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My Story in My Voice

As a young girl living with a disability, life wasn't easy, people were eager to exploit my vulnerabilities – sexually and otherwise.

This is my story…

In 2003, I developed difficulty breathing which made simple tasks like playing with my friends almost impossible, I was 15 and had just finished secondary school.

I thought nothing could be worse than being unable to play sport and go to the university until my father was assassinated in 2004.

Later that year, I had my first surgery - an emergency tracheotomy which made me breathe better though I was unable to speak afterward.

Over the period of 3 years, I had 5 excisions and biopsies in my upper larynx. Each surgery held promises – I would speak afterward; I would be able to go to school and I would be decannulated. Sadly, each of those promises went unfulfilled.

Eventually, I was referred to South Africa in 2006 where I was diagnosed with total upper laryngeal stenosis due to scar tissue which had formed because of the previous surgeries I had; my vocal cords were slightly paralyzed. This left me utterly devastated.

In 2007 I decided to do something with my life; I wanted to be able to meet and support other young women who had had similar surgeries. I wanted to help them through the 5 stages of grief in any way I could.

We met once a week and exchanged notes (most of us couldn't speak). We shared our joys and sorrows.

I also enrolled in the Diploma in Social Work programme, which was tough – classmates asked me questions because they wanted to see me try and when I took the bait they would laugh hard at me, I was an easy target for rape because I could not speak audibly or shout. I often drew strength from the women I worked with, they kept me determined and when I graduated with Distinction in 2009, it was our victory!

I heard myself speak for the 1st time in 4 years after my 2nd surgery in South Africa. My first words were: “this is not my voice,” and it was true, no one had ever said what I needed to say.

Two surgeries in South Africa (2006, 2008) and 1 surgery in India (2012) left me breathing and speaking better with a Montgomery tube. I am scheduled for another surgery this year but my health condition is the least of my concerns. Women like me, living with disabilities are being abused physically, emotionally, sexually, psychologically everyday by those who claim to love us, some of us think they are doing us a favor by being with us so we let them get away with it, this is my foremost concern, this has to stop!

Since 2007 till date, I have worked voluntarily with women living with disabilities in my small way.

It is my desire to do more that has led me to you; to World Pulse.

And as our hearts beat as one and our voices rise in unison I know I will never walk alone.

Comments

Sharontina's picture

You are!

You are not alone dear! You have a thousand voices following you and with you. I was moved to tears reading that. Lets no more be the vulnerable group. Lets overcome that title making ourselves powerful with a powerful vocal chord.

Much love and blessings.

Merlin Sharontina

Vweta's picture

Thank you Sharontina! I

Thank you Sharontina!

I stopped a few times to wipe away tears as I wrote this down, very sad memories but many victories!

I have faith in you, in me and in the milions of women who are rising up around the world!

When tomorrow comes, we won't be unsung sheros!

Our Voices make the WORLD PULSate...
Vweta.

Sharontina's picture

Thats the spirit!

The victories will continue and no more of tears dear. Be assured. You will rise and rise for others.There is no tomorrow and only today for us. lets go ahead.

Love

Merlin Sharontina

Vweta's picture

Bless your kind words and

Bless your kind words and thank you for your well wishes and optimism.

I feel encouraged and determined already! Yes why put off till tomorrow what can be done today? Victoria acerta!!!

Our Voices make the WORLD PULSate...
Vweta.

Nakinti's picture

Wao! Vweta there is a strong

Wao!
Vweta there is a strong ability within your disability....it stands out clearly.
I see a woman who will go places, a woman whose voice is stronger than those with vocal cavities.
I commend your courageous spirit, and shout GOD BLESS Vweta for me.
You are a special woman.
Sending you tons of love from Cameroon, Nigeria's neighbor.

Nakinti B. Nofuru
2013 VOF Correspondent
Reporter for Global Press Institute
Bamenda - Cameroon
Email: nakinti@globalpressinstitute.org
nakintin@yahoo.com

Vweta's picture

Thank you Nakinti! Living

Thank you Nakinti!

Living with a protracted illness made me aware of strenghts I never knew I had, I have grown to appreciate my resilience and that of other girls and women who have been or are in a disadvantaged position.

We are stronger than we can even begin to comprehend and we grow stronger when we join hands for a cause.

God Bless you too Nakinti! Lots of love and best wishes from Nigeria to Cameroon.

Our Voices make the WORLD PULSate...
Vweta.

CHINYERE MMA OKOH's picture

blessed

Hi, you are so much blessed than you know. Tuning your weakness to strength is truly amazing.

That's what World Pulse is all about.

Love you

Vweta's picture

Thank you Chinyere! We must

Thank you Chinyere! We must learn new abilities within our disabilities. Though it may not be easy but it is surely rewarding.

Lots of love and best wishes.

Our Voices make the WORLD PULSate...
Vweta.

libudsuroy's picture

Vweta, glad to have read your

Vweta, glad to have read your story here. You are strong. Keep on!

Blessings,
libudsuroy/Lina Sagaral Reyes
Mindanao, The Philippines

''Every Day is a Journey and the Journey itself is Home.'' (Matsuo Basho)

Vweta's picture

Thank You Libudsuroy!

We all have a great deal of strenght within us - and love and courage and faith to weather lifes worst storms!

Warm Regards,

Our Voices make the WORLD PULSate...
Vweta.

ikirimat's picture

Vweta, You have conquered

Vweta,
You have conquered failure. Congratulations.
You have a unique way of voicing issues. Actually, your story drew me and I could feel the passion and honesty with which you were writing. Your experience and sharing your vision with the world is bound to change people like you and even the attitudes of those around you.
I like your closing phrase
"And as our hearts beat as one and our voices rise in unison I know I will never walk alone".

Good luck

Grace Ikirimat

"It takes the hammer of persistence to drive the nail of success."


Vweta's picture

My heart swells with gratutude

Dear dear Ikirimat, I thank you for your kind words. They mean somuch to me. I had to hug them really closely that is why it took me a while to respond.

Thank you!

Best wishes and love always,

Our Voices make the WORLD PULSate...
Vweta.

Vweta's picture

My heart swells with gratutude

Dear dear Ikirimat, I thank you for your kind words. They mean somuch to me. I had to hug them really closely that is why it took me a while to respond.

Thank you!

Best wishes and love always,

Our Voices make the WORLD PULSate...
Vweta.

bhavna's picture

Dear Vweta

Congrats for your having such a strong voice that resonates your strength. With all our voices with you it will grow even further. Keep going on and doing the wonderful work you are engaged in. Your ability to lead will help the voiceless gain voice.

Best wishes for you future surgery.

Love
bhavna

Vweta's picture

Thank you very much

Thank you very much Bhavna.

Your words mean so much to me.

With Love,

Our Voices make the WORLD PULSate...
Vweta.

Paulina Lawsin's picture

You can speak audibly and

You can speak audibly and firmly Vweta. The world can hear you with your pen/keyboard. Your physical disability is hardly noticeable if you did not write about it. You are able to communicate your thoughts clearly. You have power in your writing. And it is this power that will speak in behalf of vulnerable girls and women not only in your community but the world.

By writing about your experiences, you'll help people- both women and men, young and old- to take special precautions when they undergo surgery; and for medical practitioners to be honest to their patients on the consequences of any medical treatment.

Good luck Vweta.

Vweta's picture

Dear Paulina, I thank you for

Dear Paulina,

I thank you for your words, they are strenghtening.

My experiences with some doctors opened my eyes and I have tried to advice the women I work with on the importance understanding their choice of treatment and of making an informed decision when it pertains to surgeries.

Last year, one of the young women I work who had a tracheostomy done in a hospital in Nigeria traveled abroad for follow up and she has been decannulated.

I received the news with mixed feelings - I was sincerely happy for her and at thesame time, I couldn't help thinking what would have happened if I had someone to advice me against further surgeries in Nigeria after my tracheostomy.

I feel a sense of accomplishement knowing that good things have resulted from sharing my experiences with others.

Love from Nigeria,

Our Voices make the WORLD PULSate...
Vweta.

Titilope's picture

WHAT CAN I SAY

I am overwhelmed by your experience. I never knew you are living with any disability when i saw you last friday at your community based lecture. I just though you lost your voice as a result of the stress of planing for the program
I must say you are truely making a difference in that community.
I have been working in this community since last year to addresss health care service issues. I work with community members to make improvements to the primary health care centre.
As i have always done with most people i connect on the worldpulse. I work with them to link them with networks, opportunities and governmnet stakeholders that can assist them to expand their work.
Since we are connected now, i know we will work together to realise your dreams. Well done! keep up the goodwork

Vweta's picture

Hello Titilope

Thank you for your honouring my invitation with your presence!

Words could never express how grateful I am.

Most people think I lost my voice when they meet me for the first time - they become concerned when the meet me repeatedly and hear me speak thesame way.

Good work you are already doing with this community! It would be an honour to work with you in any capacity.

With deep gratitude and admiration,

Our Voices make the WORLD PULSate...
Vweta.

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