Friday, 18 September 2015

We fly or we fall and that is all.

You there, in the lab coat. Yes you. Put down the pen. 

We need to talk.

You haven't really looked up since we walked in. Last I checked, we were here for you to examine my son, and there you've only been asking leading questions and making notes, rating him against some invisible scale and ticking boxes. It's incredible! That pen hasn't stopped. Your questions haven't stopped. And your paper has received far more attention than Rukai has, which tells me that frankly, you are flat out wasting our time.


I have to tell you that it's beyond difficult for me to extend the courtesy of calling you 'Doctor'. It's difficult because my son's name is Rukai and in the five minutes since we sat down you have yet to say it. It's difficult because my name is Maxine and you keep calling me 'Mum'. And there's that pen, scribbling. Scribbling. Ticking boxes. Ticking me off.

You HAVE called Rukai 'They'. You HAVE compared him to thousands of other people with a similar condition, but at last check, good sir, these other people are not Rukai and Rukai is not them. And I am not your Mum.

You have an expectation that we will hang on every word and follow your directions to the letter. That we will gladly come back for you to monitor something that's not presenting itself as a problem in reality. But on paper, it MAY. And therefore you have clear guidelines as to what you should statistically be monitoring.

But the thing is, unless there is some secret spare room in our home that you are living in, I'm afraid the scale tips to me when it comes to identifying what we should be monitoring. Just because Rukai has a disability does not mean that we are unable to look after him. If there were no third copy of the 21st chromosome floating around in his blood, you wouldn't even consider his current condition worth monitoring. He is developmentally delayed and that is all. Other than that, we just don't see any issues. But there you all just keep LOOKING for them.

Rukai is a unique individual, just like you, and as HIS Mum, I know him best. If you had spent these first five minutes looking at us and asking me whether I'd noticed any changes, or how his behavior had been recently, If you had spent these first five minutes engaging with your patient -one boy named Rukai - rather than immediately begin comparing him to thousands of other people, you would have his truth before you. I don't care how many patients you have seen over the years, you have not met Rukai until today, and today is when you first learn about Rukai.

Statistics are guesswork. Life is too short to live tunnel-visioned in the grey. Statistically I wasn't supposed to leave America, move to England and marry an Asian man. Statistically, an Ivy League graduate is not supposed to become destitute and die of alcoholism. Statistically you’re not supposed to be able to land a jumbo jet on the Hudson River. Do you now register the falsehood of supposition?

We fly or we fall and that is all.

I find it both comedy and tragedy that society is perennially patting itself on the back for celebrating difference: in religious belief, gender identity, political persuasion, hair color, body shape, cripes how much time have you got? Yet here, where it really matters, when you're talking about the very thing that makes us unique -genetic material, human DNA - you group, box up and throw away. You spout 'They' and tick those damned boxes.

The ridiculousness of it is astonishing.

And now that you've not paid him any attention, you go and run some play based testing. And guess what? Just like any other kid on earth, if you aren't engaged with him, he won't be interested in you. And he won't play. Do not DARE assume this means he cannot.

And you write in terms of how he 'is'. Based upon 60 minutes of a life that has already gone on days, weeks, years without you in it. 60 minutes with your pen inking commentary which would fade and wash away if you left it out in the rain.

Place Rukai out in the rain and he will tilt his head back and laugh and flinch and maybe go and stomp a puddle. He will not fade. He will not wash away.

I appreciate your time is limited, so we have to wrap up this meeting. But our time is limited too. So unless we notice a problem, we're going to be a bit more selective about how much of that time is spent with you in the future.

In the mean time, I'd ask you to remember what brought you to medicine in the first place. You wanted to care for people. To serve. To listen and to respect. To advise and to heal. But with years of practice, I'm sure there's monotony, repetition, boredom. Paperwork. I suspect it's become far too easy to categorize people just to get that revolving door of endless patients to cease spinning. It's so much easier to find a common thread and close the chapter than to uncover a new story. But I challenge you to remember why it matters to society that we celebrate difference. Remember why Rukai matters. Because we all have a unique contribution to this life, 46 chromosomes, 47, whatever count, he COUNTS. He has a name, and a story, and unique potential. He has likes and dislikes. He is not 'They'.

Your pen and that notepad will not remember this day but I will. Don't make me remember you as someone who threw away my only child but rather as someone who 'got it'. There is very little I need more from you.

Good day, Doctor.