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LIVE BY DESIGN | What questions come up for you about end-of-life situations?

What questions come up for you about end-of-life situation? I am sharing two of the questions that landed in my inbox in the last week.

Question One: What do I need to do to ensure that my chosen, not-biologically related, representative will be recognised to liaise with the hospital in the event of my death?

The person in question resides in Johannesburg, has a solid friendship circle, and does not have a single living relative in South Africa. Recently the person had serious health scare which could have resulted in sudden death if it were not for the routine check-up that revealed the imminent problem.

What if the outcome had been different and they were now the body in a morgue with “next-of-kin” sisters and granddaughters far away either elderly or with few resources – possibly unable to travel?

The legal advice I received was that the person should update their will and insert the name of the trusted friend in the will as the designated person authorised to request release of the body for the funeral.

This, of course, requires that the designated person needs to be easily contactable – perhaps create a small card with the information and put it together with your ID in your purse or wallet.

Question Two: On the LoveLegacyDignity website you have an Advance Directive and a form to nominate a Health Care proxy. These documents do not have official legal standing, what can I do to try to make sure that my voice is heard and respected?

One day, still in my lifetime, I hope this question will be redundant.

In several other countries, the Advance Directive (some refer to it as a Living Will) is legally recognised and the medical profession adheres to the patient’s wishes one hundred percent (probably due to the fear of being sued if they were to deviate from the wishes expressed).

Similarly, in many other countries, the person you designate to speak for you if/when you are unable to speak for yourself is the recognised authority that the medical profession will defer to – and it is important to note that this chosen person does not need to be next-of-kin.

Currently, hospitals operate on autopilot guidelines, such as “only immediate family may see the patient”. They want only immediate family to be the point of communication with the medical staff.

This is a serious problem for people, whose chosen way of living, has resulted in having extraordinarily strong ties to non-family members.

You might remember during the Covid-19 pandemic that Advocate Thuli Madonsela, former Public Protector, currently the Chair in Social Justice at Stellenbosch University raised the importance of the issue of recognition of non-family relationships. Initially, regulations proposed funerals only be attended by “close family members”. It took advocacy for people to accept that the state should not prescribe attendance according to biological, legal, or family status.

Both Mapi and I have named Health Care Proxies to advocate for us who are not our next of kin. For Mapi it is a good friend who is also close to her family, whom she trusts to communicate with everyone and who will have the calmness and courage to say, in the given circumstances, “Yes, it is okay to turn off the life support machine.” For myself, I do not want my beloved husband to be in this predicament. I have a very dear friend, with a medical background, who has the perspective, sufficient emotional distance, calmness, firmness, and courage to act for me. I am grateful for her acceptance of this responsibility.

And what’s to happen if an emergency arises? My GP has a copy of my Advance Directive and the form nominating my Health Care Proxy. At home I have a file ready to be taken to the hospital with me should that occasion arise.

But I know that the likelihood of my wishes being respected depends on the chance of which medical staff happen to be on duty. Will there be a doctor who believes it is their right to have the final word on treatment of patients under their care or will there be a doctor who respects patient’s rights to make their own decisions, including the right to refuse treatment?

A human rights lawyers has suggested that LoveLegacyDignity needs to consider expanding its advocacy role. Currently, Mapi and I write this column for News24 and our LLD subscribers. We also accept any invitation to speak on radio, TV, or any group of individuals. We run a bi-annual online course, Live By Design Finish Strong. It is our soul work. Three other paid-for part-timers support us.

What might more advocacy look like in terms of resources and time? It is suggested that Mapi and I search for lawyers prepared to be pro bono counsel who will advocate for legislative changes to secure these patient rights.

However, the wheels of legislative change always turn extremely slowly – it is a long game. In the shorter term, what is the possibility of an interim solution that could be pursued? What might our about-to be advocacy group achieve if it were to approach the state hospitals and private hospitals and request they engage on this issue?

This is seriously thought-provoking. It requires an activist mindset. Any volunteers or suggestions from our readers? Please write to info@lovelegacydignty.com

Meanwhile, our answer to the question about what can be done to ensure your voice will be heard is not very comforting. Current practice is out of sync with the spirit of our Constitution.

This needs to change.

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LIVE BY DESIGN | When should we wear masks to care for ourselves or protect others?

Our flight approaches Johannesburg. The clear sunny winter sky becomes hazy, and then as we circle ready to land at OR Tambo I see the city through its dusky veil of smoke. Winter is always worse than summer. Our city has a kind of industrial metallic smell. When I’ve been away to the bush or the sea, my nose wrinkles as I drive closer. Still, my heart is happy. This is home.

I’ve been traveling for eight weeks, working virtually, part-time along the way. Discussions with colleagues and keeping in touch with family and friends has meant making dozens of WhatsApp video calls. It has been really noticeable how often I’ve been told of people being quite ill, mostly colds and flu, sometimes bronchitis or pneumonia – even taking a whole week off work to recover – not just down for a day or two. I ventured to suggest that perhaps the air quality might exacerbate the winter propensity for illness?

I grew up in a coal mining town. We used coal for cooking and heating water. As children when we blew our noses, our hankies were always blackened with the coal dust wed inhaled.

Thirty years ago, I drove weekly from Johannesburg though Ogies to a rural community nearby. I would notice women and children scratching through the waste coal slag for what we used to call “tailings” – the small bits of coal. Using these for cooking would save on paraffin costs. But in the small homes of townships and informal settlements, the inhalation of fumes is concentrated.

My friend Gonda, completing her Master’s degree in community health, researched the occurrence of respiratory issues in children living in these highveld mining towns. The long-term consequences of emissions are serious: pulmonary disease, lung cancer, pneumonia, eye cataracts, strokes, ischaemic heart disease.

I wondered what the current data is on Johannesburg’s air quality – is it improving? Would living at the sea would be a healthier life choice for longevity. I looked up the Air Quality Index, AQI. The results surprised me. In descending order, from worst to best the South African figures are:

AQI 158 Cape Town

AQI 156 Johannesburg

AQI   57 George

AQI   42  Port Elizabeth

AQI   29 Middelburg

AQI  25  Camps Bay

AQI   25 Mbombela

 

eSikhaleni, popularly known as eSikhawini comes in as the place to live with the cleanest air.

Most of us live where we work. We don’t have the choice to move to KwaZulu-Natal, the Lowveld or Camps Bay. So what more could be done about improving air quality? Clean energy is obvious but we could do more about vehicle emissions.

My eight weeks of travel included a week in central London. In terms of traffic noises it was very different from previous visits years ago. It was remarkably quieter. As I waited to cross a street, the passing buses, taxis and cars purred. They were almost all electric vehicles.

I learnt that the mayor of London Sadiq Khan, concerned about the respiratory health of London’s inner-city children had pushed against petrol- and diesel-powered engines. Their carbon mono oxide diffuses across lung tissues into the blood stream making it difficult for the body’s cells to bind with oxygen. Lead in emissions is dangerous, with neurological and gastrointestinal effects. Non-electrical vehicles now pay a penalty to drive in London’s inner city. The vehicle switch has been phenomenal.

It is not just London. As I travelled through Germany the increasing presence of electric cars, the numbers of parking bays with charging sockets in parking garages is noteworthy. For some people the switch may have been due to what they consider to be a moral choice to be responsible in terms of environmental considerations. For other’s it is an economic choice – several countries have introduced tax incentives which are significant enough to be seductive.

In the meantime, I wonder how long it will take for our country to have a stronger public policy and tax incentives to support changes in industrial emissions and electric vehicle production and adoption. In the longer term, such change  would improve the Air Quality Index of South Africa’s industrial and residential areas and lower the incidence of the disease mentioned earlier. As a nation we’d save on medical treatments. What’s stopping us from accelerating this change?

All things considered, I’ve decided I’m going back to wearing a mask in social or travel situations when I’m in close proximity to others. I had already noticed that some people who are sneezing have taken to wearing masks as an act of social responsibility.

This week Botswana’s Letsile Tebogo won the Olympic gold medal for the mens’ 200m. USA hot favourite Noah Lyle congratulated Tebogo, touching him physically. Lyle later left the track in a wheelchair, and it was revealed he had tested positive for Covid two days earlier. Until then Lyle was being feted as a hero. Now social media is alive with comment – one X posting criticised Lyle as, “irresponsible and self-serving, putting others at risk.”
One medical practitioner told me that mask wearing stops the spread of infection – but only certain masks.

The USA’s Centre for Disease Control (CDC) advises that if masks are to protect wearers from inhaling germs – this type of protection comes if you wear better fitting masks – for example the N95 or KN95 respirators.

Living by design? I dislike wearing masks, but that’s preferable to becoming ill after inhaling germs that I could have avoided! And if indeed it is me that’s unwell, there’s a responsibility to protect others.

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LIVE BY DESIGN | What questions inform living by design: A path to fulfilment and legacy?

For several months, Helena Dolny and I have embarked on a journey of exploration and reflection, delving into what it truly means to live by design. Together, we have crafted pieces that examine the importance of intentional living in every aspect of our lives – from daily choices that shape our moments with loved ones to the critical medical decisions we face as we approach the end of life.

Through our own experiences, keen observations and the generous lessons shared by others who have navigated love, loss, grief and the profound realities of mortality, we aim to inspire a deeper understanding of how to live fully and authentically.

On the last Saturday afternoon of every month, we host Death Café – a safe place where people hang together for an hour and a half, and talk about life and death. Our members take turns to guide a session. Last week, we were invited to engage with a series of questions. The first was: Are you living by design or by default?

Our discussions had depth and challenge.

The dialogue turned into the exploration of our values, priorities and choices we make – or sadly often neglect to make – when it comes to shaping our lives. Our guide last Saturday was executive coach Sharon Jansen. She had prepared a series of deep, thought-provoking questions. Each question served as a mirror, reflecting our current life choices while challenging us to reconsider our paths.

The concept of living by design

At its core, living by design involves consciously crafting one’s life according to personal values, priorities and goals, rather than merely reacting to circumstances or societal expectations – essentially creating a life of intention instead of defaulting to the path laid out by others. As we asked ourselves what living by design means, it became clear that self-awareness plays a crucial role in this journey.

Identifying whether you’re operating by design or by default requires reflection. Ask yourself: Are you making choices that align with your values and passions, or are you going along with the flow because it’s easier?

By recognising where we might be living reactively – like following career paths that others deem “successful” or adhering to social norms – we can begin to shift our mindset towards intentionality.

Societal norms and expectations

Navigating societal norms is another significant challenge in the pursuit of a designed life. We examined how external pressures often dictate our decisions – from career choices to relationship dynamics. Society tends to impose standard benchmarks for success: Marriage, home ownership and career achievements. However, these milestones may not resonate personally for everyone.

To truly live by design, we must learn to question these expectations. How do they align with our values? Which of them reinforce our desired path, and which stifle our individuality? Sharon prompted us to think critically about how we could dismantle these pressures. This may involve seeking supportive communities that celebrate authenticity and setting boundaries with those who inadvertently impose expectations.

Happiness and fulfilment

One of the most striking realisations from our discussion was the profound impact that living by design has on our happiness and fulfilment. When we align our daily actions with our true selves, there’s an undeniable sense of joy that comes from creating a life that reflects who we are.

Conversely, living by default often leads to feelings of discontentment. We might find ourselves stuck in jobs that drain our energy, maintaining relationships that no longer serve us, or neglecting our passions due to fear or insecurity. Living by design is liberating; it invites us to pursue our interests and passions unapologetically, which enhances our overall wellbeing.

The necessity of sacrifice

However, this journey is not without its sacrifices. Sharon posed the essential question: What are you willing to give up to live a life by design? These sacrifices can range from relinquishing perceived security – a stable job or a familiar routine – to letting go of toxic relationships that deter us from our path.

The willingness to sacrifice is paramount. It signifies commitment to the life we seek to build. The depth of this commitment often dictates the strength of the choices we make. Nevertheless, it’s crucial to approach sacrifice mindfully, ensuring that the choices we make enrich our lives rather than diminish our wellbeing.

Balancing design with life’s chaos

Life, however, is unpredictable and chaotic. One participant raised the concern of how to balance the desire for a designed life with the inevitability of setbacks and disruptions. The key lies in adaptability. Embracing the fluid nature of existence allows us to align our plans with current realities.

Failure plays an integral role in living by design. It teaches resilience and provides opportunities for growth. Instead of viewing setbacks as deterrents, we should see them as essential components of our journey, refining our approach and informing our next steps.

Avoiding over-planning

Yet, as we strive for a life lived by design, we must be wary of over-planning or rigidity. There’s a fine line between being intentional and becoming immobilised by the need for perfection. Flexibility is vital; it enables us to pivot when new opportunities arise or when life takes unexpected turns.

Reflecting on how to maintain this flexibility, we discussed the importance of setting in place loose plans instead of strict timelines, allowing for spontaneity and creativity. By embracing changes as part of the journey rather than obstacles, we can maintain a sense of adventure in our designed lives.

Personal values and reassessment

Personal values and priorities are the cornerstone of a life lived by design. They guide our choices and shape our identities. But how often do we reassess these values? This reflection is necessary as we evolve through different phases of life. What once brought us joy and fulfilment might no longer resonate as we grow.

So how would you answer the questions? What does it mean for you to live by design rather than by default? What do you identify as the approach you are currently taking?

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LIVE BY DESIGN | The evolving role of grandparents: From storytellers to tech-savvy mentors

Sunday, 28 July 2024, is South Africa’s day to celebrate grandparents – so I am informed by the SPAR Digital magazine that pops up in my email inbox. Grandparents’ Day: I did not know there was one. I am curious.

I discovered many countries have National Grandparents’ Day, but no international date exists. Mexico chose 28 August. Former American president Jimmy Carter introduced Grandparents’ Day in 1978, the first Sunday after the country’s Labour Day holiday, making this year’s commemoration fall on 8 September.

We have Mother’s Day and Father’s Day celebrations – what is distinctive about the role of grandparents in our lives? I did not have grandparents as an active presence in my life: my father’s parents died before I was born, and my mother’s parents lived in another country. We spent a holiday with them when I was nine years old. Soon after, my Oupa died, and I saw my Ouma twice more, decades apart, before she too died. I cannot say I had a relationship with any of my grandparents.

More frequent travel and the transformation of communication have reduced some of the challenges of long-distance and changed things for the next generation. My children saw their grandparents every other year, and telephonic contact eventually became audiovisual. We first used Skype and then WhatsApp video or FaceTime. Friends of mine whose daughter lives in the USA interact almost daily with their granddaughter.

As a child, you will never experience your parents as their grandchildren experience them. Some grandparents indeed take on a full parenting role – but for most grandparents, it is a very different relationship. Three generations rarely share the same house, and migration commonly means that the young family lives in a different city or even a different country.

While time spent together is irregular, I have observed relationships evolving between child and grandparent that are formative and deeply meaningful. When my mother died, I hosted an extended family gathering. In the invitation, I asked if everyone could choose one of their favourite stories about my mother that they were willing to share.

It was the stories that the grandchildren told that I savoured the most. They knew my mother in an entirely different way than her three children. They did not know her as the strict taskmaster who divided up the house and would not let you go out to play unless the chores were done, who insisted that my two brothers learn to cook and iron. She had famously run her fingers along the tops of the skirting boards to check that the dusting was done correctly.

My children and my brother’s children had activity time with my parents – enjoyable time gardening, sewing, baking and craft activities, and my mother passed down her love of jigsaw puzzles. Last week, I sat having lunch with my niece. She was wearing a newly made gingham checked dress. She noticed two loose threads that she had failed to knot and trim. “Ooops,” she said, “Granny would have picked up on that.”

Grandparents are often chauffeurs and aftercare providers who provide holiday daycare and pass on skills. This work can be physically demanding.

My husband and I have had the gift of five grandchildren being born in the last decade. I swear you do not need to do weight training for good arm muscles if picking up babies and toddlers is part of your life. You also need to be able to get down on the floor easily, especially in that period between sitting and walking. When they are finally bipeds, the ball games, scooters and bicycles begin.

I am currently ploughing my way through Outlive, the book written by Canadian author and physician Peter Attia. I use the word “ploughing” because it is long and hard going for a layperson. It provides technical information in considerable detail. Attia’s approach is that a long life needs quality of life to be truly enjoyable. He begins his book with a story of attending a friend’s mother’s funeral – the quality of life of her last ten years had been poor both physically and mentally.

He wonders what he will die of and discusses what he refers to as the four horsemen of death: cardiovascular disease, diabetes, cancer, and neuro-degenerative diseases. His advocacy is about how we take care of ourselves in the early decades of our lives as an investment in longevity and quality of life in our elderhood.

The Einstein quote, “Begin with the end in mind,” is uppermost in my mind and requires living by design. Until I read Attia’s Outlive, I had not quite realised how much it mattered to start young by investing in how you want to be when you are old: exercise, eating mindfully, sleep and meditation. Prevention is better than cure. Here we are again.

I guess the secret to motivation is that you need to want something enough to give you support to resist overindulging in delicious, unhealthy food. I can easily become a couch potato, especially in the winter months.

But I want my grandchildren to have stories to tell about me at whatever family gathering that might be held when I have died. It is legacy work for me and requires intentionality. I plan my time and finances to be able to travel. But I also need to be fit enough to do the fun stuff.

My question to you is: How do you imagine your elderliness? What investments are you making now to make that dream come true?

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LIVE BY DESIGN | When does legacy include proactively handing over the baton?

Helena Dolny and I co-founded Love Legacy Dignity (LLD) in 2019 with an agreement that she would lead, and I would support for the first five years. In early 2023 we further agreed that 29 February 2024, the end of the financial year, would be the day of the official handover.

Helena has dedicated thousands of hours and years of work to Love Legacy Dignity. She wrote her book Before Forever After. She developed the tens of the handouts we distribute when people do our bi-annual flagship programme, Live By Design – Finish Strong.

She accomplished other notable achievements – but LLD is her soul-fulfilling work. She has, however, been clear from the outset of our collaboration that legacy is not just about your lifetime work but also about ensuring that you cultivate others. Such individuals will not only continue your legacy but also further enhance the work initiated.

This year, I am proud to say, I officially assumed responsibility for leadership and managing the affairs of the organisation.

Creating legacy with succession planning and mentoring is a philosophical approach that I aspire to embody as my brand in my professional life. It makes such sense to me. In a couple of decades, I hope to approach elderhood with a clear lineage of people whose lives I have positively contributed to and who are ready to take over the reins.

This week, we celebrated Mandela Day. Revered globally for his transformative leadership and selfless dedication to the betterment of society, Nelson Mandela serves as an inspirational example of knowing when to step down from power. He was 75 at the time of his inauguration. After one term as president of South Africa, Mandela made the conscious decision to gracefully exit the political stage, paving the way for a new generation of leaders to continue the work he had started.

The lessons that Joe Biden could learn from Mandela’s decision are profound. By choosing to leave office after one term, Mandela cemented his legacy as a statesman committed to democracy, unity and progress. His departure at the right time ensured a smooth transition of power and allowed for fresh perspectives to shape the future of the nation.

The median age of USA presidents, at the time of their inauguration, is currently 55. I am therefore astounded as I watch the Republicans and Democrats in the USA both put forward elderly presidential candidates. Joe Biden is 81 and Donald Trump, 78.

What has happened in the last four years that neither party has created a younger tier of leadership from which a nominee can emerge? How can succession planning have failed so miserably? Isn’t it appalling that both elders pursued such a relentless quest for personal power that the parties’ succession planning was relegated?

In the past few weeks, the American presidency has been marred by controversy, confusion and concern. President Biden’s leadership capabilities have come under scrutiny. From policy mis-pronouncement to public gaffes, there are growing signs that President Biden may not be operating at his peak efficiency. Introducing the president of Ukraine, Volodymyr Zelensky, standing next to him, as President Putin can be dismissed as a slip of the tongue, after all, it happens to the best of us. However, referring to Vice-President Kamala Harris as Vice-President Trump suggests a deeper problem. Biden has been mixing up European leaders, creating confusion and concern about his grasp on a number of international issues.

As of Friday evening, with less than four months to election day on 5 November, the evidently unfit US president remained resolute in his decision to continue his presidential race. Even when figures like Nancy Pelosi are urging Biden to withdraw, he adamantly insists that he is the only person who can defeat Donald Trump.

He joins leaders like Robert Mugabe, Vladimir Putin and Paul Kagame who have also exemplified the belief that only they can lead.

In the wake of Mandela Day, as we commemorate the legacy of a great leader who knew when to pass the baton, it serves as a reminder that the highest office is a position of service rather than personal ambition. President Biden has the opportunity to reflect on Mandela’s wisdom and make a decision that prioritises the greater good over individual interests.

In contrast, President Biden’s reluctance to acknowledge his limitations and consider stepping down raises concerns. By clinging to power despite evident signs of decline, there is a risk of tarnishing his legacy and undermining the progress that could be achieved with new leadership at the helm.

Sadly, it seems possible that Biden will live on in peoples’ memories as that old man who failed to cultivate younger leaders, and who refused to step down when his visible frailties damaged the 2024 democratic election campaign. His legacy and dignity are both in danger.

I am wondering how this column might resonate for our readers. I am hoping it will prompt appropriate personal reflection. I was fortunate that Helena has always prized succession planning as a goal in every leadership role she has held.

Love Legacy Dignity.

Love – being at peace with our relationships.

Legacy – living and working with clear intention, especially the handover.

Dignity – that we make decisions that safeguard our well-being. This is the trinity that we hope will prevail as we promote life-affirming conversations about mortality.

This situation prompts reflection on the importance of legacy and knowing when to leave the highest office at the right time. Mandela Day, celebrated around the world this week, offers a poignant moment to draw parallels between the leadership decisions of historical figures like Nelson Mandela and the current predicament of President Biden.

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LIVE BY DESIGN | How can we best respond when a dozen primary school children die in a road accident?

A minibus full of primary school children. Imagine the energy and noise levels as they chat, laugh and/or quarrel as they ride to school. A bakkie hits their vehicle from behind. The minibus overturns and bursts into flames. The driver and 12 of the children die.

Condolences are sent to the families. People try to find ways, practical and emotional, to support the grieving families and soothe their own sorrow. Parents, siblings, friends, relatives, peers, teachers, medical staff, neighbours – so many people affected.

Yes, there will be an investigation checking roadworthiness, whether or not the minibus was overloaded, and whether seat belts were in use. The outcome might help prevent more such accidents in the future, but none of these actions will bring back to life the children whose families are devastated.

As parents, we do not expect to bury our children. We are meant to give our children roots to grow and wings to fly, and eventually, when our time of elderliness comes, they will bury us.

But grief is neither quantitative nor timebound. I noticed that the reports highlight the family that had four cousins traveling together on that ill-fated minibus. Another parent may have lost their only child, whom they conceived after years of trying.

The mantra of grief expert David Kessler is that “grief is as unique as our fingerprints”. Kessler also advises that some people might appear to take grief in their stride and recalibrate their lives in just a few months, whereas the timeline may be a couple of years, if not longer, for others.

I expect the social work counsellors are visiting all the Merafong families – those who lost a child as well as those whose children survived. Survivor guilt is a phenomenon that children can experience too, not just adults.

What is to be learnt from experts about living with grief? Do we surrender? What can we best do to support those grieving?

Dr Lucy Hone wrote her book, Resilient Grieving, after her 12-year-old daughter, Abi, was killed by a driver who failed to stop. Her best friend, Ella, and best friend’s mother, Sally, also lost their lives.

Hone writes of the advice given to her by social workers who paid home visits and who meant well. She and her husband were advised that the next five years would be the worst of their lives, and that the divorce rates for couples who have lost a child are extremely high, as relationships do not survive the trauma easily.

Hone, whose postgraduate research was on returning war veterans and which factors influence their resilience, decided to apply her research findings to herself. She had identified three strategies common to those whom she assessed as the most resilient; those best able to recover from trauma, tragedy and grief.

  • One: Acceptance. This means not fighting, not resenting what happened, but accepting that it has. Yes, it’s awful. Nothing can change the facts. Make peace with the fact that bad things can happen.
  • Two: Gratitude. What is ongoing in your life that your value, which gives you joy? Notice it. Celebrate it. Hone put up a notice board in her kitchen for family members to write down good things that happened.
  • Three: Notice if what you are doing is helping or harming you. If you spend every night looking at photos that makes you cry – is it helping or harming? Yes, you want to immerse yourself in loving memories, but maybe not every night?

 

What would I aspire to put into practice for my children if I were the parent who had lost a child?

  • Create a memory box: What clothes, books, soft toys, drawings do you have that are part of your and their sibling(s) memories?
  • Sharing stories: These I would write down afterward (but sooner rather than later) because later we might feel sad if memory fades and we cannot remember the details. But the talking is important. There are people who live with grief that they were not able to talk about “my sister died; my mother packed her things and we were not allowed to talk about her. It was as though she never existed.”
  • Drawing: Not all of us are good at talking our feelings aloud. Sometime its easier to draw and express ourselves on paper with colour and imagery, not words.
  • Create memory occasions: My child’s birthday, the anniversary of death as well as celebrating them on 1 November, when I try to celebrate and honour all those who I have loved who have passed.

 

Finally for myself, for my husband, for my remaining children and for the life I am still to live I would tell myself:

  • Choose life: “Do not lose what you have to what you have lost.”

 

I would remind myself daily of Hone’s words reminding herself that she had given birth to three children, and while Abi had died, Hone was still a mother to two teenage boys who needed their parent.

It is much easier said than done. The hurdles of many firsts lie ahead. The surviving children will go back to school for the first time without their deceased playmates. That will be hard. Every bereaved family will start to live through all the inevitable calendar firsts: The first birthday, the first religious festival … There are also the pop-up firsts, the one’s you don’t know will side-wipe you until they do – laying table to supper and there’s an empty chair, grocery shopping and reaching for the favoured Frosties, only to put back the box when it hits you that your child is no more.

There’s comfort in collective mourning. It is important that grief is publicly acknowledged and witnessed. In March, on the Easter weekend, a bus crash in Limpopo killed 44 Botswana nationals who had been travelling to an Easter pilgrimage of the Zion Christian Church. Five thousand people gathered to attend the mass funeral, including dignitaries, acknowledging the pain of the tragedy.

Let us hope that the grieving families of the 12 children who died this week will find comfort from the condolences and support they are offered.

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LIVE BY DESIGN | Reopening old wounds to inspire the current generation

In a delicate dance between enduring grief and historical preservation, earlier this year, I embarked on a poignant journey to weave together the untold stories of the Soweto Uprising of 16 June 1976. Through the lens of lesser-known relatives of the 43 children whose tragic demise catalysed one of the most pivotal protests in the annals of South African history, we were able to delve into a story often overlooked but profoundly impactful.

The brief from the client (Nedbank and Joe Public) was simple yet thoughtful: “Despite the indelible mark left by the ’76 youthful martyrs, it became apparent that their names and sacrifices had regrettably begun to fade from the collective consciousness of today’s generation. In an endeavour to honour the legacy of the Class of ’76, we want to inscribe their names on school honour boards, breathing new life into their enduring contributions.”

Thus commenced a poignant journey as we sensitively approached parents and relatives, now in their twilight years, urging them to revisit the harrowing events of 1976. It was a process that inevitably reopened old wounds yet provided a poignant avenue to ensure that the memory of their loved ones would forever endure.

Preserving important documents and memories of the victims, such as birth certificates and photographs, is significant in the healing journey of the grieving families for several reasons:

1. By preserving these documents and memories, families can honour the memory of their loved ones they lost. It serves to keep their legacy alive and ensure they are not forgotten.

2. These items serve as tangible connections to the past and to the lives of the victims. They provide a sense of continuity and help families feel connected to their loved ones, even in their absence.

3. Having these documents and memories can aid in the grieving process by providing concrete reminders of the individuals who were lost. They can evoke emotions and memories that are important for processing grief.

4. Birth certificates and photographs are part of a person’s identity. Preserving these items can help families maintain a sense of identity for the victims and can contribute to a deeper understanding of who they were.

5. These documents and memories hold historical significance not just for the families but also for future generations. They provide a window into the past and help preserve the stories and experiences of those who came before.

6. For some families, preserving these documents and memories can be a way of finding closure or a sense of peace. It can provide a way to process the loss and come to terms with losing a loved one.

 

In the end, we profiled 10 families and these documents were digitised for schools. Despite the passage of time, their grief had never truly faded. Tears flowed, not only from the sorrow of loss but also from contemplation of what could have been.

They wondered about the futures that their children might have had, and the impact they could have made on their families and society. Concerns about the current state of South Africa, particularly the scourge of drugs among the youth in Soweto and other townships, weighed heavily on their hearts.

This column is a tribute to the 10 families who bravely reopened their wounds for the betterment of future generations. We honour their selfless sharing of their grief, loss, and enduring strength. Through their willingness to revisit painful memories, these families have imparted invaluable lessons to current and future school children, fostering empathy, resilience, and a deeper understanding of the human experience.

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LIVE BY DESIGN | Have you ever thought of death as a blessing?

My mother was comatose in hospital for less than two weeks. My father, whom I loathed, was in and out of hospital as an outpatient for two years, for which I covered the transport fees of R1 000 per visit. The hospital, KwaCeza, is 60km from home. When death was approaching, he was hospitalised and succumbed to his ailments in less than two weeks.

I was relieved he died sooner rather than later. He had shown advanced mental confusion and was unable to live peacefully with the grandchildren, his only companions after losing his wife and his children, who are all married and live elsewhere.

My mum died too soon in my opinion; she was still able to walk and run errands. However, she stood no chance against Covid-19, especially with her underlying condition of uncontrolled type 2 diabetes, despite being on the government’s chronic medication scheme. She lived a simple life in the impoverished north of KwaZulu-Natal, in Ulundi, eNewland village near Mkhazane.

For many years, she lived off the land, ploughing mealies in summer and vegetables in winter. She was always bubbly and busy, epitomising the saying, “the early bird catches the worm”. Although still active, she was no longer able to plough the fields. I feared the worst as old age ravaged her body. I loved my mother dearly. I still believe she is my most enthusiastic ancestor, alongside my trusted ally, my maternal grandmother uMaShandu. Somehow, I am glad she was spared prolonged pain and anguish for both her sake and mine.

I shudder to think how my parents, or anyone for that matter, would have coped when they needed assistance with daily living, including navigating the tough terrain for toilet routines, which involved using a pit latrine 500m away from the nearest hut. How would they have managed to fetch water? Who would have borne the financial and emotional cost of this care?

My relief that my parents died when they did is for three reasons.

First, I did not have to confront the reality of my parents living at home alone or with hired help. In rural areas like Ulundi there are no homes for the elderly with high-care facilities. My parents would not have left their humble home of their own accord, even if I had the facilities and financial resources. So, I neither had access to facilities nor the money to pay for them.

Secondly, I do not have the emotional resources to support anyone in prolonged distress without threatening my mental health. I have lived with major depression and have been on medication for over 20 years. Any minor change in my emotional state can set me back five years.

Thirdly, my parents lived in a village that had no access to intensive care or high-care facilities at the nearest hospital, Nkonjeni. Although, by the time my father died, we had found a functioning government hospital, KwaCeza, I doubt they had an ICU. Even if they did, current government regulations require an ambulance to convey any patient in distress to the nearest hospital, which in this case was the death trap Nkonjeni.

I have become aware of how different the dying experience can be, especially when the end involves hospitalisation. This week, I heard a harrowing tale from a former colleague whose father is in and out of the intensive care unit. The lives of my colleague and her siblings have come to a standstill. They cannot hasten the end of their beloved father’s life, yet they all know that the end is near.

This experience underscores the importance of having difficult conversations about end-of-life care and the need for compassionate policies that consider both the dying and the living.

Being caught between the dying and living zones of a parent takes an immense emotional toll, regardless of one’s financial resources or access to private or public healthcare.

Watching a loved one lose their independence and dignity is a painful experience, and I am grateful my parents were spared this fate. Therefore, I am thankful that my parents did not have to endure a prolonged and undignified decline. Their passing was a mercy compared to the alternative.

As a society, we must confront the necessity of assisted dying, not only for the sake of the dying but also for the sake of the living. We, the living, cling to the notion that the deceased are spared pain, yet the truth is we are not so sure about the complexities of the afterlife. Our focus must be on the living, for we know the pain and anguish.

Mncube is a finalist for this year’s Standard Bank Sikuvile Journalism Awards. He won the regional award at the 2020 Vodacom Journalist of the Year Awards. His latest work, The Ramaphosa Chronicles, is now available for purchase here.

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LIVE BY DESIGN | Fatherhood: What’s the legacy you aspire to leave your children with?

Father’s Day is being marketed this week. My devices are full of adverts for what could be “the perfect gift.” The airwaves carry adverts encouraging us to celebrate fathers, stepfathers, grandfathers and fathers-to-be.

It is a simple celebration for me. I had a dad. When he wasn’t working overtime shifts at the factory on Tuesday and Wednesday evenings and Saturday mornings he was very present. He did a lot of DIY tasks around the house and I was his shadow and learnt some skills that have stood me in good stead in my adult life. In womanhood, his patriarchy offended me – “Now I’m really a grandfather,” he exclaimed when a boy grandchild was born – the third grandchild – the first two were girls.

I didn’t let it go, but asked, as the mother of one of the girls, “How do you think that makes me feel?” I forgave him for his patriarchy; he was, simply, unquestioningly repeating the social norms of his generation. What is more important to me was that I grew up feeling loved and cared for.

 

In terms of “Living by design” how do you want to be remembered as a father? What implications does that have for time and money?

A client of mine works in a town that is a three-hour drive from the family residence. Four nights a week he is not home. Much of the weekend is spent relaxing in front of the television and then on Sunday evenings he opens his laptop to be on top of things for the week ahead. In conversation, he revealed that he is troubled about the quality of his relationship with his children – he is not feeling connected enough – he feels that he is seen as the ATM – the parent his children go to when they want money for something.

We discussed intentionality, our way of living with the end in mind, and that if he aspired to a different quality of relationship then his weekends needed a redesign. What could he do with his children that would contribute to memory-making and, hopefully, significantly modify the quality of their relationship? I’m curious as to what he’ll try.

I understand I was one of the lucky children – others are less fortunate. There are many children who grow up not knowing their fathers, are afraid of them or, even worse, they are abused. This Sunday will not be a day for them to celebrate their fathers – hopefully, they can mark the day as another of having survived what their family of origin offered to them.

And what about the complications of when you either do not know your father or you have two of them, a stepfather and a biological father. Who will represent you during rites of passage occasions?

In 2023 when the Johannesburg inner city held its annual artists’ studio open day I was drawn to a print, “Ozimelayo“, created by Molefe Thwala oa Makhele. The image created is of two feet in a pose which suggests the person is standing. I was curious and Molefe explained this work as an outcome of his exploring identity and self-awareness.

“I am born of two men. Thwala, the man whose surname I bear and carry – a proud Nguni and a great man, my stepfather. Makhele, the man whose genes I carry, with historical ties to Basotho, my biological father. Traditionally, as an African man there are rites of passage and responsibilities I have and they stem from my father, his father, his father before that, etc. With limited or no representation, who and what I am becomes problematic because I cannot be properly represented in our family’s umsamo (altar). In dealing with my frustrations, I thought, I will represent myself, I will do this myself: ‘Ozimelayo – the one who stands up for or represents themselves, as one would in a court of law.'”

My colleague Mapi never knew her biological father. She was a much-loved child. Her mother, Busisiwe, once broached the subject and suggested that father and child might meet. It didn’t happen, Mapi wasn’t interested; and then when she was, it was too late, her father had passed.

Mapi tells me of the presence of a truly wonderful man who was present in her childhood, who her mother treated as a son, who was the MC and spoke at her mother’s funeral. Mapi tells me that whenever she needs representation in family matters, any rites of passage discussions, that her mother designated this person to stand for her.

Biological or non-biological – what matters most?

Another friend of mine who never got on with her biological father speaks fondly of her godfather, and how important it was that she had the positive male anchor.

Therapists tell us that what matters most is that we are loved (the biological relationships notwithstanding) and that we are nurtured to become wholesome adults. What matters most is that when we, in turn, choose to become parents we’re thoughtful in living our lives as parents and what we want our children to experience of us.

As important, if not more important, as creating the material conditions will be the time spent together as parent and child, creating those opportunities for memory-making. Memory-making doesn’t necessarily cost money, being dad’s DIY helper is likely to be a source of warm memories in years to come – as precious as any gift or holiday.

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LIVE BY DESIGN | What kind of cog in the wheel of history are you choosing to become?

Last month, we marked 30 years since our first democratic elections. I cannot help but think about my late husband, Joe Slovo. As 23 May approaches, his birthday is approaching, and a trip to Avalon Cemetery is in my diary. And then there will be 29 May Election Day—people asking each other, who will you vote for and why?

Denver, the handyman, arrives with his son to fix my windows. Among the family photographs, he notices some of Joe with Madiba, Alfred Nzo, Chris Hani, and Cyril Ramaphosa. Unsolicited, he comments: “That was a different ANC than the one we have now. Corruption has destroyed that ANC.”

As they leave, I ask the young man if he will take over his father’s business. The son answers proudly that he will ace his matric exams this year and aspires to be a lawyer. His father comments that under apartheid, his parents were removed to Mitchells Plain, and in the last 30 years, he has worked hard to get back to Lansdowne. He has also been able to make sure that his son has gone to good schools to get a better education than he had access to. He hopes his son will have that better life, although he reflects on the disadvantages of being classified as coloured and of not being considered black enough. I listen to Denver – the cadence of his gentle voice. He is calm, composed, and articulate; his demeanour is of a man at peace with himself and how he is living his life.

I had a coaching client five years ago, a woman in her mid-50s. In her 40s, she had been a high-powered executive in the entertainment industry. She was inching her way forward after a double trauma of illness and divorce. She said: “I want another slice of a BIG life.” She liked the power, the glitz, the money, the champagne. Her desires fed dissatisfaction and fuelled both her ambition and avarice.

She and Denver must be around the same age. Of the two, Denver is the one anchored in himself, his fatherhood, his community, and his country.

Next week, I will be teaching a session on personal leadership. My starting point is always that each of us is the leader of our own life in each role we execute.

My friend and one-time mentor, Nancy Kline, tells a story of when she was a young teacher. She found herself in a tricky situation. My recollection is that the parents of her students had raised an issue with a novel that she had recommended the students read. The principal listened to her story, and when she finished, he told her, “Whatever happens, remember that your students are learning you.” That phrase, “your students are learning you”, has been one of her north stars ever since.

Every parent is a role model to their child. Sociologists and therapists write of how many parents often struggle to break the negative patterns of their childhoods—the child who grew up with an abusive parent finding themselves in a relationship with an abusive partner.

How many of us find ourselves in a supervisory role, however big or small: the chair of a committee, a team leader in a business unit, an entrepreneur paying employees every month and sharply aware of performance. In each of those positions, there is the choice of leadership style.

What level of consultation is appropriate? When is it that you simply give an instruction? How open are you to other points of view? How aware are you of the balance between how much appreciation you offer versus how often you criticise? (The Heartmath Institute and John Gottman’s research shows how powerful the amygdala is and how much more positive reinforcement we need to balance how badly criticism makes us feel and squashes our self-confidence.) The studies tell us that acts of kindness are the foundation of long-lasting relationships.

It takes strong doses of reflection to nurture self-awareness and intentionality to shape your life and the relationships that hold your life together with integrity. To lead yourself and with resonance, holding true to the role to the role model you want to be, can be quite a quest.

I am surprised to find Kate Middleton, the Princess of Wales, as my possible case study for students to consider. What might such a person of privilege have to offer? On the airport magazine rack, I spotted a Town & Country special issue, “KATE: Grace Under Pressure,” and curiosity drove my purchase.

The profile’s perspective is that Kate understands that her position in the world influences many people, and she takes this responsibility seriously. In her public engagement with the world, she increasingly accepts that she cannot be carefree or careless. Just consider how her photo-editing of a family snapshot got her into hot water! The magazine’s special issue looks at how Kate is choosing to raise her children, making sure they spend time outdoors, the way she involves grandparents, how the Princess of Wales has chosen to speak about her cancer, the vulnerability she allows herself to show when she describes how hard it was to talk with her young children about her illness, and last but not least, the careful selection of which charities she supports. The Kate we get sight of is the epitome of intentionality.

My questions to you are: “When people talk about you, what do you hope will be said?” Are you surprised with what people say as to how they experience you? Or have you successfully lived by design and shaped their narrative? My perspective is that we are cogs in the wheel of history, and what matters most is not the size of our lives but the integrity and intentionality of how we choose to lead ourselves as we live.

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