Not Affected: finding a new doctrine for tragedy.

“Never be afraid when God brings back your past” Oswald Chambers said.   When God began bringing back my past recently, I was more confused than afraid.  But I was afraid.  What confused me is that God was bringing back such happy memories.  A series of dreams and flashbacks were reminding me of happy islands in what felt like a sea of despair. What frightened me was that the memories led to deep and persistent sorrow, to clinical depression and to a period of real struggle in my mid-life.  I had to look very deeply at my doctrine, the core beliefs and narratives that I lived my life by. For an evangelical Christian this is not easy.  Our religion gives us so many life narratives and archetypal stories. So many of our beliefs are not formed in us, but given to us from our scriptures and our forebears. We, the true believers, place the circumstances, joys and tragedies of our life in a larger story.  We are pilgrims on a journey, and we have in our faith, all that is required for the rigors of life.  But when things fall apart it, takes courage to be honest. This is my story of what happened when my life no longer went to the script I thought was written on the scroll.

It started with a dream.

In my dream we are on the beach at Coolum.  Our parents are not far, in their usual place in the picnic area behind us, keeping not even half an eye on us. I was so happy to see her again like that. Her skin was glistening with beads of saltwater, she was wild and healthy and beautiful. I looked at her and loved her with all my heart in the way children do, but only adults understand and only the passage of time can truly treasure.  Her unruly brown hair was bleached at the ends by the sun, and I could smell the salt and the sand in the oil of her skin.  Something on the sand caught my eye. There was an upside-down bucket, and as we went toward it, I was overwhelmed by a sense of foreboding. I knew the bucket contained nothing good. I warned her, “Nicky, don’t touch it”.  Always the curious, always the dare devil she carefully tilted it, and looked in. I was so angry with her then, and now as I recall, because she never listened to my cautious warnings, never appreciated my more temperate judgement.  There was a snake hiding in there and she poked it with a stick. It retaliated, and latched onto her leg, injecting her with its poison.  I was terrified and looked around to find our parents, but they were all gone.  Only now Nicky’s step father was there next to me.  I was an adult again, and he was an older man as he is now, the only one of our parents still alive. I asked him if we could get anti-venom.  I did calculations in my head to Nambour hospital, and I knew there was no hope.  My very best friend, my cousin, was dying and I was helpless to do anything but watch.

I woke with a start, safe in my bed, my husband still asleep beside me.  Soon I would wake the children for the school day.  I desperately wanted to linger on the smell and sense of her, my healthy young cousin on the beach, a scene so familiar it must have played out a thousand times, but so distant I had forgotten even the look of her, then.  Reality was bringing my mind to tasks that had to be completed, lunches to be made, uniforms to be ironed.  The list of tasks pushed back the thought of Nicky, who was dying in the waking world as in the dream world.  She was not dying on a beach; she was dying in a nursing home from Huntington’s Disease. I remembered my last visit with her and the smell of old people, of urine and of a medicated hopeless end, her body starved and writhing with muscle contractions, her rotting teeth.  Her familiar grey eyes set in a face that looked thirty years her senior. This last memory pushed me out of my bed to the better thoughts of the day.

If you wanted to find out more about Huntington’s Disease (HD) you can google “the cruellest disease known to man”.  Its cruelty lies, not just in the way it kills a person, but in how slowly it kills them.  Like a bowerbird from hell, it takes one beautiful unique thing from a person’s humanity at a time. The medical journals will tell you it starts with emotional instability.  In the family it starts with a subtle whispering that someone is “not quite themselves”. From the time Nicky and I played on the beach, to her last stretch in a nursing home, it was thirty years of inch by inch of her disappearing, until all that was recognisable was her eyes.

If it had been just her, maybe this would be a sweet story of my lost childhood friend.  But HD is a genetic disease. Mum and her only sister both carried the defective gene and they had nine children between them.  If your parent has the defective HD gene, you have 50% chance of inheriting it. Six of us in the family had tested at the time, I was the only one to have tested negative.  A negative result means that neither myself nor my children will get HD. The ill-considered medical term for this, is “not affected”. 

It wasn’t that unusual for me to have a vivid dream, what was unusual, was what followed.  A flood of vivid happy memories that had been locked away in a protective vault of my own making. I was remembering Nicky and her brothers and my own siblings as children and young people.  My Brother, sister and I were comparative ages to three of my aunt’s children, and the six us grew up as comrades in arms.  Memories were coming back in flashbacks, dreams and strange sensory rich visions. The memories always left me with a deepening sense of sorrow.  I did what I had always done, I kept moving forward, pushing things to the back of my mind, so that I could get through the day, the week, the year. 

This strategy was working fine, until about a month after the dream, when I got a call from my sister in law. She said my brother was unstable, and she was leaving him.  My brother David hadn’t tested. What we do with those who choose not to test is “symptom watch”, it adds another level of cruel uncertainty to a family life that spirals increasingly out of control. There is an entire ethic about testing, because a positive result will mean that you know how you will die.  And that the path to that death, is a nightmare show that, in the family, we have all had a front row seat to.  Of course, as we always joked, it is always possible that you could get hit by a bus.  Only in a Huntington’s family, the idea of getting hit by a bus is a kind of “best case scenario”.  

The next morning in the shower I collapsed with a bolt of grief that seemed to come straight from heaven. I crawled out of the shower, found a towel and dragged myself into bed, where I stayed all day, sobbing and praying a wrong prayer. “God, please don’t kill my brother, leave me with just one”.  That very day I made an appointment to see a counsellor from the church, because I knew my doctrine was broken.

Christians don’t believe that sickness and death come from God, we don’t believe God kills people. There is nothing more pathetic than an Evangelical with broken doctrine.  The counsellor took the issue of the broken doctrine with the humour with which I delivered the complaint.  I knew, as she did, that my assignment of blame to God was a deeper issue that was the result of poor habits, exhaustion and a measure of relentless grief and pain that I lacked the resources to process. 

I made it clear to the counsellor that I was a self-aware person, who had been diligent in doing the work to access healing and establish good habits of faith and family, and I didn’t need to go through the nightmare that was my childhood.  Having seen a control freak before, she asked me when I first saw someone take control of a situation.  I recalled a night, many years ago, when Kevin, Nicky’s oldest brother overdosed on pills at my aunt’s property on the Sunshine Coast.  I remembered my mother taking control of the situation and forcing him to drink salt water until he vomited. I decided I was going to be that person, the person who did something when everyone else fell apart.

Thirty years later I had been involved in constant family health crises’ and I had become an expert at dealing with hospitals, health professionals, bureaucracies and care facilities.  I was “the fixer” in an irretrievably broken family.   I wondered if I had taken this role to redeem myself from the sin of not inheriting this genetic defect. “Survivor guilt” they call it.  For the blame I hadn’t allocated to God, I seemed to have given myself. I hoped that the answer was in the simplistic Christian mantra of “letting go and letting God”.  

But the flashbacks kept coming.  One day I was in the supermarket and the song “is she really going out with him?”, came over the speakers. I was instantly transported to the passenger seat of Danny’s old Cortina.  Danny was Nicky’s brother and a similar age to my brother Dave. Danny’s Cortina was the crappiest car I had ever seen.  He liked to pretend it was turbo charged by flicking the demister switch on the dash and simultaneously putting his foot on the accelerator, pushing himself back in his seat as if he was subject to warp speed. Traveling from the Sunshine Coast to Brisbane, as we did regularly, he was singing the song, now playing in the supermarket, his brown muscles protruding from this 80’s style muscle shirt.  He had the confidence of a young man, who knew he was handsome and fit, and had his life unfolding before him.  I could smell him, the sweet sweat of a young man, mixed with deodorant and the excited anticipation of a few days in the big city. He turned to me with a spark in his eye, while he flicked the “turbo” switch, now yelling the song badly out of tune. He drew an involuntary smile from my shy young face as I joined him, the pair of us singing like idiots, driving down the freeway in an imaginary turbo powered supercar. When I came back to the supermarket, tears were rolling down my face. “Am I to be the custodian of our memories?”, I asked God.

I still didn’t understand why the happy flashbacks make me so sad, and why I had edited them from my memories.  When attempting to answer, the only thing I managed to confess to the counsellor, in floods of tears, was that the one common thing in all the memories is that my family would look at me with such great love. Remembering them before they were sick, before their personalities began to change, I remembered that they knew me really well, and that they loved me.  For some reason I couldn’t bear to face their love for me. 

I got the call to say Nicky was dying from Danny about two years after the beach dream.  I was at home, having just finished the evening dishes and was relaxing with my family. I could hear the panic and fear in his voice, he was trying to contact my brother Dave, and couldn’t reach him. I packed a bag and left for the Sunshine Coast.

I arrived at the nursing home just before midnight; Danny was there with his wife and they shuffled around to find a chair for me, but I jumped into the bed with Nicky’s skeletal frame.  Danny looked so happy seeing us together, “The gang is back together”, he said.  I laughed, even though we knew that this hadn’t been true since his brother had died.  By the small hours we could see Nicky would live through the night. They went home and I made a bed beside her on the floor.  As I lay there, I could hear that she was drowning in her lungs and I remembered the day I was drowning, and she saved my life at Somerset Dam.

Nicky had decided that jumping off the water outlet valves on the dam wall was a great idea.  I was not so sure. “Come on Chris, it will be fun”. Always she pushed me past my comfort zone.  Of course, she went first and did it with ease. She didn’t take into account my small frame and less than athletic disposition. Ironically, I was always considered the runt of the litter, smaller, weaker, easy to make cry, not particularly good at anything. The outlet valve was pushing out thousands of tons of water and I was drowning within seconds of hitting the water.  She jumped in to save me and dragged me coughing and spluttering from the water.  Standing on the dam wall recovering, she demanded that I thank her for saving my life.  Instead, I unleashed on her a characteristic display of public housing estate vernacular, reminding her that it was her that insisted I “jump off the fucking wall into the world’s biggest fucking washing machine”. She laughed hysterically at the unbridled abuse. Nicky loved that part of my personality more than anyone I have ever known. She loved that she knew this thing about me that others didn’t.  She knew before I did, that the fiery undertone of my nature, this fighting spirit, was a true asset in a tough world and she would go to great lengths to see it come out.  When someone would remark that I was a nice quite girl, she would let out a grunt-laugh and eye roll, all in one. She was my first peer, from her I learned about the love between girls, and women.  I was a different person because of her. Watching her suffering was unbearable but lying there with her then, was somehow where life joins closest to God.

As her breathing became more laboured, I begged the nurse for more morphine. Proponents of euthanasia say they want to put loved ones out of their suffering, but I wonder whose misery they really want to relieve. No one wants to be here, no one wants to watch this, it is traumatic, and it takes courage, fortitude and great love to endure. Danny and David turned up around lunch time.  She died, while I held her in my arms, just after twelve O’clock.  Dave, Danny and I wept and embraced and made stupid jokes sparked by pain and relief.

I got in my car and drove back to Brisbane, weeping as I had so many times before.  Back on the freeway I could smell sugar cane, even though there was none around.  Clear as day, I could see Nicky and I running through the cane fields, laughing hysterically while David and Danny chased us. As my sunglasses fogged with tears, I pushed the memory back, and kept driving. It had been years of traveling this road to visit her in psych wards and nursing homes, and before that for partying, friendship and funerals. I kept moving, I simply didn’t know what else to do.

Having been away for more than a day, my daughters soon approached me with the usual demands of teen girls. “Just give me 24 hours” I asked.  And so I was 24 hours later, back to work, back to school, back to the routine of attending to family medical issues. I still had a few years of kids schooling to see through. My sister was terminally ill with cancer and had been suffering from HD for many years. Churchill said that if you find yourself going through hell, you keep going.  It is hard logic to argue with.

A year after Nicky died, there was a family Christmas gathering at my brother Dave’s Sunshine Coast apartment. I remember seeing Danny walk in the door and spontaneously throwing my arms in the air in an exaggerated gesture of excitement.  He didn’t seem to immediately recognise me. As he walked toward me, I could see that he was showing signs of advanced HD. His trousers were falling off him, indicating that the involuntary movements were making him burn more calories than he was consuming. He looked so much like his mother. It was a generational tragedy on repeat, and involuntarily my emotional system began to shut down.

Just as a sports person can tell you, they can feel their career end in an instant when they hear the pop of a ligament tearing, I physically felt my emotional system breaking that very second. I turned and looked out toward the ocean to hide my tears. From the balcony of my brother’s apartment, I could see a unit where Nicky use to live, and the streets where we had mis-spent much of our youth. I looked out to the ocean and I wanted to dive from the balcony straight into the ocean. Not swim in the breaking waves as we once had, but dive straight into the sea where it is very dark blue. I had been keeping my head above the surface, but as I imagined myself in the cool ocean, I wanted to go limp, I was desperate to surrender to the deep. I was forty-five, I had been fighting since the day I spluttered into the world and I had nothing left.

After that day I was finding I couldn’t make simple decisions, I couldn’t cope with basic family tension.  Children’s arguments or business decisions left me confused or in tears. The crunch came, oddly enough with the movie ‘Grease’. I was watching it with my husband, and at the end, when the car flies into the sky, I began to cry uncontrollably. Not sobbing quietly, but howling, loudly and without respite. I felt there was a deep pit of insatiable grief in me. I excused myself and went to bed. The next morning, I got ready for church and at the breakfast table tried to explain to my husband why a 70’s musical had brought me to tears. “It wasn’t even Grease 2”, was his confused and funny reaction. At the end of the movie where John Travolta and Oliva Newton John sing “you’re the one that I want”, I was transformed to a moment when Nicky’s oldest brother Kevin and my older sister Andrea were trying to teach Nicky and me to dance. As the oldest, Kevin was the leader, with Andrea, of our little dysfunctional gang of six. I still wonder how we would have survived our childhood without him. Kevin overdosed when he was 25, two days after my 17th birthday.

The moment I saw Kevin’s coffin was the exact minute my childhood ended.  It was the first time in my life that I felt grief so strong that my legs began to buckle.  I was in the carpark of the church and my father was beside me.  Instead of collapsing into his arms, I braced myself, swallowed my grief, steadied my legs and looked toward the entry of church, where I knew the remainder of our group would be waiting for me inside. If someone was going to cave, it wasn’t going to be me. It was the first in a series of heartbreaks, that continued with the failing health and death of my parents in my twenties and the ongoing health issues of Nicky, Andrea and Danny. As I tried to explain the happy memory of dancing to Grease music to my husband, I descended again into uncontrollable floods of tears. We both knew that something was really wrong. This was not about my family’s suffering; it was about mine.

My GP very quickly diagnosed me with “reactive depression”. I refused to see a psychiatrist or take medication. I was not sick, I was just sad, and I would not medicate my sadness. In my mind I needed the restoration of my soul that could only come from God.  I needed resurrection power. I turned with fervent prayer and reckless abandonment to the Almighty.  I don’t remember a time in my life where I was closer to God, or when He was more silent.  All was silent, except for the sadness that sat on me with the weight of super gravity, gluing me to the sofa.

Psalm 23 tells us that in the journey to soul restoration, that He makes us “lie down” in green pastures and leads us beside “still waters”. It was here in deep depression that I found sometimes we have to fall flat on our face in order to be made to lie down.  More importantly, I discovered that it is only in still waters that we can see our own reflection. Sometimes as my father may have said, we need to take a good hard look at ourselves.

Thankfully the GP insisted I see a psychologist, and one that specialised in HD. It wasn’t long before the depression became so severe that I went back to the GP and asked for the medication I had so arrogantly resisted. I had become completely unable to function.  I couldn’t work or participate in family life in any meaningful way. I lay on the sofa or in bed for most of the day, and only rose to drive kids to one place or another, mostly in my pyjamas.  I avoided all social engagements and was becoming phobic of crowds. 

The medication was a mild anti-depressant, and taking it marked the beginning of a long recovery that taught me some surprising lessons.  The first lesson was that just because you have been able to pull yourself up before, doesn’t mean you will be able to pull yourself up again. It’s the verse that is read at weddings, that most Christians know off by heart;

Two are better than one, because they have a good reward for their labour. For if they fall, one will lift up his companion. Ecclesiastes 4:9

In almost twenty five years of marriage this was the first time I really relied on my husband to pick me up, not for the sake of our children, not for the sake of our business, not for any reason other than I had fallen down and I couldn’t get myself up. Sometimes the answer is in the people God has already given you.

The next lesson came through the psychologist that I said I didn’t need. I recounted to her how I had been a mess on coming home from the death of Nicky and even though I took a day off, I couldn’t seem to push past the sadness after that.  “Why” the psychologist asked me, “did you think that it was a sensible expectation that you would be back at work after a day?”.  A key lay in my quick answer, “because falling is not an option. No one recovers from falling in my family”. Right there I realised that even though I didn’t have HD, I had let it write the narrative.  HD is a falling illness.  In my family we just keep going until we fall and falling is always the end. My mother and every ancestor before her on that line carried a defective gene that led to insanity and the slow painful death. Even though I didn’t carry the gene, something in me was running a time bomb. A belief had been implanted in me that I had to keep running. This was leading me to unrelenting service, chronic exhaustion and a strange editing of memories from my life.

From the moment I swallowed my grief at the sight of Kevin’s coffin till when I collapsed in a useless heap, I was managing my grief with persistent forward movement. You can’t just keep running, because grief is a long-distance athlete. After a few months of rest and honest self-assessment, I repented to God for having abused my body.  It wasn’t my fault, but it was my responsibility to manage my own emotional life.  As soon as I did this, I could feel the healing begin almost immediately.  But there was a long way to go.  It wasn’t as simple as “letting go” and “moving on”. 

I wasn’t just a control freak.  As the winner of the world cruellest lottery, I had taken a role on in the family that was not always popular.  The one who had to tell people that their behaviour was falling outside of the normal, that they needed more care, that they couldn’t behave in bizarre and cruel ways.  The relationships in my family had become distorted into roles of service, defensiveness, tension and anger.  Both my mother and my sister bitterly disinherited me from what remained of their meagre possessions.  Nicky cancelled my power of attorney that I had arranged to manage her affairs and keep her independent.  But I was the one there at the end, it was me when their was an emergency, when they needed to be driven, or needed money, or when someone had to be with them when they died. 

As a Christian, I forgave them, I sought renewal of my spirit, I kept looking within to the love that remained for them and the knowledge that they were broken.  I was a little bit ashamed to be looking forward to the time in my life when I could let go and move on, because I knew that would be when they were dead. After Nicky died, I was shocked to be so absolutely bereft.  Even in that level of depression I had to dig deeper as Andrea was dying and I knew my role in the family was to walk her through it.

Andrea and I had been “estranged” for a few years because she was, as I told everyone, “a pain in the arse”.  It was of course a deflective joke that meant that my relationship with her was a source of deep and ongoing pain. Mentally ill people are frequently relentlessly cruel to those who are closest to them.  I took her to the last appointment with the oncologist when she had decided there would be no more treatment. We all agreed that death by cancer was a mercy.  Driving her home, Peter Gabriel and Kate Bush were singing “Don’t Give Up” on the radio.  “I love Peter Gabriel” I said.  “Really?” she asked “I didn’t know that”.  “Yes, this album, ‘So’ was the first CD I ever owned, I bought it before I even owned a CD player”.  “I never knew that about you” she said.  It was the first conversation we’d had in many years that wasn’t about her. 

On her last night it was just her and I in the hospice.  She asked for toast and I reminded her that she always took one bite of the toast before she cut it, before the butter melted. I asked her if she remembered who taught her that, she looked at me with simple childlike love and asked, “you did?”.  I hadn’t, but they were her last words. I curled up beside her and cried as she entered her last deep sleep.  They gave me a little bed beside her while I waited for Jesus to take her.  There alone at night with her, I was her baby sister sleeping beside her as I had for so many years and I forgave her unreservedly.  It was hard to accept and finally I knew why the flashbacks were so confronting and why it was my family’s love for me that I found hardest to face.  It was this reciprocal consensual connection of love that bound me to their suffering.  I could try to chose to deny it, but it wasn’t protecting me from the suffering, it was just robbing me of a truth that would bring me what I needed, resurrection.

Philosophers and theologians have argued for centuries about the nature of choice, free will and self-determination in relation to suffering.  CS Lewis tells us that suffering is a necessary part of any life that has free will.  To end suffering, God would have to enslave humanity to Himself, and love is a free choice deal.  Some atheist philosophers argue that the contradictions between human suffering and a good God are irreconcilable, because how could a good God allow this ongoing agony.  They argue that free will is an illusion and we are little more than actors in this life, hopelessly subject to biology and circumstance.  Some of this is true, my family’s sickness and my reaction to it were largely involuntary.  But the choice to love and be loved are the essence of life and my emotional system was trying to cut me off from these choices to shield me from the pain.  

Taking a functional approach to managing sickness was not wrong, it was not even conscious, I was wrong to be ashamed of it. I had been trying to manage my heart life as a zero sum game.  By editing out love, kindness, tenderness and happiness from the memories of those I was losing, I was trying to manage the monstrous size of the suffering.

Love is not all about choice, it is about participation and it is a living life force.  It is not until now I see that this consensual love is what binds us to real suffering in this life.  Suffering is not just pain, it is the ongoing mutual agony we feel in being separated from each other, from God, from our true purpose.  It’s the loss of connection or the violation of connection. Sometimes the suffering we seek to separate ourselves from is where God is manifest.

I have come to believe that we are not actors in a movie that has been scripted, nor are we gods of our own destiny.  The truth is somewhere, not so much in the middle, but in the mystery.  It is where St Paul called “a more excellent way”.  The true purpose in life lies in love relationships with each other and with God.  I had joked about my doctrine being broken, but doctrine is important and when a disconnect happens, when our stark reality conflicts with our belief system, it can cause us to lose our way.  It’s like losing a map and is not at all unusual in mid-life. Like any good explorer, I tried to track my journey back to where I lost my way. I found I wasn’t lost after all.

My doctrine wasn’t broken, it was just poorly selected.  Like many do, I had chosen the doctrine that shielded my vulnerability. That allowed me to power on, to scorn the shame, as Jesus did of the cross.  The energy of youth sometimes allows us an approach, that midlife pulls from us rather unceremoniously.  When my energy ran out, I realised that some of the orthodoxy I was clinging to was just evangelical culture, and it was strangling me. The belief that Jesus was enough, that He would heal me without the assistance of others, that I would go from glory to glory just by keep going, persisting, pushing past the pain. The idea that I could cure grief with service.  That all the answers were mine. We sometimes think that because all the questions are not answered we need to cling to certainly, to a science, to a doctrine, to a utopian dream. I worry the reader will find my conclusions mundane or contradictory, but holding mystery in one hand and orthodoxy in the other has become a new comfort zone for me.

It is now two years since Andreas death and four since Nicky died. and I have returned to a semblance of normality, but I am more fragile than I was, I’m weaker, I cry easier, I don’t hold people to as high a standard, I appreciate weakness in people and in myself. I understand sections of scripture that I didn’t really before. For instance, I know why Paul cherished weakness as a place where we see the perfection of God.  I now know that he didn’t learn that from the Jewish law, he learned that when he fell, and he couldn’t get himself up.

Paul had perfect doctrine and a fine record of service that he found of little use to him when faced with the realities of his ministry.

But what things were gain to me, these I have counted loss for Christ.  Yet indeed I also count all things loss for the excellence of the knowledge of Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them as rubbish, that I may gain Christ and be found in Him, not having my own righteousness, which is from the law, but that which is through faith in Christ, the righteousness which is from God by faith; that I may know Him and the power of His resurrection, and the fellowship of His sufferings, being conformed to His death, if by any means I may attain to the resurrection of the dead. Philippians 3:7-11

Paul didn’t consider Judaism or the law “rubbish” but he considered that the labour he gave to, and the status he extracted from his religious adherence of no real benefit without understanding of the ministry of Christ, which is in divine love. 

Only in fellowship, in relationship with God and others can we find a way to lift ourselves from the grave that suffering buries us in.  As I lay with those who suffered and died, I just didn’t seem to know how to pull myself from a grave that had become more comfortable than I cared to admit.  I am brought back to the wedding scripture.

woe to him who is alone when he falls, for he has no one to help him up. Again, if two lie down together, they will keep warm; But how can one be warm alone? And a threefold cord is not quickly broken. Ecclesiastes 4:9-12

Now as I recall laying with Andrea on those last nights, Nicky dying in my arms, holding my mother’s frail hand and my dear father’s confused eyes after his stroke, I think of the falling, the lying down and the keeping warm together, and I wonder if there is really anything more important in life than those things. To comfort in weakness, to not being alone when we fall, to laying down with someone to keep them warm, and in doing so we are joining our lives to God through this fragile mortal existence.  Jesus showed us that weakness and vulnerability are places to cherish and cradle life, even if that life is without earthly hope. It was the lives and loves that God had already given me that He was asking me to cherish, even in its leaving.

The dream I had of Nicky on the beach was signalling a change in the way I remembered her and my fading family, and the way I dealt with the helpless situation I found myself in. In the dream I thought I could warn her, that I could help, that somehow the snake could be avoided, it’s venom could be cured with fast action and a clear mind. But the life we live on this earth holds no anti-venom for tragedy.  These humans were connected to me by blood and life and love, and were precious. They were broken from the day they were conceived, but so are we all. The snake in the dream was a symbol of the serpent from the beginning of humanity. I struggled with why the genetic roulette wheel had bitten Nicky and not me, but my mortal existence is fragile also.  We naturally want to cushion ourselves from suffering. We want to deal with genetic diseases like HD by editing individuals from life with abortion, euthanasia and sterilisation. But if we take away life, all we have left is tragedy and a grave from which there is no resurrection. To chose life, to chose love is always a path of suffering.

 “Love suffers long” Paul declared. Just as I sat with my family in their time of suffering, so in my suffering, in the valley of the shadow, I was not alone.  The Shepherd walked me through, as did my husband, my children and the family of God. I am thankful for my childhood friends, for the dancing, the laughing, the mischief and for the opportunity to lie with them when they fell, wiping their mouth and holding their hands when they were frightened.  God reminded me that this fellowship, this bond of suffering is where love lives. Denying the love didn’t alleviate that pain, it just buried me in a grave that I couldn’t get out of. As I sat there with them, and in my deep sorrow, I found a deeper friendship with the Man of Sorrows, who will one day bring me home to see them again.

In the last few years of struggle, I have put on quite a bit of weight.  I have become a bit of a fatty to be honest.  So, when I got a call from my brother Dave a few weeks ago, I was on the treadmill at the gym. “Hi Dave, what’s up?”, I asked, standing on the edges of the treadmill.  “Working hard?” he asks.  “working out, in fact”.  Transitioning seamlessly out of small talk he blurts out, “so I’m not going to die from a brain disease”. I turned off the treadmill, got an anti-bacterial wipe, wiped down the equipment, got my things and calmly walked over to the foyer lounge.  “What?”.  He told me that he had been going through the HD testing and he hadn’t told me because he didn’t want to worry me. He had tested negative to the cursed gene.  He was delighted to inform me that his ex-wife was wrong, and apparently he wasn’t mentally ill, he was “just an arsehole”. I wondered if he was lying about the result. My mind was racing with possibilities.  He knew I probably could not handle him getting sick. Bizarrely, I asked him for the gene count.  When he told me, I knew he wasn’t lying. He wasn’t going to die from HD, neither were his children. Involuntary tears began escaping my eyes as I attempted to compose myself in the middle of the busy gym.  After asking a series of questions about his kids I said, “well now you can go and get hit by that bus hey?”. 


  1. lumiss on December 27, 2020 at 7:06 pm

    Thank you Edie. You are truly inspiring.
    Your writing is like a candle in the dark.
    Blessings from Israel

  2. Victoria on January 23, 2021 at 2:18 pm

    I thank you with all of my heart.

  3. Will Johnson on June 24, 2021 at 4:58 am