amber rahim

Chronic illness: the parts we don't talk about

Category Archives: Family


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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.


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The importance of being

People always seem to want to hear the words “I’m ok”, regardless of the situation.

There is a social convention that if someone asks you how you are, you should reply “I’m ok”.  It’s an obligation.  Certainly when you are ill all the time, people get tired of hearing about it so you almost never answer honestly, not even to yourself.  Yet when I heard that my nephew was in a coma, it was different.  I told them “I’m not ok”.  I cried.  I didn’t sob but I couldn’t stop the tears in and I didn’t try to.  Yet I got the question again and at some point I felt that social obligation to say “Yes”.  It was then that I realised that this always happens.

There is some need in me to reassure you that I am alright and there is some need in you to hear it.

I do the same thing.  I ask my daughter and I want to hear her say she is ok, even when it is clear that she is having a bad day.  She has been puking her guts our for hours and I still ask her.  Even when she is in hospital (again) and it took them 40 minutes to get the IV into her (again).  I ask and I want to hear that she is ok.

But what if she isn’t?  Does that change reality?  Will that change what I will do?  No.  I will still give her a hug.  I will still give her comfort no matter what she says because deep down I know that she is not alright.  She is fed up of being sick, she has an IV in her foot and potassium burning through her veins.  It hurts and she just wants to go home.  

It’s at times like these, when we are really suffering, that this social convention moves beyond politeness and becomes a downright lie.

Looking back at some of those moments in my life, this is what I really wanted to say:

“My daughter is in intensive care.  I’m terrified that she will die and I am trying to just breathe.”

“I’ve just been diagnosed with an incurable illness and I am frustrated and annoyed.  Seriously, when will it stop?”

So a few weeks ago I said what I felt, I didn’t lie.  “No, I’m not ok.  My nephew is so ill and we don’t know if he will recover.”  It was a relief to say how I really felt yet after someone asked me for the third time I caved and said “yes, I’m ok”.

But I’m not.  I’m grieving.  I’m sad.  It’s not contagious, so why is it so important for you to hear that I am ok?  Why do you insist, through your gentle concern, that I give you a positive answer?

Let me acknowledge how I feel.

Let me show my sorrow about my nephew, that I don’t know what to do and that I am in tears just thinking about it.

Let me show my frustration because my daughter said “I want to go home” every 15 minutes for 2 days (seriously, day and night) and I couldn’t do anything to help her and I thought my chest would be crushed under the weight of it.

Let me honour these feelings because they are real.  They have as much value as when I say that I feel great, when life is good.

I’m not ok and that is ok.  Don’t ask me to say otherwise.  Accept it.  You do not have to make me feel better.  I release you from any obligation you may feel to cheer me up, to tell me it will be alright.  It might not be and even if it is in the end, right now it isn’t.  Let me feel.

This is not complaining, This is not whining, or wallowing or self pity.  It’s an expression of how I am, right now.

So I say to you “Let me BE.”

I say to myself “let your daughter be.”

For those of you with family and friends affected by Typhoon Haiyan, please take a moment for yourself, acknowledge what you feel and let it strengthen you.  Just be.


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Tragedy separates, talking connects

When I started this blog I had intended to write about living with my daughter’s and my own chronic illnesses but something happened recently that is so enormously sad that I have been flitting between desperate, immense sorrow and numbness.  It’s been 6 weeks and I have moved out of that now to a more dull place, where feelings are not so sharp.

When I got the news I pulled back from life, sank into myself.  I was with my children all day but I could barely acknowledge their existence.  It hurt to look at them so I didn’t.

Now I can look at my children again and it is with a bitter sweetness that I count my blessings.

Although it is still too raw for me to share in my blog I find I cannot stop thinking about the impact of tragedy, so I will write about mine.  Time does heal and this healing in me makes writing this post possible.

In tragedy, in losing one person, it hurts so much that it is easy to lose the people around you too.

Our daughter almost died at birth and fought for her life for 5 weeks.  For the next two years a cold would lead to a trip to the hospital and random life threatening fevers plagued our winters.  We did not lose her but there is a lot of grief from this incredibly bumpy ride of “will she, wont she (die)?” and tragedy exists.

We each deal with our grief in our own way, often alone, and the distance between us grows.

Before you know it, years have gone by and you look at your husband and think “who are you?”

You see that they have the same look in their eyes.  Two strangers who have shared so much, but not together.

Each walking their path alone, side by side, only looking inwards, never at each other because it hurts too much.

How do you find your way to each other again?

For us we followed the usual routine: spend some time together.  We went out to dinner.  We went for walks through Amsterdam, exploring new neighbourhoods and chatting.  We had a nice time, we rested and it helped us get energy to face the next day with a smile but it didn’t really bring us closer together.

The real connecting happened when we talked about our experiences of our tragedy.

For example, my husband’s experience of the birth was very different to mine (apart from the obvious “he was not giving birth” one).

He was standing up watching a bunch of people cut me open.

I was lying on the table calmly, not feeling anything.

Oh yes, important detail: it was a cesarean, not just random butchery.

I had a wonderful view of the ceiling lights and was sheltered from the horror movie blood and guts (or should I say blood and uterus) by a green curtain.  They don’t let you see your own cesarean and I’m really glad! It’s definitely not something I ever want to see.

So he told me what it was like for him to watch his wife and child in danger, not knowing what was going to happen.

We told each other our thoughts, hopes and fears.  Each different, each equally real.

Something lit up between us.  It’s like there is a thread holding us together which had become very fine and barely visible, fragile.

As we shared, the thread grew thicker, stronger.  It started to glow as if sunshine and warmth were pulsing through it.  I felt a warmth, connection, love that I had not felt for a long time.

Through sharing our tragedy with each other, through putting our experiences into words for the purpose of explaining to the other:

“this is what is was like for me”.

We connected again.  No longer shift workers but friends, partners, husband and wife.


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Husband and wife or shift workers?

A friend of mine noticed what I guess you could call a freudian slip.  She noticed that in my “about me” page I listed that I am a mother, daughter, sister etc but not wife or partner. (Don’t bother looking now, I have already updated it)

It was not consciously done (and I’m sure Freud would have a field day with that) but it did remind me of something else that happened when I became a carer.

You see, both my husband and I became carers all of a sudden.  We have no medical training but all of a sudden we needed to use needles, figure out how to use a feeding tube without drowning our little baby by accidentally accessing her lungs instead of her stomach, do a physical exam to assess how dehydrated our daughter was etc.  We were thrust into the roles of carer and nurse dividing up the days tasks between us.

In the beginning I was at home so I had the day shift.  My husband would come home from work and I would hand over, which would go something like this:

“Here, you take her.  She’s had her 4 o’clock potassium and needs her next sodium dose at 6 o’clock”.  I’m going to the loo then I’m going to get dinner ready”.

I might even have said, “Hi, how was your day?”  Far too often I was frazzled, covered in vomit and in desperate need of 5 minutes to myself and just said “your turn”.

I would go to bed early and get up for the 3 am rounds.  John would do the midnight and 6 am rounds.  We would both get a bit of sleep.

We were like shift workers, doing our bit then handing over the work load to our colleague.

This doesn’t leave a lot of room for a relationship.  You just don’t have the time or the energy.

It’s not surprising that so many relationships break down in these circumstances.  You need to feed and look after a relationship.  Spend time on it, put some energy into it.  When your every waking moment is consumed with worry, care and a million things that actually do have to be done otherwise someone will become (more) ill, then it is hard to look after your relationships too.

I was barely putting energy into showering.  I really didn’t care what I looked like and dressed in baggy puke stained clothes most of the time (there was a lot of vomiting going on).  Did I take an interest in what he was doing?  Erm, no.

My focus was: how long can we keep her out of hospital this time? and why did we buy a sofa with a fabric cover?  I need wipe clean surfaces – on everything.  I’m never going to get that vomit out.

Let me also clarify – did it matter what I looked like?  Not to my husband, but it is more a reflection of my state of mind.  I didn’t care about a lot of things, I was preoccupied.  I didn’t notice me and I didn’t notice him.

We were barely parents, let alone partners in life.

This has changed.  It has taken a lot of work and I am thankful that my husband is so stubborn that even when I told him to get lost, he didn’t.  It pissed me off no end at the time but I am grateful that he stayed.  I calmed down, we agreed we needed to do something about it.  That was not what we wanted but we needed to make changes.  We needed to remember why we got together in the first place.  We need to reconnect as people who loved each other, who had made this beautiful girl together and who were terrified of losing her.

Stress really tests a relationship.  Sometimes it is too much.   For those of you for whom this has happened, I share your sadness.  It hurts.

Sometimes we hang on, clutching desperately, until we start to get closer together again.

So I don’t know what it means, that I didn’t add that I am a wife or partner.  Maybe writing that first post just took me into the past where I didn’t feel like a wife anymore.  Maybe it’s a sign to myself that it’s getting busy again and that I miss my husband.

Whatever it is, thank you dear friend for mentioning it.  I think I’ll go and make a date with John.

Important note: this post is published with the full knowledge and consent of my husband.  It’s kind of like the EU – if I mention him, he gets veto rights on the blog.


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Stupid insurance company, now I need to do press ups for my fingers

It’s 9pm and it’s medicine time again and another opportunity for me to practice patience and letting go of anger.

You see, the 9pm medicine is a tablet.  It comes in tablets of 5mg and I need to give a dose of 2.5mg.  Now, the tablet has a groove down the middle so that you can break it in half and voila!  Correct dose.

We used to get these great tablets that you could just snap in half.  They are only 5mm long but just a small amount of pressure and there you go, two equally sized parts.

Recently our health insurance company changed the list of approved meds and have moved us to a generic.  Nothing wrong with generics but I can’t break this tablet in half.  It is also 5mm but has been set in concrete and no matter what I do, I can’t break it in half.  I need to do press ups for my fingers to get them stronger!  I will conquer this tablet!

Breathe.  Sigh.

So I cut it with a knife.  All you tablet takers out there know what happens right?  Yep.  One large bit.  One small bit. Lots of dust.

So again I pick up the knife to shave down the large bit to the right size and then I throw away the dust and the small bit.

Insurance company take note: this is your cost cutting in practice.  I now use twice as many tablets as before.

Well done.

While I’m at it, Pharmaceutical companies also note: if you say a tablet can be broken in half, then actually make sure that it can be done by normal hands.  Don’t just rely on the freakishly strong fingers of people like my husband.  Test it with normal people.  If you’re making medicine, you are in it for the good of the people right?  Why do only consumer goods companies focus on the end user experience?

Ironically, it’s a tablet meant to reduce blood pressure.


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One of those days

It’s actually my older daughter that has the chronic illness yet when my younger daughter gets sick I am filled with so much emotion, sometimes I am overcome.

My little toddler got a stomach bug and vomited all over herself in bed.  Quietly.  I didn’t hear a thing and she never cried or called out to me.  When I brought my eldest to bed I smelled it and saw her.  Lying silently, calmly, in bed, covered in smelly puke.  Her calmness was that really wrong kind of calm that means that your baby is really sick and is scared and … I don’t have words.  But if you are reading this blog, you probably know what I mean.

My heart broke.

All sorts of thoughts ran through my head.  How did I not know this had happened?  How sick is she?  What’s wrong with her?  A heat infused me, filling me up, pressure building …. and with practiced ease I capped it, put my feelings aside and gently spoke to her.  Told her I was going to clean her up and quickly grabbed new clothes, a towel, nappy and got the bath ready to wash her in.

When it comes to a vomit covered child, I know what I’m doing. Once you have picked them up, they don’t want you to put them down (and you don’t want to put them down either) and once you’ve picked them up, it’s really hard to grab clean clothes, towels, get the bath ready.

So why do I know what I’m doing?  Experience.

You see, my eldest has vomited almost every day of her life.  Nowadays it might only be once a day but it wasn’t always this good for her.

She has Bartters Syndrome, a genetic disorder of the kidneys that causes chronic and severe dehydration, with a risk of death in babies if not managed properly.  (check out this website for info about this illness: http://www.barttersite.org)

One of the side effects is vomiting and at its worst, she was vomiting 20 times a day.  Not just spit up, but projectile vomiting going across the room with the speed of a tennis champion’s first serve.  The mess didn’t bother me as I got very good at mess prevention: seeing the subtle signs of imminent puking and then grabbing the nearest cup, glass or container with one hand and turning her just enough so that the angle of projection would be just right…. and I could catch the vomit mid air.

What bothered me was finding my eldest daughter covered in puke in bed.  At night I had to sleep.  I couldn’t keep watch all night yet the littlest cough could trigger a bout of vomiting.  No matter how fast I jumped out of bed and sprinted to her, I didn’t always get there in time.  Most of the time I didn’t even wake up until I was by her bed and I would think “what am I doing here?”

Then I would look down and see this tiny tiny baby blinking away the puke from her eyes or holding them tightly shut if there was too much.  She looked surprised.  Still.  Almost holding her breath as if she was thinking “what happened?  I was sleeping and now this?”

So I would wipe her face, get everything I needed and start the careful process of washing and changing – all the while watchful for signs of more vomiting.  You know sod’s law right?  Guess how many times I had to start all over again before I had even finished getting her cleaned up.  Don’t know?  Well I don’t know either, I’ve lost count.

Why did I even start this story?  Oh yes, I’m having one of those days.

One of those days when the reality of my daughter’s life with a chronic illness weighs me down.  When I see with full clarity the vulnerability of both of my children, of all children.  It’s so real that I can almost touch it.

It’s one of those days when I acknowledge that this is my life too: to watch the suffering of another and I can’t fix it.  This in turn creates frustration and sorrow in me and I am overwhelmed by my own suffering.

It’s one of those days that I go through all this and finally remember this:

I may not be able to fix it, but I can offer comfort.  I can be with them, be present and loving.  I can look them in the eyes, touch their hand, be with them.

I can acknowledge their reality and honour them for living it.

Acknowledgements

Inspired by my daughters and published in honour of William.