Monday, December 19, 2005

You Can Choose Your Friends...

Synchronicity can be a beautiful thing. She’s the big, fun sister of Coincidence. Usually, she’s benevolent. She helps you find a great book on a bench just as you’re bemoaning the lack of something interesting to read. She facilitates an accidental meeting with the man you’re madlusting for just after you’ve had your hair done. She ensures your sister-in-law has finished having her children when you start having yours so you inherit an entire wardrobe of lovely baby clothes.

Usually, Synchronicity smiles on me but today, the day I’m due to take O to the Spina Bifida clinic, she’s pissed off. The morning starts at 4AM with O screaming her guts out. She’s in pain, uncomfortable and tired. We spend four hours consoling her then R has to leave for work and I’m left trying to contain her pain while my back aches from the pressure of the ever-growing twins. An hour later, I bundle her into the car and we’re off to the hospital for the dreaded Spina B appointment. The first face I see as I’m entering the waiting room is the angry boy (now man) I used to look after ten years ago. Sydney isn’t that small of a city. There are at least ten hospitals with spinal wards. Why would I be confronted with the one person I know who has a neural tube defect in this entire town? He’s still in a wheelchair, the hump on his back even more pronounced than I remember it, but his face has changed. He looks peaceful. I greet him. He recognises me, is polite, charming even. I note the easy way he jokes with the doctors and nurses who minister to him. I know I should feel happy, relieved that he’s less belligerent, at peace. But something about his ease is making me terribly uncomfortable. He’s accepted his fate, I realise. He’s not fighting anymore. He knows he’s lost.

I don’t have too much time to dwell on my placid friend before Doctor Loud Bowtie grabs my hand, squeezes O’s cheek and welcomes us to the clinic. He’s irritatingly friendly as he explains O will be seen by several doctors this morning. It’s the team approach that helps “these kids” get proper treatment, he claims. A good theory, but with O and I both utterly exhausted from the morning’s shenanigans, the prospect of seeing seven doctors in a row is as appealing as having my teeth removed by a Nazi with a bleeding gum fetish.

First up is a neurologist. He’s young. And cocky. He tests O’s reflexes and pokes her with a sharp implement in various body bits, all the while making me repeat her entire medical history to him. When he’s finished, he smiles paternally. Yes, he says, she has diminished sensation in certain parts of her legs and buttocks. You do realise there’s a chance she May Never Walk.

He said it.

The thing I’ve been fearing and hiding from and praying no-one ever says.

But she moves her legs, I tell him, quickly. Like I can eat up the words his said if I just talk fast enough.
Yes, he says, but does she take weight on them?
No, I stammer, but she’s recently had spinal surgery and she’s been in hospital six times in ten months and she-
He stops me. It’s a matter of wait and see, he tells me. The urologist will see you next.

I stumble through 5 more doctors, scarce hearing them as I repeat O’s medical history with less and less coherence. All I can think of is the neurologist’s flippant words.
She May Never Walk.

I manage to gather that the urologists will order a scan of her bladder and kidneys. I’m not sure I want to know why. The orthopaedic surgeon examines her and says he doesn’t think she’ll need orthopaedic surgery but will reassess her regularly. The neurosurgeon examines the scar on her back and mutters something about being lucky the cord was tethered low rather than high. And the rest, I’m afraid, is a blur. Until we get to the final medical professional – the physiotherapist. She takes one look at O and comments on how lovely her leg movements are. That’s all is takes, someone being nice. I start to cry the tears of a mentally unstable woman (they’re huge fuckers, these particular tears, and they come with an unnaturally guttural heaving noise which resembles a cow in labour). The physio quickly draws the curtains around us and tries to console me. I explain what the neurologist said. She shoots a dagger glare his way and reminds me that doctors are often trained to give you the worst-case scenario. Yes, O will need help learning to walk, but it can’t be said that it won’t happen. She tells me she won’t do an assessment on O now, I should come to the clinic in the New Year and we can do it then. When I feel better. It doesn’t even bother me that she’s using the tone I’m sure she reserves for schizophrenics and small animals.

I stagger away. Dr Loud Bowtie puts his arm around me and tells me he hopes my first visit to the clinic wasn’t too traumatic. He’ll get “the girls” to make me another appointment for January. You’ll get used to it, he assures me. It’s all a lot to take in the first time. The more he talks, the more panicked I become. I don’t want to get used to it, I don’t want to ever have to come back, why don’t these people and their tests and their invasive implements and predictions about my daughter just leave us alone? I feel myself slip so far off the precipe of rationality I almost reach New Zealand.

But it’s the final words that Dr Bowtie hurls at me that push me into a new dimension of madness.

Welcome to The Family, he says.

And no matter how far away I push O’s stroller, I can’t help but fear we’re going to be forever related to these people in ways I haven’t even begun to imagine.


Blogger LJ said...

Aw darlin. Sending you my love...which is about all I can do.

1:56 am  
Blogger Urban Chick said...

oh, honey

no words, just (((hugs)))


3:02 am  
Blogger Lin said...

The insensitivity of some doctors is beyond staggering. You have your own family and for someone to misuse that word pisses me off. Nothing is fully cast yet, either, and you need time to absorb what's been said and what your plan will be. It's also still very early days (post-surgeries) for little O to be showing just what her little legs are capable of doing. I wish I were closer and could just give you all big hugs.

3:32 am  
Blogger Kyahgirl said...

waht the hell is wrong with that doctor?
I wish I could just wrap my arms around your little family and give some more support.
big hugs,

3:41 am  
Blogger fairyworshipper said...


when the hideous and obnoxious gastroenterologist was happily diagnosing yours truly, he sternly told of how high my chances of bowel cancer and a cathetar bag were. from that moment on i heard nothing else. i left with only the words 'cancer' and cathetar bag' in my head. hysteria set in whilst heading to my car after same appointment. dr dad assured me that such dire and ominous warnings (threats) comes from a fear of litigation, courtesy of my old profession. same hideous gastro also mocked alternative therapies and diet as possibilites to alleviate my ' chronic illness'.

as you know, i now take no medication. at all. ever. my 'chronic illness' has normalised through, yep, alternative therapies and diet. i hope dr gastro chokes on a cathetar bag.

the reason for my tale is to remind you of the many many possibilites that are feasible. and, lastly, i did a yoga intensive last week with one of the country's most remarkable yogis. he was diagnosed as being a hunchback at 17 and told to give up on life. fear and the prospect of never walking prompted him to assume a different reality and defeat the prognosis. he chose his own path as you and r and o will do.

sending you love strength and blessings

10:03 am  
Blogger Charlotte said...

My mother cried when I read your entry to her. I was born with a congenital hip problem and she carted me round to every orthopaedic surgeon in the country. Until we saw the guy who finally treated me, each prognosis was worse than the one we'd had before. My mother was told that I would have to have surgery every year until I was 18, that I would never walk without a limp, that my mobility would get progressively worse and that I would be riddled with crippling and excruciating arthritis by the age of 25. My cousin (by marriage - she was not related to me) had the same problem as me (she is the same age as my mother) and she was bedridden by the age of 40 and wheelchair bound for many years prior.

Everyone seemed to think that that might be what I was headed for apart from the doctor who eventually treated me. He was wonderful. I had my last operation at 6 and now, at 29, I walk just like everybody else, no limp and no pain.

Doctors are arseholes. They forget that they are talking about human beings and they never seem to remind you that things are at least as likely to turn out well as they are to turn out badly.

11:27 pm  
Blogger -Rama said...

some of them might some day become familiar/family in positive and affirming ways - sure there must be a very interesting and supportive community of people out there in this - so sorry it is so sore sending love and love and love

2:04 am  
Blogger Calliope said...

big, massive hugs to you. I have no idea how you get through all this, but know that you have so many people out here praying for you.

6:47 am  
Blogger Teri said...

1. I love the word madlusting.

2. You're so good at being brave; keep it up.

3. When will you be making your Mother of the Year Award acceptance speech? :)

4. You are so strong and cool and funny and loving.

5. Big hugs to you and the fam. xoxo

4:54 am  

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