In my parents’ bedroom in my childhood home was a brown, metal filing cabinet. It screeched terribly when its stiff drawers were pulled open and heaved with the many documents Mum thought it necessary to keep (she had a very high threshold for throwing anything out, if the overstuffed nature of this filing cabinet was any guide). In this filing cabinet was the paper trail of our family: bills, receipts, passports, certificates. Sometimes, when I was of an age old enough to be left home alone for short periods, I would ransack this filing cabinet, scouring for evidence that I was adopted. I imagine most children at least entertain the notion. The evidence for, in my case, was my dark hair and green eyes in a family of blue‑eyed blondes, parents old enough to be my grandparents, and a sense of alienation from the people whose pictures huddled on shelves and hung from walls and who I was told were my family.
This alienation was simply a sad product of time; I joined the party too late. My maternal grandparents died before I was born. My paternal grandparents passed when I was young. My mother had only one brother and my father was an only child, and the few cousins and second cousins I could cobble together into an extended family were far removed from me in age and geography. I would stare at the pictures of people whose names I knew but whose stories I didn’t searching for any likeness that would form a tether between us. I didn’t find any. But neither did I find any adoption papers.
I am often asked about my family history. There are two reasons for this. The first is my unusual surname, which, when enquired about, unlocks the dramatic story of a family who escaped persecution by fleeing across empires and continents for antipodean safety. The second is because I talk to doctors a lot.
At 22, I was diagnosed with an autoimmune disease, a form of degenerative, inflammatory arthritis. Family history is one of the diagnostic indicators of this disease, and suddenly, what I had in common with my ancestors became very clear: autoimmune arthritis. What’s my family history? A matrilineal line of pain. A great-grandmother, grandmother and cousin, all with Rheumatoid Arthritis. A connective tissue disease, forming the connective tissue between me and women who are names, and faded photos, and, in many ways, define my life today.
I didn’t want this to be my family inheritance. With each doctor, with each temptation of a new treatment that might help, I would be asked, “and what is your family history?”. And my answers would be intersected with uncertainties and hesitation because I didn’t know the people whose experiences were now so relevant to my own, and I didn’t think to ask, because I didn’t want to engage with my pain – with my difference – any longer than I had to. I just wanted to get on with life.
My cousin, the one surviving relative with lived experience of my reality, reached out with kindness, sympathy and suggestions. But, in these early days, when I was wrestling against rather than living with my disease, I couldn’t accept this connection, the way I might have if it was the outline of a familiar jawline I could trace in a photograph. And, perhaps, I couldn’t yet confront that her present – multiple surgeries, organ transplants, replaced joints, a body wracked by decades of heavy medications – might be my future.
There is an idea in psychology that suggests that women inherit the pain of their mothers; a burden passed through the generations, born of surviving in a society created by and for men, of being denied matrilineal knowledge and support. It describes the struggle that exists between mothers and daughters as the former tries to keep the latter safe, as the latter tries to find expression in a world that wants to keep her small. It is called the Mother Wound.
I bear this Mother Wound. But I also bear another wound passed from mothers to daughters in my family for at least three generations. My Mother Wound is what connects me to my family, and anchors me to the women I don’t know, for their stories of pain, of resistance and resignation, are also mine. And, as my resistance has shifted into acceptance, I have begun to search for the women who I know understand what I’m going through.
My great grandmother’s name is Martha. When my mother talks of her life there is nothing tangible for me to grasp. I smell dust and see sepia. It’s too remote, a life that began in 1870 and ended the year King George VI died. But – when my mother talks of a woman whose life gradually closed in on itself – I see her. I understand.
Martha didn’t leave the house in five years. Towards the end of her life, Martha’s Rheumatoid Arthritis prevented her using stairs, so she retreated to a life lived on the top floor of the family home. There was no life for elderly, infirm widows. She just withdrew. Her life was just isolation. Martha didn’t leave the house in five years.
There are days and weeks where my pain keeps me on a leash that allows me to shuffle only from my bed to the bathroom. I become anxious and desperately lonely, and home becomes both respite and prison. My social media usage spikes during these periods as I send cyber flares seeking company, seeking that I not be forgotten. Outside seems a very long way away, on these days. Martha didn’t even have a telephone.
My grandmother’s name is Ormey, but in the family storytelling she’s always been called Mada. She fought against her condition, Mum says. It overwhelmed her. She was subjected to every new treatment: injections of cortisone, injections of gold, being encased in hot wax, powerful drugs with terrible side effects. She refused a wheelchair, saying she’d drive it down the stairs with her in it, so my grandfather would instead throw her over his shoulder and carry her, if he had to.
Mada loved reading, Mum says. It was her only joy, really. Mada would sit on the front veranda in a cane lounge with her romance novels and the dog that loved no one but her. But then the drugs made her eyes dry and clouded but she didn’t want to make a fuss and by the time she did make a fuss her cornea had ulcerated and she lost vision in one eye.
Mada absolutely loved shoes, but the arthritis warped and twisted her feet until she was unable to fit into normal shoes and it broke her heart to buy ugly, open-toed shoes. She worried that people would stare at her feet so she didn’t like going out.
Her last years were a blur of surgeries, pain, isolation and doctors who wouldn’t listen, wouldn’t empathise, who would just write scripts and send her out the door. Except Dr Morgan. Dr Morgan had a thick Scottish burr and a way of making Mada laugh. At the end, when she weighed only 25 kg and was on so much morphine that she saw brass bands marching up her hospital walls, Dr Morgan let her choose how her last days would be spent. She chose lucidity – and with it, pain – so she could talk with her family until the end.
The woman in the photo with the sad eyes and thin smile is alive to me, now. I too have tried everything because, without cure, management is the only option. But I too have gulped the pills only to compound my problems with complications and side effects. I too have writhed against the realities of my condition, clinging to a memories of a life without boundaries until my body collapses; wearing pretty shoes that make me taller and match my outfit because that act of resistance, that shred of my old identity, is worth more than the pain I will endure in payment.
My cousin’s name is Helen. She is radiant and smart and cheeky and irresponsibly adventurous. And she doesn’t want to talk about the past, she just wants to live. It is her story, and I wonder if one day we might find a way to exchange our fragile truths to one another. But I do know that to think for too long about the darkness – the life that was or could have been – risks being swallowed by it. So, in not talking about the past, my cousin shows me how to live. I have realised that if her future is indeed my future, it promises joy and survival and success by every measure.
My mother feels guilty because it is through her that I have inherited the family arthritis. She doesn’t articulate this, but I can feel it. What she does say, often, is that she wishes she could bear the pain for me, or take the fatigue away. I don’t have much capacity to indulge alternate futures, and I don’t see that blame or regret would bring me any relief. But my heart hurts for her: she nursed her own mother in those final, tortured years and now she fears for me. I know she feels helpless. Strangely, this has softened me towards her. I indulge the soup that appears unannounced in my fridge, the daily texts, the frenetic attempts to find better treatments because I know she is doing all of this because she can’t bear the Mother Wound for me. Her burden is watching those she loves most suffer, and that, to me, would be the most unbearable pain.
A family’s history is not just names and dates, connected by thin, black lines. It is the colour and shadow that these charts can’t capture. It’s that my grandfather would hoist my grandmother over his shoulder and carry her, her petticoats flying and legs kicking. It’s that my great grandmother lived in a world with no space and no time for an elderly widow who dragged her leg as she walked. It’s that I couldn’t see where I fit into the familial gallery until I knew Mada loved shoes, and dogs, and reading, and had an inflammatory autoimmune arthritic disease. And it’s that my family history includes a Mother Wound that connects strong, resilient women. These are the visceral stories that link me to a family I never knew. And they can’t be found in a heavy, brown filing cabinet.
This essay was Highly Commended in the E. M. Fletcher Writing Award (for writing on a theme of family history) and was originally published in The Ancestral Searcher, Vol. 42 No. 4, 4 December 2019.