Showing posts with label sadness. Show all posts
Showing posts with label sadness. Show all posts

Monday, 25 June 2018

On fallibility, humility, and responsibility in science

It has been a rough seventy two hours in the lab. Things have gone very very wrong. We have lost a lot of animals to an unknown illness that is swift and lethal. All day we have felt powerless, and the day ended in a succession of necropsies. More dispiriting, this is the second attempt we have made at this particular experiment. It started out much more promising than the last, but very suddenly, we were once again confronted with how little power we have over biology.
We work on an animal model of infant physiology, which means we work on infant animals. Few people do. It is difficult and demanding work. Infants have care needs beyond what a university animal facilities can provide (though ours have accommodated ours to an astounding degree). So we must step in to feed animals and care for them. Our bigger problem is this: there is little data on infant mammalian physiology, particularly for large farm animals like we work on. I remember a few years ago when we were having problems with our anesthesia procedure. Every vet and textbook in the country swore by tylezol for inducing our animals. It may have worked in adults, but it was useless in infants.
For the past two years we have increased the complexity of our experiments. We now raise the animals from birth, when they are most vulnerable. With full term animals, we had good luck. We got all the data we needed, and felt confident we knew what we were doing.
The grant that was funded however, called for doing the project in premature animals.
There is a very good reason for this. Human premature babies have a host of complications, in particular with regard to feeding and respiration function, which is what we study. Yet it is almost impossible to do the type of research we do on human babies, because it requires X rays. This is doubly the case for premature babies. Crucially, only babies diagnosed with problems can be enrolled in research studies for what we do. As a result, we have no idea what non pathological physiology in this system looks like for newborns, either full term or premature. The work we do addresses a critical gap in pediatric physiology.
Nor did we rush into this blind. We have years experience caring for young animals. Before this project, my PI found a team of researchers who do research in our model on animals far more premature that we were planning. They have come to visit us and us them. We discuss our problems with them regularly. And, thanks to them, our care of full term animals was a resounding success. We were cautiously confident.
The first preterm litter was a disaster. Only a single individual survived past 48 hours. It was pretty much our worst case scenario. We sat back, took stock. We bought better incubators. We developed new protocols for cleanliness and care. We settled on a slightly less premature age for our animals, scaling back our ambition in the face of how much more delicate these preterm animals were.
Again, we thought we were ready.
The delivery of the litter went amazingly. Sixteen healthy newborns in two used medical incubators. For 48 hours, we felt good.
Then they started to fall ill. By Saturday evening, two were refusing food (a very bad sign). By sunday morning, they had started dying. Today was almost like being in a hospital during an outbreak. It was utterly heartbreaking, and sobering.
We pay for our experiments in effort. I have been working well over fifty hours since Wednesday, like everyone in the lab. And we care. Our animals are helpless. And so we try to marshal all our resources to help them when they are ill.
And today I was reminded that we too are helpless.
We are working on a animal model of an incredibly vulnerable patient population. That vulnerability is baked into the very experiments we proposed to undertake.
I understand a little what working in a neonatal ICU must be like now. I understand what realising how little you know, and how little you can do, must feel like now.
As scientists, we plan experiments. We anticipate contingencies. We think about physiology, experimental conditions, confounding factors. Yet when we create animal models of disease, we create, in effect, patients. And we are suddenly faced with the maddening, terrifying, awe full power of illness. The limits of medical science, laid bare in our own research labs.
Hopefully, the remaining animals will survive. We will get data. We will feel our bargain with our animal subjects has been at least partially fulfilled.
But today, I think, I confronted the limits of what I do. Today, I think, we all felt, perhaps, we were getting close to the point where the price of the bargain is too high.

Friday, 2 February 2018

On the vastness of friendship

We had nowhere to go.

We were on holiday in a part of France where we knew no one, in a decidedly less than glamourous rental cottage, 1000km from the nearest family, when the phone rang. It was my father, calling to say that he wouldn't meet us in Alsace later in the summer, that he wouldn't be at the house in London when we got back. Finally setting fire to a year and a half of hope and wishful thinking. Detonating, as my sister puts it, our too perfect party of five.

We were alone, and already the maelstrom of pain and incomprehension started spinning, so that we were alone even from each other. And we had nowhere to go.

My mother did not have much of a family. Partly as a result of being the very youngest, but mostly because her own mother, not being a very nice woman, had atomised the family, reduced it to constituent parts that repelled each other. As far as I can tell, from the age of roughly 18 to 29 when she married my father, my mother's contact with her own family was minimal, and strained. There was little pleasure in it. But my mother instead busily built herself an army of friends. To this day she maintains the ability to find kindred spirits and make friends with them, so that she has true friends, spanning multiple generations and multiple continents. But it is in the crucible of her twenties that she forged her deepest friendships. She sought out lifelong friends at bad concerts, yoga retreats, one off mountain activities, as well as in her university courses. My mother built herself an family of friends that probably helped her survive her twenties, in much the same way, I realise, that my brother's, my sister's, and my friends helped us survive the disintegration of the first version of our family.

One of my mother's best friends was a painter she met at a (apparently very bad) concert in Strasbourg as a student. This women was fifteen years older than my mother. A mother of two, a wife, a free spirit, and an exceptional, talented, thoughtful painter with no gift for self-promotion. By the time of that fateful summer she was a widow, and lived, in her own way, as bohemian a life as the middle class widow of a company doctor living in a rather stayed provincial town could. She had turned two whole rooms in the large, XIXth century apartment she rented into her studio. There was a magnificent winter garden filled with ancient houseplants in large cracked pots. She had, years ago, repainted a whole wall of the long hallway. As she had been in geometric phase at that point, it was in fact a mural of bold geometric shapes. And on every wall in the house hung her canvases. A rotating cast of her latest works (she painted prolifically). Abstract, unframed, untitled composition in rich textures of black and grey, with flecks of red paint and gold dust. Throughout her life she challenged herself as an artist, subtly but continuously so that year on year her paintings became an evolving text of her own thoughts about her art.


The only picture I have of one of her paintings. Uncharacteristically pink.
That summer, my mother called that friend. And she told us to come and stay with her. Not at the apartment, but at her other house. I had been to that house a few times as child, and remembered it as a remote and beautiful place. Returning there that summer, lonely, afraid, distraught, angry, I rediscovered it, and found it was a dream. The house was an old farm in one of the less beautiful valleys of the Vosges mountains, nestled up against the mountainside on a dirt road. But, in a fit of whimsy, a previous owner had had the meadow in front of the house landscaped into a magnificent garden centered around a lilly pad covered lake. There was a stone terrace by the like surround by intricately carved old topiaries. There was an island, accessed by a little wooden bridge on which stood a wisteria covered boathouse with an open air dining area attached. There were huge magnolias, yew trees, Japanese maples. The place was an effervescence of life and greenery.

The house itself was not grand to match the garden. But over the years my mother's friend had added there what was important. A well stocked kitchen. A large fireplace in the dining room. A bookcase full of an eclectic and thoughtful selection of books. She always said she did not paint at that house, because nature was too distracting there. But I also think that her art took a different form in that house: where her paintings explored her ideas about life and humanity in the abstract, in that house, she put her humanism into concrete action. Or at least, that is how it feels to me now. Because what happened that summer was simple, but immense: my mother's friend opened her house to us, and kept it open, so that we could grieve, forget, and eventually heal. There was no time limit to the gift. We went back summer after summer after summer, and she welcomed us with the warmth of her hearth and her heart.



Our society does not really know what to do with friendship. It is rarely the topic of any films other than war movies. It is not protected by any legal status. Would we classify friendship as an institution, like we do marriage or parenthood? Yet, its gift, when given, transfigures uur world. All the more so because it is compelled by nothing more than the friend's own love. My mother's friend, who became my friend, saved our family, for no other reason than she loved my mother.

I remember waking up in that house one summer. It had heavy french shutters so the room was pitch black until I opened the window, then the shutters, and let the bright sun of an Alsatian August burst into the room. In the distance was the blue sky between grey green mountainsides, a backdrop to the symphony of vibrant green coming from the garden. And below me, on the dew soaked lawn, I heard my mother and her friend, who had been up for hours, laughing and talking as they helped themselves to bread and honey from the beehives up the hill. I called down to them from the freshness of my well rested youth, and they called back to me from the freshness of their friendship, not needing me to join them but glad for me to come. It was art, a poem in the morning light, a gift beyond value.

In memoriam.

Monday, 13 March 2017

Hosting the Moirai

A few weeks ago, my aunt died. She was my mother's elder sister and, owing to my family's complicated history, one of the few members of the extended family to which we were all genuinely close. Like my mother, she was a proud, force of nature of a women. Based, in part, on the fact that like my mother, she was more or less on her own from a young age.
My mother's mother was born in 1900. She died six months after my birth. My mother was the youngest of all her cousins (on her father's side, she had six aunts and uncles, so there were many cousins). And I, born 83 years after my grandmother, am the youngest of her grandchildren. My eldest cousin is more than 20 years older than me. My mother's cousins (those she was still close with) were grandparent aged to me. I saw them once a year, and though our relationship was pleasant, it was never close. They were part of the holidays. And besides, when they got together with their youngest cousin, they talked of family mostly long dead, and memories long past. I learnt a lot from them about how the world had changed, and about my history, but mostly through listening to the stories they told each other.
My aunt was different. She never missed a birthday or Christmas to call us. None of us would consider going to Paris without visiting her. My mother and she did not have the easiest relationship, but they have never waivered in the affection they have shown each other's children. Perhaps sometimes, that was easier than speaking directly.
I miss my aunt dearly. And beyond her, with her passing I have lost the closest thing I ever had to a physical home in France, her holiday house in the Alsatian Vosges mountains, to which my mother always had a key. Now that I will no longer take the train to her little Paris suburb for dinner or lunch when I visit that city, it will become a little less friendly to me. I am thankful my husband got to meet her twice. I am thankful she adored him (despite the language barrier). I am thankful for the beautiful cross stitch sample she made for us, despite cancer and chemo and caring for her husband as dementia and ill health weakened him. She survived him by less than six months.


But as hard as loosing my aunt is for me, for my mother the sense of loneliness is vast. In the past years so many of her old friends have become weak and frail, have started one by one to take their leave of us. When they started weakening, my mother, who has the energy and physical fitness of a woman twenty years younger then she is, was irritated at them for not going on walks with her anymore, for no longer staying up until 2am to talk. Now she understands; she is resigned; and talks with her old friends, though more important, no longer bring levity and joy to her. She returns from trips to France drained, and needs time with her younger friends, her children and grandchildren to regain her energy.
With the loss of my aunt, only one person, a friend from Kindergarten, is left who remembers my mother's childhood. And the first five years (which for my mother were defining to her life story) are now remembered only by her. She has entered a period where, increasingly, more and more of her life can be confirmed by no one. And, as my brother points out, there is now almost no one left with whom she can speak the dialect her own grandmother (born in 1870) taught her. Strands are being cut, and my mother feels it.
Of late, she has begun to speak more of her own passing. Not in a morbid way, but in a pragmatic way. She is counting down. She knows she can no longer count on an endless bounty of more time. She senses both the urgency of doing what can still be done, and the knowledge that less is possible. In part, this is because of what is happening around her. In part, and I know my mother enough to know this, it is because of what she has read. She is preparing herself, training herself for a new phase of life. I know this because the same thought that is animating her has returned to me: the French philosopher Montaigne's famous aphorism:
"que philosopher, c'est apprendre a mourir"
"Doing philosophy, is learning to die"
To which I would add, it is also learning that others die.
With my aunt's passing, and my mother's words and stories, a new presence enters my life: the Moirai, the three sisters of Greek mythology. In the past, they have visited suddenly, and departed. But now I see they are here to stay. They are in my house, and it does not do to deny the Gods. Clotho is spinning thread more slowly, and Lachesis casts a more judicious eye on how much she draws out. And Atropos, having just used her scissors, has put them down. But they hang from her belt, always within hand's reach.

The Moirai are here, and their presence is a warning, but also a gift, in the manner of Greek gods. They are here to tell me I can no longer ignore them, and I must act accordingly in what I do.

Sunday, 12 June 2016

There is work to be done

At our wedding a little over a year ago, my mother gave a speech. It was not the standard wedding speech, about me and my husband and our love. Rather, my mother, historian, 60s revolutionary, woman, gave a rousing barnstormer. She celebrated and reminded all of us present of all that had been achieved in living memory to make our same sex wedding, surrounded by friends and family, possible. And she ended with a warning, a warning that none of these things that had been achieved were set in stone. That there were forces set on taking them back. We all loved the speech; it is one of the things that everyone remembers from the day. But after today, I find myself looking back on my mother's speech, and wondering at her prescience.
Two men set out to kill LBGT today, in the midst of our month of celebration, in our safe places. One of those men failed, thankfully. The other succeeded, horrifically. Their stated reasons were probably radically different. And here lies a deep, sad, awful truth of today: there are many, many voices in the world today that will preach murderous hate of LBGT people. And many of those voices have great power and great reach. Some are adherents of violent Islamic sects, some represent strands of Christianity in Africa, or the US, and some are simply political viciousness. We cannot pretend those voices are not there, are not loud, do not have power. We cannot pretend that those that would harm us have been kept in check by recent changes. We cannot pretend those changes are  not still weak, and could not be taken away.
And so, there is work to be done. Have some of us become complacent? Perhaps, but let us not be too harsh on that. The illusion of normalcy, the scenery of security, how long some in our community have yearned for those. It was tempting to buy into that. I doubt there is an LBGT person in the US who still feels secure today, no matter how blue their postcode, how nice their wedding album. It is a hard awakening.
What is to be done? We must, in our communities, our schools, our families, oppose those voices, even if they are just whispers. We must affirm those who do righteous work, who support and embrace the humanity of queer folk of all stripes unequivocally. And in our communities we must censure those, no matter where they come from, who equivocate on this. Note I said censure, not censor. This is not about legislating hate speech, or tiresome debates about freedom of speech. This is about the values which we choose to uphold. We cannot allow these voices of hate to nourish the actions of those who desire to spill blood for infamy.
It is unacceptable that the humanity, indeed survival, of LBGT people are used as political tools in Africa and the Middle East. It is unacceptable for Islamic clerics, or evangelical church leaders, to preach death against non cis-hetero people. It is unacceptable when the Catholic church denies the full love of God to its gay members, and ignores its responsibility in their suffering as a result. It is unacceptable that the Anglican communion has chosen a fig leaf of unity at the expense of upholding the humanity of its LBGT congregants. It is unacceptable that the dignity of Transgender individuals has become the political tool du Jour in American culture wars.
And conversely we must affirm what we believe. If your school does not have a PFLAG chapter, found one. If your congregation is not explicitly inclusive, demand change or leave. Do not sit through homophobic sermons, or speeches, or thanksgiving tirades. Do not let children learn cruel patterns from the adults around them.
Some of these changes will require law, and we must agitate for that. But others, many, will require instead the difficult work of changing a culture, changing what is acceptable. And we must support all those who affirm our humanity, as much as we censure those who do not.
The epidemic of American mass shooting indeed has causes outside homophobia, or racism. But those who commit these acts do so in a complex cultural bath that involves gun culture, notoriety, and social rhetoric about who is other, who is less than, who is to be hated. We must fight those who provide justification for violent hate, and stoke the fires of murderous rage.
The arc of history does not bend toward justice; we pull it there.