Ngaire’s battle with lung disease stretched out over a period of more than twenty years – over one third of her life; and I had the privilege of walking with her through it all. For the first seven there was hope that it may resolve itself, but thirteen years ago, the diagnosis turned sinister – to pulmonary fibrosis – which is always terminal.
Over those years, my role was to love, support, care for, encourage and enable her to walk the path towards wholeness. We looked for healing, from the supernatural to the intensely natural: prayer, whole foods, herbal remedies, naturopathy and everything in-between. Because the prognosis was terminal – usually, at best three to four years – perhaps, in retrospect, there was a measure of healing in some of those. After one visit to Bethel Church in California in 2005, where Ngaire was prayed for, she was completely symptom-free for eighteen months. Two subsequent visits, however, yielded no such fruit physically. All of that is to help paint the picture that this was a long journey, full in many varied and challenging ways.
One of the things that we learnt early on in the process was that the medical profession wasn’t very good at giving you bad news. In many ways, they were often quite brutal and many times we found ourselves clawing our way out of a pit of despair (I should say, however, that Ngaire’s doctor for the last three years was an exception to this experience; we found him hopeful and supportive, even when things went sour).
I found myself needing to be Mr Positive because of this, always pointing the way to the positive aspects, always trying to provide her with an anchor point for hope. The reason for this is the real help that hope provides, emotionally, psychologically and physically. The alternative – despair – soon carves a slippery slope to destruction in the often desperate heart of one with a terminal sentence. Even in her last thirty-six hours, Ngaire hoped and believed that after her sedation and intubation, she would wake with new lungs from a transplant. I am relieved that that was in her heart rather than hopelessness and despair.
Of course, my own personal journey was different. I purposed to maintain her hope, but would, myself, at times, visit dark places, writing of hopelessness and the feeling that my days were a rehearsal for what life would be like without her. This would happen particularly when she was convalescing elsewhere or on one of her several hospital visits. Without her presence in the house, the whispers would often be that my actions of preparing meals, doing washing and ironing, making lunches, organising cleaning rosters amongst the boys, were all practice for the future when she would no longer be with us.
I couldn’t talk to her about this, which is more difficult than I can tell. In almost everything, Ngaire and I would seek each other’s opinions, thoughts and feelings. I think the word that I used in an earlier blog was symbiotic. Since we remarried in 1991(for those of you who don’t know, we were separated and divorced for five years – that’s another blog), our marriage was totally different. We had almost a singularity in our approaches to things. We would use ineffectual words like “team” and “agreement” but it was much more. I cannot tell how many hundreds of times I would pick up the phone to call her and she would be calling me, and vice versa; we would often be jointly thinking of the same things or people and begin to speak about them together at the same time.
Much of this kind of thing is not uncommon in close marriages, but we had fought some hard-won battles to bring us to where we were. Part of our remarriage vows said, “I give my life to you as an open book”. Now, here I was with all of these feelings of hopelessness and despair, and I was unable to tell her, because I knew that it would be destructive in her physical battle. One of us needed to be paddling the boat, and that was usually me. I have learnt that this is often what happens to a carer. I saw it in my own father as he took care of my mother through many years of Alzheimer’s. Despite my urging he found it difficult to open up about his struggles – which were deeply evident in his demeanour – and mostly kept it bottled-up, to his and our great detriment; he died shortly after mum. However, I am immeasurably grateful for those few friends in whom I could entrust the deep, dark things, who supported, prayed and help strengthen me for the road.
So where does faith sit in all of this?
Over the course of Ngaire’s illness, faith changed shape enormously. In fact, to enlarge the metaphor, it became an almost unrecognisable monster at times, as we waded through the mud of “unlearning” what faith is.
As an aside, I am bemused by atheists, some of whom are my friends, who in their own “evangelism” presume that I, or others who think similarly, have not grappled substantially with these issues of the existence of God. It is arrogance to presume this and flawed thinking to not allow another possibility. What is the difference between that and a rabidly fundamentalist Christian? I digress.
Let me tell you some of the things that I believe I have discovered about faith:
- It is not about me having an expected outcome.
- It does not dictate that I must badger God until he gives me what I want.
- It is not about having an expectation that everything will be peachy.
- God is far bigger than any box that I may create for him or indeed, any understanding to which I may come.
- God can do things any way he likes.
- Suffering is an integral part of the journey to joy.
- It is O.K. to doubt.
- Faith is purified more by unanswered prayers than answered ones.
- Yes, I am loved.
I was talking earlier about Ngaire’s and my closeness. I don’t want to give the impression that it was all sweetness and light. To reach the gold you have to dig the dirt; at times we could be downright abrasive with each other: I have some memorable journal entries! But, generally….mostly…..entirely…we were deeply in love.
I wrote this about eighteen months ago, after we returned from California; Ngaire had taken a downturn and was staying at our friend, Moira’s, place.
It is the Oneness
Unwell, she convalesced in another place
Alone, deep in the night,
I stirred beside her, felt her warmth
And the air move past my face from her breath,
Tenderly, we enmeshed the arms and legs
Of our souls in gentle embrace,
From the other possibilities of mind-time,
I called myself to reason, lying suspended,
Sliding around consciousness.
That reason again challenged life
That this is a dream,
That she is not here,
That I am alone.
I turned my back and swung my feet to the floor,
Melancholy in such sudden solitude,
Until the voice of resonance
Within informed me,
It is the oneness.