Tag Archives: carer

Falling

Posted on by
5

It would be a very brave person to say that grief is desirable. Such thinking is anathema to the “feel good” world in which we live. The idea that suffering is not something that we should avoid at all cost, borders on the absurd in our success/merit-based society. In our thinking, suffering is the symptom of failure, injustice, inequity or weakness; those who suffer deserve our pity, right? Or, if we believe that their suffering is self-created, they should surely receive our derision and pity.

For me, being in suffering has afforded a most wonderful change of perspective.

From even before Ngaire died, I found myself in a world where I became aware of people beginning to make decisions based around my and my family’s well being. Kindness, love, consideration and thoughtfulness towards us, was something that grew to be normal; and I had to learn to receive it, which is not all that easy.

Because of that, I have in many ways discovered greater levels of intimacy than I have really known before: I am experiencing richer and stronger bonds in my relationships with my boys; likewise, in a number of my friendships, I am enjoying a level of loyalty and inter-commitment that I once only theorised about. I have realised the potency and beauty of being a part of a small but vital, loving community.

I am not convinced that I would have had my heart open to receive in quite the same way, if I had not been on the “way of grief.”

Growing up and living in a world that rewards achievement and places value in all kinds of social status, means that we learn what is and isn’t acceptable socially; accordingly, receiving from others is not something that many of us do well.

Yet, for those of us who follow Jesus, it is what we must do. If we don’t, then our beliefs will lead us deeper and deeper into a morass of self-defeating efforts to be good enough, which will eventually destroy us or at best, leave us jaded and bitter.

Grace is not something we can earn; it is a state in which we must simply be.

In spite of the fact that most Christians may say amen to that, over the considerable number of years that I have been a member of this “club”, I have observed a different reality.

I am reminded of something that I read the other day, written by Richard Rohr:

“Switching to an “economy of grace” from our usual “economy of merit” is very hard for humans, very hard indeed. We naturally base almost everything in human culture on achievement, performance, accomplishment, payment, exchange value, appearance, or worthiness of some sort—it can be called “meritocracy” (the rule of merit). Unless we experience a dramatic and personal breaking of the usual and agreed-upon rules of merit, it is almost impossible to disbelieve or operate outside of its rigid logic. This cannot happen theoretically, abstractly, or somehow “out there.” It must happen to me.”

There’s a point – “the usual and agreed-upon rules of merit” – a system that we adhere to and perpetuate.

Go to any party and what’s the first thing that we will say to someone that we’re meeting for the first time?

“So, what do you do?”

It’s a question that helps us identify where this person fits within our cultural context – their worthiness, if you like.

Sadly, in many churches, it’s not all that different. Go to any Sunday service and may well have a similar context for a visitor to our gathering. It may be the same question, using the same value system, or we may frame it differently. We may say, “So where do you fellowship?”

Their response will let us know whether their cultural framework approximates ours, and therefore, whether or not they “fit” with our value system.

If what they think is nothing like how we do things at Happy Town Church, then we’ll probably politely show them where the tea and coffee is, and move on.

It’s quite normal and the same everywhere in society. Our friends and those with whom we like to surround ourselves, generally think like us and are usually in a similar socio-economic group.

We build sanctuaries of like-mindedness and create frameworks of exclusion, which by their very nature don’t allow us to truly receive or give. We may even truly believe that we are “saving the lost”, when all we are really doing (as we did to ourselves) is make people fit into a cultural framework that gives them a sense of value. The more that we “do” to fit into this framework – meetings, small groups, committees, etc – the more value we have. Sadly, those who aren’t prepared to fit this framework are often viewed as fringe-dwellers who are not really “walking with the Lord.”

We shape our beliefs to fit what we want our lives to be. We have made theologies out of how God wants us to be happy, prosperous and comfortable. We shape “mantras” that help us to get handles on God, so that he can fit into our lives and therefore, we can have the lives that we want.

But, in all of this following of our dreams, at the back of our minds is the ache that maybe this isn’t how it was meant to be.

Jesus said things completely contrary to that, things like:

“In this world you will have trouble.”

“Whoever loses his life, will find it.”

“He who would be greatest, must serve.”

From my not-too-distant past, I can tell you how we Christians spin interpretations on those very confronting words of Jesus’, so that we become “faith-filled overcomers” of our situations, thinking that it is the outcome of success for us that is the proof of what we believe. It becomes a lifestyle of denial that doesn’t allow that pain and suffering is anything but bad, never allowing us the freedom simply to be, to feel, to love, and to be loved. It is a theology that equates “successful” faith as that which fulfills my dreams – one that is no longer centred around God’s purpose of oneness and unity, but around the needs of my ego – which is the opposite. Somehow we have written theologies that pretty well say, “God wants me to be happy”, when maybe God really just wants me to be real – that in the Universe there is everything from the budding of a flower to the catastrophic destruction caused by a supernova, vaporising millions of worlds in an instant; my dreams need to be understood in that context.

Of course, the God-wants-me-to-be-happy theology can never work, so our lives become more and more a search for which speaker might approximate the truth more closely to how we feel at any given time; which “teaching” dangles the carrot that is a little sweeter from our point of view. We may tarry for a while at those places which call us up to a “higher place”, then move on to another conference, a deeper understanding – all the while feeling inside that there must be a magical ring, the key that will unlock the secret – never realising that God is in all life, not just the good bits.

He is in that which we deny, as much as that which we pursue, the prayers that are unanswered as much as those that are, the people with whom we disagree, as much as those whom we worship….

So now I find myself in a place that is one of rest, where it is possible to hold the good and the bad in balance, only attempting to change that which is naturally altered by love, though I confess to being far from competent in that. My litmus test is my behaviour when in traffic and so far I’m not doing all that well!

What I have learned is what I may have touched on before; that most of our attempts at theology are about us trying to get a handle on the God who refuses a handle. Life will always throw something up to break our perfect mould.

Maybe these are the ravings of someone who has been hurt and is reacting negatively; or maybe God is infinitely bigger than the tiny box in which I had him; or maybe this is what the mystics call the second half of life. As Richard Rohr says of the spiritual journey of the second half of life:

“Your concern is not so much to have what you love anymore, but to love what you have—right now. This is a monumental change from the first half of life…holding life’s sadness and joy is its own reward, its own satisfaction, and your best and truest gift to the world.

“Strangely, all of life’s problems, dilemmas, and difficulties are now resolved…by falling into the good, the true, and the beautiful—by falling into God.” *

2014-05-10 18.42.59 - Version 2

* From Falling Upward: A Spirituality for the Two Halves of Life – Richard Rohr

Stages

Posted on by
3

February is always the most humid month in Sydney; days and nights enervate. I think of those who suffer with depression and wonder if these humid nights are a greater burden. I am so thankful for my ceiling fan.

As I said last time, my sense of loss is no longer as painful; grief has modulated into a very specific loneliness for which no company or friendship can quite provide adequate balm. Having said that, the proposition of nights alone is often daunting and much easier in the company of loved ones.

In looking back over my notes on this journey, I spent a bit of time looking at the “Stages of Grief” as outlined by Elizabeth Kübler-Ross in her book, On Death and Dying. I thought it would be pertinent to see how much of my last seven months has mirrored this framework. It should be said that these are not strict, chronological stages; some may be revisited, for example, Stage 4, which is depression.

 

Stage 1 – Denial: The shock of losing a loved one usually hurls us into denial, a state that helps us to survive the loss. It is not so much a denial of what has happened as numbness to the impact of what has happened. In Kübler-Ross’ words, “There is a grace in denial.” That grace allows us to regulate – pace – our feelings of grief; we simply walk, or stumble, through the basic commitments of each day: getting up, showering, having breakfast, etc. This disconnection, if handled properly, will see us gradually begin to ask questions in order to begin the healing process.

For me this process was very real. I could not really write or do much else other than go through the motions, where numbness ruled, apart from the occasional electric jolt when a thought or association would shock into life the monster of grief.

Stage 2 – Anger: Apparently this is the stage where one recognises that denial can’t continue and the questions begin, such as, “Why did this happen to me? Who is to blame?”

I can’t recall being angry. Although I had anticipated Ngaire’s death for many years, hope had arisen in the form of a lung-transplant. When she died, possibly within days of lungs becoming available, the sudden shift from hope to hope shattered was staggering in its finality, like a guillotine-blade through the soul. I had, of course, considered that Ngaire might die; we had to face that very real possibility, as part of the process in preparation for a transplant, not to mention that for her to have a terminal condition was a perpetual reminder of her potentially imminent mortality.

I actually felt that, if she died, I would be angry at God for callously allowing us to hope, only to rob us at the final hurdle (especially after so many hurdles that dear Ngaire had already jumped). However, I wasn’t angry; instead, in the midst of the pain I felt a great peace and an abiding understanding that God is good. I actually don’t get that.

Immediately I hear my own voice saying that this is just another form of denial. Maybe. It could be that this whole process of the last seven months has just been a little padded cell in which I have put myself, protecting that self from hard truth – an extension of denial that is shaded and coloured by the need to fool myself that God is in control and that I am engaging truly in grief and loss; or maybe there is another reality.

Maybe there is a reality – the real reality – that says that I am not fooling myself. I quote from my post-Christmas blog: “Here is the point I grasp: we are all terminal; our time here is finite, whether it be for two years, fifty-six years or a hundred years. In the vast scope of eternity, our time here is less than a breath; too short to waste on self-importance and anything less than what is real.”

Maybe God is good and there is an eternal perspective that exists well outside the confines of my egocentricity, a perspective in which the oneness of creation is paramount and is not particularly ruffled by my need to have answers. I have no other explanation for why I mostly have this peace.

Stage 3 – Bargaining: I think this is more an issue for the one who him/herself has been given a death sentence. The individual bargains with the Higher Being for an extension in years, in exchange for a reformed lifestyle, or some such. I do remember in passing, a comment that I made to Ngaire, after she went, that I would give everything I had to hold her and kiss her and laugh with her one more time.

Stage 4 – Depression: It is during this stage that the grieving person begins to understand the certainty of death and may ask questions like, “My loved one has gone and is not coming back. What is the point in going on?” I recall my father being in depression for an extended period after the death of my mother, despite our best efforts to stand with him and reintroduce him to relationship with his grandchildren after years of being “locked-in” as carer for a wife with Alzheimer’s. One night, as he was leaving our house, having had a great night with us all, he sat in his car, in tears, before he left, and said to me, “I guess I have realised that a lot of people would be very sad, if I wasn’t here.”

He needed to understand, as do we all, that we have value in the lives of others. One of the most significant things that have given me the impetus to work through this whole painful process is that I know that I have almost immeasurable value in the lives of my boys.

I have referred in my blogs to the dark places that I have visited over the last year; it has only been in the last month or so that the frequency of these visits has diminished. Nonetheless, it sometimes doesn’t take much. Just a couple of weeks ago, as I was going to sleep, my mind went to one of the few times that Ngaire cried in fear that she might die; I remembered her saying through her tears, “I don’t want to die….”. I hadn’t even thought of that before, but instantly the rug was pulled out from under my soul, and depression and sleeplessness was my lot for the rest of the night.

According to Kübler-Ross, depression could be referred to as the dress rehearsal for the “aftermath”; feeling sadness, regret, fear and uncertainty is natural at this stage. These emotions show a beginning of acceptance of the situation.

Stage 5 – Acceptance: I guess this is pretty much where I am now. It’s the understanding and attitude of heart that there is a future, and that everything is going to be OK. It is simply what it says:  acceptance of the situation.

Now a number of my friends are facing very solid journeys themselves. One thing that these Stages of Grief don’t account for is that, for those of us who recognise a connection with God, there is always an underlying hope, no matter how hidden it may seem at times.

God’s way is the way of love. His way may include healing; I know more than one person who has been miraculously healed of deadly types of cancer. But, to hark back to a couple of blogs ago, the love of God, in which we trust, is transcendent; that is why we have an underlying hope, because it is not only good for this life but also beyond.

“Neither death, nor life…the present nor the future…nor anything else in all creation can separate us from the love of God…”* and love means hope.

* Romans 8: 38-39

The Path of Healing

Posted on by
5

So, now we are back home and life has resumed as normal. North-American Christmas has given way to the beautiful post-Christmas summer of Sydney: fresh, seasonal avocadoes, mangos and watermelon, along with the smell of gardenias, the ubiquitous barbecue, cold drinks and sun on skin.

Although we bathed in the peace of our time away, there is a great sense of home and rest in Sydney at this time of year; everyone is in a relaxed mood, the air is warm, the traffic light, and it’s all about relaxing and spending time with friends, for as long as we can make it last.

I love this time of year here.

Being back has had me reflecting, in a peaceful way, on the journey of the past nearly-six months; I have written about grief and all of its facets – at least, what I have been able to identify within the context of the relationship that Ngaire, our boys and I shared; I have had marvelous conversations with friends and family – life-filled conversations – that have gone deep and helped bring a measure of peace and understanding; I have sat to write many times, having experienced an aspect of pain or loss, and in the engaging, found profound, unexpected truth.

Though I don’t anticipate that this journey will ever fully end, I have found myself in a different headspace lately; some of the things of which I have been apprehensive have taken on elements of peace, and become building-blocks for the future: unexpected but deeply appreciated.

Today is Ngaire’s birthday. Birthdays in our family would normally be mini festivals that stretch over at least a few days; this was something that Ngaire instituted and perfected – an honouring of a person that would leave them in no doubt that they were loved. This practical and caring demonstration of my love is what I am unable to give today; but this now leaves me with melancholy more than pain.

Now, most of the time, when I think about Ngaire, I see her smiling, vibrant and full of life. I don’t know how or when that happened, but I am glad for it, and in many ways, feel that it happened in spite of me. This brings me to what I have really been thinking about.

It would seem pretty obvious that grief is a process that the bereaved person goes through and, no matter how well supported they are, is quite a solitary journey. It occurred to me recently however, that Ngaire has been my almost-constant companion through this process. I am coming to understand that how I thought of her through this process is an indication of what I was going through. For example, throughout much of this period, my mind has gone over and over her last weeks, particularly her last day. The pathos of her frailty and weakness has at times been overwhelming in my mind. It has screamed at my ineptitude at not being able to save her and laid bare the inadequacy of my support, provision and care for her, all of which laid an axe to the root of my perception of who I was, as a man and husband.

Over time and particularly through our “time of peace” away over Christmas, I have been able to let go of many of these feelings. I know that there was nothing that I could have done, and now my heart is beginning to agree with my head. Now, I think far less of the tragic moments before her death and more of the happy, healthy, vibrant girl that Ngaire was for most of our life together.

People often say to someone who is bereaved, “remember the happy times – let them be a strength to you.”

I get the sentiment, but it seems to me that it would require a “short-circuiting” of the whole process of grief. One thing that I have been discovering on this journey is that the engagement is everything. Pain can be a good thing if we, with our limited, pain-minimising Western understanding, can clasp hands with our inner life and walk through the pain. It’s the old in and through.

I know there are different kinds of loss; I can’t imagine – or perhaps I can – of losing a child or another close loved one through sudden, tragic circumstances; I couldn’t begin to fathom the pain of those who lose many members of their family in a car accident, and find themselves alone in their anguish.

This I do now know: grief is the path to healing; if I do not engage in the pain and walk through it, I will become misshapen by it. I also believe that a key is the need for me to continue to give as well as receive love; in the giving, the flow of life is restored, little by little.

I don’t pretend to undertsand this whole thing; that mysterious, peaceful time overseas has brought restoration deep within, but I don’t know how or why. It is as if God, has, as I mentioned in the last blog, tied it all up and said, “Here, tuck that away. Don’t be afraid to refer to it as often as you want, but it’s gift to you will now be peace.”

Ngaire is still my companion, but now there is peace and, dare I say, even a modicum of joy for who she was. I still miss her, every day, but now I see her smiling. She was also a twin, so today is her beloved sister’s birthday too. Everyone has their journey, so we need to tread gently.

Image

Pictures

Posted on by
10

I was having coffee with some friends, when one said to me, “I like the beard; you should keep it.”

I hadn’t consciously been working on a beard. When I got home, I went to check it out. As I stood before the bathroom mirror, I realised that I hadn’t spent any time looking at my face recently, almost as if I had some kind of hesitance in engaging the eyes, for fear of what I might see there. I had become a little unkempt, though not too bad – kind of like a front lawn that had grown a little too long and with edges in need of a trim. Normally, I would keep things under control, but I had clearly been preoccupied with something. I say “something” because it’s not what you might think.

While my loss of Ngaire does account for a huge part of my thought life in a day, I am still living life: going to work, cooking meals, washing clothes, seeing friends, laughing and making small talk. What the unkempt man in the mirror underlined was that normal had, in many instances, become something that I had to make a conscious decision to engage, e.g. “I think I’ll make dinner now”, or “maybe I should have a shower before I go to work.”  It is almost as if the chip that looks after routine has a malfunction and that part of my brain is floating in cyberspace somewhere – preoccupied with floating! Maybe that’s why the unexpected has such a sudden impact on me emotionally.

I’ve talked about this before; it’s common to all who grieve and understood by most. We hold it together most of the time as we continue the job of rebuilding and working with the new shape of our lives. Then something appears – usually entering through our senses, catching us unawares – that folds space and time so that we are instantly transported back by a smell, a picture, or a sound. There have been many such moments over the last four months but the other day, one in particular showed me another aspect of this journey.

Most of us have a presence on Facebook; for those who don’t, I hope you will bear with me. Ngaire still has a presence there and I see no reason why that should ever change. I had actually made a decision not to visit her Facebook pages yet, in the same way that I have decided not to sort through her clothes, personal items, etc. It’s too confronting, too painful still; but I know that the time will come.

Remy, my precious twenty year-old son, who is living overseas, did go to her Facebook pages, to look through the pictures that she had put up there, many of which were tagged with my name. When Remy “liked” them, or made a comment about them, I was notified on my phone, and unwittingly drawn into reading her comments about pictures of me and of our family.

Ngaire nearly always had something good or encouraging to say about everyone she knew. That was one of the things that she did well, but when I read the comments of love and adoration that she had for me in these pictures, I was undone. In instance after instance, I had reinforced to me the one central, glorious, beautiful thing that was gone from my life – her love for me.

As stupid as it sounds, I hadn’t fully realised that it’s not just her presence, her touch, conversation, smile, laughter, or any number of things that relate to her being present that I miss the most; but the love that captivated me, helped sustain me and made me feel that I could do almost anything, was gone – relegated to the past – and the loss is palpable.

I know that there are those who will say that her love lives on in me and the boys and in the hearts of those whom she loved; I understand that sentiment and it is true to a point, but the active adoration with which she endowed me, that was central to the peace of my heart and my home and helped shore up my character, is no longer a vibrant life-force in my world – in my boys’ world. This is loss and, as I ponder, it is also key to understanding the rebuilding. Now that I see the keystone is gone, again I sit pondering the precarious nature of this house in which I dwell.

If only we realised how central love is; it is the stuff of life. Without it, we merely go through the motions. It is that which holds life together, makes the weak strong and the poor, rich.

I am deeply grateful for the love of my boys, my friends and my family. Without that, I can’t think of one reason why a person would want to keep on living. With it, I have the mortar to rebuild.

Rehearsal

Posted on by
2

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:

  1. It is not about me having an expected outcome.
  2. It does not dictate that I must badger God until he gives me what I want.
  3. It is not about having an expectation that everything will be peachy.
  4. God is far bigger than any box that I may create for him or indeed, any understanding to which I may come.
  5. God can do things any way he likes.
  6. Suffering is an integral part of the journey to joy.
  7. It is O.K. to doubt.
  8. Faith is purified more by unanswered prayers than answered ones.
  9. 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,

And communed.

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.