amber rahim

Chronic illness: the parts we don't talk about

The importance of being

1 Comment

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.

One thought on “The importance of being

  1. OMG. Amber. This is incredible and again touches my very soul.
    These are the words and feelings for so many years that I have wanted to put down so that we would gave something real to say that perhaps taught someone. You have captured it so well. I thank you for all of us that suffer so many minutes if every single day and try even then to find the best there is in that day. But still we can not honestly cave and say we are great when we are not.
    Where have people lost the ability to hold someone in what is real in their life and to know that by that honoring it is the ultimate gift they could give!!!

    I hold you in these places where fear and pain have ripped at your being from inside and out!!!
    What you have written is so powerful and I thank you once again.

    Your honesty and ability to feel and be real. I would not want you to be any other way!!!! Their is such beauty and power in these moments and crystal clear clarity.

    Love to you Sonja

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