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.
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.
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 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: