Michael Galvin’s Ben Book

Michael Galvin, The Ben Book: A Father’s Memoir (Ginninderra Press 2020)

Michael Galvin is a self-described ageing baby boomer, a former academic whose son Benjamin, born in 1984, lived with the disease known as Duchenne muscular dystrophy, from which he died when he was 22 years old.

The Ben Book tells their story. A brief introduction says the book was written in the first years after Ben’s death, and some of it was clearly written when grief was raw, but it took more than ten years ‘to be able to face up to its publication’. It is an intensely personal memoir about a relationship, about being a carer as well as a father and a friend, even a best friend. According to the introduction, the book is published with at least two types of reader in mind, those who are ‘involved in the muscular dystrophy community’ and those who have no involvement with the world of disability. I belong in the latter group, so have no comment on the book’s possible reception in the former, except to say I hope people new to that group will find validation and some kind of reassurance in its pages.

For me as an outsider to the world of disability, the book is full of revelations. It doesn’t dwell on the physiology of Ben’s condition, but gives a strikingly dynamic portrait of Ben himself and how he dealt with the progressive weakening and breakdown of his muscles – from a physically active boy, to a teenager who needed a wheelchair to get around but still played wheelchair sports, to a young man who could do almost nothing physical without assistance. There are gruellingly detailed descriptions of the kinds of intimate assistance he needed, exhilarating moments of joy, encounters with able-ism ranging from the irritating to the devastating, and a tactfully vague account of the toll taken on the parents’ marriage and on Ben’s younger, non-disabled sister. At its heart is a loving portrait of a resilient, thoughtful young person, who was discovering new things about the world until the end. The book must have been unbelievably difficult to write. It’s a heroic book about a heroic young man and the heroic family he was born into.

To give you a sense of the writing, I’ll talk about page 75. Ben was 22 years old. He and Michael had been going to a counsellor for some ‘mutually beneficial anger management’. On this day Michael had been ‘overwhelmed with all the sadness [he] felt about Ben’s condition’. He wept and spoke from his heart about how much he loved him and how devastated he would be to lose him. Michael the narrator describes his words as ‘dramatic, self-centred statements’. That’s evidently not how Ben heard them – Galvin tells us that he replied calmly, over and over, ‘I know, Dad.’ When they left the counsellor’s office a significant milestone had been passed – there was to be no more avoiding the imminence of Ben’s death:

We walked aimlessly for an hour or so in the Parklands, saying little, grateful to be alive, and to be together (I speak for myself; I think I speak for him too). I think we noticed every bird that chirruped, on that particular afternoon.

A toilet stop was needed, and there’s a glancing reference to the probability that the toilet is a gay beat – nothing is made of this except the mild comedy of the ‘strange and confusing sight’ that a stranger would have encountered. Then the narrative rests a while on what happened in the counselling session, beginning with a quote from Cormac McCarthy’s All the Pretty Horses:

Because the question for me was always whether that shape we see in our lives was there from the beginning or whether these random events are only called a pattern after the fact.

Galvin often reaches out to literature as a sustaining reference point. As well as this and other quotes from Cormac McCarthy, there are Les Murray’s ‘A Perfectly Ordinary Rainbow’, Victor Frankel’s From Death Camp to Existentialism, Pat Barker’s Regeneration trilogy, Ingmar Bergman’s The Seventh Seal, Joan Didion, Isabel Allende, and more. There is a brief section about the importance of religion, particularly the religion of one’s childhood, but it’s secular literature that’s woven into the texture of the telling to provide perspective and emotional resource. I read this particular quote as a caveat, warning the reader that Galvin may be an unreliable narrator. (Someone once said, and as an Eng Lit academic Galvin knows, all memoir is unreliable.)

Referring to the counselling session, in one of the few moments where he writes about his life before parenthood, Galvin writes:

Ben reacted better than I did when the same things happened to me when I was young. I was a callow fifteen-year-old, about to go to boarding school. For fifteen years, I had been very close to my granddad, a stern man, an unemotional man. The night before I was to leave, I was with him when he burst into tears, and told me how lonely he was going to be when I went away. Until that moment, I don’t think I had given his feelings a moment’s thought. Now I was that old man … When his turn came, Ben showed more empathy and guts than I ever did.

The book is subtitled A father’s memoir. It’s as much Michael’s story as it is Ben’s. This small passage, possibly more than any other, shows us the depth of the father’s admiration for the son, rooted in a sense of his own limitations. It’s a strength of the book that it refrains from generalisiing about courage and disability. Ben isn’t brave and empathetic because of his disability, but he has risen to its challenges with courage and empathy. (I’m reminded that when I briefly had Bell’s palsy some decades ago, the only two people who responded to it with unembarrassed empathy were a small boy who had endured much surgeries because of how his body was at birth, and an older woman with post-polio syndrome.)

On a personal note: I met Michael Galvin when he arrived at that boarding school as a fifteen year old. I was the year ahead of him, a significant difference at that time of life, but we were friends until we both graduated in English at Sydney University. We lost touch soon after that, for nearly 50 years, and only recently renewed contact by email. When he told me about his son and this book, I immediately ordered a copy from Ginninderra Press. I don’t recognise the man in the photo on the cover, and reading the memoir was an uncanny experience: I knew they were the words of a man I knew when we were both young, but they were in the unrecognisable voice of someone who has been through the mill. I’ll give him the last word here:

Writing this account has been driven as much by need as desire. The desperation of a man, getting close to retirement himself, struggling to survive emotionally, his nerves as worn out as old shock absorbers, wanting to make sense of the biggest things in his life … I somehow cling to the crazy idea that, if I can keep Ben alive in words, I might keep him alive, or at least not dead, in other ways.

Well, it turns out that was the second last word. I get the actual last word: The book does keep Ben alive in words, and as a result he lives ‘in other ways’, in the minds of readers, including me.