Kwayirya Yaro: My Life, My Skin, My Vitiligo

Posted: October 17, 2012 in The Interview
Tags: , , ,

Note: The situation is not real…but the interview is…

She walked in through the door as I sat, anxiously waiting for her to come and pick me up. “Haba now, chick. Just chill. I am on my way…” She said, 30 minutes earlier in our phone conversation. Oh why didn’t I just take a taxi and tell her to meet me there. I will be late for the party, all the chicken and suya would be gone by the time I get there and yes, I have to grab Aro for delaying with his interview.

And now she walks in, with that killer smile on her face that she always uses to get in and out of trouble with. Kwayirya Yaro. “Oya, I am here,” , she announced, still with that smile. As I force myself to hold the frown on my face, she rushes to me and squeezes a big hug on me. “oh, my lungs,’ I cried. “I am still recovering from Sephiny’s hug.” She finally lets me go and gives me a quick eye sweep.

“You look good oh.”

“I know,’ I replied. “But looking good isn’t going to kill the hunger. I am dying for the suya they are having at the party. I won’t forgive you if we are late.”

“Oya, let’s go.” She heads to the door and I follow. Watching her from behind, she knows how to carry herself. Smart, funny and oh-soo strong -willed. And Beautiful. But in her usual routine, she noticed me watching her as we got in her car and took off.

“Is there something wrong with the way I look?” She asked in an almost stern voice. “Oh, you ba, must you always think someone is seeing something bad on you? I replied harshly. Then I bit my tongue after I saw the expression on her face. It was something she didn’t mean to do, it was something she believed she had to do. You see, Kwayirya is any man’s dream. She also has Vitiligo. “You know what I mean now, Amsa,” She said. ” I know, I am sorry. It’s just that sometimes I think you let your appearance get the best of you.”

“it’s not that. you know now. My life as someone living with Vitiligo hasn’t been an easy one because I am very conscious of my condition.”

True. I have seen the way she has been treated by so many, including family members. I would have never thought of me being in her position and I asked some more.

How do you feel when  people look at you?

I get uneasy or uncomfortable especially when I’m being stared at by people who cannot but help wonder what happened to me. Vitiligo is a skin condition where some parts of the body are seen to have lost the skin pigmentation. Skin pigmentation is what gives you your natural black colour or white colour in the case of white people. 

But do you always jump to that conclusion that it’s about your skin? I mean, they can be starring at you for another reason like food stuck on your teeth or bad make-up or something…

Amsa, come on. you know how people are. When they see something they don’t understand, their first reaction is to stare. Some assume I got burnt, while some think it’s a curse. Some take immediate pity on me while some run away from me. Some would decide to be nice while some would rather avoid anything I touch.

“For real?” I cut in, “that is messed up.”

“Truly, Amsa,” she continued. “At times, kids see me and scream “monster” or “ojuju” when they see me. At least, they are kids. But annoyingly enough, some adults also run from me shouting the same “Monster” or “Ojuju” and I’m like “seriously!”

She glanced at me with eyes deep in emotions. “I sometimes get called names even by loved ones and I can’t help but cry or wonder what life would be like if I were normal or not living with Vitiligo.”

We continued our journey in silence. Flashes of memories went through my mind as I recalled the times when she was away for months, looking for a cure for vitiligo. But I have always seen it in my angle. I mean, I knew it was not contagious  being that we have played together ever since we were kids and shared so many things but I do remember a time when a family member tried to stop me from drinking from the same cup with her. They didn’t know what was happening and it had just manifested itself. I can’t imagine how her father, my uncle, reacted to it the first time.

How did Popsi (your Dad) react the first time?

“Ah,” she exclaimed. ‘I really can’t remember their first reaction to this because I was quite young when it started manifesting. All I remember is my Dad shouting “what is this?” This was after I finished admiring myself in the mirror and telling myself I’m changing to a white girl. It was when I went to share the “good news” with my Dad when he came home from work for his lunch that he screamed.

She gave a little laugh as she tried to recall his reaction. I also had a tiny smile on my face, trying to imagine my uncle freaking out. It would have been funny in a not-so-funny way, believe me.

“From that moment my Dad has not relented in finding a solution to his daughter’s condition. I have traveled to different Countries all in the name of finding a cure.” 

And went through a lot. She skipped school to travel for new cures, she move from home to be taken care of by my aunt. She started wearing make-up before she became 10 to hide the pigments on her face. She had to bath with herbs and rub on skin potions. Some with strong smells and she had to stay away from the sun. For a child to go through all that, no wonder she is still touchy about how people view her. I never thought of how hard it was for her until that car ride.

“Thinking about it now,” I said, “you really must have gone through so much.”

“And that is just the tip of the iceberg. Amsa, the way people treat me is the worst thing ever. Because of that, I find myself being conscious of what I wear to go out. Sometimes I don’t care but sometimes I find myself saying I don’t want anyone staring at me but the truth is, no matter how I dress, people still stare. I’m also very shy, it’s crazy.”

I gave her a quick look when she said the last part and saw that mischievous smile again on her face. “You, shy? In what country?” I asked. She laughed at my question. ” I just wanted to know if you were listening,” she replied. “But true to God, I am shy.”

“Yeah, right!” I leaned back on my seat with a smug expression on my face. “Only shy people would allow themselves to be part of an awareness campaign…”

Haba, Amsa.” She quickly replied trying to hold down giggles. “I took part in that because I am an affected party and if I can spread the word about the vitiligo, then I will do so again.”

” I liked the videos. Short but straight to the point.”

  “Yeah, me too. they were shot in 2010, I was  in two of the short movies directed by Izu where I was someone’s girlfriend and he was cheating on me. When caught and confronted it was revealed that he was doing me a favour by being my boyfriend. The other one was where I was being introduced by my boyfriend to his family as the lady he would like to spend the rest of his life with but the family strongly disagreed with this arrangement saying they don’t want the infection or affliction in the family. It was VITSAF that organised it all, you know.”

Er…no, I don’t. Who are they?

Ah ah, Journalist like you and you don’t know them? she chided.

“ehn, that is why I am asking you now. Just talk. who are they?

“VITSAF is Vitiligo Support and Awareness Foundation. They are trying to find a cure alongside create awareness of what Vitiligo really is. It goes to assure members of the public that Vitiligo is not contagious.”

But the videos can’t be the only thing they could have done now.

Noooo, they are not. On the 25th of June, being World Vitiligo day, we went out to share fliers, wore T-Shirts and gave a brief explanation to people on the streets that cared to listen, what Vitiligo is all about. Some of us were also to be interviewed by NTA to create awareness on what Vitiligo is and assure people who have been ignorant, that it is not contagious among other things which went quite well.

But that can’t be enough now. What about the people you didn’t meet on the streets. And besides, how come I didn’t hear about World Vitiligo day and I am the ‘journalist’?

“Go joor,” She attacked back. “Are you the only journalist around? When you lock yourself up at home. Others heard. NTA interviewed us oh,”she added with some funky attitude. “Well I wouldn’t say it is enough but we are trying to get the word out by organizing seminars and conferences to this effect. So we are working hard to get and let people know and be aware of Vitiligo.”

But do you think it helped? At least, by now, people know it by name, right?

Her expression already told me the sad answer. “No, it doesn’t. People basically treat me different because they didn’t know what Vitiligo is. it’s ignorance mainly. It’s sad but it won’t change their attitude about it just yet.”

It was sad to hear that. Especially from Kwayirya. She is the type of person that fights for what she believes in. She is usually the toughest nut to crack around and for her to say that, it really hit me. Hard. And I had to ask…

If you could change anything about your life and what you have been through especially having Vitiligo, what would you change?

She gently edged the car into a parking spot at our destination and sunk deep into her seat as she pondered on my question.

“Let me see,”  she started. “What can I change? Nothing really…ok, something.”

What would that be?” I asked.

“Well, I don’t know what my life would have been like but I know it would have been very different. At least people won’t notice me, I would dress freely in whatever attire I so desire, you know. Just that freedom of being who I am meant to be without an audience.”

She stepped out of the car and I followed suit. As we walked down the stairs into the location where the Dj has probably blown off all the eardrums, she turned and looked at me, again with that smile.

“But then again, who knows. It made me the person that I am. Tough but vulnerable. We may not have been as close as we are right now, you know.  it’s just that I would want to find a lasting cure to this and also try to change people’s perspective of Vitiligo. We are people. Just because you can see my flaws better than I can see yours doesn’t make me any different from you.”

And just like that, her demeanor changed from the thoughtful girl into the character she wears outside her safe zone. The brash and happy girl I see that covers a lady who had to toughen up to live in a world where she is considered many things. A sick girl, the cursed one and yes, a monster. All just because of something she could not control. It just happen to pick her out.

I watched her hit the dance floor as I attacked the suya I salvaged from an unlucky friend of mine. I often wonder how I would have handled it if I got vitiligo. I know I won’t have handled it the way she has. I wouldn’t have learned to accept it but at the same time, fight to make it better. She should be proud of herself for the strength she has to handle vitiligo the way she has in a world so obsessed about outer beauty and perfection. She and many others like herself.

Vitiligo Support and Awareness Foundation

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Comments
  1. osebby says:

    Saw d awareness on TV wen it was done in June. I use to tink dey were like fire/burn victims. It’s so sad they r still looking 4 a cure and dat pple still stigmatazie or look down on dis ones. I even felt pity 4 her 4rm d story. Let her keep up d good fight, all is/will b well

    • amsayaro says:

      Thanks Osebby. Believe me, they all just want to treated the way you and I are. And they should be. I am just happy and hopeful that Kwayirya feels love every time she is around my family and I.

  2. ismail omipidan says:

    Well, well, well, the story is an intresting one. As a journalist, the best I can do is to help raise the awareness among the country’s reading public. Amsa, tell her, I will be available any time she is prepared to grant an interview, so her story can be used as a peg to do an elaborate piece on the issue. Let me also confess that unti now, I never knew the name. But I have seen a lot of people with it. In fact, in some of our cultures, they call it names, indicating that it is a curse or something. I’m happy, I now know. Kwayirya, I love you and will be there for you.

    • amsayaro says:

      Thanks Ismail. She and many more would truly appreciate the support. You can also get in touch with the organisation VITSAF. their link is on the article. Thank you.

  3. debbie says:

    Hey Amsa!!! Dis is an excellent work u guys are doin, iv met kwayirya before @ ur house and truely i took a vry gud look, even though im aware of vitllgo,i still starred out of empathy cos i kept tinkin of all the kinda dscriminations she would hav bin going through. Thank God for this awareness, i know itwill go a long way in easing d tension of discrimination. And for kwayirya, keep moving on girl, ur bondness has made u outstanding.

  4. debbie says:

    Hey Amsa!!! Dis is an excellent work u guys are doin, iv met kwayirya before @ ur house and truely i took a vry gud look, even though im aware of vitllgo,i still starred out of empathy cos i kept tinkin of all the kinda dscriminations she would hav bin going through. Thank God for this awareness, i know it will go a long way in easing d tension of discrimination. And for kwayirya, keep moving on girl, ur boldness has made u outstanding.

    • amsayaro says:

      Hey Debbie, thanks alot. We only need to spread the word out about Vitiligo not being a curse or what ever people think it is. It could happen to anyone. Thanks 😀

  5. Julie Jaja says:

    The first time i saw that video on NTA i called her up and crack a joke ( Haaah Kwaris so you re now an actress..) She laughed and said to me ( Aunty jay, oh u saw it?) Then she went ahead to explain to me what it is all about..I ve seen her being conscious on that yet very strong in another way..No matter what happens, know that you are a beautiful and strong lady and the world will just come to understand your caused..

  6. wumi says:

    Very very inspiring. I love you yirya, always have! @ Amsa, really cool piece. Thumps up!

  7. Chika Nnanna says:

    Kwayriya, my dearest friend and colleague. Whenever people stare at you, they look beyond your skin. They try to comprehend how pretty your face is, how well structured your body is ( figure-8 ), and how beautiful your heart is.

    ”If only Kwayirya knew how confident she is and how much she is envied for all she has…”, this is what I always say to myself whenever you step into the office.

    We all love you. Cheers!

    Chika.

  8. Henry says:

    Guessed What! nothing is wrong with you as far this skin problem is neither infectious nor sickning. Even if you are without it, people still talk about you. imagine somenone with a big head, k-leg, bow-leg, big stomach, stunted in growth and other conditions that man cannot handled because of their nature. My sister I see natural beauty in you especially when you smile, it will be a great pleasure for me to dine or lunch with you. Hope to see you some day cutee.

  9. Kwayirya says:

    Thank you very much. Chika, Wumi, Aunty Jay, Ossebi, Ismail, Henry, Debbie and everyone else. Ismail I wld be available for an interview. Tell me when and where ko. Henry, hmmm, tnx a lot. I’m blushing. Hehehehehe.

  10. mbayer says:

    I’m just hearing about vitiligo for d first time tho I went to same school with Kwayirya. I was her junior in school(far junior).we heard so many stories abt why her skin has patches.some very weird and some quite plausible but d accepted one was an adverse reaction to a drug.now I know better.tanx Amsa for d enlightenment.now I see her as a superwoman for all she has endured and how she has turned out.

    • amsayaro says:

      Thanks Mbayer. if she was your far senior then i am a much further one too. lol. But its good you know about it now and you can kick all those funny stories good bye. And share the truth too

  11. Amsa says:

    Excellent piece Amsa. U’re begining to convince me about ur excellent journalism skills. 🙂 Kwaris is an absolutely beautiful girl with her piercing eyes. Anyone that spends 5 mins with and manages to look past the vitiligo will see a stunning girl unfold. She’s really strong. Has been though a lot but God has kept her with her sanity. it’s amazing. Love u Kwaris Maris DJ Jaris La Babe!!
    Good Job Amsa

  12. Ena says:

    I really appreciate the responses. The understanding and the enlightenment for some really extends beyond words can describe. Thank you and keep spreading the word about Vitiligo.

    Hey Henry, if you want to get to know Kwayirya or dine with her, try to find her on facebook.

  13. Linda N Ugbeji says:

    Kwaris you are a brave Lady. And i salute your courage. You are beautiful in your own way. The fact that we don’t have Vitiligo,doesn’t make us perfect. We all have our faults. Please forget about what people may think or say. You’re loved by some of us. And know we r solidly behind you. People may call you names now but later they will beg to be identify with you. Cheer up kwaris. @Amas nice one dear

  14. Kwayirya says:

    Ulu and Mum, I love you too much too. Mbayer thanx dear.

  15. Kwayirya says:

    thanks Linda.

  16. Ogo says:

    Beautiful, beautiful piece, simple beautiful. Amsayaro thanks so much for this, you have helped tremendously on Vitiligo Awareness and Enlightenment, people really need to know especially in our kind of society where we lack complete empathy. Yirya is a beautiful woman no doubt and I strongly believe that in near future she wont have a white spot, there is hope and we are working tirelessly on that.

    • amsayaro says:

      Thanks for reading Ogo. Yes, she is a beautiful and strong lady. And full of life. Already, most of the pigmentation especially on her face has gone but there is still a lot left. But as long as she knows we support her all through, she is still on the good fight. Thank you

  17. Ogo says:

    I want to add here as I really understand and have seen different side and shape of it, playing lip service is worst than discriminating. Most atimes we care so much just in and with our words not anyway near our heart, I have had such experiences where ‘a friend’ goes talking of how vitiligo is nothing and all only for me to hear her discussing with someone without knowing that I was close by, ‘God forbid, that she threads with caution as she doesn’t really understand the vitiligo thing which she believes must have been nemesis or a curse…….

    • amsayaro says:

      I once had a colleague who did the same thing regardless of knowing that she was related to me. It hurt me big time, talk-less of what Kwayirya must have felt if she saw her reaction. We do have to change people’s view about vitiligo…

  18. vrfoundation says:

    Reblogged this on VRFoundation and commented:
    How do you feel when people look at you?

  19. Esther Bature Maxwell says:

    This is a very interesting piece. I knew Kwayirya in Gwags and even though i didnt know what vitiligo was then i saw her as a normal person. i always look at her because am amazed by her beauty, her confidence and the bigness of her heart. If only she knows what so many people will give just to have all these….. Kwayirya, you are amazing, just the way you are.

  20. Ango says:

    KWARIS MARIS! NICE ONE! AMSA! NICE ONE!

  21. briancrossby says:

    Vitiligo is a pigmentation disorder in the human skin. The human skin contains special skin cells (melanocytes) that produce the pigment melanin which colors the skin. In Vitiligo, the special skin cells (melanocytes) as well as the tissues (mucous membranes) that line the inside of the mouth, nose, genital and rectal areas, and the retina of the eyes are destroyed.

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