Small consolations

I have volunteered to be a parent representative on a research group examining difficult decisions made in neonatal units. Our first meeting was today.

I caught the tube to London Bridge. Alongside the moving walkway was an advert offering free life insurance for new parents. £10,000 during your baby's first year of life.

For a moment I was non-plussed. Offering to insure your newborn child from birth to the age of one for free and advertising the payout. With such jolly lettering? With cartoon rattles and nappies?

Then I tumble. It's the parents. It's the death of a parent that you are taking out insurance against. Not the baby's.

Of course.

***

We talk about palliative care. About how it should not be something wheeled out at the final pass. It should be integral to the lives of every extremely ill or premature baby treated in ICU. It should be the default, set to gradually fade away when everything goes according to plan and the wind blows in the right direction.

I think, perhaps, that this should be the case in adult medicine as well. Under certain circumstances. Although I do not give voice to this as it outside the scope of this meeting.

I do believe that as we will all, inevitably, die, it might not be a bad idea to set our minds to that final horizon. That palliative care should start at birth, the process of reconciling yourself to your own mortality. Why should it always be the feared and awful last resort?

Because palliative medicine is not about admitting defeat, throwing your hands up in the air and saying, "we did everything we could." End of life care can be a more active process than that, focused around comfort and privacy.

We talk about the conversations that we had with our children's consultants. Those difficult decisions that were taken.

Sometimes these aren't formal. They aren't in private rooms, they aren't with both parties fielding all their resources. In my experience, the truth comes out late at night, when everyone feels a bit frayed, when nobody is at their best. The final formal agreement might be clear and amiable. But it has usually been hashed out long beforehand.

In snatches of conversations on the ward, in corridors. In pleas and denials.

The conversation rumbles on, nearly five years later. I'm one of the lucky ones. It is a privilege.
To have had Georgina's death handled in the manner that it was.
To be able to discuss these matters and to hope for a change.

***

Then I bathed myself in light.

I went to an art gallery, on my own.
Because I appear to like superimposing disorientating experiences upon one another?

Light Show at the Hayward Gallery. Art installations made from light. Solid light. Light bulbs that replicate moon light. Endless churning cubes. Water fountains frozen in time by strobe lighting. Monochromatic worlds where everything appears red. Or blue. Dark places that you have to edge around, feeling your way along on the walls. Hoping not to stumble.

I eavesdropped.
On conversations about being an intern.
How not to waste your life doing something you find boring (ahem) or how working for free was slavery (ahem) which are nice dreams but I couldn't help emitting a cynical chuckle. Which I fear may have been overheard by one party.
On what other visitors thought of the installations.
On a mother talking so charmingly to her daughter that I wanted to tell her how much I had enjoyed her story about the dinosaur and how wonderful she was.
I remained silent.

I thought about the decisions that I had taken.
Hoping to be purified, hoping to be justified.
And my eyes were burnt away by the lights.