In a few moments, we’ll begin our Yizkor service,
and I know that many of us who are here today have memories of beloved
relatives so close to our hearts and minds at this time. But I want to take
this time to talk, not about those who are no longer with us, but us, who are
here, and our relationship with our own mortality. Specifically, I want to talk
about breast cancer.
I have a remote, but still nasty, relationship with
breast cancer; in my life, my work, and my faith.
I never met my mother-in-law. She would have been
70 this year, but died of the disease before I met her.
A BRCA1 mutation - the single most significant important
predictor of breast cancer - wanders through my wife’s extended family. As, of
course, it wanders through other families in this special community, and
others.
Thinking about this sermon, I’ve spoken with
several BRCA mutation carriers, I’ve heard them called previvors – I like that
term. I’ve spoken to cancer survivors and previvors who’ve chosen to remove
breast and ovarian tissue, women who’ve chosen to remove breast tissue, but not
ovaries, and ovaries, but not breasts.
I’ve spoken to a previvor who had a ‘bye-bye-boobs’ party featuring
pink-frosted cupcakes with nipples. And I’m sharing this sermon in honour of all
these remarkable women – and men – who’ve fought the cruel irony – that the ovaries
and the breast – the source of human life - can become lethal if a microscopic
chain of amino-acids don’t behave the way they should.
Let me back-track. Somewhere in our vast genome –
on the long arm of chromosome 17 – we carry a gene that regulates the repair of
broken threads of DNA. It’s called BRCA1. And there’s another gene on Chromosome
13 – BRCA2 – that does much the same thing. And if these BRCA genes are doing
what they should do, broken threads of DNA get repaired perfectly. But certain
kinds of mutations in these genes can result in mis-repairs and these
mis-repairs, can result in tumours, tumours in breast tissue -for both women and men - and ovarian tissue
especially.
And then there is this; certain BRCA mutations have
a particularly high incidence among Ashkenazi Jews. In the general population 1
in 400 people carry one of the over 60 different kinds of BRCA mutations that
have been charted. Among Ashkenazi Jews, 1 in 40 of us carry one of three BRCA
mutations, all of which are dangerous.
Earlier this year I was flown to Brazil to
officiate at a wedding of two of our members here – perk of the job. At the reception
I was talking to one of the guests, Renee, who told me she carried a BRCA
mutation and had not only taken some serious decisions about how to respond
herself, but she had also set up an organisation in Brazil to support Jews
getting screened and giving support.[1]
Renee told me that until she set up her
organisation there was very little information available in Portuguese and very
little support available in Brazil. I told her there was a terrific organisation
doing similar work in this country – Jnetics. I’m a fan. There’s some
information on their work in the foyer. Their founder is the daughter of
long-term members here.
And then Renee told me the thing has been gnawing
at my mind ever since, ‘JNetics,’ she said, ‘nice name, I called my
organisation Brachah’ It was late in the evening, the music was playing, she
had great English, but a heavy Portuguese accent and I had to ask her to say it
again, ‘Brachah – like BRCA. They sound the same’
And this is the thing I’ve been thinking about,
ever since – where, in all the nastiness, pain, and sheer mortal threat of breast
and ovarian cancer – does a person find Brachah – blessing?
The thing about Renee, and many of the women I’ve
spoken to, who have responded to news that they carry a BRCA mutation by
choosing to undergo surgery and the like is that, when they talk about their
lot, they tend to use words like ‘blessing,’ and ‘being grateful’ more often
than you would imagine.
The keyword, for so many of these women, is agency
– the ability to exercise control over that which threatens to control you.
Susan Sontag, who had just been diagnosed with cancer herself, wrote in 1978
about the way we talk, or at least talked, about cancer. Cancer, she wrote, was depicted as “an evil,
invincible predator, not just a disease.”[2] Cancer was seen as an
automatic death-sentence which could be delayed, perhaps, but no more than
that. Cancer, back then, seemed to enable no decisions, no agency. That is, if
one even knew what was going on. Sontag records a conversation with a French
oncologist who told her that a fewer than a tenth of his patients even knew
they had the disease, it was considered too distressing to tell anyone who was
not ‘exceptionally mature.’
And now comes, among so much extraordinary
scientific and medical progress, the discovery of these BRCA mutations and a world
of questions and decisions that are, I know they are, scary and complex and we
would wish nothing more than not to have to face them. But cancer is not
invincible, it’s not even inevitable, not even for previvors who carry BRCA
mutations.
Nowadays, previvors step into a world of percentages;
the likelihood of contracting this cancer, or that, before or after this age;
the degree risk can be reduced by electing to have prophylactic surgery – the
counsellors you need to see before you can go under the scalpel don’t call it
preventative surgery because, like so much else in this murky uneasy world, not
even surgery comes with a guarantee. It’s knowledge, but it’s not certain. The
cancer previvor and the cancer survivor inhabit a world between thinking they
can live forever and feeling they are the inevitable victims of Sontag’s
‘invincible predator.’
Perhaps, seen like this, these previvors aren’t so
different from the rest of us, those of us with perfectly functioning BRCA
genes, but nonetheless destined otherwise to mortality. Perhaps you, or I, carry
a genetic marker that predisposes us to one illness or another, by some percentage
or another, or perhaps we don’t carry a marker, it’s just that mortality will
visit us for some other reason. Maybe the thing that will get us is
spectacularly unlikely, but even the tiniest of percentages will manifest
somewhere, on someone.
As science does that thing that science does, we
will find out more and more about our predispositions to mortality in its
different forms. And we will be given more choice about how to balance the
desire to live in ignorance of what is coming, and the desire to know – to
manage our choices.
Back in the late 1970s, Sontag wrote that we are
born with dual citizenship; membership of a kingdom of the well and a kingdom
of the sick. We all wish to use only the passport of the kingdom of the well,
she wrote, but ‘sooner or later we have to identify as citizens of that other
place.’ But surely, we are all in the same kingdom, the kingdom of life which
is both astounding and glorious, and fragile and mortal. We are all sliding up
and down a scale of confidence in our strength and awareness of our fragility.
And we are all juggling bits and pieces of
knowledge as we slide up and down the scale. Sometimes the knowledge comes
delivered by a professional genetic counsellor who’s looked into the very
depths of our chromosomes and can give us statistics backed up by peer-reviewed
research. And sometimes the knowledge is chaotic and second-hand and quite
possibly nonsense. What’s that about turmeric, and is red-wine good or bad for
you this week? It’s hard enough just avoiding the things we know are bad for us
when there are so many more complexities being revealed by science.
Well, here’s the bad news for anyone who finds this
mass of options and knowledge and confusion frustrating or intolerably morbid;
the future is going to present us with more of this; more complex knowledge, less
certainty, more uneasy squirming in the face of increasing understanding of
exactly how you or I are most likely to die. We would do well to be ready for
this brave new world – more ready than we are.
Let me share three lessons I’ve learnt from the
previvors and survivors I’ve met.
The first is; get knowledge.
None of the previvors I have spoken with regrets
getting screened. Not that they advocate everyone getting screened regardless
of their age and stage of life, but get the knowledge about the right age and
stage of life to be screened and get the knowledge. It doesn’t make things
easy, but the knowledge is worth it.
In some ways the Ashkenaz Jew in the screening room
is back in the Garden of Eden, standing before a tree which will allow us to
understand things we will never be able to un-learn. The tree promises
understanding but that could come at the cost of the myth of our immortality.
But here, there is no command to avoid the fruit. Rather, in a post-Eden-world,
perhaps the best guiding principle is this verse from Deuteronomy. ‘See I have
placed before you blessing and curse, choose life so that you shall live.’
Again, there is information about JNetics in the foyer if you want to know more
about screening.
Without understanding, our life choices are no
better than random guesses. With knowledge we gain the ability to make
meaningful choices. Knowledge is the gateway to the second great lesson I’ve
learnt in these conversations.
And the second lesson is; claim agency.
Make meaningful choices. None of us can direct the
totality of our existence – that’s the great religious truth of our day, but we
do have some power over some elements of our fate – so we should claim the
right to make these choices.
It once happened, the
rabbis teach in Midrash Tanhuma,[3] that the Roman Emperor Turnus
Rufus and Rabbi Akiva were debating. ‘Which is greater’ the Emperor asks, ‘the
works of God, or the works of humans?’ ‘The works of humans,’ the Rabbi
responds.’ ‘But how can you match the heavens and the earth?’ the Emperor asks.
So Akiva brings out some stalks of wheat and some loaves of bread and says,
‘These are the work of God, and these are the work of humans. Isn’t the bread
better than the stalks of wheat?’ The Emperor acknowledges he is defeated by
the Rabbi who believes in the greatness of human agency.
In our claiming agency over our lives, we justify
and celebrate our existence. Exerting
agency over our lives stops us from being nothing other than a sufferer, a
victim, it allows us to become the actor – the star, the hero of our own story.
I mean we talk about a book of life and a book of death on this holy
day, but we are all going to die eventually – that’s the one shared decree we
all face – so the question is rather – what do we do with the life we are
given. What difference can we make, over our own life and the lives of others
while we have the chance?
There are always decisions
of agency to make, certainly in the case of BRCA mutations and even at the
end of life.
Get knowledge, claim
agency.
And thirdly, find
the Brachah – find the blessing, if at all possible.
Maybe blessing – Brachah
- is too provocative a word. I know this is a tricky one. Maybe a better Hebrew
word would be Todah or Modeh. Modeh is usually translated as ‘Thanks’ but it
actually means something that doesn’t really translate into English. To be
Modeh is to acknowledge the gift of existence as a whole, even if the momentary
experience is painful and challenging. Being Modeh is not about being grateful
to carry a gene mutation or being thankful to have cancer – God forbid. But
there is something about finding gratitude in our encounters with life, even
with its pain and inevitable mortality, that can lift us and attune us to what
it means to be alive – and it is beautiful and wonderful to be alive, even in
pain and mortality.
I know this is
difficult. And I don’t want to judge anyone who experiences pain and simply
wants to say – stuff this, this is awful. Pain is never good. But I’ve seen, and
I know many of us have, people who can experience pain and still find this
quality of being Modeh.
Judaism doesn’t
want us only to bless, only to express this quality of being Modeh, just when
things go well. The Mishnah states Hayav levarech al harah cshem shehu
mevarech al hatovah – a person should bless equally when things go well, as
we when things don’t.[4] It’s a challenge, but
cultivating that sense of being Modeh allows us to feel empowered by our acts
of agency. We might not change the outcome, but we can change the way we
experience our pain. That’s not insignificant. In fact, it might be the very
greatest act of our humanity.
Let
me share one example. Judaism has, of course, if does, a blessing to be said
when you go to the toilet.
It's
a blessing that thanks God for creating in our human bodies, holes and pipes
and pipes and holes. Galui va’Yadua lifnei kise kevodecha – it is revealed
and known by You – God – that if one of the holes that should be opened should
close, or one of the pipes that should be closed would open, it would be
impossible exist, for even a moment. Blessed are you God – the blessing ends –
who does wonderous things.
It’s
a great blessing to be said when everything is going well with our bodies and we
feel capable and powerful. It’s also a great blessing to be said when … it’s
not and we become assailed by a sense that we are nothing more than fragile
physical entities guaranteed only to decay.
I’m not trying,
necessarily, to advocate the formal words in the siddur. I think you can
express this idea in so many, many ways. I’m also not suggesting that a person
shouldn’t feel angry, even express anger and bitterness and all the rest of the
emotions that come up when we experience our own mortality in this way. Cultivating
this sense of Modeh, while being angry at being ill and fighting with every
ounce of our strength to get better, that can all fit together as part of a
commitment to finding the very best in the lives we can make for ourselves. But
somewhere, somehow, it's helpful to cultivate a sense of being blessed, a sense
of being Modeh.
Judaism at its
best doesn't lie. It doesn't offer panaceas to the inevitable human condition
of mortality. But it does tell us to get knowledge, to claim agency and to find
blessings. I think that’s because getting knowledge, claiming agency and
finding blessings transforms us from being the victims of a sick irony like
cancer and into human beings in the very fullest sense of the term. Getting
knowledge, claiming agency and finding blessings makes us the heroes of our lives,
it frees us from suffering, even if we do experience pain.
May we all be
spared from any experience of pain in this year to come, but should it come,
may we play these roles – of seeking knowledge, claiming agency and finding
blessing with distinction and courage, both in this year, and in many years to
come.
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