The Immortal Life of Henrietta Lacks by Rebecca Skloot

This book was a gift from a friend, and it’s been languishing on my shelves for some time (as books often are) waiting to be read. It’s exactly the kind of book I would like: non-fiction (because I am trying to read more non-fiction…and succeeding), written by a woman about a woman, sciency. All those things add up to a considerate gift. So why had it been sitting on my shelves for so long? The answer: it seemed like quite a daunting read. So when I signed up to the #TBR20 initiative over on Twitter, this seemed like the exact kind of book that should be on my list.

The Immortal Life of Henrietta Lacks tells the story of one woman’s search to find the story of the life of another woman, a poor black woman who died in the 1950s from cervical cancer, whose cells have changed the face of modern medicine. The cells, known as HeLa, have allowed significant medical advancement to be made because they were the first cells that were successfully grown and kept alive outside the human body. As a student of biology Skloots learned of the HeLa cells and how important they’ve been in medical science – enabling development of a polio vaccine, cancer therapies, cloning and gene mapping – but discovered that little was known about the woman herself. So she set out to write this story which is at once a personal history - piecing together Henrietta Lacks from her medical records and the vague memories of friends and family, many of which have suffered as a result of the famous cells - as well as a potted history of cell culture, including both the development and ethics of this branch of medical science.

What follows is an incredibly engaging story. Skloots is open about her investigations, she manages to insert her search for Henrietta Lacks’s story into the book though it’s neither arrogant nor self-serving or intrusive. Instead we learn through Rebecca’s eyes how the Lacks family have been affected both by their personal loss – the loss of Henrietta as a mother, partner, cousin – as well as the impact of having Henrietta’s famous cells linked to their family. There is also the ethical impact: in the case of the medicine industry millions of dollars have been earned selling Henrietta’s cells, yet the Lacks family, including Henrietta’s children, are so poor they can’t even afford medical insurance. Henrietta’s cells have benefitted millions, enabled many people to become rich, yet not the Lacks family itself.

This leads, neatly, onto the question of medical ethics which is explored in some depth in the book. Skloot manages to sit very carefully on the fence neither judging for or against the medicine industry. On the one hand there is considerable benefit in allowing the medical profession to conduct research openly and freely, so the idea of allowing individuals a proprietary interest over their tissues and cells could inhibit medical progress. On the other hand, some appalling abuses have taken place in both the context of medical research programmes and the acquisition of samples from living patients. It raises some interesting questions about the nature of informed medical consent that still need to be answered today. I found myself horrified by stories of medical experimentation such injecting healthy and unhealthy patients with HeLa cells to see if they developed cancer, without telling them that there was a cancer risk (many injectees went on to develop tumours). In many cases these experiments were conducted on black people, and there’s a sense throughout the book that the black community were subjected to some terrible treatment simply on account of being black, including Henrietta’s deaf & dumb daughter Elsie who died shortly after Henrietta in an overcrowded and dirty asylum where she, too, had been experimented on. There’s also the question of whether allowing organisations to apply a proprietary right over things like genes is, in and of itself, a greater inhibiting factor. The idea that organisations must be allowed to make money or research will not happen is a silly one; history is peppered with examples of scientists undertaking research as a matter of following curiosity, or out of a personal interest (loss of a family member) or simply for the common good. Included in this is George Gey, the man whose lab took Henrietta’s cells and grew and grew them. Cells that he gave away, freely, enabling others to conduct research and make money whilst he remained always on the cusp of broke.

But this is a story about Henrietta, and Skloots manages, through careful piecing together, to construct the story of Henrietta Lacks. It is a name more of us ought to know, to understand how her contribution has led to significant medical advancement. Her story is not an untroubling one; her children have led difficult lives and are variously proud and fed up with the story of HeLa. Skloot doesn’t let us forget that this is a story about a woman, a family and a community, that at the heart of the HeLa story is a dead young woman who left behind a grieving family which have never quite recovered from her loss.

Was it a daunting read? No, it wasn’t. At times it was infuriating (arrogant researchers); at others it was touching, sad, uplifting. It was certainly enlightening, and definitely a worthwhile read. Many thanks to the considerate friend who saw this book and knew it was perfect for me.

Blue Nights by Joan Didion

The thing about Joan Didion, and it’s impossible not to notice this within a relatively short time, is that there’s a certain rhythm to the way she writes, a tone, a musicality, which creates a floating, dream-like essence to her prose. This conceals the precision of her words, the sheer effort that has gone into crafting the perfect sentence. And make no mistake, these are perfect sentences. Sparse, effortless (seeming), raw. It is a phenomena that Didion comments on in the book, here:

“The above are notes I made in 1995 for a novel I published in 1996, The Last Thing He Wanted. I offer them as a representation of how comfortable I used to be when I wrote, how easily I did it, how little thought I gave to what I was saying until I had already said it. In fact, in any real sense, what I was doing then was never writing at all: I was doing no more than sketching in an rhythm and letting that rhythm tell me what it was I was saying. Many of the marks I set down on the page were no more than ‘xxx,’ or ‘xxxx,’ symbols that meant ‘copy tk,’ or ‘copy to come,’ but do notice: such symbols were arranged in specific groupings. A single ‘x’ differed from a double ‘xx,’ ‘xxx’ from ‘xxxx.’ The number of such symbols had a meaning. The arrangement was the meaning.”

The thing about this rhythm is that it really gets under your skin, to the point that it is easy to forget what you’re reading but instead simply allow yourself to drift along with the lovely rhythm of the words. Before you know it you’re thinking in this rhythm. It’s the kind of rhythm which, with a little creativity, could turn the description of the process of making perfect mashed potatoes into something profound, significant, into something worth reading. Which isn’t to say that what Didion writes isn’t worth reading.

Didion’s rhythm is famous as is her openness, the way in which she mines her personal history, her friends, her tragedies and presents them for the readers, what, entertainment? It isn’t the right word. Edification perhaps. In Blue Nights Didion explores the loss of her daughter, Quintana Roo, to some misfortune which is never quite made clear. Except that she died, that was made clear. It is a terribly sad story, and it is evident that nothing about the distance of the event, or reflecting on it, makes it any less raw. In her neat, stripped down to the bones prose, Didion dissects both Quintana Roo’s life, her own life, their family. She also discusses the impact of her own aging, the descent into frailty which was both physical and mental. It is surprising to find that Didion was seventy five when she wrote Blue Nights. If she has lost any mental acuity, it does not present in her writing. Instead what we see is insightful, honest and true.

About aging, Didion writes:

“Let me again try to talk to you directly.

On my last birthday, December 5, 2009, I became seventy-five years old.

Notice the odd construction there – I became seventy-five years old – do you hear the echo?

I became seventy-five. I became five?

After I became five I never ever dreamed about him?

Also notice – in notes called Blue Nights for a reason, notes called Blue Nights because at the time I began them I could think of little other than the inevitable approach of darker days – how long it took me to tell you that one salient fact, how long it took me to address the subject as it were. Aging and its evidence remain life’s most predictable events, yet they also remain matters we prefer to leave unmentioned, unexplored: I have watched tears flood the eyes of grown women, loved women, women of talent and accomplishment, for no reason other than that a small child in the room, more often than not an adored niece or nephew, has just described them as ‘wrinkly’, or asked how old they are. When we are asked this question we are always undone by its innocence, somehow shamed by the clear bell-like tones in which it is asked. What shames us is this: the answer we give is never innocent, The answer we give is unclear, evasive, even guilty.”

The prime focus of this book is Quintana and her death, the way in which her death affected Didion, the critical self-examinations that followed. Quintana was an adopted child, this was something she was aware of from an early age. Was it her adoption that lead, inevitably, to her death? Was it something in the way she was brought up, was the knowledge of her ‘abandonment’ too much? Was the strangeness, the ‘privilege’ which Didion is at odds to point out is not quite what it seems, the adultness of her childhood the cause? Didion asks all these questions, examines Quintana’s life which is also her life as a mother, but finds no answers. How does this link to Didion’s own sense of age and frailty? Simply that, as she approaches those blue nights, the nights that foreshadow the darkness, the only person her life should still matter to is already in the ground.

Blue Nights is a book about loss and grieving. It is a book about loss and grieving in which the issue of grief is skirted and the loss lying at the centre is walked around, pushed, poked, reflected upon but not resolved. There is a rawness of emotion there, self-criticism, a sense that Didion is conning herself and through the book is trying to correct that yet doesn’t quite achieve it. This is not a criticism, I should point out. Didion directs us to a more critical way of thinking through her own efforts, and it is here where the strength of the book lies. Here and in its magical rhythm that is so familiar it is like being lulled to sleep listening to your mother’s heartbeat. Except in this case, I think I was lulled awake. Gratefully so.

Reading Woolf: Between the Acts

Between the Acts was Woolf’s last novel, and she died before finishing editing the book. Having enjoyed so many of Woolf’s books, I’m sad to say that this was another that just didn’t gel for me. It has a lot of promise, more so than Flush, but it doesn’t quite hit the mark and I wonder if Woolf had had the time or inclination to work on it further, whether a tighter book would have resulted? It is impossible to know.

Between the Acts takes place entirely in the course of a single afternoon during which a play is performed, the summer pageant, in the gardens of Pointz Hall. The story centres around the family: Isa (Isabelle) a young, unhappy mother; Mr. Oliver, her aged father in law; Mrs Swithin, Mr. Oliver’s sister; and Giles, Isa’s husband. Through the characters of Isa and Giles we see played out passion and ennui; the characters of Mr. Oliver and his sister Mrs Swithin juxtapose faith and reason. Joining the family for lunch is Mrs. Manresa, a flirtatious and sexually appealing women and William Dodge, a homosexual and an ‘artist’ though he rejects the title.

The story opens with a lot of promise. “It was a summer’s night and they were talking, in the big room with the windows open to the garden, about the cesspool.” Isa, the main force of the story, is sitting in the room as her father in law is discussing practical village matters with a gentleman farmer, Rupert Haines, and his wife. Isa is reflecting on the emotions Rupert Haines, the man in grey, stirs within her. She suspects them to be love. In the meantime, the family is talking. Isa, in spite of her outward calm, is troubled. Her marriage, it seems, is also troubled with suggestions of infidelities on her husband’s part and her own struggling to understand how exactly she feels about her husband.

The family are preparing for the pageant, each person fitting to a familiar role. Mrs Swithin puts up the sign, she and her brother talk about the weather. Isa sits quietly, yet inside she is seething with emotion: frustration which rises from her marital situation and the endless cycle of repetition, the repeating of roles from one year to the next. “Every summer, for seven summers now, Isa had heard the same words; about the hammer and the nails; the pageant and the weather. Every year they said, it would be wet or fine; and every year it was – one or the other. The same chime followed the same chime, only this year beneath the chime she heard: ‘The girl screamed and hit him about the face with the hammer.”

Enter Mrs Manresa and her friend William Dodge. Dodge inspires different emotions in each of the characters. Underlying, yet not spoken, is his homosexuality which stirs disgust in some, sympathy in others. When Giles returns home from work he is stirred by the presence of Mrs Manresa, as is Mr. Oliver, who is seen as something of a ‘wild child’ not behaving to normal etiquette and flirting quite openly with the men. Isa is annoyed with Mrs Manresa’s affect on her husband and the suggestion of further infidelity.

The weather is fine and so follows the pageant. Penned by Miss La Trobe, the event is something about the ages of men. Or something like that. I don’t know. At this point I completely lost the plot (or the plot was lost); the entire pageant part of the book was a cacophony of words that meant absolutely nothing to me. Except this part, perhaps:

“Did the plot matter? She shifted and looked over her right shoulder. The plot was only there to beget emotion. There were only two emotions: love; and hate. There was no need to puzzle out the plot. Perhaps Miss La Trobe meant that when she cut this knot in the centre?

Don’t bother about the plot: the plot’s nothing.”

I don’t know if Woolf was hinting there or if not, but certainly I got the impression that the plot really was nothing and as a consequence I had no idea what it was about. Scenes opened, scenes closed. Lines were started, lines were lost. There was interval upon interval, many costume changes, we followed this character then that character. No one seemed to be able to finish a sentence or thought. No one seemed to know what was going on.

This pretty much bombed Between the Acts for me. The novel, from some point after the first third, was like the closing part of Orlando: fevered and stuttering; a whirling jumble of words, ideas and imagery. I couldn’t follow it. So much murmuring, so much half-finished dialogue. Too…unfinished, perhaps?  It was a bewildering read; despite its short length, it was a struggle to finish it. I still have no idea what I was reading. Can anybody help me?

Between the Acts receives a bewildered 5 out of 10 Biis. It’s early promise just didn’t flow through. 

White Hunger by Aki Ollikainen (translators: Emily Jeremiah and Fleur Jeremiah)

White Hunger is the story of a famine which takes place in the winter of 1867 in Finland. Central to the story are two families: Marja, her husband Juhani and children Mataleena and Juho, a family from the farming community in the North; and Teo and his brother Lars, both from the south of the country, both holding important positions: Teo, a doctor, and Lars a member of government. The story of White Hunger centres around the impact the famine had on both families.

The situation for Marja and her family is grave. Being from a poor community, they are soon struck down by starvation. When Juhani grows sick, Marja and her children abandon him in order to seek food and shelter in the South. Specifically Marja is hoping to reach St. Petersburg, where she believes food and shelter will be available. The story of their journey is one filled with small acts of kindnesses – the generosity of those other farmers and communities who each have little to spare but are still willing to share the little they have with the mother and her two children. It is also a journey fraught with danger; the danger of the cold, the relentlessness of the snow and ice, as well as the danger from others. Marja encounters many kind people, but also many who are angry and abusive and who will take advantage of or take out their anger at their circumstances on the beggars that cross their path. Consequently Marja’s journey is one of slow, relentless loss.

Meanwhile in the South, Teo and his brother argue about the solution to the endless battle with famine and hunger. This is a battle between Finland and the outside world, which would seek to attach conditions to the supply of grain. Yet neither brother goes hungry, and the battle with hunger here is a purely ideological one. Instead a different kind of hunger consumes these people. In Teo’s case it is alcohol and sex, as another character observes: “Booze or cunt – men get the same look with both,” Leo, however, is consumed by his wife’s desire for a child, as well as the dire situation in the rest of the country.

This contrast between the fortunes of the two families is interesting. Whilst Teo and Lars play at politics or sex from the safety of their relative wealth, Marja and her family live out the realities of the desperate situation. Theirs is a torturous journey, filled with loss and desperation. The cruelty of winter, the cruelty of starvation, cold and living on the goodwill of others is seemingly endless and there’s a sense that those who are kind will find themselves not far behind Marja in throwing themselves on the kindness of others. Through Matalena we come to understand both the reality of how it feels to starve. As she describes here:

“Hunger is the kitten Willow-Lauri put in a sack, which scratches away with its small claws, causing searing pain; then more scratching, then more, until the kitten is exhausted and falls to the bottom of the sack, weighing heavily there before gathering its strength and starting a fresh struggle. You want to lift the animal out, but it scratches so hard you dare not reach inside. You have no option but to carry the bundle to the lake and throw it in a hole in the ice.”

White Hunger is an interesting read. It is relentless in its presentation of famine and its impact on the population struggling under its grip. Even so, I found this a somewhat frustrating read. In particular, the presence of women in this book was very much as object: object of hunger, object of abuse, object of sexual desire. Even though the main character in the Northern family is a women, even here she serves as an object of hunger, oppression and male desire. In contrast, the men have thoughts and desires of their own, they play with intellectualism even starting the novel on a game of chess whereas Marja is rejecting the sexual advances of her husband (for fear of pregnancy). It reminded me of that peculiar characteristic of certain Nordic crime that has to place sexual torture of women central to the story and there’s always a half-naked female body on a slab for our ‘titillation’. There’s also a sense that the endless references to sex, the use of sexual language, is there to make the story ‘edgy’, a cheap trick which the novel did not need and, somehow, did not add anything.

That quibble aside, this short story of a country’s battle against hunger makes for an interesting, quick read. There is much beauty in the language, despite the bleakness of the snowy landscape against which it is set, and whilst it is a tale of desolation and loss in the end there remains hope for a brighter future. It is not an easy read, not entertaining in the traditional sense, but if you are interested in stories of endurance this could be a good read for you. For me, I am still torn.  There is much of interest and merit in this story, but it was slightly spoiled by the lazy cliché of woman as object, and I’d have liked it if Ollikainen had given Marja more of a voice and a presence beyond the physical.

With thanks to Peirene Press for the review copy