Disability Icons, Support, and Goal Setting in Narcolepsy
Realistic goals are essential when living with narcolepsy or a chronic illness. Goals that are attainable allow me to keep moving forward and avoid the frustration of biting off more than I can chew.
Strategic and attainable goals are important, but that doesn’t stop me from pursuing big goals too.
Stephen Hawking's accomplishments
“My goal is simple. It is a complete understanding of the universe, why it is as it is and why it exists at all.” —Stephen Hawking
Stephen Hawking knew as much about the universe as almost any human. While he held lofty ambitions, he also had smaller goals along the way. He was the first to set out a theory of cosmology explained by a union of the general theory of relativity and quantum mechanics.
A Brief History of Time was a NY Times bestseller. Among his greatest and at first controversial theories, he proposed radiation was emitted from black holes (later named Hawking Radiation).
Willing the mind, modifying the body
Possessing one of the greatest minds in theoretical physics, Stephen Hawking also dealt with a debilitating neurological condition. Stephen Hawking accomplished most of his professional achievements from the confines of a wheelchair. Shortly after receiving his Ph.D., he was diagnosed with ALS in 1963. He was still pursuing his goals and research at his death in 2018.
“My goal is simple. It is living as the World’s Strongest Person having narcolepsy with cataplexy, flexing my mental strength through a foundation of physical strength.” --Matt Horsnell
Stephen Hawking revolutionized physics understanding of black holes from the confines of a wheelchair. Just as he didn't allow his neurological issues from interfering with his goals, I, too, focus on not allowing narcolepsy to limit what I can achieve in strength training.
Helen Keller's inspiring journey
“Alone we can do so little; together we can do so much.” — Helen Keller
Helen Keller was born in 1880 in a small town in Tuscumbia, Alabama. Over the course of her life, Helen Keller became an outspoken advocate for disabilities, women’s suffrage, socialism, pacifism, and birth control. Her contributions to thought and humanity would be laudable and noteworthy for any human, yet for the majority of her life, she was deaf and blind. At 19 months old, Helen Keller lost her ability to see and hear due to an infection.
Superlatives are often used in hyperbole, but not in Helen Keller’s case. Along her journey, she was the first deaf-blind person to earn a Bachelor of Arts degree. Living without sight or hearing, Helen lived a life out of the shadows and enjoying music. Eventually, she learned to speak by touching lips as people spoke. Although Helen’s language acquisition was delayed, she was able to share her voice. Ultimately, she gave speeches and lectures across the world.
“As individuals we are strong, together we are powerful” — Matt Horsnell
The importance of a support network
When I think of Dr. Hawking, Helen Keller, and all the great minds who overcame their own limitations (perceived and real) to achieve greatness, I remember the support they received along the way. Their dogged determination to overcome their obstacles is a reminder of what is possible in spite of adversity. It is also a reminder of the importance of support during the journey.
History books are full of people who achieved greatness in spite of their physical limitations. One common theme I have encountered with great minds accomplishing great goals is the importance of support.
Stephen Hawking had a longtime assistant Judith Croasdell. Helen Keller had an impactful teacher and champion in Anne Sullivan. Supportive people surrounded these two prodigious forces in science and social policy. I, too, have been blessed surrounded by encouraging peers and family. My success is possible with the support of my mom, dad, brother, and 3 kids. Accomplishments I achieve in the world of narcolepsy awareness and patient advocacy is also built on the shoulders of the trailblazers before me.
Setting goals and dreaming big
Living with narcolepsy means my sleep and REM are disrupted. This disrupted sleep causes debilitating excessive daytime sleepiness. None of my symptoms have stopped me from dreaming big. Realistic goal setting has allowed me to exceed my expectations and tackle opportunities placed in my way.
Just as Stephen Hawking and Helen Keller were able to achieve greatness and overcome limitations, I choose a combination of realistic goals and dreaming big.
On my way to accomplishing my goals
When I am presented with a new goal or opportunities, I try always to meet those head-on. My dream is to have my name spoken in the same breath as the greats in patient advocacy and narcolepsy awareness.
To get there, I need to accomplish my realistic goals and take advantage of the opportunities along the way. The World’s Strongest Person having narcolepsy with cataplexy approved this message (following goals and accepting support along the way).
Where are you in your narcolepsy diagnosis journey?