds, the smells as I recall the matter-of-fact inflection of my sleep doctor's voice. It looked like my gym, it sounded like my gym, and it even smelled of sweat like my gym, yet it had all the feelings of a funeral.
Sitting in the gym hallway, my sleep doctor’s words resonated throughout the recesses of my mind. Pleasantries were exchanged, my diagnosis was confirmed, yet the entire world continued to move forward as the goals for my future imploded.
Patient support was non-existent
When I was diagnosed in 2007, the world of social media was in its infancy. The current support available from those platforms didn’t exist. There was information available on the internet, but it wasn’t as clearly organized. The message boards and blog articles available through Health Union were years from being developed. There was a void of quality literature from the perspective of the patient.
Julie Flygare’s book, Wide Awake and Dreaming: A Memoir of Narcolepsy, Claire Crisp's book, Waking Mathilda, and Henry Nicholls' book, Sleepyhead, weren’t available at the time. There were no online support groups and I can’t recall if I received any paperwork discussing my condition.
Discovering the value of small groups
I felt alone navigating in the early days. Although I lacked support from my narcolepsy peers, I did find support in the form of a book and support groups called Journey to Freedom by Scott Reall. The small group meetings were for individuals learning to accept change in their lives.
It was a hodge-podge of personalities and life conditions, but the camaraderie was freeing — a group of individuals looking to improve. Those groups provided the social support that I now receive through the online groups of Wake Up Narcolepsy, and Narcolepsy Network.
Working through the 5 stages of grief
It was in those groups that I discovered Kübler-Ross's 5 stages of grief model. The 5 stages of grief are denial, anger, bargaining, depression, and finally, acceptance.1
It was imperative for me to work through the “loss of normalcy,” to navigate through the expectations of success I had placed on myself. These dreams and goals were built on the assumption that I did not have a neurological condition that caused excessive daytime sleepiness and cataplexy.
What I realized on my journey to acceptance was that the road was not linear. I jumped through the stages in order, then backward, thought I reached acceptance, only to be thrown to the beginning.
Learning to redefine success
It took years to get to the point of acceptance. Along that journey, one realization helped to accelerate the process — just because I had to let go of previous dreams, that didn’t mean I had to stop dreaming. I had to redefine success, what that looked like, what that involved, and what I could accomplish.
I had dreams and ambitions of becoming a physical therapist, combining my passion for strength training and for helping others. Those dreams were not compatible with narcolepsy and raising 2 children. My new dreams are to be the best father possible and blog writer. Those dreams also mean continuing to be an outspoken advocate with Know Narcolepsy, and to help others by sharing my personal story through Rising Voices of Narcolepsy.
Pursuing a new strongman dream
I had dreams of becoming an amateur strongman. Unfortunately, I have experienced cataplexy episodes (involuntary loss of muscle tone associated with emotional responses) as a fear response to maximal lifting. The sleepiness that occurs when I push myself to my max is another impediment to strongman competitions.
My strength training derailed after my diagnosis until I had the opportunity to meet Bill Kazmaier, World’s Strongest Man 1980, 1981, and 1982. That chance encounter led to my new dream — living as the World’s Strongest Person having narcolepsy with cataplexy. Three years after that meeting, I participated in my first obstacle course race, the Warrior Dash. My new dream is competing in the World’s Strongest Athlete with a Disability competition.
Finding my way forward
That day - the sounds of the weights clanging, the empty faces of the passersby, and the gravity of the situation that still has the power to overwhelm me. The words I heard that day in the gym changed the trajectory of my life.
To move forward, I had to learn to accept those things I could not change. I had to change the things that I could. Finally, I needed the wisdom to know the difference. There is no one-size-fits-all approach to finding acceptance of a narcolepsy diagnosis. New dreams are possible, and the future can be bright, once acceptance is found. The World’s Strongest Person having narcolepsy with cataplexy approved this message.
What has been your experience in processing your diagnosis? Share your story with our narcolepsy community below.
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