Let the Southern Light Erase Your Name
In this photo-essay, Matt Bialostocki considers the harm of his religious upbringing, his uncle's fight with Degenerative Motor Neurone Disease, and how hard family can be.
My parents met in their early twenties working as youth leaders in church-lead outreach initiatives. Dad was a guitarist with Certain Sounds, a Youth for Christ-run program that sent a band to play in high schools and summer camps around New Zealand. My mother was a ballet- and jazz-trained dancer choreographing performance pieces for Y-One, a Christian music and drama team. Outreach is an evangelical method of bringing Christianity to people who have not been exposed to it, and my parents were temporary missionaries on a six-month trip through Australia, Singapore, Sri Lanka and India. My father proposed on the rooftop of a Sri Lankan hotel so seedy that, at night, the local security stood outside with weapons. He used his future father-in-law’s credit card to buy mum an engagement ring. At the time, they felt that God had brought them together, each other’s one true love.
We lived lean in Trentham, Upper Hutt, surviving mostly on donations from our church. Both of my parents followed the pursuits they felt God lead them to. The church’s support was contingent on the elders’ advice being followed to the letter – the same elders that required physical discipline for children. When I was five years old something went bad between them and that particular congregation. We moved to Christchurch.
The manner in which I was raised might seem mediocre. I feel bad when I think of it, but I know other people who come from worse. I was raised in the church, or at least always in a church environment. Certain Sounds is long gone, and the present iteration of Youth for Christ may not be representative of my experiences in these early years. We moved around New Zealand a fair bit for the first twelve years of my life; my parents felt that God was leading us. Dad was working but we often survived on the donations of groceries that would mysteriously appear at our doorstep. This was after the support from Trentham was pulled, and in a new city. Mum would occasionally work as a relieving teacher and was also trained as a hairdresser. By the time I was fifteen I had been to nine schools and lived in fourteen houses.
Periods of time passed during which I can only describe my life as cult-like…These times have nurtured a deep unrest in me.
Periods of time passed during which I can only describe my life as cult-like, specifically when I was between seven and nine years of age. These times have nurtured a deep unrest in me. At seven years old I ‘gave my life to Christ’ via baptism in the spa pool of a holiday park. We lived alternately on or nearby a ‘camp’ on the edge of Lake Rotorua that is now used as a school venue. Their website currently states:
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As a child I was dogmatic in my belief that God had a plan for me to follow. In my developmental years’ several church leaders would lay hands on me, pray, speak in tongues, and tell me that God had explained to them that I was to be a healer and a leader of men. Often I was anointed with the power of the holy spirit. At each crossroad in my early life I felt secure in the knowledge that I did not need to know what was next, because God knew and he was in control. This prevented me from forming a realistic matrix of reasoning, but on the other hand the internal dogmatism helped with the bullying that comes from trying to convert children in the playground. In some horrible sense it also helped with the disciplinary measures my parents took at the behest of the elders in their church.
As a teenager in Auckland I continued with my Christ-like intentions, but became furious at the hypocrisy I saw at church, at home, and at my evangelical Christian school when those in the community went against the humanitarian values I then saw as Christian. The simple things. Do unto your neighbour, do not lie. So I began to withdraw from the community aspects of Christianity and rely on my faith in god to guide me. It seemed that in spite of attending church and going to a Christian school, the values I tried to practice were only abstract pontificating to the people around me. It made me angry. I knew that to lash out at someone in anger was wrong. I knew this in my bones, not in my brainwashing. I directed all anger inwards so as to never wound others. When your role model was crucified for the sins of all humanity what else can you do? So when someone raised their hands to me, I would let them.
It took me ten years to fully extricate myself from these environments. It began slowly when I was around fifteen; I had always thrown around other people’s words, confident in my faith, until one day I started to say words that I knew did not belong in my mouth. Words of judgement. Harmful words. In faith I said things to others that I now consider to be ideologically violent. This was a turning point for me. I still remember many of these words coming out of my mouth and I still have a drive to punish myself for them.
My mother, Joy, has two brothers and one surviving parent, my Nana. Don, the youngest brother, turned fifty in August 2015. John, the middle child, and about as rambunctious as middle children get, has Degenerative Motor Neurone Disease. He lives with Ellie, his wife, in Bluff, or as I think of it, at the bottom of the world.
For Degenerative Motor Neurone Disease, we presently have no cure… Communication between muscles and the lower motor neurones breaks down over a period of time, and eventually between the higher and lower motor neurones.
For Degenerative Motor Neurone Disease, we presently have no cure. As you’d expect from the name, the most pronounced symptoms affect motor skills. Communication between muscles and the lower motor neurones breaks down over a period of time, and eventually between the higher and lower motor neurones. This causes muscle to shrink and die. The lower motor neurones control musculature in the arms, legs, face and throat. At the time of writing, John describes his physicality as a puppet from the 1960s Thunderbirds television series; His movements are jerky, he needs his whole body to lift a glass of water. He can stand and sit for the moment. He sees new obstacles each week.
As I write this John may have as few as three months to live, and as many as eighteen – perhaps some ingrained southern magic will occur near his house, and he will keep chugging along. I like to think of that, but the reality is firmly etched in my mind. Of cousins and siblings I am the eldest; my two sisters, Amy and Jane, are sequentially younger.
My Uncle Don’s only wish for his fiftieth birthday was to have us all in one place. He drove his family – Mary (his wife), and their three children – to Bluff, where John ferments. My mother and sisters flew down: Amy with her thirteen week old infant, my first blooded niece, Christen. In spite of her fairly advanced Alzheimer’s disease, Nana came down also.
On the twenty-first of August 2015, I left work at 1630 and flew down to Bluff, having eaten nothing that day, and with the trepidation that makes its way into my backpack before each family gathering. I spent the flight reading, and scribbling notes in a journal.
Birthdays have held no significance for me since I was seven or eight years old. A birthday is just one day in many and mine have never been eventful enough to stick in my memory. Some of them, including a clown situation, have been forced into the memory furnace. In fact I find it difficult to both give and receive gifts on such occasions. For my birthday in 2015 I ate sashimi and bought myself three black t-shirts on a credit card. I was not going to Bluff for Don’s birthday, though I love him very much. I was going for John.
While John and I have not always been close we have always been kind to one another. I think this is as much as one can hope for with family. Within my family I have always felt like an outsider and while I think John respects my difference of mind, our connection was delayed by his love of the South Island and everything embedded in kiwi masculinity. I find these qualities absent in myself. As his friends may describe me, I am a ‘Greenie.’ I have always been too deep in a book, too dark in a theatre, or looking at the world through a camera lens, and he has always been happy with Speights and a campground, with hunting deer and fishing and diving for pāua.
When my mother told me about John’s terminal illness I felt no surge of sadness. I felt some sick compliance. Of course – the one person in my family who accepts me the most. But the sadness has grown and will fluctuate as I go through my own stages of grief.
John recognised something in me outside of the assumed family psychology. I believe he understood that discourse on death, loss, acceptance did not frighten me the way they frighten other people. They are a reality for me because I’ve lived my life with loss and throughout my life have moved in and out of heavily depressive phases. So one night John and I sat in my mother’s living room in Pakuranga, Auckland, and talked about the things that he couldn’t talk to everyone about, while I held his rubbing stone – a Pounamu given to him and Ellie by a friend – a grounding tool to help people acknowledge their feelings. It was my birthday. Over several glasses of scotch, John and Ellie released their building sorrow. They were returning from a trip through Bali and Australia, hence being in Auckland instead of Bluff, and it was during this trip that they realised John was unable to travel again. As Ellie hid in the bathroom with my mother, John told me he knew that he could make peace with dying, but he couldn’t make peace with leaving Ellie lonely.
After seeing me with John she talked about my tendency to take on other people’s burdens. Remnants of my upbringing. It reminded me of the idea of a ‘sin-eater.’
When John and Ellie went to jet-lagged sleep, my mother and I sat for some minutes in the living room. It was a rare moment for us even without her younger brother and sister-in-law staying for the last time. After seeing me with John she talked about my tendency to take on other people’s burdens. Remnants of my upbringing. It reminded me of the idea of a ‘sin-eater.’ The thing is, my family have never dealt with death all that well; a stiff upper lip. A post-colonial British thing, maybe. Still, my memories of bible-verse flashcards precede my memories of learning the alphabet, although I am on record as being able to recite the spelling of ‘Bialostocki’ at two years old.
Jane and my mother picked me up in Invercargill and we drove back to Bluff where Amy, Christen, Nana, John and Ellie were waiting. In addition, Bobby, Nana’s friend, had made the trip from Alabama to Bluff to be with us.
When the siblings were young they hosted an AFS student named Dorothy. Her departure fostered a life-long friendship between my mother’s family and Dorothy’s parents, Bobby and Buddy. Buddy doesn’t travel any more, but Bobby still has some kick left in her – a deep southern American kick that leaves you thinking of pumpkin pie and s’mores. I had not seen her in a few years. Don and his family arrived soon after we got there, we had dinner, and the kids left just as John’s home nurse came by. She comes in the morning and evening to get him in and out of bed. She is a good sort.
I have mentioned that Degenerative Motor Neurone Disease involves muscles failing. John is a big guy and has plenty of muscle to lose. There are many things he can no longer do himself. A month before this visit he was walking alone by the southernmost coast of Bluff and fell. He was unable to break his own weight against the ground. A neighbour saw his tumble and this was his saving grace. That hundy-functioning mind with a body that won’t talk back. Dogs barking and seagulls screaming.
Ellie pulled me upstairs while John and the nurse were in the bathroom.
‘Have a puff,’ she said, pulling out a fluorescent purple bong. ‘There’s no hole to cover, just pull.’
I did so, and coughed violently. John had spiked the bong with whiskey instead of water – it tasted rich, like hickory. In his terminal state, tramadol and steroids non-withstanding, the thing that helps his pain the most is medicinal marijuana. I am partial to it as well. When John was safe in bed I fell asleep reading. I slept uneasily that night, dreading the following day.
Christen was born 2nd June 2015. My first niece. I am good with children. Maybe I still feel like a child. Plenty of kids have thought of me as Uncle Matt, but Christen is the first blood kin borne from either of my siblings. Amy was working on a cruise ship six months after condescendingly chiding me for my non-Christian life, particularly concerned that I was sleeping with someone at the time. Upon returning to New Zealand she discovered she was not alone – a small stowaway had taken root in her womb.
After blurting it out to my mother Amy called me, the sin-eater. She knew that if any member of the family would hold no judgement it would be me. My parents went through mixed emotions as they adjusted to the previously-welcome idea of being grandparents. I was over the moon.
Jane, my youngest sister, woke me at around 0800. Family were milling in the lounge already, and Christen was awake. I held her while the others ate breakfast. Christen and Amy live in Auckland with my mother and I don’t get to see them often. When I first met Christen I took her straight to a bookshop. Priorities are important.
I want to be important.
I want her to feel that I am a good Uncle.
Amy told me that she had organised a dedication ceremony for that morning and she wanted me to be involved. A dedication ceremony often involves buying special clothes for an infant before blessing them into the convoluted system of religion and spirituality in which I was raised. My feelings about the church and religion are well known to both friends and family; They have seen how it affects me, but they possibly do not understand that it instilled in me a form of hatred towards myself. This hatred has made me neglect myself over the years. At some point I came to understand I wasn’t important. Amy told me of the dedication ceremony expecting that I would be angry, and I was.
But I also believe she told me knowing that I wouldn’t refuse her; I was not as obstinate and arrogant as to choose to avoid my niece’s dedication ceremony, whatever my feelings about the church. The church. God. Spirituality. Religion. Lines drawn across a map.
The church. God. Spirituality. Religion. Lines drawn across a map.
The ceremony was to be held in John’s living room. Ellie asked me to come upstairs to roll up some pain relief for John – their fingers aren’t always up to the task – and I did so a few minutes, pocketing them for John later in the day. I have spent time with him in front of other people and I’ve been alone with him, so I’m not surprised he is only honest about the severity of his pain around people who don’t mind that he uses marijuana medicinally.
Buddy is an old-school, ever-lovin’ gospel preacher from Alabama with a black belt in karate. He was skypebeamed in from the other side of the world. Dorothy, the woman who was once the girl that lived with mum’s family, was with him to help with the mechanics of Skype. Technical difficulties ensued. The family wanted to have Buddy on the TV (‘aren’t you the IT guy for a bookshop?’) so I did my best to figure out how to get an archaic laptop to display on a new flatscreen TV. By the time we started the ceremony, someone’s distant microphone meant that all we heard was Buddy saying,
‘Now, if you can take Christen around each person in the room, and I’d like for each of you to pray for God’s guidance and blessing in her life.’
Christen went around everyone, sporting a white and blue dress bought for the occasion and a fluro-orange cardigan that she will have already grown out of. When she came to me I kissed her head and whispered:
‘Quis custodiet ipsos custodes?’
Who watches the watchmen?
It tickled me at the time. I wasn’t going to pray. I handed Christen on to my aunt.
The idea of dedicating my niece’s life to God – I cannot express how visceral it was. I felt a tightness in my chest, a flush, a singular emotion. A few months before, John had drunkenly asked me how my mother and father could not see the effect this environment was having on their children? We were on the deck of a fifteen-person boat in Doubtful Sound and he had gripped me, whacking the self-mutilation scars on my arms, his motor-neuroned head hanging low as he tried to raise it to meet my eyes.
‘If you ever off yourself, I’ll fucking never forgive you. Cut that shit out mate. Just get another tattoo. Ellie and I didn’t know. We didn’t see it.'
‘If you ever off yourself, I’ll fucking never forgive you. Cut that shit out mate. Just get another tattoo. Ellie and I didn’t know. We didn’t see it. I failed you as an uncle. I should have done something. I wish I had been there.’
Amidst memories of making anti-abortion signs with glitter and paint – memories of enacting judgement against people that do not deserve to be judged; watching my mother choreograph a performance for youth at a Christian holiday park in Waikanae, their dark glasses and fluorescent t-shirts with ‘jesus-is-cool, man’ slogans – holding Christen was the only thing keeping me whole.
I looked across at John while the ceremony played out. He had tears in his eyes as he often does in these emotive times. Ellie was holding it together as we wrapped up the Skype call; Flickering on the screen was the Alabaman gospel preacher who used to send me beanie-babies when I was a child. Christen being offered up to God. Still trying my damndest to be respectful, I could only silently laugh.
Don wanted Indian for lunch, and on his fiftieth we were keen to oblige. The whānau piled into three cars and drove into Invercargill. The restaurant was empty, save the staff. It was an old building with wooden floors, walls, tables – history up to its ears. The sun forced its way through the windows then faltered against the grain. I lifted Christen from her buggy.
While I settled my niece by singing John Darnielle songs, my family began a toast to Don – let’s be honest, surviving fifty years of anything is at least worth the bottle of rosé that was on the table. Mum’s side of the family has an embedded teary trait and with my mother’s hand on John’s shoulder, the siblings started to weep. I stood in the background with the kid asleep in my arms, her miniature cardigan riding up to my elbow.
That afternoon, Ken, a close friend of my uncle’s, dropped by to take Don for a dive. They went straight in hunting for pāua. Jane and I stood watch in case they were caught in the tide. It was a bright and kind afternoon sun. Jane gave me the diver’s knife she held and I gave her my camera. She knows I trust her. I’ve never found it that easy to express myself and my camera is a path around that.
My mother joined us briefly on the rock. It was another unexpected moment between us. She saw the scars John talked about and she saw the tattoos she never liked. She smiled at me anyway.
John told me something funny when I first arrived. The night before, when everyone had gone to bed, Ellie brought the bong downstairs because John didn’t want to go to bed yet; it was too far for him to climb up for just a puff. While he and Ellie were sitting there watching the boats go in, Nana came back into the room – no idea what was going on, as is sometimes the case with Alzheimer’s – sat down next to him, pointed at the bong and said, ‘Ooh I’d like a cup of tea!’ They sat there for hours.
The very edge of the world. A lighthouse behind me, my family up the hill, the afternoon light waning.
When Ken and Don had their fill of diving, Jane walked them back up to the house and I stood on the edge of the world and smoked. John had said, ‘Do one for yourself,’ and god forbid I beget a dying man unless he demands something dickish. Watching that horizon was one of John’s favourite things in the world. I wanted to feel clean, with the salted deep southern air pushing against me, the ocean’s breath coming into my skin. But I could only think of Christen, Buddy, John, and that tightness in my chest that I finally, finally learned to manage.
The very edge of the world. A lighthouse behind me, my family up the hill, the afternoon light waning.
On the slow walk back up I noticed two things that I had seen, but not really taken to heart: John had a bunch of pāua shells in his yard. Prior feeds. He also had a couple of stag antlers. I walked in and asked him if he had plans for them. ‘Take them,’ he said. With no bag on my flight I had to make do; I stood in the dying coralescent coastal light and used a hacksaw to break down the antlers. Some part of me hopes to turn them into photo frames – I am keen to use all parts of any animal killed for kai – and it felt that I was taking a piece of John with me back to Wellington.
With the rest of the family inside, John asked me to help him get a breath of fresh air. I walked him out, and he leaned against me after navigating the complication of gumboots. We watched the sun set on the ocean from the top of their property. Inside, Cat Power’s Sea of Love was playing. John had recently discovered Pandora, and conducting music on an iPad appeals to the way he is now. Several times I was caught off guard when music that I listen to came through his speakers.
He said that he was hearing music properly for the first time in years.
I intend to see John again before the inevitable happens. I may be able to hitch a ride south with a truckie I know. I never thought of Bluff as a place to spend time in, but with him there, it feels like the most honest place in the world. There are more conversations to have; there are more evenings to while away watching container ships, as finite as they are. I think of John sitting in his lounge, watching those ships come in at sunset. I think of him slapping his iPad, saving all the Dum Dum Girls covers that come over Pandora; this is a man who once believed music solely consisted of guys named Neil. I think of Ellie sitting with him in the evening, the friends who visit, who feed him and tilt a glass to his lips.
Memory can be flawed, it can change over time, and there are things I have written about here that I fear could have been twisted over the years.
Memory can be flawed, it can change over time, and there are things I have written about here that I fear could have been twisted over the years. For a long time I tried not to think about much of my past, and I don’t know how that affects the way I see it now. Amy has a different set of memories and Jane wasn’t born until just before we moved to Auckland when I was ten years old. But I know it meant a lot that John could see me the way that I am, when it felt for so long like my family couldn’t.
I stepped onto the plane from Bluff to Christchurch to Wellington with a backpack of sawn-off deer antlers and three pāua shells. I made it back in time to open the bookshop by 1100 on Sunday.
Let the Southern Light Erase Your Name was originally written in late 2015, with photographs taken between March 2015 and February 2016. The progression of Degenerative Motor Neurone disease varies from individual to individual.
John passed in June 2016.