This Advent, a more disturbing gift has lain in wait for us.
This Advent, a more disturbing gift has lain in wait for us.
As a child, I was one for sneaking into our parents’ bedroom and feeling the mysterious parcels at the bottom of Mum’s wardrobe, in the weeks of Advent. Even when I knew exactly what was in a parcel, the anticipation of opening it brought future joy forward to me. Mum and Dad had a wonderful way of taking the ordinary and making it special by withholding it and thus filling it with mysterious delight.
This Advent, a more disturbing gift has lain in wait for us. We are beginning to feel its shape and size and bit by bit, understand the meaning it brings into our lives together. You certainly wouldn’t call it delight, but it was more relief when we finally had a name for it, this shadowy thing that was hiding just under our conscious knowledge.
We have known for some time (a year or two) that George’s health was ‘not right’. It was a vague feeling, nothing you could exactly put a finger on, something we tried to explain to ourselves as ageing, or unnecessary worrying. Last Christmas he had a serious infection that did not respond to antibiotics, and eventually had to have a bowel resection. His health seemed to pick up for a while after that, but a few months later he was again exhausted much of the day. This is quite uncharacteristic of him, as he is a fit man and an avid gardener.
One day I went down the backyard and noticed that weeds were running through everything and taking over. That told me something really bad was happening. A short time later he got an infection in his thumb and was on the merry-go-round of medical tests grumbling that the doctor was overreacting.
I am sure you are now getting the shape and size of what was hidden but waiting for us. He has now been diagnosed with Chronic Myelomonocytic Leukaemia. As it is at the intermediate stage, he will start chemo in the new year, once the follow-up tests are completed and a program made. If he responds well, this will become the ongoing rhythm of life for us.
It is a tumultuous time, and I don’t want to speak for him, but I do want to say that we are finding it is bringing us together in an intimacy that is redolent of our earliest times together, where we set out the kind of way we wanted to live our lives, what our values and beliefs were, and how we wanted to be together.
Many things in the parcel along with the unsought devastation, fear, concern and forced changes have been real and precious gifts to us: our family with whom we shared the news over takeaway pizzas and several bottles of red wine, or by phone for those away, are our lifeline and our comfort. We are so proud of each one of them, and so grateful for all the kindnesses and practical ways they have shown their love for us.
Friends and extended family members are our good fortune too. Mum’s heart is sad, in her love for us wishing we did not have to face this future, but the way she has lived her life is our model of courage and trust. We have a sense of being loved and sheltered as we rearrange our understandings and perceptions in response to opening the wrapping paper.
There is much life to be lived yet, and we are blessed and held in the deep peace that lies below the stormy waves.
Strangely enough, this is where I take off my shoes and find the common bush afire with God.
I have been debating internally for a while about whether or not to start writing my blog again. I have loved writing it in the past, although it is hard to tell whether it is a useful thing to do …
Source: Not Actually Walking The Camino.
I have been debating internally for a while about whether or not to start writing my blog again.
I have loved writing it in the past, although it is hard to tell whether it is a useful thing to do given the state of the world, and how small my little patch is in the larger scale of things. All the same I have decided to write again if for no other reason than the sheer pleasure of forming words around my thoughts and experiences.
It was never a decision to stop forever, but rather a reaction of exhaustion and grief in radically changed circumstances. Adjusting took longer than I thought it would, and so it fell silent.
I have learnt much in the ensuing months, and I guess the new learning will express itself along the way, in my perspectives on life. I don’t intend to deliberately explore it all here – it is a bit raw for that. Suffice it to say, that my husband is well after a long period of recovery from surgery, and my mum has stabilised after her stroke and the events that followed it, and some remarkably skilled interventions since.
Two friends have each walked the Camino in the last two years. I have been envious I will admit, as it was one of the things I hoped to do in my retirement, but my body aged faster than my plans and it was no longer possible. I found myself wanting to live vicariously through their journeys. It was quite a struggle to find out how to turn that around for myself so that it became a growth moment.
The first dear friend brought me back a pair of ear-rings from the end of her walk. One day as I was putting them on, it occurred to me that there are many forms of long roads that we walk alone, even though in company, and some of them are steep and hard but have beautiful times as well. Since then, I wear my Camino ear-rings often, especially on days that might prove to be challenging. They remind me that for the present, this life right here is my Camino. I don’t always make it with grace and good cheer, and sometimes not even with dignity, but I guess there are few who sail through any Camino unscathed and they all celebrate it in the end.
And so it is in Stroud Street, Cheltenham.
The clacketty bird has come again with the spring and woken me with its exuberant noise, and now it has moved on and the magpies have followed it in a quieter voice. Two babies have been born in another generation of our extended family (both with excellent taste in parents), the pansies have died off and the petunias are in, and I walk the little dog in sunshine rather than in the rain and wind, which in the end I have learned have their own pleasure.
The wheel turns and everything is in its right season whether or not I approve, accept, fight or love it. Time to take off my shoes and see again.
Trying to write when too weary.
Today I sat down to try and write a blog post. I try to get one written in the third week of the month.
Life has been hectic this past couple of months and my focus has been on getting through all that is necessary each day. No time for waxing lyrical!
Things are calming down now, but I am still finding I need to step out to regenerate.
I have just written a short meditation on dryness to give you a brief picture of how things are. You will see it is not all bad. However, as Peter Cundall used to say at the end of each ABC Gardening Show
“That’s your blooming lot for now!” See you soon.
Meditating on Dryness.
Dry and can’t write
Dry as chips
Dry as a bone
Dry the washing
Hung out to dry
Wrung out and dry
Dry the dishes
Dry the baby after a warm bath
Smell of powder and
Snuggle up and cuddle
Take a deep breath and smell it
Dryness before rain
Landscape of longing
Parched and wasted
Dry after rain
Not quite dry of course, still dripping with sweet air and water
Dry under a roof
Listening to the rain and wind outside
Thinking of people not dry
Cold, wet, abandoned
Striving to get dry
Been dry and counting the time
Dry your eyes, there you go
My dryness of heart and soul
needing deep water.
The last post was titled ‘The Gritty Side of Love’. A friend responded wishing us grace and grit for the coming weeks. She could never have guessed how necessary those gifts were, that she wished for Mum and the rest of us. So for Part 2 of the story:
True to form, Mum was shifted to a rehab facility. Although old and quite institutional, we knew that with the coming health changes in our state, not a lot of money could be spent on the facilities, so share wards and bathroom and toilets were the go. The gardens were beautiful and families could be there easily. The therapists were excellent and Mum was enthusiastically making every effort to do any exercise given and more, and was making a very good recovery. Mum was walking without supervision or support with her never before used walker. She could get in and out of bed and walk outside if she chose. She was back to her crosswords and soduku. We were invited to a planning meeting re her coming move to home based care.
There were a few issues re food provision as mum is allergic to garlic. It did take many representations to convince some of the staff that this was a real problem. Mum could have just eaten a meal with garlic, but she would have experienced severe diarrhoea, pain and nausea – for quite some hours afterwards. The only accommodation was for her to be given a punitive plain white bread sandwich for two meals a day, as if she was a small child fussing over her food. We were repeatedly told that ‘the kitchen said all food is cooked with garlic these days’. Eventually enough staff realized they themselves were the beneficiaries of her not eating it, that the kitchen existed for the patients not vice versa, and the family could stop having to bring 2 non-garlic meals a day from home. It took 5 requests from family members. Perhaps looking back, we should have realized this indicated something institutionally systemic about attitude, but we didn’t pick it up.
Four nights before the exit planning meeting, at 10.30pm, mum complained of severe pain in her abdomen. Now our mother is not one to fuss about pain – she has lived with all sorts of pain for many years and is as courageous and tough as the proverbial boot. If she says she is in severe pain, she means it. She said it felt as if she was having a bleed – and she has had several so she knows what that pain feels like. She was offered two Panadol, and it seems there was no follow up all night. She was still at a horrendous pain level when the doctor came the next morning. (I am not blaming him – I do not think he had been called). At 10 am one of my sisters arrived at the hospital unannounced and found a flurry of ‘happening’ around the bed. Mum was completely white from lack of blood – her blood count was 47, less than half of what it should have been. When I saw her at 2pm she was so white I had to look twice to be sure she had not died.
To shorten this story, she had bled all night into her abdomen. When the ambulance my two sisters requested arrived, the officer had to ask for her to be given pain relief, 12 hours after she had called the nurse. There was something mystifying about how mum left the hospital. The staff stood in a row by her bed, silent and observing. They didn’t speak a word of comfort. Not one of these people who had known her for about ten days seemed to remember that she was a person – and that she had full faculties and the power of speech. The ‘ambo’ God bless him, was the one who reassured and comforted her, and told her he would give her extra medication for the journey as she was still in too much pain to be moved.
Mum was treated well with clotting agents and transfusions and admitted to a ward in the Royal Adelaide Hospital. She has been very well looked after, but the consequences are huge. She has lost all the improvements in strength that she had made, and more besides, and has to start all over again. This time she feels weak and discouraged, and very apprehensive. At 91, finding the energy to face the unknown all over again is tough. Sometimes to her it feels impossible. She has repeatedly expressed that she would rather she had died – that same person that had a rocking party, complete with Irish dancers, for 120 of her family and friends last year. (She came with me to the bottle shop to do the order herself, as she suspected I might go a bit light on).
We are meant to be her supporters and encouragers now, and we will be. I ask myself, though, how do I balance this with listening to her grieving her shattered confidence, her loss of her hopes for the kind of future she wanted, the loss of her life as she knew it, and her appraisal of what ‘getting better’ means. Where is the space for her mourning her losses while at the same time she has (necessarily) to do all she can to focus on what can be achieved?
Yes, she is better and yes, she is worse. It is a roller coaster of emotions every day. The worst is trying to come to terms with the knowledge that while she and we knew she was at risk of a bleed (and so did the rehab staff) the severity of both the pain and the consequences were entirely unnecessary. Oh and that when the head doctor from the rehab facility called by in the RAH ward, we discovered that the extent of the happenings that night had not been disclosed to her. I draw no conclusions, but you can bet she will.
Grit grace confusion anger gratitude sadness frustration pain love love love – and my seventieth birthday is certainly one I will never forget.
It wasn’t hard to find the place to take off my shoes for this post.
On Saturday our Mum was taken to hospital with a stroke.
Mum lives alone, independent by choice, but through a wondrous chain of events one son was there when it happened and was able to immediately get her an ambulance. She was at the hospital, through the CT scan that revealed a clot in her brain, and being given the clot-busting treatment before the hour was up. She has made a remarkable recovery and will make more, but it is a very hard road to have to walk in the oldest stage of life.
A stroke is such an aptly named event. Even though Mum had a medical condition and took medication that still left her at risk, when it occurred it was in the space of time that a downward chopping stroke of your hand might take. Plans and certainties rudely proved in that moment to be illusions, as she fell to the floor immobilised and speechless and not comprehending what had happened to her.
We, all her sons and daughters, were confronted by the precarious of existence – hers and ultimately also our own. It was so good to be able to all be there together, sharing the fears, talking over our responsibilities, watching out for each other, loving each other. We shared the surge of joy and relief when she emerged from the theatre alive and with us still.
As Mum has regained speech, movement and brain function (yesterday, 5 days post-stroke, she was back on to the crosswords and soduku) we have all talked about living in such a privileged part of the world, and in this advanced stage of technology. So many factors came together to allow her such a good outcome that has not been the case for others we know and love.
Mum has always been a very fit and positive person and was blessed with a strong constitution. She worked in every way she could to make her body strong and for it to be able to support the busy life she has led. She is probably one of the fittest 91 year olds to pass through the hospital ward. This does not take away her grief at losing the reality that was hers before that second. She is shocked and sad, exhausted and apprehensive, as well as rebuilding hope and making her choices about what she wants. With her usual courage she is facing working out the dimensions of what has happened and what the implications are for her.
She is surrounded by love and the most superb care, from the ambos and doctors, the surgeon who removed the clots for half an hour, the nurses and therapists, who attended to her with skill and gentleness (and to all of us with patience), to the cleaners and food deliverers and volunteers who quietly attended to her needs, to her Parish Priest and friend who came that very night with the sacraments that fed Mum’s faith and trust.
The love and concern for other people that Mum has lived by, has been overwhelmingly returned. So many people want to care for her that we have to go by roster so her brain has a chance to have the rest it needs to reweave itself. Her personal friends have kept her in their hearts and prayers, understanding that staying away is the gift that they can give for the present. They will soon be able to come and help her talk her way through this massive disruption, and be there for her after it.
You can be sure that as Mum sets off today to the Rehab facility, she will be at those exercises and tasks that lead her back to independence – and if all the love she has received could become a physical manifestation, she would be carried so high she would fly.