Being A Person With Narcolepsy. Being Matt Horsnell.
The sounds of dumbbells crashing and treadmills whirring served as the background track as the doctor confirmed my diagnosis. Sleep had been an unwelcome nemesis since before I was twelve. Two times prior my doctor mentioned the word narcolepsy. The word was used both during my initial consult and between my polysomnography and MSLT (sleep study). Yet the weight of the diagnosis hit me hardest sitting outside the gym, struggling to find the strength to lift. More than thirteen years after my symptoms began I had an answer. The answer was I was a person having narcolepsy with cataplexy.
My name is Matthew Horsnell and I am the father of three kids and devoted to a supportive partner.
My name is Matthew Horsnell and I have narcolepsy with cataplexy.
The next few days were a dichotomy of relief and existential dread. The question that had plagued my life and resulted in misdiagnosis from four different psychiatrists now was answered.
But what did it mean?
Would I be ‘normal’?
Would I ever feel awake again?
When would I start feeling better?
Fifteen years later, many of my questions have been answered, but many still don’t have answers. While I don’t have all the answers I have worked tirelessly to find meaning.
To be a success while living with narcolepsy, I had to define what success looks like. Before my symptom started and before my diagnosis I had hopes and dreams. There were both personal expectations and also expectations from those around me. At first, giving up on my dreams was devastating, yet I had a paradigm shift when I realized that I could dream new ones. What good is constantly jumping into REM sleep, if I couldn’t craft some new dreams along the way.
Success for me now is measured by being the best father and partner I can be. Always a person with narcolepsy, never a narcoleptic. Success is the impact I have on my community and the direction of narcolepsy advocacy. I don’t have the wakefulness to keep up with an American dream that requires me to forego health and sleep. That meant grieving the loss of my dreams to be a DPT (doctorate of physical therapy) or MD. For my friends in the community who have accomplished those goals, it was possible, but for me and my family, it was not possible. This condition is subject to a spectrum of severity and symptom onset. Comparisons with my peers can be harmful, just as comparisons to neurotypicals.
I serve as a group facilitator for small groups hosted by Wake Up Narcolepsy. There I have the honor of connecting with peers at all stages of their journeys. Grief is one of the most common topics. Grieving the loss of dreams. Twice a week by reminding others, I remind myself that grief is a nonlinear process. I will go through all the stages—not in a neat fashion and never to completion. Early on I lived in denial, depression, anger, and bargaining. Acceptance seemed unattainable and the concept of finding meaning was not remotely on my radar. Now, every day I work on meaning by giving back with my voice and talents. I try to stay in acceptance, but grieving is fickle and like everyone else I struggle with all the stages, sometimes all in a given day or week.
Narcolepsy can disrupt my days. Every day my biggest accomplishment is getting out of bed, all else is secondary to waking up. During my journey, I realized that narcolepsy wasn’t my weakness, and it could be a source of strength. Yes, my cataplexy causes muscular weakness, but I can be strong nonetheless. This epiphany came after realizing I wouldn’t compete in a World’s Strongest Man competition, but I could be the World’s Strongest Person having narcolepsy with cataplexy. As strong as I have become physically, my strongest assets are my heart, my mind, and my voice.
Our home is full of love and support, and I am a leading voice in narcolepsy advocacy. I have volunteered and presented for all of the big three narcolepsy advocacy organizations: Narcolepsy Network, Project Sleep, and Wake Up Narcolepsy. I am a trained speaker with PS Rising Voices of Narcolepsy. As mentioned before I facilitate two small groups and assist in developing new facilitators. My interview was featured on Narcolepsy 360 by Wake Up Narcolepsy. Every year I collaborate with Project Sleep’s legislative efforts to increase funding for sleep research and sleep disorder research. Every month I’m co-hosting #NChat on Twitter.
There is power in our experiences. By sharing my story and lending my voice I am helping to reduce time to diagnosis. If one person hears my story and finds connectedness and support during their darker chapters, then my struggles have been worthwhile. All the falls from cataplexy, the broken bones, the bruised egos, the fractured relationships have meaning, and someone else can learn from them. As an individual voice, I can impact many others and direct the conversation. Lending my thoughts and voice to a combined and unified message offers the ability to impact drug development and congressional appropriations. I will no longer hide in the shadows looking for others to lead. There is a juggernaut of misinformation perpetuating stereotypes and increasing stigma for myself and my peers.
Support has made my progression possible. Numerous peers have invested graciously in my growth. Their kindness empowers me. Likewise, I always look to pay their gift forward myself. Support from my partner, my kids, my family of origin, and my family of choice are the fuel for my advocacy engine.
Edmund Burke’s quote applies to the narcolepsy community: “The only thing necessary for the triumph of misinformation is for good advocates to do nothing.”
My name is Matthew Horsnell, and I am the World’s Strongest Person having Narcolepsy with Cataplexy. Sit down and I’ll tell you all about it. I have a choice, and I want to be a part of the solution.
– Contributed by Matt Horsnell, Narcolepsy Community Advocate