More about Helena
Tell us a little about yourself and where did you grow up and what has been your life journey so far.
I grew up as a first generation immigrant in the north of England, the daughter of a Czech mother and Polish father whose teenage lives were disrupted by the second world war. In 1949 they left their displacement camps in West Germany and travelled by ship to England seeking work and a peaceful life. They were Catholic, which meant I grew up in England without knowing any English people. My Catholic school was full of Irish, Italian, and eastern Europeans, like me – the children of immigrants. England, at that time, was a curious post war place: very class conscious but also a progressive education policy which ensured means-tested grants for university. These kinds of policies which create opportunities for all, irrespective of family background, shaped me.
I took a gap year before university and worked as an assistant teacher on a mission station in Zambia I travelled extensively and my return to England was via South Africa and catching a boat – Cape Town to Southampton. The 3 weeks in South Africa changed my life. It was high apartheid which contrasted greatly with the multi-racialism of my life in Zambia. When I got to university I joined all the liberation struggle support organisations, and met and married a South African exile.
I chose to study Agricultural economics because I believed that I would find work that would make a difference to peoples’ lives. I worked with the agricultural cooperative movement in newly independent Mozambique. I did my PhD on Land markets and their relevance to land reform. In post-apartheid South Africa, I became CEO of the Land Bank and led the transformation process to de-racialize the bank (its staffing complement and its product line) and offer loans to people of all races. I got interested in how people change and in 2003 began my training as an executive, leadership and life coach and this has been my paid work ever since.
In 1986 I had married widower Joe Slovo, who was Chief of Staff of the African National Congress’s liberation army. He was on the apartheid hit list and I lived with the fear of being caught in the cross fire. Life felt tenuous and it lead to an everyday appreciation of living in the now, treating every day as precious–and possibly one’s last. This further shaped who I’ve become. There was a lot of death around me. And then when I came with my husband to South Africa after Mandela’s release Joe was diagnosed with cancer and died four years later. Having been familiar with sudden death I now became familiar with dying slowly. Several people around me died in a short space of time and I discovered that I was comfortable sitting with the dying. I accepted this as a gift and as a calling. I took a course in the USA as a Rites of Passage guide and also trained as a Hospice caregiver with the Johannesburg based Wits Hospice Association.
I am passionate about the benefits of people having challenging conversations. My late husband only made his will in the final days of his life, and only then and under pressure from me did he make clear what his funeral preferences were. A week after he died I discovered I had a step-son. Why did that conversation never happen? My daughters might have enjoyed a step-brother in their lives.
In 2009 I started writing a book which I called Let’s talk about Dying. Another working title was “I don’t want to talk about it” because that was what people said when I told them what I was working on. My book was published in 2016 as “Before Forever After: when conversations about living meet questions about dying” In 2018 I registered a social enterprise LoveLegacyDignity. I asked Ngiphiwe Mapi Mhlangu to partner me knowing that we can combine our complimentary backgrounds and skills. Together we are a dynamic duo!
Why do you assert that having these conversations is life-affirming?
I think that’s when we live with the strong presence and awareness of our mortality and the fact that our death could happen anytime then it’s my conviction that we live more consciously and less carelessly. We become more careful about our intentions, what matters most to us, and the state of our relationships at any given moment. So living with the presence of mortality actually heightens the intensity of how we choose to live. It’s a sort of dance between keeping an eye on the long term-whilst being very present in the now. I thought that was the gift that my marriage to Joe offered me –because the fear of his being assassinated was very real. We had to treasure the joy of everyday living.
My mum was bed-ridden for the last five years of her life – I called her dying “the slow fade”. Over time she could do fewer activities but I noticed she was acutely aware and spoke about what gave her joy and what she still wanted from her remaining life.
What makes you want to be a co-founder of LoveLegacyDignity- why does this matter to you?
What motivates me in this work is that there’s a chance to make a difference, a possibility that through this work there could be less suffering.
LOVE. Love is the strongest driver of our lives. And we suffer when loved ones die. It’s the privilege of our being human. And yet my observation is that quite often we suffer even more because certain conversations didn’t ever happen. Certain unresolved issues were never talked about to find a state of peace with the status quo
I’ve watched families conflicted whilst the person is dying, because they are faced with difficult medical decisions, and they are forced to have conversations at a time of being very stressed.
I’ve watched families fight over the funeral and memorial arrangements, which could have been avoided if the deceased had talked about and made clear their wishes.
I’ve watched families end up not talking to one another because of a dispute about who gets what, or what’s to happen to a property that their parents owned.
Grieving is the kind of “swept-off-your-feet” experience that can mean that you may almost not recognise yourself. Emotions are so strong, the pain so deep, it’s hard to be calm, rationale, logical, and gracious. I’ve witnessed that the more thinking and talking that’s happened beforehand about the practical issues, the more it creates the possibility of greater compassion and ease and understanding later.
LEGACY includes our administrative affairs. I’ve witnessed grieving friends having to deal with administrative detritus – administrative issues that the deceased just never bothered to sort out while they were alive and able. And then, in this most tender vulnerable time after death, loved ones, are expected to resolve so much bureaucracy. Love Legacy Dignity offers a free Check List For Checking Out–which reviews everything you need to have in place to make it easier for those you are leaving behind.
DIGNITY: I also feel that we need to take care of owning the right to our personal DIGNITY. We’re outsourcing a lot of end-of-life decisions to medical professionals. It’s time to reclaim more agency, educate ourselves, gain more health-care literacy and become more clear about our own preferences.
‘The doctor does NOT always know best” Doctors were once trained to be “healers of life and easers of death” (The Hippocratic Oath). In the 21st century many doctors seem to have forgotten this second role –they are overly ready to offer just one more intervention, and then another.
I was recently told of a 98-year-old woman with advance dementia who had a heart attack. She had in place a Do Not Resuscitate order. This was ignored and she was successfully resuscitated. Why? Why go against the patient’s wishes? Why spend precious medical resources?
And then after death? Why call for the gurney to whisk the deceased to the mortuary asap? Our forebears had rituals, washing and dressing the person, people coming say their goodbyes, creating a memory table. For me, presencing these rituals is an extension of honouring the dignity of the deceased as well as our own and also offering ways of being with one another that help us accept our loss.
Dying is a rite of passage. We cross a threshold that is as huge psychologically as it is physically. And yet with the modernisation of dying, it’s being increasingly hospitalised, with new life-extending technologies and machines. In that setting it is hard to create what we need spiritually, psychologically, a place of being. Living one’s last days and hours in an environment conducive to crossing the threshold out of this earthly world makes a real difference to all concerned.
What do you want LLD to achieve and what do you see as your unique contribution to making this happen?
I want ordinary people of all walks of life, cultures, race and class to be comfortable to talk about death and life related matters from the earliest age. By that I mean it begins in childhood. What we do with pets that die and the conversations that we have –or not –are already a beginning of creating more ease with these conversations.
I’ve loved giving workshops to students. The question, “Why this topic for us? We’re too young.” disappears the instant that you ask the question who do they know of who’s died suddenly, unexpectedly. It’s rare to find anyone who doesn’t have at least one story.
There are really only two questions that LLD tries to get people to work with. The first is that as its certain that you will die then how is it that you want to live “this one wild and precious life” (Mary Oliver) The second question is that as its certain that you will die then what matters most to you about the choices you’ll be faced with?
LoveLegacyDignity offers an approach that invites you to consider death in a manner that is ultimately life-enhancing.
I’ve spent much of my life facilitating conversations for people to do their own best thinking for themselves and with each other. I spent my twenties working with cooperatives in rural Mozambique –my role as a development economist was to facilitate conversations to finalize the production plan.
In 2005 I completed my Master in Executive Coaching and since then have completed half-a-dozen different coaching programmes (enneagram, ontological, NLP) to deepen and widen my skills. I am a global faculty member of Time To Think and qualified to train and accredit both coaches and facilitators.
When I’m working in conversation with people and I see the lights go on in their minds as they grapple with an issue and come up with their way forward that they feel will work best for them I have such a deep sense of satisfaction. When it is about matters of life and death it is soul work and deeply fulfilling.
People expect these conversations as appropriate for the elderly and the dying- why does LoveLegacyDignity take a strong different point of view about the need to work with everyone.
We don’t know when it is that we’re going to die. When I lived with Joe and he knew he was on the assassination hit list there were certain precautions that he’d take on a daily basis –but he did not then dwell on his fear nervously and anxiously. His view was that you needed a state of readiness for sudden death as a real possibility and then you had to get on with living and get the most out of whatever life was offering to you.
Recently I worked with a couple who have young children. When we did session four, “Sudden Death” I invited them to imagine that they would not return home the next day, that they’d have been wiped out by a road accident. The woman started to cry at the thought of this. Then the realisation set in that they had never thought about guardianship. Who would take care of their two little girls? She regained her composure and began the exploratory conversations about what the best options would be.
Another day I was interviewed on television about the need for legal changes in South Africa on dying with dignity. As the talk show host, a young man, had coffee with me afterwards he told me that he had an Advance Directive and his administrative affairs in order. I asked him what prompted this? He told me the story of his best friend, injured in a car accident, hospitalised in a coma. No Advance Directive or Living Will. In the weeks that followed his friend’s wife depleted their savings, withdrew all the equity from their house bond and by the time she accepted to agree to switch off the life support machine she was a penniless, homeless widow, mother of two. The talk show host vowed to himself that his own wife would never find herself in a similar predicament.
The stumbling block is that too many people think these things happen to others and that somehow it’ll never happen to them.
The challenge for LoveLegacyDignity is to take the work out of middle class suburbia where people have access to medical insurance. It’s going to be interesting how we explore crossing social divides. This is where Mapi’s history and expertise comes to the fore – creating programme content for community radio stations which are widely listened to in townships and rural areas.