Monthly Archives: July 2011

Crossroad

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“Stand at the crossroads and look;
ask for the ancient paths,
ask where the good way is, and walk in it,
and you will find rest for your souls.” Jeremiah 6:16

I woke up heavy. Like a layer of fat had floated to the surface, clogging my heart. Sometimes you can’t see the way through or the point of it all. My dreams are stirred with thoughts of my friends and the battles we face and my inability to do anything. I hear His whisper before the alarm. I tell Him it’s cold, it’s dark and I want to stay in bed. So He hovers. He waits. He knows my anxious thoughts.

Below the surface is an ocean of calm.

“Come,” He says, “let’s sit for a while.”

How can I resist His voice?

So I throw back the covers and my husband stirs. “Where are you going?” he asks.

“Time to pray,” I say, dragging my body from the bed.

I stare into the dark pot that is my life. It is fragrant still but it is chilled.

“I’m not sure if I can get the warmth back,” I tell Him. “So many sad and difficult stories, will it never end?”

He listens. He is not in a hurry.

I fold my arms. I am not ready for His words. At the moment, none of them make sense.

I’ve been foraging for answers, digging deep in His word, trying to grapple with the concept of preparation. There is something, someone once said, I know not who but it goes like this: “God never wastes a prepared life.” I don’t want to be prepared, or set apart. I no longer want to run with the message or bring hope, or inspire anyone. I just want to be left alone.

“Oh, I see,” He says before I utter a word. He smiles at me like I am a petulant child. Perhaps I am.

“It’s true,” I tell him. “Look at it, it’s revolting in there.”

“Like in the cistern where they threw Jeremiah!” He comments, knowing I’ve been reading the stories of the men who got an audience with their king.

“It’s not fair! Why does the battle always need to be so big?” I honestly don’t get it.

He laughs at me, this time. And I smile and then I frown. I picture Jeremiah. He is doomed. Sinking deep into the mud because he warned the people to leave the city. “It doesn’t pay to help others,” I say. “It just gets you into trouble.”

“Many are the afflictions of the righteous but I will deliver them out of them all.” Psalm 34:9

I know this. I know He is faithful. He is my deliverer. He sends in help every time. It only takes one person “to stand at the junction of two departments, or fill in the gap between departments. Ronald Burt of the University of Chicago has a concept he calls structural holes. In any society there are clumps of people doing certain tasks. But between those clumps there are holes, places in between where there are no people and there is no structure.” (Brooks, p 157, 2011). This book I am reading, The Social Animal, fascinates me.

Sometimes we find ourselves stuck in the holes between two places. I feel like I live my life there these days. I am trying to find my use between existing structures, to find my voice when the door feels closed in my face. I discuss this with Sam’s oncologist.

“There is so much need and no knowledge,” I tell him and he agrees. “It only takes one person, someone like you, to be at the forefront of making things happen. Herein lies the frustration of the rest of your life but you can change things. I can help you with the research,” he says. Turning on his desk chair to face the enormous screen of his Mac, he types something into his wireless keyboard and then tilts his screen to my view. “This is where I would begin.” I copy down the site address. He wishes me all the best and decides to not charge me for today’s appointment.

“He’s so nice,” Sam says as we make our way to the lift for the next specialist.

When you chose to stand in the gap, people always come alongside you. Though your heart is heavy and burdened, though you’d prefer to walk away, though the residue of cold lard has risen to the surface, you know if you remove the excess and keep going, you will find a way through.

Ezekiel 22:30 says it like this: “I looked for a man among them who would build up the wall and stand before me in the gap on behalf of the land so I would not have to destroy it, but I found none.” God is in the business of rebuilding walls. He shows His servants how. He connects you, He equips you, He releases you. Sometimes it requires that you say nothing until you fully examine the situation. Nehemiah travelled by night to inspect the walls and gates of Jerusalem that had been broken down, destroyed by fire and found places where there was not even room to get through. People mocked him, he was ridiculed but he knew the gracious hand of his God.

In every season God is faithful. When the time is right, He positions us. On that day, we need to be ready, just as Daniel was when he was called to translate the writing on the wall. I ponder this thought. Am I ready? Do I know what to say?

I feel the warmth of His company; my cold, hard heart begins to melt. He’s taking off the lid, He’s reaching for the large, flat spoon and He scoops the residue off the surface.

“It’s okay,” He tells me. “You are ready, you’ll be fine.” Then he passes me the spoon.

“Taste and see that the Lord is good, blessed is he who takes refuge in Him.” Psalm 34:8

He has gone and it’s time for my shower.

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The thin thread


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On Wednesday the 8th of June 2011, I connected with Sasha for the first time since 2009. We made a few attempts at connecting before this. Little things – ‘likes’ on Facebook, a couple of messages, nothing more – but that thin thread that wove us together in the corridors, first at RNS and then at St Vincent’s, was always visible in my mind. Not a day passed that I didn’t think of her, that I didn’t wonder if more could have been done.

We met for the first time in March 2009, in the waiting room, amidst the old people in slippers and dressing gowns taking up all the chairs. I saw Sasha and Michael talking to each other as they walked down the corridor. This stunning girl with olive skin, enormous eyes and long, auburn hair and this pale thin man, agile with his drip pole, waltzing towards us. They laughed as they approached and her teeth shone as she threw back her head. I liked this girl from the outset. I wanted to talk to them, excited for company, but I was apprehensive and protective of Sam. That day was the first time Sam and I saw any people, apart from the nursing staff, who were younger than me. We had been in and out of hospital everyday for two months.

We didn’t go out of our way to make friends with the other patients, mostly because they were old and frail and had nothing in common with Sam, just Leukaemia. We had no desire to compare notes or diagnoses or treatments with other patients. Sam never wanted to acknowledge Leukaemia. We didn’t talk about her condition, or the doctor’s words, or the overwhelming amount of literature they gave us. “You read the stuff,” she said, “and just tell me what I need to know.” I read everything I could get my hands on: every A4 sheet, and every booklet from the Cancer Council, every leaflet in the drug packets that listed possible side effects. I kept them all together with the print outs of her daily blood results and the Centrelink forms until the folder bulged. I even bought sleeves and dividers to try to bring order and control to a life that was falling to pieces.

It was Michael who initiated our first conversation, as we sat in the purple tub chairs under the 1980s style mural painted on the waiting room wall. “So,” he started, “what kind of cancer?” He was so loud and confident that it felt like an invasion of privacy at first. Then I realised that Michael had cancer too. His head was completely bald, his flesh pale, his drip stand loaded with imeds and his loose track pants hanging from his hips.

Sam responded in a quiet, friendly voice that she had ALL Leukaemia.

“Oh, ALL,” he said. “It’s a bugger. Did you get any Centrelink yet?”

I felt uncomfortable but Sam seemed to be enjoying the company of young people and had started to ask Sasha questions. They sat with us, told us their names and Sam and Michael began to exchange stories: how they had been diagnosed, where they lived, their dreams for the future. I watched and listened. These were the first people we had spoken to who faced a similar ordeal. Michael had Acute Myeloid Leukaemia, and he was diagnosed on his 29th birthday. Sasha was 23 and they had just got engaged. Michael had a different protocol to Sam but the same doctor, and he entertained us with impersonations of our haemotologist’s gruff voice and sadistic nature.

We laughed so hard. It was surprising and delightful to see Sam engaged in conversation and smiling. Her whole face lit up. It was the first time I realised how lonely we had become. It’s funny how people turn up in your life just at the right time. It was the right time for us to meet Sasha and Michael and to begin the parallel journey down the path of beating Leukaemia.

The journey continued until August when Sam was transferred to St Vincent’s. Michael was still waiting for his donor to be found. He wasn’t offered much hope because his mum was Lebanese and his father Australian. People of ethnic minority are disproportionately represented on the Australian Bone Marrow Donor Registry. In spite of the lack of hope, Michael was the most positive person I have ever come across. I don’t think he ever stopped believing he’d find a way through; but he lost his battle on October 17, a month after Sam was discharged from hospital. Her transplant had been a success.

With gratitude there is also great grief. I’ve never gotten over the fact that Michael didn’t make it. I’ve never come to terms with the fact that with more donors, more lives could be saved. I’ve never understood why there is so little publicity, so few donor drives and a lack of education surrounding bone marrow transplants. I’ve wanted to tell Michael’s story in the hope that people of ethnic minority would donate stem cells; but to do this I needed to talk to Sasha.

So we talked. We spent two days together huddled in a café filling each other in on all the missing pieces of our parallel lives. We cried, we hugged, we sighed. We agreed that Michael’s story needed to be told. My next plan was to get my facts relating to stem cell donation correct. In the process I’ve made some great discoveries, but also hit many walls. There is a lack of funding, a lack of awareness, a lack of donors, a lack of campaigns and a lack of people prepared to do anything about it. Or so it feels.

Sometimes you just haven’t knocked on the right door yet. So you push through and without warning, the familiar thin thread appeared amongst the bracken and the undergrowth. You would have missed it entirely if you weren’t looking down at your feet. Feeling forlorn and frustrated, seeing no way through, you’d begun to kick at the stones and let the damp soil muddy your toes.

You knew the forest was dark, the foliage dense; but you hadn’t expected the resistance to come from those you were trying to support. You didn’t anticipate the transparent canvas would block your path, prevent you from entering. You didn’t expect the shield that it became; and so when the thread appeared on your path, you did nothing at first.

You desired to hold its coarse grain between your fingers, to follow it, to find where it led; but you’d learned by now that there is some wisdom in being cautious. That very thread may tighten the spring in the canvas, propelling you back down the path from where you came.

So you consider the thread and you imagine the possibilities if this one thread could be worked loose. Perhaps there is still a way through. Perhaps the weaver erred. Perhaps the weft didn’t quite make the loop over the warp at the end of one of the rows. Maybe if you handle this correctly you’ll pry open a small hole, just enough for your finger to poke through.

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Going Back

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“Jesus loved Martha and her sister and Lazarus. Yet when he heard that Lazarus was sick, he stayed where he was two more days.” John 11:5-6

I’ve always wondered why Jesus waited. I’ve heard many things said about this over the years. Recently I’ve developed my own theory. It’s not easy when the people we love get sick. It is overwhelming, we feel inadequate and we don’t know what to do. We go to all sorts of places in our heads. I know I do. I tell myself that the sickness will pass, that it won’t be serious, that people know I am busy and they won’t expect me to help. I think of all the other people that I know who are helping and I go to a place of denial. I pretend that it isn’t really happening. Denial is a wonderful way to ease our conscious. We make all sorts of excuses don’t we!

We know that when we wade into a situation, when we become more informed, then we are going to feel responsible to help somehow. We already feel responsible for so many things and the burden of another person’s problem is too much. Maybe Jesus thought that if he waited a bit longer the situation would pass, that somehow Lazarus was going to get better without him having to intervene. I read this passage the other day and for the first time I realized that going back to Judea was difficult for Jesus. I know this because when he finally decided that he should go to see Lazarus, his disciples said, “a short while ago the Jews tried to stone you, and yet you are going back there?” I love Thomas. He said, “Let us also go, that we may die with him.”

Maybe Jesus was anxious about going back and what it was going to be like for him. It’s hard to go back into some situations isn’t it!

When Sam first got diagnosed with Leukaemia everyone wanted to help. Sam’s friends used to say, “Whatever you need just let us know.” What we really mean is, “I have no idea how to help you but if you can think of a way I am willing.” Often we are willing but we honestly don’t know what to do. I remember the nurse who headed up the bone marrow transplants used to say to Sam, “If your friends want to help tell them to donate stem cells.” Back in the beginning I didn’t really know what that meant. I didn’t know then that without stem cells Sam would eventually die. I guess we were like Jesus was about Lazarus. We were completely in faith that “This sickness will not end in death.”

It took us from late January to early May 2009 to discover that the chemotherapy wasn’t enough to cure Sam of Leukaemia. We had done all the preliminary tests to see if Emma or Jack were a sibling match, like the 30% of siblings that are. When we made the discovery that neither of them were a match for Sam we didn’t feel too concerned. We were still ignorant about Leukaemia and how it steals life; we didn’t fully comprehend the risks. When we did finally comprehend that Sam needed a donor to save her life the transplant nurse reassured us that being Caucasian she had a high chance of being successful in finding one. I know now that this chance was 85% because the American and German registries have many donors who are Caucasian. Four months later a donor was found. Sam’s donor had joined the registry in America because his wife’s friend had Leukaemia and he wanted to help her somehow. He wasn’t a match for his wife’s friend but two years after joining the registry it was discovered that he was a match for Sam.

I don’t want to think about what life would be like for us now if that man had never joined the bone marrow registry in the USA.

The other thing the transplant nurse said to us was that when Sam was better we wouldn’t want to come back. She said, “All the young people say they will come back so that they can encourage others that eventually life gets better again, but they never do. It’s too hard,” she said, “you won’t want to remember what it was like here.”

Those words stuck in our memory and recently Sam and I decided to go back. We felt sick with anxiety even parking the car. The cool wind in the forecourt at the entrance to the hospital was chilling. We waited for the lift in silence and we laughed in recollection when it got stuck on level 8. “They still haven’t fixed that,” Sam said and I held her hand to ask if she was okay. We didn’t really want to go back. We didn’t really want to face the corridors where we waited for 8 months for a donor to be found but we did want to say thank you to amazing nurses who helped us get through.

We made our way round to the ward and saw our favourite nurse heading towards us. “Oh Gawd,” she said, suddenly recognizing Sam as if she were a ghost. It is nearly two years since we transferred from RNSH to St Vincent’s for the transplant. “You said I’d never come back,” Sam said, “and I was always determined that I would.” They hugged and chatted, shared stories and updates. I stood watching the exchange immensely grateful for my daughter’s life.

Going back isn’t easy but sometimes it saves lives. I am reading “Half the Sky,” by Nicholas D. Kristof and Sheryl WuDunn, it talks about human trafficking and tells the story of a girl called Rath who escaped one of the brothels. When asked if she would go back to Kuala Lumpur to try to help locate the brothel so that some more girls could be set free the author says “she turned ashen. ‘I don’t know,’ she said. ‘I don’t want to face that again.’ She wavered, talked it over with her family, and ultimately agreed to go back in the hope of rescuing her girlfriends.”

Sometimes going back to the place where our lives were threatened brings freedom to others. Jesus told his disciples, “A man who walks by day will not stumble, for he sees by the world’s light. It is when he walks by night that he stumbles, for he has no light.” John 11:9-10

When we return we have knowledge we didn’t have when we were in the situation and that knowledge is vital to helping others be free. When Sam was first diagnosed we didn’t know that without an available donor many Leukaemia patients die. We didn’t know that the Australian Bone Marrow Donor Registry was small or that Australians of mixed heritage are very unlikely to ever find a match. We didn’t know that we would walk the corridors with people who had their whole lives ahead of them only to watch their names erased from the white board beyond the nurses station because their donor was never found. We didn’t know then that it was simple to become a bone marrow transplant donor.

In the beginning we thought bone marrow donation was a barbaric painful operation that involved drilling into the hip bone. We know now that to become a bone marrow donor initially involves giving a small sample of blood. We know that this blood is ‘tissue-typed’ and the information goes into a computer system to see if anyone in the world matches this sample. We know that it could be a week, or a month, or a year or even a few years before they ever find someone who matches the donor. We know that one in 1000 people who donate stem cells may never find a match but if they are a match we know that giving bone marrow is now almost as simple as giving blood. It’s a lot of blood. It may take about 4 hours to give but you will go home afterwards feeling a little tired but I dare say very pious that you’ve just saved a life. You could save a life right now.

As a result of Sam and I going back we also know that there is a boy at RNSH right now who is desperate to find a donor match. For the sake of his privacy we will call him Dan. He is young like Sam and his mum is on a mission to find him a donor. You never know, you could be his match but unless you go to donate stem cells he could be the next name erased from the white board.

When I read about Jesus returning to visit Lazarus the other day I saw the story in a whole new light. Sometimes I forget that Jesus was just like me when he walked the earth. He gets what we are going through. Hebrews 4:15 reminds me, “We do not have a high priest who is unable to sympathize with our weaknesses, but we have one who was tempted in every way, just as we are – yet without sin.” When Jesus got to Judea he told the disciples to roll the stone away. He waded right in to the depths of the dark cave where death was. It would have been so much easier to just ignore it, to have stayed away, to have gotten on with his life but Jesus knew Lazarus life could be saved.

Is there a situation that could be saved if you were prepared to wade back in?

Can you donate stem cells? More information here.

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cracks

working together

I was already awake when her call came. My intuitive mother voice had woken me, or was it the fear that hovers over my subconscious mind when things going even mildly wrong? I‘m trying to learn to face me fears, instead of trying to outrun them with activity in the hope they’ll never catch up. I’m practising being still long enough to remove the things that render me powerless, to tackle things headlong and release myself from fear’s grip.

For the last week Sam’s eyes have been sore and the voice in my head tells me that the GVHD is getting worse, that we won’t be able to lower the drugs. I’ve just emailed a friend rejoicing that this has been the first time ever that we haven’t had to dash back to the hospital between visits and suddenly it seems I spoke too soon.

At first I could not understand what Sam was saying, her words were muffled by her own anxiety.

“Slow down. I’m up. I’m coming.” I tell her. “Is it your eyes?”

“No it’s my hand, it’s completely numb.” I throw on jeans; rush to her room and after lathering her hand in soap and then smothering her fingers in oil we establish that the only way to get her throbbing hand back to normal is to take her to emergency and cut off her ring. She explains in the car that she slipped the ring on before the party last night. She’d never worn it on that hand before and it only felt a little tight at the time. She woke in the early hours with the loss of sensation to her hand, like pins and needles and noticed the ring squeezing her finger making it swell and throb.

In emergency, we were the only ones there but still we had to wait. I felt my desire to take control of the situation burn within me. I’m frustrated. This week I’ve had two encounters with challenging women and this morning in emergency was my third. I’m very aware of feeling powerless and I am tempted to take matters in my own hands but I am also trying to hear God’s voice, to learn the unforced rhythms of grace, to keep company with God and learn to live lightly and freely. (The Message. Matthew 11: 29 – 30). I’ve been trying all week to draw the distinctions between the women that God anointed and those who stuffed up. I want to be in the category of the former and I’m having lots of opportunities to practice. I’m not enjoying this at all.

I’ve read about Eve (Genesis 2), Sarah (Genesis 18), Rebekah (Genesis 24 & 27), Deborah (Judges 4), Ruth and Naomi (Ruth 1), Hannah (1 Samuel 1), the widow (1 Kings 17), Jezebel (1 Kings 21), Esther (Esther 2 & 4), Mary and Elizabeth (Luke 1 & 2) and Mary and Martha (John 11).

In my early morning research I’ve been trying to identify the patterns, to draw distinctions and to create theories. From my own life experiences I’m learning that things work out best when I prepare, when I listen to His voice, when I let go, when I serve, when I consider the needs of others, when I seek understanding, when I am patient and when I am still. Yet even in the knowledge of this there are things that trigger the wrong response in me causing me to take matters in my own hands, to react, to speak up, to be angry and to take control.

This morning I was angry when the lady at emergency told us to wait, that she had no ice, that there was an order for things. Brene Brown says, “Powerlessness is dangerous. For most of us, the inability to effect change is a desperate feeling.” All I wanted to do was to get that ring off Sam’s hand and there was nothing I could do. There was nothing I could do when the woman at the gym told me I needed to listen to her presentation before I asked any questions about joining, there was nothing I could do when the woman putting her baby in the car next to mine knocked the door of my car with hers then accused me of crashing into her, there was nothing I could do when the registration for the conference I wanted to attend was closed. Sometimes there is nothing we can do and in the place we are confronted with choice. Fortunately for me my morning readings have illustrated loud and clear the consequences when we choose to manipulate, conspire, or do things our way. So instead of causing a scene I thanked the lady at the window and sat down.

Sometimes things don’t fit do they?

We don’t want the circumstance we are in. We want to take control, we want to change things, we want the dainty ring to slide off easily. We want to know how much it costs to join the gym before the spiel, to convince the woman who is irate and accusing us, that it wasn’t our fault. We want life to flow seamlessly. We don’t want it to challenge us and make us uncomfortable.

When things don’t go the way I plan I feel a wall slowly rising from the pit of my belly stopping only when it is over my heart. A protective valve operates within me, it’s triggered by discomfort and the shield covers me, it changes me. I become defensive. I feel stuck. Blood rushes to my face in the same way I see the blood causing Sam’s finger to swell. I can’t think straight. Instead of kindness, gentleness and self-control all I can hear are all the reasons why I am right and why the situation is so wrong.

Once a month I meet with women who love me. We share food, we laugh, we discuss God’s word, we talk about our fears and we pray. My heart is unravelled in this place and the stone is turned to flesh. (Ezekiel 36: 28). I arrive home, undone, exhausted but free.

The nurse in emergency has no success removing the ring and decides to call the fire station instead. When we arrive there are three men ready to welcome us. One offers us tea as the others set to work with the tools. They demonstrate the ringing of the bells and I am not sure if it is routine or not but I think it is fabulous and I wish I had my Kindy class with me.

Slowly the gold is ground away so there is a crack in one side of Sam’s ring. Some of the swelling is alleviated but getting it off still involves more work. The band is not loose enough to slide off, so one of the men weaves string under the band forming a loop, then again at the other side of the break they have drilled. Together they pull until the band is stretched and able to be removed. Then when she is free they laugh and pass Sam a fireman teddy as a momentum for the visit.

Driving home I think how fortunate we are if we have people who surround us, who help us, who tenderly work with us until the things that limit us are removed from our life. I think about the power of kindness, the delight of laughter and the warmth of tea. I feel grateful that even something as beautiful as a rose gold ring became cracked and pulled out of shape so that my daughter’s hand could be free. I consider my need to be vulnerable and broken enough that God can use my life as well.

Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.
Leonard Cohen

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