I am Eric Chun
a family member in a familial ALS family,
a family member of someone we've lost to ALS,
a friend of someone living with ALS,
a friend of someone we've lost to ALS,
an ALS gene carrier,
living with ALS,
someone who cared for a person we've lost to ALS
ALS is like drowning on land, like being buried alive. And until now, 100% fatal. I'm in the fight to change all that.
I am a 49-year-old husband and father who is living with ALS. I grew up under the shadow of ALS. My family has the genetic SOD1 mutation. My maternal grandmother succumbed to it when I was a baby. My mom’s twin sister, another mother to me, was diagnosed when I was 13. She lived for about one more year. The trauma she endured was heartbreaking and has stuck with me all these years.
In 2002 my own mother, Peggy Chun, a beloved artist here in Hawaii, was diagnosed. By then we had high hopes that a cure was within reach and she fought hard for over six years. She was a beacon of hope for many during that time and inspired all those around her. She lived on a ventilator for the last four years of her life, communicating only with her eyes. The experience stretched our family to the limit. I was a new father and lived under the nearly unbearable stress of caregiving and watching her suffer this fate.
Lurking beneath all this was knowing that one day, I too might have to face ALS. I got genetic testing done, mainly to rule out having the gene. Sadly, I was positive for SOD1. Fast forward to 2018. That summer I began feeling fasciculations in my right bicep. I recognized immediately that this could be a sign of my own onset. I lived in denial for three or four months before the fasciculations grew so strong that they could not be ignored. My neurologist confirmed what I already knew was happening.
I led a very active and physical life before my symptoms. As a waterman, arborist, sculptor, coach, dad, and husband, I enjoyed the use of a healthy body. It was a time in my life when it seemed that I was finally overcoming the bumpy road and lessons of the past. I was newly engaged and it was a time for real growth and expanding joy with my family.
But the shadow has returned. My upper body is stripped of muscle, my right arm hanging off the shoulder loose in the socket. My jaw too weak to chew anything softer than pudding. My voice barely understandable. I can only eat through a tube. Even my own saliva tortures me with choking.
ALS is like drowning on land, like being buried alive. And until now, 100% fatal. I’m in the fight to change all that.
I remain positive and hopeful that ALS is reversible and preventable and that together we can make this change!