By Cyprian Katongo, Jr.

Happiness. Excellence. Determination.

Born in hardships, growing up in a life where dreaming was very painful, all paint my past.

I’m not seeking attention for sharing this sad story. I am just here reaching out to others, who have hypohidrotic ectodermal dysplasia (HED) and showing my love for their loved ones, who will never give up on them.

Cyprian created these images to share this message and inspire others.

As a kid, all I ever wished for was to be accepted by people. Pre-school was always a day mare. At break time, I was ganged up, dissed and laughed at for looking different, for pouring water on myself.  “Fish,” “spike with no teeth,” and “weird guy” are just some of the disses that described my growing up, always going home, crying. I was the only kid robbed of fun, always wishing that I just died in the morning.

What’s the point of loving life, when all you ever experience is pain, is what I used to see. Words like I love you, were reflected in my heart by hate. All I ever heard was, “you evil eye,” all I saw was pain and hate in my life.

Fitting In

Always trying to fit in with the cool kids was very hard. Everyone made distant disses whenever I showed up. No one was willing to stay with me for a very long time.

I found peace in my own mind, away from everything around me. No more wasting time being fake to be accepted. Day dreaming became my best friend. My shadow held me back when I was all alone, when others cut me off from joining their fun.

Constant thoughts of seeing myself as a curse became a reality. Why is it that everything that I do always ends up being bad or not good enough? I thought of ways to hurt myself. All past bullied memories flashing rapidly. Got tired of looking up in the sky asking God, “Why did you make me like this? I’m very tired of crying. Look at me. Why are you letting me go through this horrible life? These became an album.  I would sample heaven almost every day.

Deciding to Live

Later on in life, a thought hit me. If I did hurt myself, it would mean that those who dissed and bullied me would win, in destroying me.

I got myself up, wiped my tears and decided to live.

Told myself I’m better than those who diss me. My family would be the ones who would suffer from me hurting myself, them putting in all they could for me to be where I am.

I understood that life is like that: not everything goes your way, you have to love what you have.

My dad told me about Michael Berryman, an actor who has your condition. He said, “Don’t think and feel you are the only one in the world. Just be you, work very hard, your success is all that matters.”

Reaching Out

Reaching out in me, I discovered my heart for reaching out to other people.  I made it a mission to reach out to other people going through pain even though they don’t have HED, to make them realize life is like that: Pain makes you very strong. Giving up is very wrong.

That’s the story, why I’m here today. I’m sharing this story to you all here. To all those that support and love people with HED, infinity God’s blessings and love plus respect to all of you.

Yes, this condition as very rare as it is, a hard condition to master, the words lol, it has made us all to be unique. We should love our lives.

Cyperian Katongo, Jr. is a guest blogger for the NFED. He lives in Zambia, Africa and is affected by hypohidrotic ectodermal dysplasia.

 Editor’s Note: Bullying and depression are serious issues. If you or a loved one is suffering from either, please seek help. Here are some resources:

10 comments on “We Should Love Our Lives”

  1. 1
    Susan on January 9, 2019

    Cyperian: Thank you for sharing your story and for your honesty. I have no doubt that you have helped others by sharing it because they also feel what you shared. It sounds like as you’ve grown up you’re developing acceptance about HED and making friends along the way. I sense a wonderful life for you awaits. (Susan–USA)

  2. 2
    Janet on January 12, 2019

    Thank you for sharing your story. Infinity of God’s blessings to you as you continue to help others. So glad you are here and reaching out to others.

    1. 3
      Jodi Edgar Reinhardt on January 14, 2019

      Hi, Janet. Thank you for reaching out. We agree…we’re so glad he’s here and inspiring others!

    2. 4
      Beth Orchard on July 10, 2019

      Thank you for sharing your story. I cannot imagine living where you do and trying to stay cool enough. Also, there are probably less people affected with less information about it. You can be an inspiration to share your story and educate others. Please continue to share the story and never give up. You are an inspiration and a role model. Blessings on your journey.

  3. 5
    Mary K Richter on January 12, 2019

    Bravo! Thanks for sharing your experiences.

    1. 6
      Jodi Edgar Reinhardt on January 14, 2019

      He is inspiring for all of us, isn’t he?!

  4. 7
    Jamie Howell on January 16, 2019

    Thank you for giving a voice to the impact of bullying and the choice to rise above. Thank you for the courage to share.

  5. 8
    Gitima Deka on May 4, 2019

    Good , inspiring to all ! All the best for journey as a writer !

  6. 9
    Tedini James Grant on August 30, 2019

    Thank you for sharing this story.

    It touched me profoundly and got me Inspired at the same time.
    You’ve shown that conditions are but a mere description of a situation and doing something better with our lives is another.

    Love you big brother.

    And I must say you’re a good writer too.

  7. 10
    Cyprian Katongo Jr on September 3, 2019

    Thank you very much, very humbled!

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