Guest Post: The Art of Presence

Guest Post: The Art of Presence

I read lots of articles about grief but I repost very few of them. Generally, as I read through these articles, I agree with most of what I read, but there is almost always at least one sentence that I read and think “No, that’s not me.”

However, this morning I read a New York Times piece on trauma, entitled The Art Of Presence and immediately I could identify with all of the points that I was reading. I will reprint it in full at the end of this blog piece, but first I would like to comment on some of the parts that I identified with.

Yes, suffering is a teacher, I feel like I’m on a very steep learning curve. I wish that there could have been some other way, to learn the many lessons that I feel I have learned over this past two years, but perhaps there is no other way.

Pain

The art of presence” – oh how very much I have appreciated the many people who have been there for me and my family during the past two years. As the article says, some are “firefighters” and some are “builders”. There is a place for both. The article correctly says that there is no way of predicting which friends, or even acquaintances, will step up to the plate and provide that loving support.

Nowadays, I especially appreciate those who show that they still remember. I appreciate those friends, relatives, neighbours and work colleagues, who unobtrusively minister to my heart with a squeeze of the hand, a timely hug, a ‘like’ on a Facebook post, or a quiet “how are you doing”, accompanied by a facial expression that shows they really care.

To be honest, there are some days when I am driving to work, a church service or a social event, with tears streaming down my face and I have to wrestle with the urge to turn my car and head for the cemetery instead.

Do bring soup”. Oh wow, so many of you have done this for us in so many different ways.

You fundraised for us in countless ways, so that all of our financial needs were catered for. While Leah and I spent approximately twenty weeks in hospital, you came and helped Horace to build a beautiful house, that I thank God for every day.

All proceeds

You baked us buns, yummy, delicious buns.

You filled our freezer with delicious dinners, for months after Leah died. So much so, that not only was I able to feed my family, I was even able to invite close friends to eat with us too. This was very important to us, at a time when our house felt much too quiet and the ’empty chair’ was so conspicuous.

Some gifts were a “one off” and came at just the right moment. Like the generous gift of money pushed through our door the day before five of us flew to Bristol for our first Outpatients Appointment. As I stared at the bundle of Bank of England notes, I thought it very strange that they were all fresh, crisp, BANK OF ENGLAND notes – our cash dispensers here normally dish out Northern Irish sterling. Then I realised, that this friend had remembered, what we had completely forgotten – we needed Bank of England sterling for our two day trip to England the next day. I immediately thanked God for providing for our needs through the thoughtfulness and generosity of a friend.

Philippians 4 19

Don’t try to make sense of what has happened” – that is my prerogative, not yours. Some good things have come out of Leah’s illness and death, but that doesn’t make her illness and death “good”, or make it feel in any way justifiable.

As the Rev Craig said at Leah’s funeral, some things in life will always remain a mystery.

The Art of Presence

JAN. 20, 2014
David Brooks
Tragedy has twice visited the Woodiwiss family. In 2008, Anna Woodiwiss, then 27, was working for a service organization in Afghanistan. On April 1, she went horseback riding and was thrown, dying from her injuries. In 2013, her younger sister Catherine, then 26, was biking to work from her home in Washington. She was hit by a car and her face was severely smashed up. She has endured and will continue to endure a series of operations. For a time, she breathed and ate through a tube, unable to speak. The recovery is slow.
The victims of trauma, she writes in a remarkable blog post for Sojourners, experience days “when you feel like a quivering, cowardly shell of yourself, when despair yawns as a terrible chasm, when fear paralyzes any chance for pleasure. This is just a fight that has to be won, over and over and over again.”
Her mother, Mary, talks about the deep organic grief that a parent feels when they have lost one child and seen another badly injured, a pain felt in bones and fiber.
But suffering is a teacher. And, among other things, the Woodiwisses drew a few lessons, which at least apply to their own experience, about how those of us outside the zone of trauma might better communicate with those inside the zone. There are no uniformly right responses, but their collective wisdom, some of it contained in Catherine’s Sojourners piece, is quite useful:
Do be there. Some people think that those who experience trauma need space to sort things through. Assume the opposite. Most people need presence. The Woodiwisses say they were awed after each tragedy by the number of people, many of whom had been mere acquaintances, who showed up and offered love, from across the nation and the continents. They were also disoriented by a number of close friends who simply weren’t there, who were afraid or too busy.
Anna and Catherine’s father, Ashley, says he could detect no pattern to help predict who would step up and provide the ministry of presence and who would fumble. Neither age, experience nor personal belief correlated with sensitivity and love.
Don’t compare, ever. Don’t say, “I understand what it’s like to lose a child. My dog died, and that was hard, too.” Even if the comparison seems more germane, don’t make it. Each trauma should be respected in its uniqueness. Each story should be heard attentively as its own thing. “From the inside,” Catherine writes, comparisons “sting as clueless, careless, or just plain false.”
Do bring soup. The non-verbal expressions of love are as healing as eloquence. When Mary was living with Catherine during her recovery, some young friend noticed she didn’t have a bathmat. He went to Target and got a bathmat. Mary says she will never forget that.
Do not say “you’ll get over it.” “There is no such thing as ‘getting over it,’ ” Catherine writes, “A major disruption leaves a new normal in its wake. There is no ‘back to the old me.’ ”
Do be a builder. The Woodiwisses distinguish between firefighters and builders. Firefighters drop everything and arrive at the moment of crisis. Builders are there for years and years, walking alongside as the victims live out in the world. Very few people are capable of performing both roles.
Don’t say it’s all for the best or try to make sense out of what has happened. Catherine and her parents speak with astonishing gentleness and quiet thoughtfulness, but it’s pretty obvious that these tragedies have stripped away their tolerance for pretense and unrooted optimism.
Ashley also warned against those who would overinterpret, and try to make sense of the inexplicable. Even devout Christians, as the Woodiwisses are, should worry about taking theology beyond its limits. Theology is a grounding in ultimate hope, not a formula book to explain away each individual event.
I’d say that what these experiences call for is a sort of passive activism. We have a tendency, especially in an achievement-oriented culture, to want to solve problems and repair brokenness — to propose, plan, fix, interpret, explain and solve. But what seems to be needed here is the art of presence — to perform tasks without trying to control or alter the elemental situation. Allow nature to take its course. Grant the sufferers the dignity of their own process. Let them define meaning. Sit simply through moments of pain and uncomfortable darkness. Be practical, mundane, simple and direct.
Ashley and Mary went to Afghanistan a few months after Anna’s death. They remember that as a time out of time. They wept together with Afghan villagers and felt touched by grace. “That period changed me and opened my imagination,” Ashley recalls. “This thing called presence and love is more available than I had thought. It is more ready to be let loose than I ever imagined.”

 

Surviving Christmas

Surviving Christmas

Christmas – the time of year that most bereaved people dread. With its emphasis on family life, traditions and togetherness, the bereaved feel the loss of their loved one more keenly than ever and the empty chair is at it’s most conspicuous. For those whose loved one became ill and/or died around Christmas – well, it’s even harder.

Christmas has been evident in the shops for quite a while now but it was partly camouflaged by the Halloween stuff. Now that Halloween is over, there is no holding back – the commercialised side of Christmas is in full swing.

I went into my local Chemist today to collect a prescription and was confronted by all their Christmas stock – the tears started to sting my eyes. Leah loved Christmas, she would have loved looking through all the gift sets on display, selecting gifts for friends and family.

I was unfortunately a captive audience in the Chemist today, due to having to wait for the prescription. My emotional distress started to escalate.

The sales assistant was pleasant and friendly. She suggested that myself and another customer try out some perfume samples while we were waiting. This was just too much for me, Leah loved perfume.

There was a delay on the prescription so I excused myself and headed for the privacy of my car, pulling up my hood as I walked, to shield my tear stained face from passers by.

Last Christmas the Northern Ireland Cancer Fund for Children gave us tickets for our whole family to go and see Peter Pan in the Millennium Forum in Derry.

We had to get special permission from Leah’s consultant for her to be allowed to attend, thankfully he said yes. Now that the children are older (aged 10 – 19yrs at that time) it was relatively unusual for all six of us to do something together away from the house.

Miriam, our 10 year old, was particularly excited. On the way there she said “Mummy, is this the way it’s going to be from now on? Are the six of us going to be doing more things together as a family?” I replied happily “Yes, that’s right.”

During our 14 weeks in Bristol, Leah and I had missed our family so much, that family togetherness was now even more precious than it had already been. That pantomime turned out to be the last thing that the six of us went to together.

We arrived a bit early because my husband dropped us at the door and then went off to park the car. This explains the empty seats and the preoccupation with mobile phones!!

image

There were other families at the Pantomime also who were battling childhood cancer. During the interval I was chatting to another family, their wee boy was called Niall. He sadly lost his battle with the illness in April ’14.

I think it’s fantastic that charities like the Northern Ireland Cancer Fund for Children help families like us to make happy memories with our ill children, when things like pantomimes are the last things on our minds.

Two weeks before Christmas my sister-in-law asked if any of us wanted tickets for the community carol service in the Arts & Cultural Centre in Limavady on Monday 23rd December. I said no, thinking that Leah was too unwell to attend, but of course you couldn’t keep her down ( or in) – it turned out to be the last function that Leah ever attended.

Leah really enjoyed attending that Carol Service and I’m so glad that she went. Her sister brought her home but by the time they got to the house, Leah was crying with the pain from her spinal fracture. Earlier that month an X-ray of Leah’s thoracic spine had shown a small spontaneous infracture between T6 & T8. Leah was at times totally incapacitated by the levels of pain that she was experiencing. We were told that this level of pain could not be explained by such a tiny fracture.

On Friday 27th December Leah became very unwell and had an emergency CT scan of her lungs which resulted in her being admitted to the Cancer Centre at Belfast City Hospital. On Saturday morning 28th December Leah was crying with the pain in her back and the nurses and physiotherapist on the ward in the Cancer Centre expressed surprise when I informed them of her spinal fracture.

Leah’s breathing deteriorated on Saturday afternoon and she was transferred to ICU and became critically ill. The next day (Sunday) our haematologist informed me that the CT scan that Leah had done on the Friday showed that it wasn’t just a “small infracture” of the spine that Leah had but a “wedge compression fracture” between T6 & T8. This explained the degree of pain that she had been experiencing. I was devastated when he told me this, thinking about my beloved daughter and her broken body, thinking about how she had smiled and kept going through so much pain.

Leah’s pain was always well controlled in ICU.

Leah’s spontaneous spinal fracture is the one symptom that no one has never been able to adequately explain. She was a fit and healthy girl – other than her diagnosis – before her treatment started in July ’13. She was only on steroids for three months. Leah was already off steroids by the time she had the first X-ray that diagnosed the fracture initially in early December.

One of our consultants told me that if Leah had lived, she would likely have gone on to develop problems with her hips and knees as well. He said that she would possibly have faced a lifetime of hip and knee replacements.

So……….Christmas.

I’m terrified of when some “unknowing” person uses that Northern Irish phrase and says to me “Any word of Christmas with you?” I will just feel like bursting into tears, but if I’m at work I shall have to smile sweetly and respond appropriately.

Yet, I have to remember that the God who has got me this far isn’t about to abandon me now.

I have to remember that the many precious promises in God’s word are for the hard times, not just the easy times. Verses like:

2 Peter 1:3
His divine power has given us EVERYTHING we need for a godly life through our knowledge of Him who called us by His own glory and goodness.

Psalm 23:1
The Lord is my Shepherd I shall NOT want

Philippians 4:19 (KJV)
But my God shall supply ALL your need according to His riches in glory by Christ Jesus.

image

Sometimes we have to just hold on by the tips of our fingernails.

This is a song that a good friend introduced me to recently – listening to it brings me a lot of comfort.

MY TROUBLED SOUL, why so weighed down?
You were not made to bear this heavy load
Cast all your burdens, upon the Lord
Jesus cares, He cares for you


Jesus cares, He cares for you
And all your worrying
Won’t help you make it through
Cast all your burdens upon the Lord
And trust again in the promise of His Love

Chorus
I will Praise the mighty name of Jesus
Praise the Lord, the lifter of my head
Praise the Rock of my Salvation
All my days are in His faithful hands

God’s Provision

God’s Provision

image

Leah’s first blood test was on the 31st December 2012 and she did not receive a final diagnosis until the 19th April 2013.

Paediatric myelodysplasia with monosomy 7 is quite rare, occurring in approximately two per million children and it can be quite difficult to diagnose.

During the time that Leah was having investigations we were told that our approach was to be one of “watchful normalisation” i.e. we were to keep Leah’s life as normal as possible but at the first sign of an ache, pain, cough or cold we were to phone the 24hr helpline at the Sperrin Oncology/Haematology Unit at our local Altnagelvin Hospital immediatly.

If Leah needed to travel overnight beyond the jurisdiction of our local hospital I was to send written instructions with her to ensure that whatever hospital she was taken to would immediately phone the Sperrin Unit for advice on her care.

Leah was scheduled to go on an activity weekend with the Girl’s Brigade to the Share Outdoor Activity and Adventure Centre in Lisnaskea in Co. Fermanagh exactly seven days after she received her diagnosis. I checked with our local hospital consultant what exactly I needed to put in the letter that would go with her. He expressed some concern about her going. I said that she had been looking forward to it for weeks, especially since she had to drop out of her silver Duke of Edinburgh hike because of her severe neutropenia. I reminded him of his stated policy of “watchful normalisation“. So then he said “well I suppose there would be no harm in her going and watching the other girls taking part.”

I remember that as the bus pulled away from the church on Friday 26th April another parent said to me “Don’t be worrying, Leah’s in good hands.” and I replied “I’m not capable of worrying because I’m still in shock from her diagnosis – I can’t even think straight.”

Leah came home from the GB weekend on Sunday and happily informed me that she had PARTICIPATED IN EVERY ACTIVITY. I nearly had to be worked with.

As the days and weeks went by and I realised how weak Leah’s immune system really was and how risky it had been for her to go on that weekend and take part in every activity, especially when she was geographically so far away from a specialist haematology/oncology unit if she had become unwell, I felt terrible for having exposed her to such danger.

Now however I thank God that Leah got to go and have fun and be with some very special people at a time when she was dealing with the worst possible news she would ever receive. Leah had been in the Girl’s Brigade since she was three years old and it was such a big part of her life. I know that the GB weekend in the Share Centre meant so much to her. I look back now at so many things that happened along the way and marvel at how, in the midst of Leah’s illness and our distress, God was always providing what was needed.

Obviously we would have much preferred if Leah had been healed, but that choice wasn’t ours to make. As Rev Craig said at Leah’s funeral, some things in life will always remain a mystery. However, the sense of timing and of God’s provision in Leah’s short life continues to amaze me.

And my God shall supply all your need according to His riches in glory by Christ Jesus.”
Philippians 4:19