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It Isn’t My Fault I Have AIDS! Why Should I Hide?

Posted: January 29, 2020

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Initially she had found it depressing, but gradually she realized the difference that the clinic was making in the lives of the patients, many of whom were women.

The third winner of our January 2020 Muse of the Month contest is Shalini Mullick.

It was an busy day at the clinic and Simran had just finished seeing her last patient, when she had an unexpected visitor.

“Didi, just look at this!”

Simran looked up from her desk as Radha entered with a bundle of papers.

Seeing Radha’s energy, Simran asked her next patient to wait, and took the papers.

Even as she did so, she remembered another day, a few years ago, when Radha had come into her room just like this with a bundle of papers in her hand.  She couldn’t help but recall that day and hoped that all was well with Radha.

**

“Didi, see this, this number is not dark,” Radha was pointing towards the printed matter on her test reports, that day, a couple of years back.

Simran had been waiting for the reports from last week and began to review them. Radha’s blood had been tested for viral load, an indicator of disease severity. Abnormal or high values were usually typed in bold making them stand out, as had been the case with previous reports.

She had sighed with relief.  The medicines had worked and the disease was in remission. “Yes, Radha. The medicines have controlled your disease.”

The HIV centre that she had been given charge of in her hospital had been a new experience for her. Initially she had found it depressing, but gradually she realized the difference that the clinic was making in the lives of the patients, many of whom were women. Moments like these when the disease abated and allowed the patients hope were what made her job fulfilling. Most of the women she saw had been infected by their husbands but some were sex workers who had had no education or information about the diseases they could contract. Already marginalized groups, the stigma of the diagnosis and ostracism by society usually further isolated them.

These patients were regular visitors to the government run AIDS center that Simran was in charge of. She was now familiar with their not just their medical profiles, but also their family lives and social circumstances, forming a personal connect with many of them.

Radha was one of the patients who had attended the clinic since its inception, initially with her husband who had been diagnosed at a very late stage.  A routine check-up, after her husband’s diagnosis had shown that she too was HIV positive, though their 5 year old son was spared. She had had to confront not only the diagnosis, which many considered a death sentence, but also the revelation of her husband’s infidelity.

The staff at the clinic had worked hard to assure her that medications could slow the disease, though not much could be done for her husband’s advanced stage of disease.

Prompt care and using the currently recommended treatments had ensured that disease progression had been slowed for a few years before some complications had set in. Her ill health had been compounded by the financial pressure and social implications of her husband succumbing to the disease. She had recovered slowly, and Simran was finally optimistic about her reports. Radha’s story was sad, but, unfortunately a very common one.

Radha had tears in her eyes

“Thank you Didi! I thought I wouldn’t make it.”

Simran had hesitated. AIDS was not curable, though advances in medicine had definitely made it manageable and controllable to some extent.

“Radha, I haven’t done anything special. I am glad everything worked out. This is very good news. But you must continue to take care of yourself, and never miss a checkup.”

“Yes, Didi. I know. You have explained everything to me so many times. I want to ask you for some more help.”

Simran was surprised.

“Yes, Radha, what is it?”

“Didi, I need to go back to work.”

“Of course, Radha.”

Radha had begun work as a seamstress in a garment factory but had to leave because her employer had found out about her HIV positive status a few months into her new job. Her husband’s illness had further depleted the finances, and times had been troubled. Now that she was better, she wanted to go back to having some source of income need a regular source of income

“Why don’t you apply for the post of assistant in the clinic? I will see if I can put in a word for you.”

Radha had been quiet for a moment.

“Thank you Didi, but I don’t want that. I had learnt the tailoring job, how to operate the machinery etc. I want my old job back.”

“Radha, How is that possible? Why don’t we try and find something else for you?’

“Didi, nahin. What the manager did was wrong. It has been bothering me all these months. How can he fire me just because I have a disease? Now I am well; I can work the long hours that it is needed, and he must give me my job back.”

“Of course, it was wrong. But there is so much around us that is wrong. What can you possibly do about this?”

“Didi, you once said your sister is a lawyer. Please let me ask her if she will help me fight this in court.”

Simran was surprised. “Court? Radha, do you know how long the process in our country is. And you don’t have any savings. No one will support you, you will be all alone. Besides, then everyone will know about you having AIDS. Do you want that?”

“Didi, that is a very good question and one that I asked myself often in the last few months? What do I want?  For a long time, I didn’t know what I want. I was so angry with my husband, for straying, for betraying me and then finally for giving me this horrible disease. In my frustration, I began to hate him, hate life and hate myself. I didn’t want to take treatment, and was full of shame because of the disease and how people would look at me. I actually wished I would die. I wanted to punish him for what he had done, thinking that would heal me.  But Didi, I realized I was eating myself up like that. It took me weeks to accept what had happened and I realized that maybe his suffering was his punishment. My anger was becoming a punishment for myself, not him.”

“That made me wonder if I wanted to spend my life in anger. I didn’t. With great difficulty, I managed to let go and accept the situation. What I want is to live life; to live to my fullest, without embarrassment and shame. After all, why should I be ashamed? What wrong have I done? It is not my mistake I got this disease. Didi, you have diabetes, don’t you? You were also sick last month and had to take days off. Is it your fault? Similarly, it isn’t my fault. How is AIDS different? Then why should I run away?”

“I began to think about what I wanted, that I could try for, something that would make my life better. People will say what they want; I have just one life, and that too I don’t know how long. I know that I want my rights, that I want justice. It is my right to live a life of dignity and self respect. Should I be denied that just because I have a disease?”

“I need to fight this, it is something that I must do. Please didi, see if you can help me in any way.”

Simran was stunned at the conviction Radha showed both her thoughts and words. She was still skeptical of the path that Radha was insistent on choosing, but arranged for a meeting with her sister, Aditi.

Aditi had, in turn, directed Radha to a lawyer who specialized in issues related to employment, and understanding the situation, had agreed to waive off her fees.

In spite of that it had been an uphill task with court hearings, incidental expenses and a significant number of disappointments along the way.  Radha had ensured she didn’t miss any of her regular checkups, and it had been more than 2 years since she had begun her legal battle with the system. She had taken up odd jobs to support herself, and secured admission for her son in a local school also. More involved with monitoring Radha’s health and medications, Simran was satisfied at Radha’s disease still being in remission, and hadn’t been too involved in other matters.

**

Simran was stirred out of her déjà vu by Radha handing her the sheaf of papers.

Reaching for her reading glasses, she looked at them to analyze the reports. This time, however, it was she, who was unable to comprehend the text on the papers, and she realized they were not blood reports.

Radha pointed towards a few lines highlighted and beamed with happiness

“Didi, see, the court has ordered the factory owner to give my job back, and compensation for his having terminated my employment. They have also instructed the government to make a law that no HIV positive patient can be discriminated against for this reason. Now no one needs to be ashamed of having AIDS; and no one should have to hide it.”

Radha’s eyes were brimming with tears; and Simran hugged her.

“Congratulations, Radha. You have achieved this by your conviction and commitment. This is amazing.”

As Radha opened the box of sweets she had brought to share with everyone, Simran was reminded of something she had read recently. “The world would be a better place if the woman decided what she wants for herself.”

Yes, with her clarity of thought  and tenacity, Radha had indeed shown that it was true.

Editor’s note: It’s the new decade of the new millennium, and here’s a fresh theme for our beloved writing contest, Muse of the Month. In 2020, we bring to you quotes feminist women achievers around the world – we hope to bring you some food for thought, and look forward to the same engaging short stories that are a hallmark of our Muse of the Month contests.

Here’s the woman for January 2020 – sassy, bold, clear in her vision about what she wanted from life, an unconventional Indian woman who broke all rules about the ‘good Indian girl’, Sushmita Sen came into the limelight when she was crowned Miss Universe 1994. She then went on to do modelling assignments and films, but is better known for her life choices – be it adopting her two daughters as a single woman, being unapologetic about openly being in a relationship with a much younger man, or her dignified way of dealing with all that life threw at her. The cue is this quote by her: “The world would be a better place if the woman decides what she wants for herself!”

Shalini Mullick wins a Rs 500 Amazon voucher from Women’s Web. Congratulations! 

Image source: a still from the movie Nil Battey Sannata

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Shalini grows through her roles as mother and a doctor. She believes that both the

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