amber rahim

Chronic illness: the parts we don't talk about

Category Archives: Mental health


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My own Oscars thank you speech

I would like to thank

In Oct 2012 I started my journey of changing my life so that I could do the work I want: supporting others to discover and develop their intrinsic strengths and to live a lighter life, unburdened. A major milestone in this journey has just been reached with my submission yesterday of my written exam for my certification as a Professional Co-Active Coach. I would like to take a moment to thank the people who made it possible.

To F.

From before you were born and they unceremoniously pushed your feet back in and told you “you’re not coming out that way” (ok, maybe that was only unpleasant for me), with your cesarean birth 10 weeks early you have learned that new experiences are painful. You almost dehydrated to death and they spent the first 24 hours poking you with needles, trying to get IVs into your teeny tiny veins and pumping 3 times your body weight in fluids into you to keep you alive.

Even every gentle touch on your preemie skin was unbearable because it wasn’t ready for touch yet (so they asked me not to stroke your cheek). Every day brought more needles, more medical procedures.

Cuddly toys were intriguing but you were punished for your curiosity because touching them would make you shudder, sometimes even vomit.

So many experiences were unpleasant or painful. Yet you still try. You are cautious yet you amaze me with your ability to actually try new things and you blow me away when you jump in with enthusiasm and belief that this new thing could be good.

To S.

No matter how many times you fall you get back up and go again, smiling, full of energy and determination.  Everyone around you can already do these things but that does not dishearten you, that they are better than you. You want to be good too so you keep practising until you get it right, growing each day in your ability to adapt your plans when they don’t work and try a new way to reach your goal. Such determination.

I thank you both for showing me the way:

Dare to try something new, even if experience has taught you that new things aren’t always good.

Keep trying until you succeed.

Above all, do it with grace and laughter. Enjoy it.

To J.

You always believed in me and never faltered in your faith that I could do this. You took up some of my burdens, without me even asking, without fuss, so that I could focus. You listened to my frequent self doubts without rolling your eyes in frustration or disdain (ok, sometimes you did that but only after I had tested your patience to the max).

You put aside your own goals to support mine, yet still managed to find time to actually pursue your goals.  How you managed to do all that I will never know but I thank you for it.

To my clients and fellow certification colleagues

You gave me your trust and let me practice and hone my craft on you. You showed me what is possible when you step into your life with fierce courage.

You have all shown me what happens when you give yourself permission to be yourself, to pursue what you really want and when you realize the strengths that you already have:

ANYTHING IS POSSIBLE


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Rare Disease Awareness Day 2014


rdd-logo

28th Feb 2014 was the 7th Rare Disease Day.  I only found out about it this year so although a lot of work has been done (over 1000 events in 70 countries have been held) there is still work to be done.  So this is my first contribution.  Go and have a look at what they have to say (but first finish reading my post ;0).

What is a rare disease?  I wrote about my definition in a previous post and the people at Rare Disease Day have a more scientific definition but when you get to their common problems bit you’ll see the similarities.  Nobody knows much about them.

In addition to the obvious impact of this lack of knowledge there is an underlying problem that we don’t really look at: empathy or rather, the lack of.

Let’s start with my lack of empathy. A few years ago whenever I heard someone talk about their child having a cold or being sick there was a part of me that muttered “oh puh-lease!  That’s nothing.  You have no idea how lucky you are”.

I couldn’t listen to their stories, I didn’t understand what that was like: to see your child healthy one moment and then suddenly change and become sick.  My baby was sick all the time.  I couldn’t relate. I had no empathy for them.

It took a little patience on my part (and isolating myself from other people and feeling pretty alone, to be honest) for me to realise that we do have something in common: being a parent of a child who is sick.

Every parent worries. It’s never nice when your kids are sick.  I don’t mean just the cleaning up the puke and poop. Seeing your child in pain, with a fever, knowing that you have done all you can and you still can’t take away their pain. These are the really crappy moments.

So, although I don’t know what your life is like when your child is healthy and ok most of the time, I do know what it is like to see my child suffer so I offer you my empathy, parent to parent.

In honour of Rare Disease Day I ask you to offer your empathy to all those people who have a rare disease.  You may not know what their disease is or what impact it has on their lives or even how much harder life is for them. But you do know what it is like to get sick or look after a sick child. You can relate, you can empathise.

Let them know that.

p.s. it’s not sympathy we are looking for, just some understanding.


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Dusting off my soul

I have been all over the place this week: great heights and deep lows. I have been inspired and moved to write some good blogs yet it’s wednesday evening and I can’t bring myself to publish any of those posts.

I got introduced to the artist Piet Mondrian this week. Firstly by a wonderful friend Lana,(http://www.smarttinker.com) whose passion, to develop children as learners so that they can face anything life throws at them, is inspiring. Secondly by my brother in law Andy, who keeps his sanity with grace even though he lives with 4 of my female relatives (his wife and kids, my sister and nieces for those of you had a “say, what?!” moment there).

There is just something about art that lifts us out of the compactness of our lives and into a bigger space. A space where we can just be. We can appreciate or criticise. We can absorb or reflect. Most importantly for me, it takes us out of ourselves.

We often often forget about art, especially when the responsibilities of parenting and care-giving pile up on us, leaving us with little time to stand still. So I want to share some art here that I looked at today and invite you to stand still. No comment from me, just the artist and the pictures. I hope it brings you something. Share your thoughts in the comments. Or not. Take a moment out of yourself, maybe go and look at some more art.

“The purpose of art is washing the dust of daily life off our souls” Pablo Picasso.

Piet Mondrian: Broadway Boogie Woogie

Mondrian_Broadway_Boogie_Woogie

Piet Mondrian: The Gray Tree

Mondrian_gray_tree

Salvador Dali: Swans reflecting elefants

Swans_reflecting_elephants

Fayeq Oweis: No!

no2

Pablo Picasso: Violin and Candlestick

Violin_and_Candlestick

Last thing to say:  dear William, I am glad you are home.


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End of the world?

Enders Game has been made into a film (Ender’s Game (2013) – IMDb) and I am not sure that I should go and see it.

I have read the book more than 30 times.  There is something about the tragic irony that keeps me coming back to visit.

I love the book, I know it well and I have a vision of what the characters look like, how they talk, who they are.

So, like all other lovers of books, I ask myself do I want to see someone else’s interpretation of it?

My expectations will never be met. I can’t even articulate all the things I would want there to be in the film to make it “right”.

Yet I am curious to see what they did with it. What did they leave out? Did they change the end? Will they get into the deep issues? Or will I be disappointed when it turns out to be a hyped up “he’s the ONE” film like The Matrix?

Whatever happens when I watch the film, there are two themes of the book that are particularly close to heart at this point in my life:

  1. Expectations for the future
  2. Controlling behaviour – how to influence and get the behaviour you want from people.  Sometimes, especially at bedtime, I wish I could control people, especially my kids.

Expectations

Growing up I had a vision of what my life would be like. Based on the wonderful example of my parents, I knew that my kids would be great: cheeky but obedient; responding to my brilliant parenting style; disciplined yet fun and loving.

The reality is nothing like this. Yes the elements are all there: I am loving, we have fun and use humour in a positive way and yes, there is discipline. Yet the shape and form of my life, how I am as a parent and what my children do… well, it’s not like the vision I had. The pictures don’t match.

For a start, when it comes to parenting, my husband and I don’t agree on everything (ok, this excellent opportunity for make up “activities” is not restricted to parenting. We disagree about a lot of things, but that’s for another day).

This is another way that the pictures don’t match:

Controlling behaviour

My children have a different interpretation of my parenting which I call “wilful misunderstanding”. They do not respond in the way I expect or hope for; they will not be controlled. They even dare to make their own choices and develop their own personalities. They do not listen to my wisdom and obey!

For example at bed time, my side of the conversation often goes like this:

“ok, another 5 minutes and then it’s time for bed” (yes super nanny, I listened to you and give them that time to adjust)

“come on then, brush your teeth and put your pyjamas on.” (imagine my firm and authoritative voice. Thank you mum, you showed me how that is done. That should work).

“Yes now!

good, you’ve brushed your teeth.

now get changed

Come on, get on with it!

…and without all that prancing about half naked!”

Quite some time later…… kids are in bed, books read, cuddles given.

“Ok, stop talking now.  It’s time to sleep”.

Sigh.

Mum, where did I go wrong? Wasn’t I always a wonderful child that did as I was told? (ok, don’t answer that).

My expectation of parenting did not come true but it is sweeter than I ever imagined it to be. I did not know that the same face that could make my blood boil in an instant could also melt my heart two seconds later.

I still dream that my parenting will be brilliant; that my kids will grow up to be happy and able to look after themselves and others. I dream that I am helping save the future of mankind.

So ok, maybe this film will not melt my heart and I expect some changes to the story will boil my blood, but it is just a film. It is only someone else’s interpretation of a book and it will not meet my expectations. But maybe I will like it anyway. If I don’t?  It’s ok, it’s not the end of the world.


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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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Planting the seeds of confidence

This post is going to be a bit different.  It’s not about chronic illness and it’s not about struggle.  Something happened this week that made me happy and I want to share it.

In my first ever post I talked about my journey to finding my daughter, seeing the child behind the illness.  Ever since, I have been doing something more consciously and deliberately.

I have been acknowledging my daughter.  It’s kind of like a compliment but I don’t praise what she has done, I acknowledge who she is.  It goes something like this:

” You know, you are smart, you figure things out.”

“You are funny and cheeky”.

“You are intelligent”.

“Even when you are scared and nervous, you try new things”.

“You know what you want”.

When I first started doing this I was met with shyness, a shake of the head and often an embarrassed “stop! why are you saying this?”

It seemed too much for her and she got embarrassed.  I think this is something we all do when the attention is turned to us and who we are.  It’s so personal and we are not used to it.

As time went by she starting getting used to me doing this.  Then she started to ask me, shyly, to “do that thing, when you say stuff”.  She would smile, my heart would melt and I would oblige.  I was happy, she was happy.

I have been working a lot lately so this last Sunday when I was helping her get ready for the day I took the opportunity to acknowledge her.  It’s been a while.

I started talking and she started smiling.  Confidently.

The she spoke and blew me away.

“I know” she said.

We both grinned and hugged.

I thought “this is beautiful”.

So I have new definitions of beauty (to add to my collection).  Beauty is someone glowing with the confidence of knowing who they are.  Beauty is the connection created between two people when they share this knowing.

And I know that with a simple acknowledgement, by saying “you are …” you can help build self worth.

Yes of course she gets insecure or disappointed in herself but she also knows that she is smart, funny and brave.