Healing by Helping

This is how Thabisile Sethaba turned a child’s silence into a life’s work — and why she believes the right to choose how we die begins with how we live…

I was eight years old when I watched my mother going through active end-of-life, and not one adult in that room thought to speak to me. That silence , the way grown-ups looked through me, past me, around me taught me something I have spent my whole life trying to undo. When someone is dying, we forget the children. And too often, we forget the person dying as well.

My aunt came to collect me from my father's home during the Easter holidays. No one had warned me that my mother was ill. I walked into her bedroom and the air was thick with fear and confusion. I heard someone say to her, "Look, we brought your daughter. You must fight and live for her." As if she had any choice left. As if her body was a matter of willpower. As if her dying was a failure.

That night the call came. I was not asleep  I never was , but in line with the age-old tradition of how we speak to children about death, a family member crept to my ear and whispered what they could not say to my face. “She said ,your mom is gone “.In the days that followed there were pitying looks, a sombre house, a collection taken up at my school. But still no one spoke to me directly. My mother had simply "gone."

We said to her: fight and live. But what we never asked was: what do you want? That question simple and radical  is what I have devoted my life to.

What strikes me now, as a thirty-four-year-old woman who has already outlived her beautiful young mother by nine years, is this: we told her to fight. We made her dying about our grief, our fear, our inability to let go. We never gave her the gift of a real conversation about what she needed, what she wanted, what would allow her to feel held and at peace. That erasure of her voice, of her agency  began long before the end.

I believe that is where the conversation about medical assistance in dying (MAiD) must begin. Not at the deathbed, but in the long years before it. Not in the clinical language of policy, but in the ordinary truth of human lives.

My first job was at a funeral home, handing out refreshments at the graveside. I was transfixed by the children standing at the edges of every ceremony, unaddressed, uncomforted, confused. I began to engage with them. In giving them the clarity I had been denied, I started to find my own healing.

That impulse became a vocation. I went on to co-found  SendOff, a digital company built on a simple, radical idea: to simplify bereavement. In this process I saw a need to destigmatize death conversations and I launched BabesWeDeathcare  a platform to make conversations about death and dying more authentic and relatable for young people. Because if we can talk about death honestly, we can also talk about how we want to die. And that conversation changes everything.

I am a mother to my two daughters now. I am an entrepreneur, a lifelong student, a woman with purpose. My passion does not come only from wanting to help people die well ,it comes from understanding that dying well is inseparable from living well. The same systems that deny people dignity in life in healthcare, in housing, in being truly heard continues to deny them dignity at the end of it.

My grandmother prayed for a gentle release when her suffering grew intense. She said it clearly, to all of us: "When sickness strips me of my dignity, please release me and let me go. I don't ever want to exit weak and in pain." Mercifully, she transitioned in the spirit and image we had always known her to be. Her prayer was answered. But I have sat at bedsides where it was not.

Through my work I have witnessed, again and again, people whose dignity has been stripped away at life's end ,not because of illness alone, but because the people around them could not bear to honour their choices. Because no one had asked what they wanted while there was still time.

This is why I  believe that medical assistance in dying shouldn’t be frowned upon but embraced as the power of choice, power of honor and strength . What MAiD offers is not a shortcut or a surrender  it is a choice. It is the profound, courageous act of saying: I know what I need. I know how I want to go. I deserve to be heard. For people facing terminal illness, for people whose suffering has become unbearable, for people who have lived their values and wish to die within them — the right to that choice is not a luxury. It is dignity itself.

My grandmother knew her own mind. She told us what she needed. All she asked was that we listen — and that we had the courage to honour it.

Many assume this cause has no relevance to a young Black woman in South Africa. I want to challenge that assumption gently but firmly. Death does not discriminate. Suffering does not discriminate. And the hunger to be seen, to be heard, to be treated as the author of your own life right up until its last page  that is universal. That is human.

As a society we have become so attached to our own worldview that we refuse to engage with other people's lived experiences and choices. We make decisions for the dying as we made decisions for me as a child without asking, without listening, without trusting them to know their own truth. I ask only this: that we stop. That we sit down. That we ask the question we so rarely ask, to the living and to the dying alike.

“What do you need? What do you want? How can I honour you?”

My love for talking about dying comes entirely from my love for those who are living. If one person  young or old  does not have to suffer alone, in confusion and secrecy,  if one person is given the choice, the voice, the dignity my mother and so many others were not  then my life and my work will have been worth it.

Join the campaign

Dignity SA campaigns for the right to choice and compassion at the end of life. If Thabisile's story has moved you, add your voice to the campaign to decriminalise medical assistance in dying (MAiD) in South Africa.

https://awethu.amandla.mobi/petitions/urgently-decriminalise-medical-assistance-in-dying