Day 103, Part 2

By , January 28, 2011 10:00 am

Thursday 4th February 2010

Gestation: 18 weeks, 6 days

One year ago.

At 4.46pm we walk to the desk at Suite 53.  We sign some paperwork, and are seated for two minutes before a gentleman appears in front of us.

“Hello, I’m Terry,” he says.

He hesitates slightly as he sticks out his hand;  a nervous, schoolboy hangover.  His hair is combed cleanly in a part, grey strands highlighting the wave.  His shirt is an off-white, his pants grey, his tie thin.  All straight from the seventies.

We follow him down the hall to his room, which is decorated like a doctor’s office from another era, this time the 1930’s.  There are framed Gray’s Anatomy sketches of the brainstem, a painting of Chinese blossoms, some old tram-stop flags.  He has a glass-topped desk you could sleep on, and cane chairs on our side of the desk.  Just waiting for us.

We take his invitation to sit, and Terry begins the history.  He ponders each of our answers, showing concern while ticking off lists in his head, working a complex algorithm in his mind.  He invites me to contribute, to help aid the narrative.  So together, the three of us build the framework of the story.  It is an almost homely experience, all of us talking, gathering pieces together, and then throwing the offerings into the communal can for  a rainy day.

Dr. Terry then begins the examination.

He checks Suse’s gait, her limbs, and finally her cranial nerves.  I watch intently, pleased to see that my technique is not dissimilar to this polite gentleman who has done this several times a day for the last twenty years.  The whole thing takes nearly thirty minutes.

And throughout it all, he remains the embodiment of manners from a former time.  He trips back to his desk at one point, before looking down, and then saying, “Mark, yes, Mark.  I’m so sorry about that.”  He clucks his tongue, tut-tutting himself for his memory.  When asking to check the sensation on Suse’s abdomen, he almost falls over himself with politeness.  And when he is done, he apologises once again, before continuing, “Is there a chance that you could stay a little longer so that we could do some nerve conduction tests?”

Suse and I look at each other and smile, at the absurdity of being asked by a Professor whether we can spare the time to help us come closer to an answer.

* * * * *

He starts the conduction studies.  Beginning at her feet, he attaches pads, and then begins the electric shocks, causing her toes to increasingly jolt.  A green line charges across the screen, and as he turns up the dial, the blip grows in synchrony, as if to mirror the wince on Suse’s face.  She forces a smile;  her brave face.  From here, Terry disattaches, and then places them on her legs.  And then, onto her hands.  And finally her arms.

Each time the probes move, another printout spews forth.

Each time he asks, Suse volunteers for more.

She becomes quickly accustomed to the pain.

The more she tolerates, the more we learn.

After all, physical pain is more preferable than the psychological type.

* * * * *

Finally, we are done.

So then, we talk.

Suse remains on the bed, while I stand there at her side.

“Two things that are going through my head,” Terry begins, not really looking at either of us.  “The first is a variant of Guillain-Barre Syndrome, and the second is a demyelinating process.”

My head spins like a top, increasing with each rotation.  I try nodding, and it seems to stay in place.

“Sorry,” Suse says looking at both of us, “I don’t know what that means.”

“Well, there is the possibility that a virus has triggered this all off,” he replies, “and that it has caused all of the trouble.  That’s something we call Guillain-Barre Syndrome.  Except that it doesn’t quite fit, because you still have your reflexes intact.”

“And the demyelination?”

“Yes, well, the other thing I’m considering is this.”  He pauses.  “It’s most commonly known as Multiple Sclerosis.”  Terry looks up at Suse, and I do too.  I watch as her eyes glaze.  “So  I think we need to do an MRI scan to look at what’s going on.”

Suse nods, and her eyes fall.  She slowly steps down from the bed, while we talk some more.  I reach for her hand.  She has yet to look at me.  She has a strange, distant look on her face.  I try to collect the social cues, nodding in almost all of the right places.

The buzz builds.  Eventually I butt in, when the noise in my head reaches a fever pitch.

“Sorry, Terry,” I say, “I think that we’re just both reeling a bit here right now.”  He nods, not unused to this situation.  As a Neurologist, he is not often the bearer of yuletides.  “So, can I just get this straight?”

“Sure,” he says softly.

“If the MRI is normal, then we think it could be Guillain-Barre?”

“Yes.  Well,” he says, correcting, “a variant of that, yes.”

“And if the MRI is…”

There is a pause.

“…Exactly,” he replies.

We all look at each other.  All understanding.

“So, if it is normal?”

“Then we watch and wait.”

“Do we do a lumbar puncture then?”

“Maybe.  But let’s just see how we go with the MRI.”

We all nod.  And then we all go silent.

He stands, and shakes both of our hands.  And then he escorts us from Suite 53.

So much less fun than Studio 54.

* * * * *

We walk, just like normal people, until we are on the other side of the road.  At that point, we stop, just by our car.  I take Suse in my arms, hugging her to me.  And she begins to sob.

“I’m so sorry,” she whispers, “I’m so sorry for putting you through this.”

“Hey!” I say sharply.  “Don’t be sorry, hon.”  I take her chin in my hand.  “This is not your fault.”

Suse buries her head into my shoulder.  And with that, the dam breaks.

A large, middle-aged woman rounds the corner, and heads towards us, jay-walking towards her car.  I watch as she smiles, noticing this young couple hugging.  As she gets closer, her expression changes, as she sees the shoulders bobbing and she starts to hear the cries.

She drops her keys as she tries to unlock her car to the sound of sobs.

* * * * *

We head to Binh Minh, our local Vietnamese Restaurant.  Sticking to a strict organic diet isn’t our highest priority, right now.  Beer, laksa, fried rice and chicken wings are our comfort food.

We order, and swig on beer.  We limp through dinner, conversation focusing on the salting sauce and crispiness of the chicken skin.

Anything to distract.

On our way out, the owner, a friendly gent with an oversized head, shakes our hand.

We return the smile.

Like it’s just another Thursday.

* * * * *

We are in bed, both in our own thoughts.  Suse lies there, a ball of tension, anxiously reading, pretending to be normal.

I don’t even try at that.  I stare at the roof.

Eventually, she lets out a little sigh like she’s about to speak.  And then she stops herself.

“What is it, love?”

“On the website, they say that some women lose the ability to have orgasms.”

“On the MS website?”

“Yeah,” she says softly.

“When were you looking at that?”

“The other day.  About a week ago,” she says, almost guiltily.

“And it said that some women with MS can’t have orgasms?”



“That’s horrible!” she says, with indignation.

“Is that your biggest worry?”

“No, well…  I mean… That’s just awful, isn’t it?”

“Well, yeah.  I guess it is.  But that was in a long list of symptoms, right?”


“And we don’t yet know if this is MS.  And if it is, I’m sure the majority of women with MS can still have orgasms.”

“Are you sure?” she asks.  It’s in a tone that begs a yes.


“I mean.  That would be just awful!” she says again.

“Come here, honey,” I say, hugging her to me.

I hold her tight.  “We’ll get through this.  What ever it is.”

And then, despite the fact that we are scared witless, and despite the fact that no one knows quite what is going on, we set about proving that Suse is not a victim of all of the symptoms.

Not just yet.

* * * * *

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