BHEKISISA | The hidden cost of speaking out about Life Esidimeni

When the wheels of Life Esidimeni started turning, I was working for the Gauteng government and had a leadership position in a prominent political party. Life was good. My husband, an architect and facilities manager, had more work than he had time for, a lot of it with government entities and individuals working for the government.

But I’ve learnt there’s a cost that comes with speaking out. Bad things happen when you stop playing by the rules of your social world.

I spoke out when we, Virginia Machpelah’s family, discovered that my sister, who had early onset Alzheimer’s disease, was due to be removed from Life Esidimeni’s Randfontein facility, where she had been well cared for.

I spoke out when she was taken away without our knowledge and we did not know where she was. I spoke out when we learnt of Virginia’s death in the care of a nonprofit, Precious Angels Home. I spoke out when we struggled to find her body and when we learnt that my sister was not the only person who had died in similar circumstances of neglect. 

I spoke out during the lengthy arbitration process, at the conclusion of which damages were awarded to victims’ families, and during the inquest that was concluded on Thursday, July 10, at which new information came to light, like that the authorities knew that Virginia was my sister, and took a conscious decision not to inform me when she was being moved. 

Things began to change in January 2017, when the Gauteng health department called a meeting of the families of patients like my sister Virginia, who were then resident in Life Esidimeni’s Randfontein facility. 

Emotions ran high when we were told that the facility would be closing, because many of the families there had struggled for years to get their loved ones into a place like Life Esidimeni. I was one of those screaming the loudest, and it was probably for this reason that the families chose me as one of their representatives. 

I thought it would be a way of staying abreast of what was happening with my sister, so I volunteered. One of the first things I did was go to my political party, to say, “guys, I need help, this facility is closing”. 

I naively assumed that by raising it there, I would be sure to receive some assistance. I raised it at every meeting but no action was taken, and the closure of the facility was getting closer. I then said, “if no one is going to help, I'm going to have to step aside and take this on myself because this is my sister’s wellbeing we are talking about”, and that was that. 

As the number of deaths of former Life Esidimeni patients mounted, our fight became public, and things became crazy. I was called a traitor by several of my political associates.

My husband and I no longer felt welcome at places we used to go to socialise. I had stopped attending political meetings, because I was made to feel like I had committed the cardinal sin of embarrassing the family. 

I realised very quickly that I would have to shut up, or remove myself from those spaces, and I wasn’t going to keep quiet, because for me, the fight to keep my sister in a safe place was more important than anything else.

When we learnt that my sister had died, I was beside myself, screaming louder than ever. The health ombudsman was asked to investigate deaths like hers. The findings shocked us all. And the consequences of me speaking out about the situation, seemed to worsen. 

For example, in the government there’s supposed to be strict quarterly performance appraisals, yet when I handed in my reports nobody wanted to sign them. I struggled to claim leave days or per diems that were due to me, and was accused of absconding. In isolation these might seem like common administrative issues, but they added up to a form of bureaucratic sabotage.

I tried to apply for other government positions, but it was almost as if a red flag had been planted on my name, because opportunities for advancement evaporated, and it applied to my husband by extension. His work completely dried up, and when he pushed for answers, he would hear whispers to the effect that it was part of a ploy to get at me.

I found myself in a grey zone. On the one side I felt half out of my mind with grief and trauma, on the other I am trying to navigate all these blockages in my professional life, the aim of which seemed to be to drive me completely out of my mind.

One time, I received a call from a political contact I was close to at the height of the Life Esidimeni scandal, and she confessed that she had been told to talk me out of fighting publicly, and when she failed to achieve this goal she too had been shunned. 

What value does one attach to this sort of feedback? 

These people will never go on record, so I was never able to prove anything, and nobody wanted to hear about it.

The Afrikaner liberals from the apartheid days experienced something similar. They were effectively shunned for taking principled action that made the volk, and the National Party, look bad. 

Then, like now, large categories of people depended on the government for their livelihood, and so there were a lot of instruments that people in power could work to get at you if you stepped out of line. 

That sort of thing, I felt, was now happening in my life. 

I started telling people I was receiving the whistle-blower treatment, and the response I often received was, “oh, have you been threatened?” and I said no, but I have been targeted in other, subtler ways. 

I spoke out, not for recognition or acclaim but to honour Virginia and those who suffered silently — but I think I was naive in many ways. The thing that keeps me up at night is the impact my involvement in Life Esidimeni activism has had on my family. 

Virginia’s daughter, my niece, collapsed and died on the first day of arbitration proceedings — a day after her 21st birthday; her physician said he thought she had succumbed to a broken heart. 

Soon after this my husband developed a debilitating heart condition. My firstborn son collapsed several times, and my daughter went through a truly terrible time, crying endlessly for months. 

We've been through so many depression tablets and so many anxiety treatments. Whenever I am asked to do an interview or go out and speak on behalf of families, I pull myself together because that's what I promised I would do but in the background I’m broken. 

Unfortunately, this is a side of the story that nobody is that interested in hearing. If it wasn’t for the support we have received from the South African Depression and Anxiety Group I honestly don’t know where we would be.

Today, my solution is to focus on my studies, and on keeping my family together and well. 

Everything else is just too hard.

• Christine Nxumalo’s sister, Virginia Machpelah, died in South Africa’s Life Esidimeni tragedy. Nxumalo has become the voice of such families and a key organiser of the Life Esidimeni family committee. 

This story was produced by the Bhekisisa Centre for Health Journalism. Sign up for the newsletter.