In this deeply personal and poignant account, R.W. Johnson shares the harrowing journey of supporting his younger sister, Helen, in her decision to seek assisted dying in Zurich amidst the relentless agony of alpha antitrypsin deficiency. Through vivid storytelling, Johnson recounts his battles with bureaucratic inefficiency, the emotional toll of fulfilling Helen’s final wishes, and the intimate family dynamics surrounding this heart-wrenching chapter. As the UK takes historic steps toward legalizing assisted dying, Johnson reflects on the profound ethical dilemmas and enduring memories of love, loss, and the human right to choose. A must-read for anyone grappling with the complexities of life, death, and autonomy.
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By R.W. Johnson
___STEADY_PAYWALL___
My elder sister, Francesca, began to experience breathing difficulties in her late fifties but no doctor could tell her why. She moved away from London – too much pollution – to a village in France where the air was cleaner. Her difficulties continued. Only after several years did she obtain a diagnosis: she suffered from alpha antitrypsin deficiency (AATD). As far as I can understand it, alpha antitrypsin is a substance which coats one’s lungs and helps filter out impurities such as smoke. A deficiency thus allows those impurities to get right through and do maximum damage. The sufferer ultimately dies an unpleasant death through emphysema.
Francesca contacted me as soon as she had the diagnosis and warned me that the deficiency was often a familial trait and that I should get myself tested. I went along to a pulmonologist here in Cape Town, telling him that I had a persistent cough and that I wondered if I had AATD. He pooh-poohed this, saying it was most unlikely for it was not a common condition, but he tested me nonetheless and, to his surprise, found that I was indeed deficient though only by 1%-2% which he considered unimportant. Real sufferers were 30% or 40% deficient or even more.
Francesca’s condition continued to worsen. She became dependent on oxygen cylinders. Finally she went into hospital, announcing firmly that she wouldn’t be coming back. She died in February 2011, aged 68. My mother, who lived to 92, thus had the awful experience of seeing her first child die and confided to me not long after that she thought my much younger sister, Helen, also had not long to live. For Helen – the fourth child – had begun to show similar symptoms and it became clear that she too was badly afflicted. Like Francesca (and me) she had been a smoker when younger and this had hardly helped. There had been six children in our family and three of us – Francesca, Helen and me – had been red haired with blue eyes and pale skin. None of the other three children suffered from AATD but all three of the redheads did, though the two girls far more seriously so: in some magical way the male chromosone had protected me. Such are the flukes governing life and death.
Helen’s condition continued to worsen and she too became dependent on oxygen cylinders to breathe. Indeed, her situation was worse than Francesca’s for by early 2016 she was still only 58 and yet clearly near the end. At which point she wrote to her four brothers, saying that she dreaded a painful and frightening death by emphysema and wished to go to Zurich where Dignitas would help her to die peacefully. Would we help ? Someone would need to drive her to Zurich from Birmingham. The problem was that in English law helping to assist a suicide carries heavy penalties. I wrote back immediately saying I would do whatever was required. I knew Helen was an extremely determined woman, that she wouldn’t have made this decision without a lot of thought, and that the last thing she would want was any argument or discussion.
My brothers who, unlike me, all live in England, were considerably less sure. Two of them immediately removed themselves from participation, saying that for professional reasons they could not risk falling foul of the law. At which point I went online and saw that some two thousand British people had made the trip to Zurich to seek euthanasia through Dignitas, that the Crown Prosecution Service had opened only eight cases in connection with this and not proceeded with prosecution in any case. Helen presumably had the same information and showed a degree of irritation with anyone who tried to suggest to her that British hospitals would doubtless ensure that the would not suffer unnecessarily. Helen had always been an extremely determined (some would say “difficult”) woman so part of the reason may have been just that she saw this as purely her own decision, one not open to debate – she had apparently decided on Dignitas at quite an early stage of her illness. But it was impossible not to sympathize. She found everyday life to be merely a procession of unpleasant and undignified procedures and events: there was no pleasure in it. When I spoke to her on the phone she would become exhausted after only a few sentences. And she knew that things were bound only to get worse.
However, Dignitas was very Swiss in its determination that every possible bit of documentation is in place and one of the requirements was for an unabridged birth certificate. Helen informed me that she had never had one, had always managed without, and asked me please to get a copy of hers for her. Helen had been born in Durban in 1957 shortly after my family had arrived there. Since I live in Cape Town it was obvious that acquiring the birth certificate was my job. Had she made such a request up to 1994, there would have been little difficulty. The apartheid-era civil service was reasonably efficient and seldom corrupt. Once the ANC took over in 1994 the civil service rapidly became extremely corrupt and hopelessly inefficient. Trying to coax it to deliver a document for a white woman born nearly sixty years ago who had long since ceased to live in the country, might well be an impossible ask.
I drove into central Cape Town to the Department of Home Affairs. I had been warned that in order to ensure a reasonable place in the queue it was best to arrive by 6 a.m. In fact even at that hour there was already quite a queue. I stood awkwardly for two hours, not an easy thing given that I have only one leg and walk on a prosthesis. Drunken street people – revellers from the night before – tried to work the queue for the price of another drink, bursting into obscenities when they met with refusal.
Finally, at 8 a.m. we were allowed in – which meant a steep climb up an extremely difficult entrance. Inside it was bedlam as enormous numbers of people flooded in. I queued again once I found the right desk and finally got the application forms to apply for the birth certificate. Then another queue, this time to pay a fee for the process. The queue for the cashier did not move in forty minutes and I finally discovered that the electronic till had broken down and the cashier had disappeared. I drifted away, realising that I would have to come again. The next day I managed to pay though this time the lifts did not work so I had to clamber slowly up the stairs to the second floor. (I do stairs alright but they require some effort.) I was told that I must now wait six weeks for head office in Pretoria to respond to my request.
Helen e-mailed me almost every day, asking for progress reports – she was desperately hoping for an early response. It was difficult to have to tell her of what sort of Third World bureaucracy I was dealing with. Every time I went to Home Affairs something else had broken down – the phones, the computers, the lifts, whatever. I did not want to tell her what I feared, which was that we would never get the certificate. Meanwhile she had found a weather station site on Table Mountain on the internet from which she could survey what sort of weather I was having. We discussed all manner of subjects of interest or humour, wholly unconnected with Helen’s situation. This we never discussed.
After six weeks I returned to Home Affairs. Nobody knew anything about my request, let alone what had happened to it. I was told to come back later. After two weeks I returned, with a similar result. However, by dint of a little charm and some determined negotiation I learned that the lady really dealing with my request, Margaret, was on the second floor in an office I was forbidden to enter. I got to her office, forced my way in and was confronted by a rather attractive but extremely stern-faced African woman (Margaret) who demanded that I go through the correct procedures, ie. leave her office. I stayed and put my case and she softened enough to say she would query Pretoria as to what was happening. When I told Helen she immediately began to say all manner of nice things about Margaret, delighted that I had made this human contact. As always, she reminded me how desperate she was to bring the matter to a speedy conclusion. I tried, as gently as I could, to tell her that the phrase “African bureaucracy” was an oxymoron, that I was not confident of any conclusion, let alone a speedy one.
After a while I got used to eluding the police guard on Margaret’s office and getting in to ask her how things were going. This never produced any result but Margaret became much less stern. She was actually an extremely nice Xhosa woman of maybe 40, and her assistant, Lucy, also proved helpful. They allowed me to scan through their computers to look at the progress of my request. After a while Margaret confided that she had several times queried Pretoria on my behalf and was very dissatisfied with the silence she met. I managed to get Margaret’s phone number and e-mail and she promised to be in touch the minute she heard anything.
At which point my wife and I departed on a long-planned holiday in California. I felt dreadful at this intrusion of ordinary life and the minute we returned I again went into Home Affairs. Lucy triumphantly showed me a piece of paper recording Helen’s birth. I embraced her and hastened to courier this to Helen, who was over the moon at this result. However, within a week she told me that Dignitas had turned it down: it was not an unabridged birth certificate and did not have the right format. It was instead some hybrid known merely as a “record of birth”. Crestfallen, I returned to Margaret and Lucy to explain I needed the real thing, nothing less.
Helen remained extremely pressing. Mainly to placate her I made several more trips to Home Affairs. Each time I reported she would find a reason as to why I should return there within 48 hours. I began to feel a bit bullied but in practice it was impossible to argue. After an age Margaret finally turned to me and said look, this is not working. You had better phone the head guy in Pretoria. This is his name and here’s his number. I phoned and met a stone wall. So I kept phoning and after a while got through to the Big Man’s No.2 who indignantly asked what I was on about ? I told him. Within a week Lucy phoned me and told me she had the birth certificate. I raced in, hugged her and explained that I had brought presents for her and Margaret. She said no, they were strictly not allowed to accept any such gift (there have been too many corruption scandals). I was unable to make any further impression, though I felt deeply grateful. I couriered the certificate to Helen immediately. She was thrilled and by internet she monitored its progress by DHL on its way to her. All told, I had made 22 trips to Home Affairs.
With that, preparations for the trip to Zurich could be made. Helen’s partner, Jim, and my brother, Philip, had arranged to drive her there. I offered my services but was told that there just wouldn’t be room for me in the car, what with three people, luggage and Helen’s oxygen cylinders and other special needs. I was simply surplus to requirements. Another brother, Henry, decided he would fly to Zurich to “see Helen off”. Helen asked whether I wouldn’t like to fly there myself for similar reasons. I thought about it but decided that I had done all I could. Also, I was squeamish. The idea of watching my little sister put down like a cat or dog was simply very uncomfortable. I still feel guilty both about that and about not making the trip. Henry wisely said, well, you’ll feel guilty if you don’t go and guilty if you do.
Jim texted me from Zurich. Did I have any final message for Helen ? I hurriedly composed a text which Jim said he read out to her with only minutes to go. Our long and intense communication over the business of the birth certificate meant that Helen and I were closer at the end than we had been for years. What I felt, overwhelmingly, was the unfairness of my outliving her. But that was not a conversation that either of us wanted to initiate.
Henry later wrote me a long and carefully factual email about the end. It had been pretty awful, I think. But the key thing was that Helen had to assent before they would press the button which ended her life.
Henry said that he found the whole experience profoundly saddening and depressing – “rather like attending one’s own funeral”. I passed on his email to my daughter, Rebecca. She disagreed. I must think of it, she wrote, as being “like the heroine of Crouching Tiger, Hidden Dragon when she jumps off the mountain into the clouds, into the void. She is free and alive and almost ecstatic in that moment”. That is perhaps a better way of thinking about it. From our long correspondence I know how Helen longed to be free of being short of breath, free of all the constraints, of not being able to go out, not able to look after herself; free of the oxygen cylinders and most of all, free from the dread of a protracted and painful death.
A few days later my brothers sent me photos of the place where Helen’s ashes were scattered, a beautiful spot overlooking Gloucester. For Helen, like any child of the Cotswolds, had always thought the view over those rolling valleys to the magnificent spire of Gloucester cathedral was the most beautiful thing there is. There was a sense of an ending. Now, though, the British Parliament has voted in favour of assisted dying. At least what I did is no longer going to be illegal. But having done what I did I realised that had I been an MP, I would have had to vote YES.
There is, though, no ending for me. For me Helen is, irretrievably, a little girl coming back from nursery school in Durban singing Afrikaans nursery rhymes and then a lovely little sister, setting off for her primary school, a blaze of red hair and a freckled skin, still singing her nursery songs amidst the gorgeous tropical flowers and plants of Durban. On my visits to Durban, as I drive past those schools my mind is always full of her and will be so for as long as I live.
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