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Tears of Vulnerability

It was one of those days. I was working with MSF Switzerland (Doctors Without Borders) in 2008 for the Nargis cyclone emergency project in Phya Pon, Myanmar in the delta. I noticed my supervisor Anaja’s face looked sadly red when one of my colleagues passed him the message he was answering. He was still holding the line and I was deeply nervous when Anaja told me it was for me. I was walking heavily to answer the phone because I could guess the message. I was right; it was the message of my younger sister’s death that had happened while I was trying for her last chance to live longer. My "cousin brother" said she had passed away three days before and my mother had arranged the instant funeral to bury her soon after her death. It was too difficult for him to understand my words explaining that I had been trying to send money for her operation. The whole room was entirely silent except for my sobs. Buddhist people here celebrate the funeral for one week and Anaja told the admin officer to arrange a taxi for me to go to my mother for the rest of the mourning period. She lived in Thanlyin, a township in Yangon District, about a hundred miles away from Phapon where I was working. I arrived there in the evening and my mother, my brother and my aunt greeted me with grief. I couldn’t say anything but was listening to them talking about my sister’s last moments and it made my heart and body tremble. My mother said my sister had kept asking when big sister (me) was coming until she could no longer hold her strength. I knew my return with money for her operation was her great hope for reducing her pain and extending her life longer. My mother lied to her by telling her I would be coming soon, and she was waiting. One day after my mother’s last lie, my sister gave up her hope and left us for ever. My aunt took me to the cemetery where I told my sister before her grave (just a little heap of ground) to forgive me for failing to save her.

My sister had been suffering from a build up of brain fluid, a consequence of the infectious disease she had got from a man when she was about 32 and had run away for two days, two years before her death. The doctor said that although it was a deadly disease, she could live longer if she would have an operation. We felt a light of hope. I also discussed my sister’s case with some doctors from my work who agreed that the operation would help to remove the fluid in her brain to cure the intense headaches and to lengthen her life.

The single and the biggest challenge for us was the cost of the operation, about 500,000 kyats, which was equivalent to five hundred US dollars at that time. I was the only source of support in my family and I tried to transfer the money as soon as I had saved it from my salary. Unfortunately, I couldn’t reach my aunt through the phone to ask her NRD number in order to access the transferred money. The phone was out of order for days. The money for a longer life for my sister could not reach her in time and she died of the vulnerability of not being able to afford the expense of health care. If we could have afforded the charges in time or if she could have received free medical care that included operations, she would not have left earlier from earth.

Many people in Myanmar are in tears, feeling vulnerable because of high medical charges. Medicines and medical items like tools for operations are unaffordable. The free things we get from the hospitals are the bed and the treatments from the doctors and medical staff. Many people try to save their beloved ones till they have nothing left. Many of them end up in debt for a long time. Several of them, like me, fail to save the life of their loved ones. I have heard many people in grief over their inability to save a life.

The most threatening diseases in Myanmar are malaria and HIV/AIDS. Margie Mason, AP medical writer, noted in 2007, “Myanmar has one of the world's worst health care systems, with tens of thousands dying each year from malaria, tuberculosis, AIDS, dysentery, diarrhea and a litany of other illnesses.” She also mentioned big killers, including tuberculosis, with nearly 100,000 new cases reported annually. The AIDS virus has reached the general population, with more than 1 percent of the nation infected while malaria kills 3,000 people a year. Another big health alert is the mortality of mothers in childbirth. At least 360 of every 100,000 women die in this way.

In Myanmar, some chronic diseases like heart disease, and even some preventable diseases, are also threatening the people because of the unaffordable expense of paying for treatment. I am not sure whether it is funny or depressing that many parents are struggling with big families because they cannot buy birth control pills. I feel very sad when I witness or hear from people in tears telling their stories.

When I was working with ACF (Action Contre La Faim ) in Rakhine State in 2005 as an English teacher to the local staff, my students told me they saw some people who had died in their tiny huts without the notice of the people surrounding them. When I visited Kachin State, I was told about the threat of malaria; the people there do not get preventive medicines or free medical charges. I have thankfully found several NGO’s that are providing medical supports, but there are not many places for people to go to get the care they need. A very reliable local NGO in Yangon is Thukha Charity Clinic, attached to the Free Funeral Service Society where I am voluntarily teaching in their free education project. MSF Switzerland and MSF Holland are two other NGO’s that sponsor malaria and HIV prevention projects.

Some people are undertaking the adventure of traveling to refugee camps in Thailand to get free medication. They know it is extremely risky, but they have no choice. My youngest sister’s family is in one of those camps, for her husband needs frequent visits to the clinic since he received the wrong treatment during his gallstone operation in Yangon. They have been there for three years and they have had their sixth child there. Now three boys and a little girl are facing challenges with their education. They cannot follow the school lessons in a second language (Thai) and it is not possible to return to Myanmar as their father cannot pay his medical expenses here. The eldest child is living in Myanmar with my mother and going to school. I wonder how many families in our country are faced with similar challenges.

In December, 2009 I went to Mae Sot, a town in Thailand on the border with Myanmar, during the Christmas holiday to try to meet my sister’s family, but I was not allowed to visit the camp and we could just talk on the phone. While I was crossing the bridge between the two countries, I was greatly concerned to see people across the river in Myanmar with big tire tubes using their bare hands as oars to row across to Thailand. One woman was even holding a child in her one arm. That scene made my eyes tear up. There are many sad stories of Myanmar people who are struggling in Thai refugee camps for their health care. Margie Mason, the AP writer, noted down ; "They travel for days though checkpoints, across dangerous roads and past Myanmar's bribe-hungry soldiers to make it to the Thai border. They're not refugees fleeing the junta -- they simply want to see a doctor." According to Dr. Cynthia Maung, who started the Mae Tao Clinic a year after she fled Myanmar in 1988 following a violent crackdown on student pro-democracy protests, "Many patients come too late and die in the clinic, while newborn babies and the elderly are sometimes abandoned by family who simply cannot afford to care for them." It was heart breaking for me to hear this.

At the moment, it is very frustrating to see that most of the country's wealth is owned by the top ranked military officials and their partners while a roughly estimated 90 percent of Myanmar lives on just $1 a day. Margie Mason says that the United Nations ranks this resource-rich country among the 20 poorest in the world. If I were able to have a chance, I would build free health care centers everywhere that there is a demand. There would be no more people crying for the lack of help in fighting diseases. Now, the most possible thing I can do is to provide a link between patients and existing health support organizations. I will go to those organizations to ask for help in the areas where I surely know the risk. Although I cannot stop the suffering completely, I feel positive that I can help my vulnerable community to some extent.

This article is part of a writing assignment for Voices of Our Future, which is providing rigorous web 2.0 and new media training for 30 emerging women leaders. We are speaking out for social change from some of the most unheard regions of the world.

Comments

Leina's picture

So Sad

Dear NI NI,
Thanks for this informative and beautifully rendered piece.You sister`s story made me cry ,reminding me of what many families around me now are facing in the hands of poverty and lack of health care.
Love
Shekina

NI NI AYE's picture

Thanks for your sympathy

Hi Shekina

It's very kind of you to express your sympathy on my sadness. I hope we can reduce the needs and fulfill the hopes of families to live in healthier and happier communities.

Love

NI NI

Congratulations on Very Happy Teachers Day through ten years journey!

Debra L's picture

Heartful story with a call for change

Ni Ni -
This story is beautifully told - your personal grief for your sister's death and the challenges of your brother in the refugee camp really bring this to life. I understand so much more about your life, your struggles, and your great courage in supporting so many. You make such a clear case for the desperate struggle to afford health care.

Thank you for sharing your personal stories.

Love and blessings,
Debra

Debra

NI NI AYE's picture

You made me strong

Dear Debra

It was very thankful to receive your cheerful encouragement along this VOF journey. I love to wait our meeting every week. I have sent you the photos of my sister's children from the refugee camp. I hope you will love them.

Love and hug

NI NI

Congratulations on Very Happy Teachers Day through ten years journey!

Breese's picture

Ni Ni - this is a powerful

Ni Ni - this is a powerful and terribly sad story that exemplifies the nexus between poverty and health, and the dire need to improve access to resources and treatment for communities around the world. Thank you for sharing your story and I'm so sorry for your loss.

with love,
Breese

NI NI AYE's picture

Needs are so many that -----

Hi Breese
Thank you so much for your transforming love. Yes , I found so many needs that I cannot prioritize to arrange in order. Hope to find the solutions to reduce these sorrows around the world.

Lovingly

NI NI

Congratulations on Very Happy Teachers Day through ten years journey!

Sarvina's picture

Really sad!

It is a sad story - living in poverty everything is seem unfair for us to live in the world. Lack of health care system, education, foods so how we live without those things....? Your story really made me feel so sad and cry, I am really sorry you loss your beloved sister. Thanks so much for sharing your sad story to us!

Love,
Sarvina

Regards,

Sarvina from Cambodia
VOF 2011 Correspondent

NI NI AYE's picture

Sorry for late reply

Dear Sarvina
Thank you a lot for sending kindness. I was so busy that I could reply you late and I really sorry about that. I hope we could the fairer world soon.

Lovingly

NI NI

Congratulations on Very Happy Teachers Day through ten years journey!

Sarvina's picture

Sister Ni Ni! I know you have

Sister Ni Ni! I know you have problem with internet connection so no need to say sorry to us. We are always happy to see your comment. Take care!

Love,
Sarvina

Regards,

Sarvina from Cambodia
VOF 2011 Correspondent

usha kc's picture

Hi NI NI, Being apart

Hi NI NI,
Being apart from our beloved ones for ever is really unbearable paining.Reading your story makes everyone's eyes moist and feeling so sorry to know your story but friend the issues you raised is vey crucial.For your sister's life, 500$ amount was so important but that amount means nothing for some other, it is as an expenses on tea/coffe.How differences is there in between!!
really touching story you shared. Thank you for it.

NI NI AYE's picture

Good governance reduces inequality

Dear my friend

I love your quote of difference. I believe Good governance reduces inequality . I love to see you again .

Lovingly

NI NI

Congratulations on Very Happy Teachers Day through ten years journey!

rozjean's picture

Poignant and Powerful

Hi NI NI,
Your story is very poignant. The telling of your family's stories to illustrate the sad state of health care in Myanmar is very powerful. Even as an educated woman, there is only so much that you can accomplish. Sadly, so many families do not even have a Ni Ni behind them to try to alleviate their suffering. I know you will continue in your quest to improve the quality of life not only for your family but for the people of Myanmar in general.
Warm wishes,
rozjean

NI NI AYE's picture

Yes I will

Dear Roz
Thank you so much for your kindness and time to finish well this assignment. I know you went to bed late to work with my assignment . You are really nice to me. I also appreciate your view on my future intention and I am sure I will try my best to achievement of them. Thanks again my Roz.

Lovingly

NI NI

Congratulations on Very Happy Teachers Day through ten years journey!

Shristi Bajracharya's picture

dear ni ni, Its

dear ni ni,
Its a shame that the nation still suffers the poverty while the officials get richer everyday. Your kinds of stories are the ones which show the true reality of what the people of a nation faces everyday. Its the same here in our country "Nepal" too. I dont know all the facts and figures but even I can understand how bad it is.
I feel truly sorry to know ur story of loss, struggle and helplessness. Hope you are coping well. My deep condolences for your loss. Thanx for sharing your story with us.

Warm wishes,
Shristi

NI NI AYE's picture

Palace and the sacks

Dear sister Shristi

Thank you so much for your kindness. You're right sister . They have been buildings like palace while million of people use sacks for the floor less shelters. It's really sad and frustrating . By the way I hope to come to Nepal to visit the place where Buddha was born.

Lovingly

NI NI

Congratulations on Very Happy Teachers Day through ten years journey!

Tripti's picture

your welcome

Dear Ni Ni,
Your so welcome in our country. Hope you will find her as beautiful as I find her everyday. Hope to read more of what you have to say.

Shristi

Shristi Bajracharya's picture

your welcome

Dear Ni Ni,
Your so welcome in our country. Hope you will find her as beautiful as I find her everyday. Hope to read more of what you have to say.

Shristi

imanigurl01's picture

Your Caring Strength Ni Ni...

Hello NiNi,

I was so very moved by your story of family loss ( your beloved sister); your mother's attempt at keeping your sister alive until your return home. Ni Ni, I am sorry for your loss, however, know with certainty, that your continued humanitarian efforts will give testimony to your sister's life, and your kind heart!

In Peace,
Imanigurl

Imanigurl01

NI NI AYE's picture

Thanks for your kind heart

Dear Imanigurl

You could thoughtfully see the time my mother and my sister passed. It made me cry whenever I thought abut that time. It was the hardest time for both of them with worries , sufferings , struggling to survive and struggling for getting help for a hope. Now I have been trying to save my community from such and similar tragedies . I found out it is a hard work but I have stated and I have thought different approaches to accomplish . Thank you so much for your kind heart Imanigurl.

Lovingly

NI NI

Congratulations on Very Happy Teachers Day through ten years journey!

Alice Kero Wood's picture

Hi, NiNi, What a strong story

Hi, NiNi,

What a strong story to illustrate one of the world's greatest injustices. I truly understand the importance and good work NGOs can do in countries like yours. I think that you did the best that you could for your family and am sorry that you lost your sister in such a painful way.

Alice Kero Wood

NI NI AYE's picture

Thank you Alice

Hi Alice

I feel so warm by your friendly voice. Yes , I am so grateful to NGOs for heir humanitarian assistance provided among vulnerable societies I have been dreaming of setting up such kinds of organizations for long and I will find the ways to do it. Thanks a lot for your lovely voice Alice.

Love

NI N

Congratulations on Very Happy Teachers Day through ten years journey!

Rudzanimbilu's picture

Thank you Ni Ni

Ni Ni, I know how it feels like to loose someone you love and I am so sorry that your sister died without getting the medical attention and operation that could have saved her life. You voice is not howling, it is speaking words of action and I hope that someday soon things change in your country. It is really brave of you to share such a moment of loss with us. I am looking forward to reading more of your work and I hope to find the courage you have instilled in me today. Well done Ni Ni.......

Rudzanimbilu Muthambi

NI NI AYE's picture

You're beside me

Hi Rudzanimbilu Muthamb

Your words are so warm that I could feel you are beside me. Now I am reading my story and I hope you can will reach it and know more about my life . Glad to talk to you more my friend.

Love

NI NI

Congratulations on Very Happy Teachers Day through ten years journey!

carol adams's picture

you touch my heart

My heart is with you dear Ni Ni. I am sorry for your loss. You honor your sisters through this story. I see in you a strong woman bringing voice to a devastating reality. Your story contributes to the need to find solution NOW.

Blessings,
Carol

Carol Adams

NI NI AYE's picture

It's a warm heart

Dear Carol
I really love to have your warm heart . Now I have got many lovely sisters like you through World Pulse and I am so happy to be with you all . Hope to talk to you more.

Big love

NI NI

Congratulations on Very Happy Teachers Day through ten years journey!

Farona's picture

Ni Ni sis...... I can feel

Ni Ni sis......

I can feel your pain, may be not entirely, but partially.

I have a younger sis too, she suffered from TB earlier when I was apply for VOF program. I used to come back from her isolation ward and write my piece till 4 am in the morning.

At the beginning due to poor analysis of doctors we couldn't figure out if it was TB, then one night she started to lose her breath, begging me to ask my parents to hospitalize her - if I waited that day 10 more minutes we would have lost her.

Thanks to gov hospital providing free treatment my sister finally recovered.

A good and free health care is a nation's backbone, I wish I could do more sitting here for your country.

As a big sis, I felt your anxiousness to help your sister - but sometimes, time has it's own ways.

Your belated sis will be proud of you - proud of your efforts

My well wishes sis

Take Care

NI NI AYE's picture

So happy with you all

Hi my beloved sister
I am so happy to hear you could conquered the big fight against life threatening . It was so lovely to hear about free health care there and thanks for thinking of help here. Please say hello to your sister and I send you all my love. Thanks again for your worm voice and hope to talk to you more.

Love

NI NI

Congratulations on Very Happy Teachers Day through ten years journey!

Ruun Abdi's picture

Dearest Ni NI, This is very

Dearest Ni NI,

This is very personal touching story, thanks for taking the courage to write it down and share it with us. Health care is one other basic need for human beings. Unfortunately many people in the developing countries suffer till death due to lack of access to health care facilities. Many lives could have been saved if they had received the basic needs. I am so sorry for your lost.

Warmest Regards.
RA

NI NI AYE's picture

That's true

Dearest Ruun Abd

I absolutely agree with your view on health care and health issue. I hope to help the community in such and similar cases. Thank you so much for your love and excuse me for late reply due to my busy days.

Lots of love

NI NI

Congratulations on Very Happy Teachers Day through ten years journey!

Dear Ni Ni Aye

I embrace you as my sister!! You've begin a great step by raising your voice through pulsewire. Do stay connected with much more people through this network and start building the network to work together and bring desired change that you long to bring.. With love

Best
Singmi

NI NI AYE's picture

Yes , sister

Hi Singmi

I also feel like you are my real sister. We have in common in our interests . I hope we could make our dreams come true sooner or later. Very thankful for your lovely voice and , yes, I will keep in touch with World Pulse community for sharing ideas leading better changes of our communities.

Love

NI NI

Congratulations on Very Happy Teachers Day through ten years journey!

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