Conversations with Sister Paula Brettkelly – A Story about Dying

Issue 24, April 2008

From October 2007 until early May 2008 I have had a number of conversations with Sister Paula Brettkelly about her experience of being terminally ill. Well known in the community for her work in human rights and her advocacy for those living with HIV-AIDS Sister Paula was invested in 2007 as a member of the New Zealand Order of Merit for Services to Human Rights.

Michael: Paula thank you for taking time to reflect on the experience of being terminally ill and for talking to our readers about what your experience of dying, or rather living, at the end of life is like.

Paula: I am very happy to talk about my experience because I believe my journey with cancer can help others, especially those without a faith. Talking about it also helps my faith journey so these conversations are mutually beneficial.

Michael: Many so-called ethical issues at the end of life contain a significant spiritual dimension, so much so that I frequently wonder if the issues at the end of life are indeed spiritual. While these issues frequently mask as ethical, medical, or technological, a significant element in them is existential, or spiritual, in the deepest sense of these words...

Paula: For the last two years I have been facing the fact of just what being terminally ill means and wondering will this mean that I'm popping off tomorrow? This recent phase, from October 2007, is a new one for me because terminal is now a bit more terminal and yet it has given me such freedom even though I've never been known for my discretion! However, I now find myself neither putting expectations on myself, or upon others, and often I was the worst one to do that. Equally, there are no expectations on me and all this now brings with it a wonderful freedom to explore those spiritual things that you were mentioning...

I find that because there is also almost a relief from social conventions I have greater freedom and this freedom gives me a greater awareness of the spiritual dimension of all of life.

One thing that has really struck me recently has come about by reflecting on those men whom I had accompanied in their dying. Many of these men living with HIV-AIDS could well have been the age of my son if I had married. Once these men received news of their HIV positive status they would then have to face living with this disease. In those early days of AIDS it was a case of living and dying with most of the emphasis on the dying. Gradually, thank goodness, over the last ten years the emphasis has been on learning to live with a terminal disease. They were conscious all the time, as I am now, that you are on a limited lease. These men had courage in their dying and their dying became a gift to so many – I think that is the real spiritual journey – the journey of possibility and the journey of gift-giving in dying.

Michael: And in making this journey with them you would have also witnessed how their courage and honesty gave birth, over time, to acceptance - but only after their immediate issues had been addressed?

Paula: Exactly. But somehow society tends to cover up the rich and very real possibilities in death and dying. Perhaps it does so because the pressing needs of the dying are not met, or are met inadequately. I mean things like freedom from pain, freedom from nausea, and trying to decide on the option of further treatment or not. But where there is a freedom, and I know this can sound funny, acceptance becomes much more evident. And then you live very definitely in the now because there is no other time. When I think of some of the volunteers at the hospice, for example, I am struck by their ability to live in the now and to be fully present to the person in front of them. It is a wonderful gift that gift of accompaniment.

When we live very much in the now there is a freedom of expectation. For example, I am not worried about the need to save for the future, or the need to have a career in the future. Knowing that we don't have that long term future frees me up to get the most enjoyment out of everyday life.

Michael: Then what becomes important? Or rather, what has now become more important?

Paula: Relationships - the important thing is the person in front of you because you don't know whether you will have the opportunity for any one else to come or for that person to return. You've got now and you've got that person and it's great. And you've got the luxury of not having to think I need to get this and that done and then do the next thing.

Michael: So the "to-do-list" - the "Bucket List" disappears?

Paula: It does. The list of all sorts disappears plus there's a relish of the life-opportunity that is here. For example, food and drink. I notice that in the hospice they are pretty good on meals that meet the patient's needs and mood as well as their pre-prandials. That is a very simple way of cherishing quality of life in the patient.

And what's so lovely, I watch visitors or nurses come in and it also gives them the freedom to drop their expectations. It allows them to enter into this space and be free themselves in this moment of quality and grace. It's also a very transitory time but a path emerges that allows both sides to deal with the more important issues – those spiritual issues like forgiveness, renewed trust in God and memories of love and faith. That can sometimes be a bit difficult. I think its one of the tensions that this time of a person's life brings because there is a sense you are causing pain to those you love most. Because you are dying you are causing grief and loss to those you love – my Sisters, my family, and my friends.

Michael: And how do you deal with that "causal" element then?

Paula: Sometimes not very well. That for me is the deep spiritual pain at times and I have seen it so for others who were dying.

Michael: Because you can't protect? I guess that is the hardest part of love, isn't it – letting love go free? To be free in your giving of love is as hard as being free in your receiving of love.

Paula: Absolutely – ultimately you cannot protect others from the pain of loving, whereas I have tried to at times. And that's again where I think you have to be brave enough to gift the other person with the maturity to handle their own grief instead of trying to protect them.

Michael: If I can talk about your ministry of those living with HIV-AIDS a lot of that ministry has been around advocacy and around protection and you have made a profound difference to their lives at a political, spiritual and institutional level. That took great courage as all leadership in faith does. In a very real sense you were ministering on the frontiers of the Church and society. So how do you minister now? How do you empower others now?

Paula: By allowing them to see me vulnerable - it's so very hard. That is, to allow them to gift to me – the gift of life.

Michael: It is hard being so vulnerable.In the field of professional ethics much is written about what is appropriate and what is inappropriate in our day-to-day roles. In a very real sense we must keep ourselves out of the picture even though ironically we are ministering from our deepest self. Even so you must find it refreshing to have that expectation go?

Paula: That's right. One good thing I know is that I'm in a good peaceful space and there is a joy there. This joy extends to something very simple such as a friend or a nurse or a doctor taking the opportunity to share something that's not going to go any further but that they need to get off their chest. Half the time they don't even realise they've done it but these things still give meaning to my life. I like to be needed and when it happens I rejoice that this conversation did happen and that was good. Then there are the down times and I think, oh bugger this, I'm only in my early sixties and have so much living to do and – Leo Curry pops up you see and I keep saying "No, I'm not ready yet, go home, I'll come soon but not yet". I'm trying to find the word but I know there are other skirmishes or issues to face and that's like the spiritual spiral at a deeper level. Do you know what I'm talking about?

Michael: Possibly but tell me about Leo. He was a wonderful priest-friend and a great mentor and companion to you and to so many. What role does he fulfil for you now as part of the communion of saints? I don't want to sound too pious, but where does he, and those others you have talked about, fit in now with your dying and with your living with a terminal disease?

Paula: I'm going to be honest and say it's a puzzle Michael, I'm not sure – this is what is so interesting at the moment but I don't have some meaningful words. I've only got the pious words and they no longer satisfy. I struggle with the right words to express what I feel but the whole communion of saints idea - I know exactly what you mean and it says a great deal to me. That for me is actually the challenge. I would love to sit with a small group of people and ask them here and now, "lets tussle this one out." If my thoughts don't have the words then perhaps these others can help me discover the meaning of another person's place within the communion of saints, the meaning of all those who have gone before me. I don't doubt the resurrection but I don't know what it means or what union with God or this reunion with my loved ones will be like – I just believe in it!

Michael: Abstracting then from that a little and going back into relationship what does love mean to you now? Putting aside the classical terms what does the love of these people mean for you at this time?

Paula: Life, maturity, reality, sometimes a nuisance, but a good thing really. I had a wee chat with Bishop Peter Cullinane about it recently. He's another good friend and he was also great friends with Leo. He came and saw me. I find it amazing in our church that you can leave a message on the bishop's answer phone and the bishop visits or calls back – the bishops are shepherds in that sense - in New Zealand we are so very blessed. You would be in a position to see this whereas very few of us would be aware of it.

In the end it's always been a puzzle to me - Leo's death at such a young age! He would have been such a gift to the Wellington Church but who knows the wisdom of the Holy Spirit. The other side of Leo's situation, Michael, is that he ministered here in Plimmerton Parish and they absolutely loved him. Because the memory of him still feeds so many it really gives me the freedom to talk about him, to talk about death and life in the very community where he felt so loved as do I.

One of the things I want to say is, without sounding too pious, because I don't have any other words, but being terminally ill is another stage in life. I think because of our consecration to religious life that ministry never finishes. The very living of our life in Christ means that it's something that goes on. I see that part of this ministry at the moment is for me to die as fully alive as possible and there's a wonderful contradiction in that reality. But the huge question for me, and in a way I do avoid it, because I just don't have the words to put it into thoughts. What do I mean by life and death? I don't know. All I know is I do believe in not just the possibility but the reality of life after death. I think it's a life with God but I don't know what that will look like because it is a mystery of faith. So rather than get the knickers in knots – I just "park" it.

Michael: Interestingly I have heard others use the term "parking it" as a way of dealing with terminal illness. And that's an ok thing to do? Taking time to live with the question, the ambiguity of faith?

Paula: Mostly and sometimes it is not. Yes, yes I have to be honest but sometimes in the lonely troubled moments which are often in the middle of the night, or early hours of the morning, it's not a good thing to have "parked it". At these times I quietly pull it out and "nibble away" at it and then put it back in the garage again! I notice each time I do this it becomes easier and less stressful and yes less fearful.

Michael: There is a lot written about hospice and palliative care being essentially holistic in its focus of care and having this wonderful ability to help the dying achieve some sort of equipoise...

Paula: O Michael, indeed, absolutely. I think constantly that honesty is so important; of course I'll fool myself right to the end. Of course I'll play games right to the end but as much as possible I do try and keep hold of the situation. To me this is the raw courage of faith and at times this means honestly saying that I'm frightened, or I don't even have an answer. I must admit that I find myself extremely impatient and intolerant of piosity. Mostly though I sit there and smile!

Michael: Piosity does not serve us well at the end of the day – at least not as much as that delightful and delicate combination of faith and reason. We need both, don't we? Piosity is infantile when you're living and I think when you're dying it does not respect our intelligence nor fully honour our stories or our pain. It is very hard to say I'm scared and it is hard to say that I have no answers.

Paula: I think for me personally, and for many others, the real issue is control. We are desperate to keep just a little bit of control because we have to give away so much – we become so dependent on another. Before we were the one who controlled others! But strangely enough I don't think this is unfair. I can appreciate how some people could think how unfair things are or get bitter about it though.

Michael: Does the courage of those young men who were dying with AIDS and the courage of Leo help and inspire you still?

Paula: Totally, always! And not so much their courageous dying as their courageous living with terminal disease! They showed such gutsy faith.

Michael: Perhaps this is a better expression of the communion of saints - the example of living that you have witnessed and that have journeyed with?

Paula: Mmm, what a great thought. Absolutely. I'm going to think about that for the rest of the day. I hadn't thought of these young men being part of the communion of saints.

Michael: Well Paula, it was you who encouraged them to belong. You told them that they belonged at the table of the Lord. Without sounding too pious I wonder if they and Leo will provide the key to calling you home. Or rather, perhaps they will provide the key to just how you hear God call you home?

Paula: Oh, I think so. Yes. Just even in the last few days I can feel myself letting go the control of the do I die - or do I not die? I'm actually in a situation of considering more proactive treatment. You know you have to weigh up the quality of life and I just know that this is not in my hands any more. I thought it was my decision to make but there's a sense that it is not my decision to make because there is a bigger picture. You are quite right it can seem a pious way to put it but how else do you express it?

Michael: The Jesuit, Dr Myles Sheehan, says that so much of the end of life is medicalised and that this distracts the dying person and his or her family from where the focus should be. In our conversations Paula you have continually focused and refocused on the work of dying and on the work of creating a space to address the spiritual and existential issues. Do you have any final thoughts?

Paula: I do. With the Sisters of St Joseph it's a different space spiritually but I feel particularly for my blood family and the AIDS family. I want to gift these two families with my death. I have a very strong sense that I want them to see it as a good thing, a life giving thing, and something you don't have to be frightened about. But I'm realising that I don't need to take control of this to make it happen because it's going to happen. And that's only just come to me in the last few days. And in a way my sisters and these families will make it happen as much as I do. And to give them the opportunity to let it become that gift because, unlike Maori society, we in Pakeha society tend to cover up death and its possibilities.

Postscript

On May 2, 2008 I visited Sister Paula with her good friend Sister Marcellin Wilson rsm at Mount St Joseph's Wanganui.

She said this, "I have come home to die. You know right to the end I believe we all have this ministry of hope. Just this morning a woman asked me why I was here and I replied, because I have cancer and I've come home to die. As she was pressing my hand I knew I was bringing her hope. To me that's the wonderful thing – that we can always give hope to others, especially in our dying..."

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Father Michael McCabe
Director
The Nathaniel Centre