“I have shooting pain in my neck, arms, and legs – as if I’m being electrocuted. The pain can become excruciating. My fingers are so weak that I can’t use a computer and I can hardly hold a single piece of paper. Holding a pencil with my thumbs, I can slowly write one letter at a time.”
This excerpt is from a letter sent by Jo Son Suk to Daily NK on June 6.
As knowledge of the Ice Bucket Challenge spreads across the globe, and with a plethora of celebrities helping to shine light on the cause, the nature of Lou Gehrig’s Disease has been brought into the spotlight. In the midst of this, one defector with the disease wishes to tell her story.
Ms. Jo defected from North Korea in 2002 and entered South Korea in 2011. “I was already suffering from liver cancer and my body felt strange, so I went to the hospital. That’s when I first heard the words ‘Lou Gehrig’s Disease.’ At that moment, it felt like the sky was caving in. I was overcome with despair,” she recalled.
“As I received treatment for liver cancer, I remained hopeful and have managed to make it this far. But the shock was too great at that moment [at the hospital]. I didn’t even cry. I just stared at the doctor, dumbfounded.”
“Right now, I can’t take a single sip of water or eat a single spoonful of food. I’ve always dreamed of eating good food, exercising, and living healthily, but that dream has fallen to pieces. Previously, my will to live was evaporating,” she continued.
However, Ms. Jo said she has found a great support network in South Korea, which is helping to ease her anguish. Her condition is worsening as the days go by, but she is still feeling more at ease with her predicament.
“South Korea saved my life. I came to this country alone, but when I was getting surgery for liver cancer, people donated blood. South Korea is a country where people matter. For someone like me, who gave up hope, this country has given me the courage to persist.
“Day by day, the disease gets worse, but my heart finds tranquility. That’s because I know that I matter in this country. As I wandered the world, I was abandoned and kicked about like a pebble on the road, but a new seed of hope exists in my heart. I’m so grateful to the Republic of Korea,” Ms. Jo said.
Lou Gehrig’s Disease, also known by the medical name of amyotrophic lateral sclerosis (ALS), is a rare condition that affects the nerve cells responsible for muscle movement. It afflicts approximately 1 to 2 people out of every 100,000 per year. While multiple drug treatments are currently under development, a cure remains elusive.
The ice bucket challenge campaign began in America in 2014 for the purpose of raising awareness about the disease.
On May 29, South Korean singer Sean poured a bucket of ice cold water on himself and uploaded the video to social media. Other actors and celebrities in Korea have followed suit, helping to spread the word.
