Do it yourself

Today's post is about courage. 

But first a quote from actress Reese Witherspoon's acceptance speech for the Woman Of The Year award in 2015. 

"What is it in life that you think you can’t accomplish? Or what is it that 

people have said that you can not do? Wouldn’t it feel really good 

to prove them all wrong?

"... how many movies are in development with a female lead?

"The lead, the hero of the story."

Wait, I thought -- I know someone, a girl still, with that kind of inner power: our own Yeseo! Reese's speech ended with one of her mom's sayings:

"If you want to get something done, honey, you have to do it yourself."

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Hi, my name is Sandra, and I am one of the writers/moderators of this blog. And, basically, a huge fan of the main lead of her own story:

Jeong Yeseo, 

the Not So Usual Korean Hero. 

Get to know her here.

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Do it 

In theory, every human being can step out of their comfort zone at any given moment and pursue the one thing that matters most to them. Usually, there has to be some sense of urgency.

Like:

"Is this really something I want to do the rest of my life?" 

When the answer is "no", that's your urgency.

Suffering

Every life comes with suffering. Sure - we would like to have more easy breezy but as philosophers and prophets have taught us: there is no light without darkness. 

This might be true but suffering is not evenly spread on this planet. Some of us have to deal with anguish and struggles from the get-go. When I first heard the life story of Yeseo, this came to mind: life has not been easy for her or her family. 

Having to master life as a child growing up is hard enough - imagine having to deal with a condition so rare that you are the only person in your country with that syndrome! And one of 11 people worldwide.

Numbers

There may only be 11 people worldwide to have Luscan-Lumish syndrome (LLS), the number of people living with a rare disease is mindblowing. According to The National Library Of Medicine, it was estimated in 2020 that 3.5–5.9% of the world's population has a rare disease, which comes down to 263 to 446 million people worldwide.

If you ask me what those people have in common, I think it's this:

Courage. Not giving up. Finding a reason to get up, and be your own hero.

Encouragement

Dealing with the limits of a rare disease with no cure (yet) must feel like you are swimming upstream. You have no idea whether the deep whirl of the river will calm. If you are fortunate enough, you have some relatives and/or friends cheering you on. 

Standing ovations, letters of encouragement, crowds? That's something for, well, celebrities.

I'm thinking of Celine Dion with stiff person syndrome. She is now on the verge of releasing a documentary on her life. Or singers Billie Eilish and Selena Gomez, sharing their mental health issues publicly. 

This is not to say that any of that is less hard. It's just more... visible.

More visible than those millions of people with rare diseases, who are doing their best to overcome their daily struggles. I'm sure Lloyd Martin, the youngest person with Down Syndrome to complete the London Marathon had his struggles before he achieved his dream.

"Sometimes it takes great suffering to pierce the soul and open it up to greatness”

― author Jocelyn Murray

We may not all have a clear goal in life but I guess what binds us is our voice. The voice you have ever since you were born: authenticity.

Swimming competition for the disabled

For Yeseo, her voice is where the swimming pool is. See a short video here.

She has been training and taking part in different swimming competitions to reach her goal:

Being the first 8-year old girl with LLC to take part in Korea's national swimming competition for the disabled (14-17 May 2024). 

She will compete on the 15th for the 50 m freestyle and 50m backstroke, and then again on the 16th, the 100m backstroke. 

Most of the participants are older than Yeseo but that will not stop our Not So Usual Korean Hero. She even purchased another swimsuit to represent her school, YeosuJonggo Elementary School, and the province of Jeolanoam-do!

Cheerleader

There are 8,589 km between the Netherlands (where I live) and Korea. I might not be there in person to cheer Yeseo on but you can count on me to be the proudest cheerleader around! 

To be completely honest, whenever I am having a hard day, I think of Yeseo, doing everything in her power to stay healthy and happy. 

If she can do it, so can I, right? Because: "If you want to get something done, honey, you have to do it yourself."

I'll leave you a beautiful song from the Korean Drama Reply 1988: 

소녀(A Little Girl)