Living under the stigma of HIV

Living under the stigma of HIV

SINGAPORE - Eleven years after discovering what her husband calls "the death sentence", Madam Bashah Mustaffa, 59, has only one wish before she finds peace.

Through the horror of discovering, in 2000, that she received HIV-tainted blood during a blood transfusion at a Kedah hospital, through the turmoil of the following years living under the shadow of death, Madam Bashah yearns for only one thing before she dies - a good wife for her son.

One who would love and care for him, in sickness and in health, just as her son, Mr Mohamed Naim, 23, has cared for her.

But she fears it would not be so simple. She fears the stigma of her disease would affect his chances of marriage.

That stigma has been on her mind ever since her plight made headlines in Malaysia. The mother of four - three girls and a boy - had sued the government hospital RM100 million (S$40 million) for negligence.

She was finally awarded a reduced sum of RM788,000 in 2007, says her husband, Mr Abdul Halim Abdul Hamid, in an interview with The New Paper on Sunday earlier this week.

But every court appearance would result in renewed publicity over her disease, and stoke her fears for her children.

Mr Halim, a 56-year-old labourer, says in a telephone interview: "Fortunately the lengthy court case is over. We accept what God has given us. It's time to move on (with life)."

It was 11 years ago when I first got a glimpse into Madam Bashah's world. The family lives in a village in Jitra, Kedah in Malaysia. When they found out about the tainted blood, their lives were shattered.

Anger and despair

There was anger, then despair, then fear over how others would react. So she retreated from the public glare.

But one day in 2000, she decided to face down the stigma. She didn't do anything wrong. Why should she hide?

The reaction among those in her village was mixed.

Some villagers offered their prayers and help; others shunned her after reading her story in the news.

One by one, their children stopped attending Madam Bashah's Quran-reading classes, says her husband.

"In my village, people know little about HIV infections," Mr Halim says in Malay. "It is still a misunderstood disease with no cure."

Now her frail body, battered by years of fever bouts, may have taken its toll.

She has little appetite. She struggles to swallow the cocktail of pills she needs each day.

Says Mr Halim: "She used to weigh more, but her weight now is barely 40kg. Underneath her baju kurung, it's just skin and bones."

I tried to speak with Madam Bashah twice this week - to reconnect where I last left off.

But her feeble voice in the distance reflected her fragile physical state.

She had just returned from a five-day hospital stay as a result of her recurring fever.

Thoughts of suicide

Thoughts of suicide

I overheard her say to Mr Halim: "Send my regards to him (this reporter). My body hurts."

I imagine Madam Bashah on her bed, alone in her thoughts.

Near her are bottles of medicine to boost her immune system.

Also nearby, I am sure, are religious books to keep her faith strong.

At such a setting, she once told me: "When I found out I was HIV-positive, I nearly wanted to end my life. "Later, I started to think about my children. Who will care for them and where will they live?"

Her worry stems for her personal experience.

The stigma attached to a HIV-positive person in a small village can spill over to the next generation - her innocent children - even though they do not have the disease.

Says Mr Halim: "She worried that people would begin to shun our children for fear of getting HIV.

So how would they ever find suitable mates?"

Her children are her life. They stood by her in the seven years it took to fight the case in court. They cared for her and accompanied her to court, says Madam Bashah's lawyer, Mr Jagdeep Singh Deo.

Says Mr Singh, 40: "What I saw was the strong bond between the children and their mother. Despite being ostracised, her family stood by her."

Triumph over obstacles

It was an emotional moment for Madam Bashah's family when the judge ruled in her favour.

Mr Singh adds: "I could sense a sigh of relief from the family. She just did not want to be reminded of her plight each time she appeared in court. For her it was finally closure."

I'm glad I found time to try to connect again with Madam Bashah. Hers is a lesson in resilience in the face of adversity.

She did not give up despite the talk, the pain, the grief.

Mr Halim admits that there were times when he was "prepared that she would not make it".

"From what I read in the news and see on TV, I honestly did not expect her to last this long.

"Sometimes I'm sad and cry quietly because of my family's fate. As a man, you just don't show this side."

With proper medication, there are HIV survivors who continue to live for more than 20 years.

Now, Madam Bashah is buoyed by the satisfaction of seeing her three daughters - Masriza, 32, Norhaslina, 30, and Naezawaty, 29 - happily married.

Adds Mr Halim: "Praise be to God. We now have two grandchildren. They keep our home noisy and us busy."

Only Mr Mohamed, who works as a machine operator in Kelantan, remains single. Should he find a good wife, Madam Bashah's wish would be fulfilled, and she would finally be at peace.

zaihan@sph.com.sg

This article was first published in The New Paper.

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