With the rise of social media, we’re constantly seeing images of perfect-looking people, making the world seem even more focused on appearances.
For those who don’t fit this “perfect” mold, life can be tough, with strangers feeling the need to criticize others based on their looks.
Karine de Souza knows this all too well. The Brazilian woman has a rare skin condition that requires her to cover her skin in SPF100 sunscreen, even when she’s indoors.
At age three, Karine was diagnosed with Xeroderma Pigmentosum, a rare condition that makes her very sensitive to sunlight and puts her at high risk for skin cancer.
This condition, which has no cure, means her skin can’t repair damage from UV rays. Just a few minutes in the sun can lead to very painful sunburns for her. As a child, she had to stay inside most of the time because being outside was too dangerous.
She explains, “I don’t feel anything right away when I’m in the sun, but later on, I get painful lesions that need to be removed because of cancer.”
Karine has had 130 surgeries to remove lesions caused by the sun, including parts of her lower lip and nose.
But her challenges go beyond physical pain. She often gets stared at and has faced verbal abuse both in person and online.
Despite all this, Karine stays positive and happy. She even found love with her husband, Edmilson, whom she met through social media. Edmilson was drawn to her story and strength, and he’s always been by her side, knowing he wanted to spend his life with her.
He also decided to embrace Karine’s three children from her previous relationship, which of course, meant a lot to Karine.
”He came and he showed me that I could live a true love story”, she says.
But after posting photos of them together online, Karine was once again exposed to a whole host of offensive comments.
”We have already read many offensive comments calling me a monster, deformed, a zombie,” Karine said, as per the Daily Mail.
Other comments suggested that their relationship wasn’t genuine and that Karine was a ”sugar mommy,” and that she must be very rich.
”Because of the fact he’s a young man and pretty, that caught people’s attention and they didn’t believe that he was with me because he really liked me,” Karine said.
A photographer who captured the couple after they got engaged posted a selection of the images online and wrote:
”In a world where appearance matters more than the feeling, they met not by chance, but by a gathering of souls, an encounter of acceptance and character and love emerged when their souls met and today you are the inspiration to so many people who do not believe in themselves, in life and especially in love.
“THANK YOU every day for being who you are. STOP complaining for being like you are. HUG LIFE, and accept yourself. Much gratitude for teaching me so much. You guys are AMAZING. You are the missing hope in so many people. Thank you for the big hug, and for the wonderful day we experienced together. I carry your smile with me forever.”
His heartfelt words and beautiful images he captured of Karine and Edmilson went viral, and thousands of people commented, congratulating the couple.
Karine wants others to realize the importance of being positive.
”Be happy, smile, because life happens only once,” she said.
In 2023, Karine and Edmílson welcomed a baby girl into the world, and they couldn’t be happier! Their daughter, Zaia, was long awaited – Karine and her husband had been trying for a baby since 2020.
Karine has been through so much but thanks to her positive attitude she has found the happiness she deserves.
Her story is inspirational so help us inspire others in similar situations by sharing this story with your friends and family.
Matt Heath: My parting message: Enjoy things while they are around
A lot of big, tragic and important things have happened to this wonderful country of ours since April 2014. None of which I have covered. I was too busy writing about hungover parenting, ancient philosophy and my dog Colin.
Out of the 536 columns I have written, 27 were about that guy. Far too few. He is such a good boy, he deserves an article a week.
Today is the end of an era for me, and whenever these final events pop up in our lives, we can’t help but think about the ultimate end.
Everything we do, we will one day do for the last time. That’s why you have to enjoy things while they are around. It’s not just big events like leaving a job, house or loved one either. Whatever moment you happen to be in now, you will never get it back, and you don’t know how many more you have.
Everything we do in life, from eating pizza to spending time with the people we love, to driving, writing, drinking or breathing, we will one day experience for the final time. It might happen tomorrow. This can be either a depressing or an inspiring thought, depending on how you look at it.
A few years back in this column, I interviewed professor of philosophy William B Irvine, of Wright State University, Ohio, on this very topic. He put it this way on a Zoom call: “Recognition of the impermanence of everything in life can invest the things we do with a significance and intensity that would otherwise be absent. The only way we can be truly alive is if we make it our business periodically to entertain thoughts of the end.”
Today’s column is very meaningful to me because it is my last. Like the last night with a lover before she goes overseas. And just like a lover, there have been some half-arsed efforts put in from me over the years. Last week, for example, I spent 750 words moaning about how bad my cricket team is. But the truth is that any of my columns could have been the final. If I had reminded myself every week for the past 10 years that the end is inevitable, I may have been more grateful for having a column and appreciated writing them all as much as I am this one.
While everything we do could have more meaning with a focus on finitude, some things are inherently more worthwhile than others. There is no doubt my column “The pros and cons of wearing Speedos” from November 2022 was less meaningful than most things in this world. That was a waste of everyone’s time. So, if we only have so much time, how do we pick the best things to do?
Well, Oliver Burkeman, the author of Four Thousand Weeks – Time Management For Mortals, suggested this to me in a 2022 column: “Ask yourself, does this choice enlarge me? You usually know on some unspoken level if it does. That’s a good way to distinguish between options.”
With that in mind, I don’t feel great about my 2018 article on “New Zealand’s best hole”. That didn’t enlarge anyone.
There will be people reading this column right now who have loved my writing in the Herald and are sad to see it end. Others will have hated it and are glad to see me go. Many won’t have any opinion at all. But for those in the first camp, I have good news. I have a book coming out on May 28 called A Life Less Punishing – 13 Ways To Love The Life You Got (Allen and Unwin Book Publishers). It’s a deep dive into the history, philosophy and science of not wasting our time lost in anger, loneliness, humiliation, stress, fear, boredom and all the other ways we find to not enjoy perfectly good lives. It’s available for pre-order right now (google it if you’re interested).
A Life Less Punishing took me two years to write and is equivalent in words to 100 of these columns. Which would be a complete nightmare for those in the hate camp, but as I say, great news for those who want more.
Anyway, thanks to the Herald for having me, thanks to the lovely people who make an effort to say nice things to me about my column nearly every day and thanks to the universe for every single second we get.
Bless!
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