Monday, December 12, 2005

Do you really want to know?

Cynicism is the last refuge of the idealist.

Not sure who said that first but I remember realising when I was a teenager that to be cynical you need to have expectations that are disappointed. To have expectations you need to be idealistic, to believe people won’t let you down, that things will ultimately be ok, that Michael Jackson isn’t actually a paedophile. He’s just a very friendly daddy.

So maybe I was a sucker to expect this would be the last of O’s operations. That it would end here. Closing the colostomy is meant to be the simple part. That dreadful, nasty poo bag would finally be gone. That had to be good, right? At first it looked like it was.

A week in hospital. A long week. A hot week. The hottest recorded this year in fact. Walking up and down with my heaving belly from the dingy motel to O’s hospital room, telling myself that at least when this is over she’ll never have to set foot in a hospital again.

But doctors will be doctors.

Just when you think they’ve pulled everything they have from the Nasty Surprise bag, they whack out a monster with five heads and one squinting eye.

As the surgeon is about to discharge O he tells us he wants to talk to us about the pathology report. The rest of what he says is something that R and I may debate till the day we jump off the world together, but it definitely involved the words ‘abnormal intestinal cells’ and ‘neuronal intestinal dysplasia’ (that one I wrote down) and finally ‘no actual cure’. Leaving us gobsmacked, he shakes hands with R and wishes us a Merry Christmas. I hear myself mumble a non-denominational seasonal greeting and then the words ‘neuronal intestinal dysplasia’ shit themselves onto my brain.

One and a half hours to drive home and try recreate the conversation. R says he thinks the doctor said O may have it but isn’t sure. I’m pretty convinced he said she does have it. Neither of us are clear on what ‘it’ actually is. What’s clear is that O is in pain.

As we get home we leap onto the Internet. Various sites tell us Neuronal Intestinal Dysplasia is an incurable bowel disorder which can have horrible social and emotional effects and has been known to cause depression and suicide in sufferers.

This is where I feel My Self, my Strong, Coping Self, tumble into the abyss.

I read about NID KIDS (a cute name that won’t make the disease any more palatable) who have to be escorted to the toilet by their teachers. Imagine the humiliation? The social stigma? I read reports from despairing parents who are desperate to find a cure. And then I stop reading because the room is swaying from side to side and I’m heavy with grief and loss and shock.

I insist that we phone the doctor back, even though it’s a weekend. We call but get hold of the registrar. He’s non-committal. The kind of man who tells his mother he sort of got his semi-girlfriend a bit pregnant. He tells us there are support groups we can join and we should call the doctor directly on Monday. Two days to wait.

I feel myself crumble. All the strength and calm and stability I’ve been projecting for the entire year slips into a shadowy heap. I cry and cry and cry. The whole weekend. Friends phone and text to ask if we’re back from hospital, if O is on the mend. Some comment that it’s great that this was the last of it and now everything is ‘fixed’. I don’t call anyone back.

O continues to be in pain, crying out, waking every ten minutes. She’s not used to having to use her bowel and she strains and pushes and screams. She's constipated. Even removing part of her bowel hasn't helped that.

My back and legs go into spasm and keep me up the whole night. The twins inside me kick and punch and knock about. I suspect they’re angry with me for ignoring them. I check my blood sugar. Dangerously high. I give myself a hit of insulin, wishing I could follow with a chaser of smack. Just as I drift to sleep, two cats start fucking outside our window. Deathly screeches. I remember that a cat penis has claw-like glands in it that dig into a female cat’s vagina so she can’t escape his clutches. I think about a recently invented anti-rape device in South Africa that women insert into their vaginas. It clamps into any penis that enters. Then the words ‘no cure’ and ‘suicide and depression’ leap into my consciousness.

And it’s Monday morning. And I don’t even remember what happens before I speak to the doctor but he’s angry. We shouldn’t have called the registrar. No need to panic. Yes, there are abnormal cells associated with NID but that’s not a conclusive diagnosis. In fact, he thinks the cells are more a function of the bowel not being used for so many months. He very much doubts O has NID.


She’ll still need ongoing treatment and management with diet and medicine, but he doesn’t see any more surgery necessary.


I’m so relieved and confused that I start crying but have to fake composure. Nothing can lose credibility with a doctor like open crying. We say goodbye and I think I wish him happy holidays again. I may even mention Kwaanza and Chanukah. I have to keep my credibility in tact, you understand.

Then I realise I’m late for O’s appointment with the neurosurgeon.

This appointment I’m not worried about. He’s just going to check the spinal wound to see it’s healed. Then he’ll tell us to come back in a year for an MRI. Just routine.

But doctors will be doctors.

After he’s checked the wound, he casually mentions that he’s concerned about O’s bladder. We’ve never had it scanned and children with bowel and spine problems usually have associated bladder problems.

What? No-one’s mentioned that before.

He asks me if she has bladder control. Now call me ignorant, but do you know any ten month old with bladder control? She wees in a nappy for Christ’s sake!

I ask him how I’d be able to ascertain her bladder control. He tells me there’s no real way for a layperson to tell. Which is why he’d like her to attend regular sessions at the Spina Bifida clinic.

The Spina Bifida Clinic.

I once looked after a teenager with Spina Bifida. He was incontinent and angry. He had a large hump on his back that had to be constantly drained. He would have murdered someone with glee – possibly my good self - if he could have moved out of his wheelchair to reach the knife.

The doctor offhandedly tells me O’s condition falls broadly into the category ‘spina bifida’. He’s never mentioned this before and I immediately tell him I took folate months before she was conceived and continued throughout the pregnancy. He nods. This is one neural tube condition that doesn’t respond to folate, he says, handing me a referral for the clinic and ushering me out of his office. Don’t worry, he attempts, it’s not the serious spina bifida. Before I leave I hear a thin voice lurch out my throat “She will walk, won’t she?”. He pats me paternalistically. Most of them do, he says.

Most of Them.

Things I want to change in the world this week:

1. The fact that my father has to have double valve replacement heart surgery next week.

2. Medical training. Teach doctors the power of the words they casually fling at people. Test their empathy levels before unleashing them on the public.

3. Set a limit to how many doctors one patient can see in any given month. Limit this to one. The amount of doctors I have to see each month is currently:

For O:
Bowel surgeon
Stoma Nurse (thankfully I have my last post-op meeting with her soon)
Spina Bifida Clinic urologist
GP for immunisation

For me
GP for referrals
Diabetes Educator

I suspect ‘Psychiatrist’ and ‘Lobotomy surgeon’ will be future additions to my list.


Blogger Calliope said...

oh. my. goodness.
What an awful, up & down couple of days you guys have had.
I was horrified at all the omissions & facts the doctors witheld. Do these medical types not have feelings??
I am so so so sorry that you are going through this. I know that O is a trouper & I am thinking of her..

12:55 am  
Blogger surly girl said...

for fucks sake. how difficult is it for a doctor to process that they are talking to people about their loved ones? how fucking callous can those charged with being in a "caring" profession be?

sending happy thoughts to you, and a hex involving their precious bollocks to all the doctors who have pissed you off.

3:18 am  
Blogger Lin said...

Dearest Yc,

That's as far as I got before my throat closed and the tears rushed my eyes. I'll write later, but I really feel you need a medical advocate since the sodding doctors have taken leave of their senses. Bloody fools.
Love and hugs to your family,

3:30 am  
Blogger Teri said...


The only thing that comes to mind when words cannot be found: Breathe, breathe, breathe.

Love and prayers to you. xoxo

5:10 am  
Blogger Urban Chick said...


i wish i was around the corner and could pitch up to provide a spare shoulder for you to cry on

i remember times like this with chicklet #2 when every time we so much as sniffed a doctor, someone uttered the immortal words 'we need to run some tests' or 'we're referring him to a [insert name of specialist] for his/her opinion'

and i remember all the times there were working assumptions that stuff had been explained to us when it hadn't and the interweb surfing and the stomach-churning worry worry worry

anyway, i wanted to email you, but we're doing the hospital experience right now too (chicklet #2 was admitted with pneumonia on 8th and still there although improving) but i will email you soon

meantimes, i send you many a cyber hug and [insert appropriate religious or secular] seasonal good wish

UC xxx

6:46 am  
Blogger Ova Girl said...


I am so sorry, this must be unbearable. Feel a great surging mix of fury and despair and admiration at your courage and dear sweet baby O's will to keep on.

All our love
OG and C

8:54 am  
Blogger spindleshanks said...

dear lord yc. how fucking awful and what stupid morons those doctors are. and how dare he be angry at you for calling to check up on something he didn't make clear.
i hope all the news gets better.

9:06 am  
Blogger LJ said...

I can't even come up with a single word that comes close to what I felt reading that.
Maybe Ova girl had it. "Unbearable."
My heart breaks for all of you and I wish you, with everything I have, some relief. Some relief that doesn't get snatched away in the next second.

12:09 pm  
Blogger Frankenmum said...

Reading this has left me breathless, nauseous, overwhelmed. I feel so awful for you.

And it really is staggering how these doctors seem to have no emotional intelligence. It's as though they are scientists who just happen to be treating people.

I'm having great difficulty articulating my reaction... so I'll just send lots and lots of love to you all, with heartfelt belief and faith that O (and your dad) will come through stronger than ever.


8:20 pm  
Blogger Kyahgirl said...

god..this sucks. I'm so sorry yidchick.

love and hugs across the world to you and O and R.

4:45 am  
Blogger The Northernmost Jew said...

Wow, you have a lot to handle. Good luck with it. I'll be thinking about you and wishing you well.

8:24 pm  

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