amber rahim

Chronic illness: the parts we don't talk about


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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


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The Healthy One

It’s a common occurrence that us parents take more photos of our first born than of all our other children combined.

It’s a combination of novelty, the undivided attention they can get and time (you don’t realise what little time you have in a day until you’ve got more than one kid).

I am no different than anyone else in this respect. My little S is growing up so fast and yet so little of her is captured in photographs or films.

We were going to the park the other day and she was running, her arms by her side and her hands flapping back and forth to help propel her forward. Enjoying her enjoyment I thought this would be great to have on film (then you could see just how cute her running style is) but I realised I didn’t have my phone. Yet another moment that will only be stored in my personal (and dodgy) memory bank, that only I can enjoy.

It reminded me of a clip I have of F as we walked to that same park. She pushed her toy buggy with a “sick” baby doll inside. She was the carer, taking this baby out for some fresh air.

I did have my phone with me that day and I have a great short film of it. In fact I have lots of short films of all the cute stuff she did.

Contemplating the difference in me regarding F and S, I have to acknowledge that in the early years with F it wasn’t just the novelty or time, in fact her care took more time than looking after 3 healthy kids. There was also a sense of urgency in me. An imperative to catch her on film because maybe soon that is all I would have left.

Phew, that was hard to say.

It was almost too painful to look upon her directly, without the filter of a camera in between.

I have always been dimly aware that I felt this way. It’s one of the reasons I crashed so hard when she finally started to be well for more than a few days at a time at the age of 3.

So little S I am truly sorry that I do not have more photos and films of you. Please know that I am not taking you for granted because you are healthy and expecting you to always be there. Because the future is not guaranteed and the angels could take you away just as easily.

You see, I am paying more attention to you. I am trying to focus on being with you now, joining in with you, no barriers. I have learnt something from you both about being a mum. When you look at me I want you do see me, not the camera.

I see you and you are great of spirit.

A clever clown who is sweet and kind.

A tough little lady who cries when she falls off the sofa and lands on her head (seriously, how can we stop this happening without tying you down?) Who then, with determination, goes back on that edge, carefully choosing a safe spot this time.

You are vocal about your displeasure (especially at the sofa for not being as wide as you imagined) and you shine brightly and shimmer with joy when you pat your tummy and say Yummy!

I have finally put photos of you up on the wall. It’s something that you have not noticed but has been a weight on my shoulders.

I do see you.

photo copy

 

 


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my burn out story

When I burnt out I was traveling at 100 mph being batman; saving my business world from the bad guys and crooks who appeared disguised as project managers and stakeholders; and in my private life, fighting off the evil villain of my daughter’s chronic illness.  I was working harder and harder and doing it with a smile and sometimes a snarl.

Finally, a message came through.  My body finally broke through the wall I had put up in my mind to avoid the truth.  My body is a dirty fighter and hit me hard  with aches and pains and finally, took my mind.  I was tired, cranky and short tempered.  I was forgetful, I couldn’t even remember how to spell forgetful.  I couldn’t sleep.  I was exhausted, worn out.

I had an epiphany. ” I need to stop, take a break before I break”.  I thought I was so smart and that I had realized in time.  Ha! Could I have been more wrong?

So I parked my bat mobile, got ready for a 4 week timeout and …… just stopped.  Everything just shut down.  I could barely function.  I had used up all my reserves and was empty.

It took a long time to start back up again, 1 step forward, 1 step back, a step sideways etc.  I started making progress, recovering, to function.  However I realized that there were some things that I couldn’t do anymore and I feared I was broken.  I felt broken.

You see, I thought that people are like elastic bands; when you stretch them too much, they break and they stay broken.

With my burn out, these are the “elastic bands” that broke:

– multitasking.  It took all my concentration to make a cup of tea.  I couldn’t have a chat with you at the same time.

– being able to take on the intensive 24 hour care of a critically ill baby with just my husband and I to split the shifts over.  (Of course I had been trying to do this perfectly).  A lot more work fell on my husband’s shoulders (sorry dear) because I wasn’t able to do my part.

– Being a superhero. Batman was gone, suit back in the cupboard.  I just didn’t care to fight the bad guys anymore

– Being helpful: saying yes, I’ll fix that / take care of it, you can count on me.  Gone.  I just wanted to tell people to, well, insert your own swear word here.

I really thought I had lost a lot but something strange happened during this mega timeout. I started to see things in a new light.  Those things I mentioned just now?  This is what I like to call them now:

– ” tolerating being overworked”

– ” being taken advantage of”

And

-“not asking for help”

Now that I see these “elastic bands” for what they really are; negative, destructive behaviours.  I am glad they are broken.

Who actually wants to be a superhero, working non stop, taking care of everything? (Never mind having to wear your underpants over your tights).

Who wants to do it all alone?

It was with relief that I realized that people are not like elastic bands, we are organic.  We grow, adapt, learn new things.

New things have taken the place of the things I lost.  These are my new things:

The ability to

– say no.  Or “not now” and fit it into a time when I can do it without adding stress.

– recognize if I am becoming overloaded and getting cranky

take action if that happens and get myself back to feeling good: look after myself

And these two are my favourite:

– letting go

– asking for help

Whatever I am doing, it doesn’t have to be perfect.

I can let someone else do it.  I still think there are a lot of things that I can do better than anyone else – I’m not humble, I admit it!.   But if it means that I can take a break, get other tasks done, just breathe, then it’s worth letting someone else do an average job.  I can live with imperfection if I can just breathe.

So did burn out leave me broken?

Actually, it set me free.  Those restrictive bands have burnt away, leaving me covered in a fertile ash where things can grow. I have grown, improved, become a better me.

I can get more done than ever before because I delegate and share the load.  I accept and ask for help.  I focus on what is important and I’m mindful and do one thing at a time (well, ok, I’m not living a zen life but I do it a lot more!).

I feel happy again, I laugh and I experience joy.  I dream and I expect to make some of those dreams come true.

So people, remember this: we are creative, we are resourceful and we are whole.


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The other side of being

I am writing a book and I am stuck.  I want to write about the good, the experiences that keep me going.  Yet every time I sit down to write about these, my mind goes blank.

It is so easy to write about the hard stuff, the painful moments.

I know there have been good moments, achievements big and small, moments that make it all worthwhile and still, it’s like I am frozen.  Unable to even remember them, let alone describe them.  I pick up my pen and nothing.  It is like someone presses pause on my remote control and I haven’t seen this film before so I don’t know what comes next.

So I have been looking for inspiration, a way to unlock those good memories.  I told myself “don’t force it, allow yourself to wander along memory lane and it will come”.  Time has been passing.

Then yesterday my daughter asked me “zullen we een wandeling maken?”  Shall we go for a walk?

It was 6:45pm and she goes to bed at 7:30pm.  It’s a school night and I should have said no but I didn’t.

We put on our coats, grabbed a torch and went outside.

It was drizzly and we talked about the weather.  She thought gloves and a balaclava would be handy considering how cold it was.

She was happy that she had a hood on her coat to pull up and keep her warm and was concerned that I didn’t.

She held my hand to make me feel safe in the dark.

holding-hands-mother-and-child2

I’m still struggling to find words to describe this good feeling but it was good.  Maybe it was the absence of worry.  Maybe it was the simplicity.  Maybe it was the “being”.  We didn’t “do” much, just went around the block.  It wasn’t an adventure and it wouldn’t be on any child’s christmas list but we did it together.  We were.

We walked, we talked, we held hands.  We came home with the satisfaction of a job well done, with a feeling that all was right with the world.  And it was.

I’m not going to try and write about it anymore.  I just want to enjoy it.  Maybe if I let myself just feel for long enough, the words will come.