amber rahim

Chronic illness: the parts we don't talk about


Leave a comment

The Art of Lego

The thing about chronic illness is that it never stops. At times it can feel like those drops of water that carve through rock. Sometimes it creates a stillness in me and words disappear. Silence. Kind of what I have wanted from my kids today (who doesn’t?).

I am also in the mood for some art this week so that’s what this post is about.  Cool art. I saw that there is an Expo starting in Amsterdam tomorrow, The Art of the Brick which is an exhibition of over 70 sculptures made from Lego.

While this is nothing compared to the amazing works of art my kids and I create together (with F usually designing and me usually being the “finder” of all those cool weird shaped but tiny pieces), there are some in the exhibition that are passable.

(And I bet the artist Nathan Sawaya didn’t need finder to dig through all the different colours and sizes for just the right piece. I bet he had them all delivered and sorted exactly how he wanted them. Yes, there is definitely an envious tone to this bit of my post. Lego hurts. When you are digging through that box and especially when stepped on).

Having googled and seen images I now have a dilemma.

A. Go the the expo with my kids and

  1. hope S doesn’t break off a piece so she can play
  2. give F grand ideas about what we can make when we get home

 

B. Stay at home and miss out.

What to do?

In the meantime, here are some that represent the kinds of creations I imagine my efforts produce (and may explain why I actually get upset when the kids break them apart after 3 days. Master pieces ruined!)

We actually had a real one of these in my parents’ shop:

lego till

This is what I think F will want to make:

lego figures

Some art that I just love. How did they do this with those little bricks?

Lego Scream

lego waves

lego girl with earring

 

 

 

 

 

 


2 Comments

Things we don’t talk about: PTSD and EMDR

So while on that cliff edge last week I remembered something: writing about the things we don’t normally talk about. I actually wrote this post awhile ago but somehow always skipped publishing it. It’s time now.

p.s. The shoes worked. Just thinking about them brings me back to that guiltless feeling and being on the brink is not so disorientating anymore.

PTSD, let’s talk

I don’t know where I am going with this.  I just read someone else’s blog and I got the urge to write about this.

As a woman in her 30’s, living in safe Holland, I was suprised to find out that I had PTSD.  Now what follows are not scientific or medical explanations, just the words that I have found to explain my experience.

I didn’t realise it for 3 years but looking back I can see that it was a time where I lived on adrenaline and with a constant sadness and fear that coloured everything in my life.

During my pregnancy, my daughter was diagnosed with a rare genetic kidney disorder that almost killed her in the first few weeks of life.

There were complications and basically I was keeping my legs crossed to delay the birth for as long as possible.  She was born at 30 weeks.

It was an emergency cesearean and once they had whipped her out they put her in an incubator and did a drive by so I could see her and then whisked her off.

I didn’t see her again for 24 hours.

I was pregnant one minute and then I wasn’t.  It was like she had died, which she almost did.

From the beginning I understood why I couldn’t see her, they had work to do.  They had to keep her heart beating, stop her dehydrating.  Hugs with mum had to wait.

After the first week I was able to see her everyday and then I had her at home so I knew, logically, that she was alive.

But something happened in the stress of that day.  I think it was too much for my mind and something got scrambled.

The normal process of filing got interupted – I mean, who has time to do the filing when all this is happening?

So my brain was unable to file the event and put it in the past

This is how I make sense of PTSD.

Things happen.  We experience them and then we file them into our memory storage.  We take them from ” this is happening” to “this happened”.

What happened to me was that the experience of my daughter dying stayed in the present, it never moved into the “this (didn’t) happen” category.

It stayed in the present so as a result I carried around the fear, sadness, adrenaline for 3 years.  No wonder I was on edge.

So where does EMDR fit in? This stands for Eye Movement Desensitization and Reprocessing.

image

Well, as a simple patient, this is what I understand from the doctor’s explanation.

EMDR helps move the experience from the “this is happening” stage to where they belong, the “this happened” stage.

By engaging both sides of the brain while re-living / talking through the experience, something happens and the brain is able to do the filing.  It’s like it says “what are you doing out here making a mess?  let’s get you put away”.

It works.  I don’t understand why following a light from left to right (or following a sound) has this effect but it does.  So thank you to whoever figured this out (wow you must have tried out some weird stuff to come up with this).

I didn’t know I had PTSD and it took a couple of months of therapy before even the therapist saw it.

So this is what I have learned:

you can hide it – even from yourself.

Getting treatment works.  It released me from the past so that I could go into the process of grief and dealing with it.

When something doesn’t feel quite right, pay attention.

I think I had a pretty mild case.  My heart goes out to those who have it, especially those who have suffered more than I have.

 


1 Comment

On the Brink

Some people say that life is like a roller coaster. Mine is, or rather, what happens inside of me is like a roller coaster. One week content and satisfied and the next, not. As I journey through my life, trying to bring up confident children, trying to create a new career for myself as a coach or just manage to get through the day, I slip and slide between the two.

This week as been a “not” week so here I am On the Brink.

 

Standing on the edge of a very tall cliff.

Strapped to a glider.

Not knowing what I am doing, no one has taught me how.

Yet I am supposed to jump, leap, leave the safety of earth beneath my feet.

And my job is to NOT smash to the ground and crumble.

Stay in the air and get to my destination.

Navigate. Set a course. Live up to expectations.

I am scared to jump yet I have vertigo and standing on this edge is physically painful.

Nausea. Dizziness. Spinning.

It is unbearable to stay here and I must move.

The destination is too far away, I can barely see it.

What can I see? Right in front of me.

Focus on my feet.

Put my fancy shoes on.

Take the first step.

That is enough for today.

Tomorrow will bring another cliff.

 

fancy shoes

 


4 Comments

38 words

I turn 38 this week yet for some reason I have already been thinking that I was 38 for a year now. I rarely feel my actual age (or even act it) and I like this fluid relationship I have with age. It allows me to avoid the “growing older” drama that society and the media tries so very hard to draw us into. I can find my own dramas all by myself so this is one area of my life where I don’t need any help.

So in honour of this occasion I thought I would try to write something about myself in 38 words. I think it only took me 38 seconds to do it so don’t get your hopes up. The point is, I achieved my goal: 38 words.

(for fellow pedants out there, the title is included in the word count and I count “that’s” as one word. What am I revealing about myself?)

My Life in Thirty Eight Words

Little feet, little toes

Bigger boobs and pointy nose.

That’s the way the outside goes.

Fertile soil for a brain,

Plant the seeds, let it rain.

That’s how I come alive again.

ok, you can’t google images for bigger boobs and planting seeds (well, you can but I wouldn’t) and I’m not very good at drawing so here is a Monet that caught my eye.

the-artist-s-family-in-the-garden.jpg!xlSmall