amber rahim

Chronic illness: the parts we don't talk about


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Maybe I don’t get to keep this life

So just recently, I made my friend, who just finished her chemo for great cancer, cry.

And for good measure, I made myself cry too.

You see, we are working on a project together about compassion and hugs. Given our respective painful pasts with illness, we think there is too little in the world and we want there to be more.

She couldn’t see how others would relate to her so I told her what I saw (and yes, the tears are coming again).

She had a life, with her family and friends and then cancer came along, threatening it all. Because cancer can kill. We don’t really say that anymore but it’s true.

Death, that constant companion to us all but who we ignore like that really smelly fart in an elevator (we all know it’s there, it’s unpleasant but we all pretend it doesn’t exist).

A cancer diagnosis brings death back into the picture and we realise

Maybe I don’t get to keep this life that I have.

As much as it brings tears to my eyes to type this, and all of a sudden my nose is really snotty, I need to say this

we don’t know what we are going to have tomorrow. And we can’t do anything about the past. We can only change now. So whether you are doing the laundry, paying bills, or are on holiday

Enjoy it!

Find something you like in the activity you are doing, no matter how small, and focus on that. Grow it and enjoy it.


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Sometimes we want to be afraid

Last sunday we went to a creativity workshop and open day with the girls and they loved the freedom to get really creative with their painting … and not have me worrying about getting paint on the floor. (Remember Monica in Friends? yeah, sometimes I’m like that “I want to control the fun”, keep it tidy. Shaking my head in shame).

On her way back from washing her hands F ran into a wall (in a straight, empty, corridor. I mean, how is that even possible?).

Turns out she thought she had reached the studio, turned left, her shoe flew off and she kicked the concrete wall. Hard. With her big toe. (is it wrong that I had a moment of relief at this point? the fact that she meant to turn means a lot to me)

It’s not broken. We got it checked out in the way that parents of chronically sick kids do: 4 days later. Don’t judge. The last thing we want is another trip to hospital. We do enough of that already. And it’s the last thing our kids want too. But that’s another story.

She rested up for the whole afternoon. Noone could touch it or sit on the same sofa as her, just in case they touched her (not just her toe, we couldn’t come within 1m of her).

Bedtime: the obstacle of skinny jeans

“I’ll help you with your jeans. We’ll be careful when we take them off” I said, thinking that this was a good thing. Oh, how can I still keep on forgetting who I’m talking to?

She processed this and realised straight away that this might hurt. She started crying. Really hard. This lead to one of the most beautiful moments I’ve had with her; the two of us sitting in the bathroom, she on the toilet, me on a stool.

“It’s time to take off your trousers. While you’re sitting, I’ll pull them off” I said.

“No!” she cried. And cried. “I’m scared!”

I tried to calm her down:

“I haven’t done anything yet. Please calm down. You can cry if it hurts but please don’t cry because you think it’s going to hurt.

You don’t have to be afraid. Do you know that you can choose to be afraid or not?”

She said “Yes”. (So she does listen to what I say to her).

“Do you want to be afraid?” I asked. And this is when I saw her at her most beautiful: honest, open and accepting of herself

“Yes, I want to be afraid” she replied.

So I let her. I put my arms around her and let her be afraid.

She cried some more. Then she started talking, laughing.

She let me take the jeans off her uninjured foot. Then she let me take them off her other foot. There was a lot of pausing and checking in. She was still scared, but much less so.

It hurt a little.

I carried her to bed. She slept on her back the whole night, not turning like she normally does. She told me how she was able to do it: “I kept telling myself, don’t turn, don’t turn. And I didn’t”.

This experience taught me a couple of things:

  1. Just how amazing she is. I know it, but now I see her even more deeply.
  2. We don’t need to make our children happy all the time.

Sometimes we get so caught up in trying to make our kids happy that we forget that they want to feel other emotions too. She wanted to feel scared. When we honour their feelings and their choices, we honour them. We tell them that they matter.

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I don’t know what this means, but I bet you’ve thought it too

On monday night we were all sitting together at the dinner table chatting.

The girls are fascinated by age and love to play this game “when I’m x, how old will you be?”

J went big on this. “When A is 80, F, you will be 74 and S will be 70”. The kids loved it!

I watched their happy faces and tried to imagine them sitting together having fun, at those ripe old ages.

And I could. Except for F. This little thought fluttered through my head so fast that it was almost imperceptible.

“Will F reach 74?”

I didn’t have this thought about the other two.

Now, you never know what the future will bring and I don’t know what it means, that I can picture S and A in their 70s and 80s but draw a blank when it comes to F.

I don’t even want to try and interpret it.

But I just bet that all of you out there, with kids with a chronic illness, will have that same fluttering thought if you play this game.

You might even have that thought about yourself.

Is life just so much closer to the edge when you are sick?


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What’s different about chronic illness No.5: always sicker

Soemtimes it feels like the only reason we have school holidays is so that F can fit in her “get sick” time and not miss school.

Every holiday contains some days of sickness. Every one.

This December was no exception, except that it started with S. She got 5th disease, otherwise known as slapped cheek syndrome.

S was a bit itchy, achy, cried more easily but otherwise was actually kind of okay. I would describe her as being a bit off for a few days.

Then F got it. It just hid her harder. Because she is actually ill almost all the time, any other illness can really put her out of action.

She had to take to her bed, couldn’t keep on playing.

THEN she got impetigo on top. How cruddy is that? (pun intended).

My heart ached and I didn’t know what to say as she cried in bed, not understanding why S only got a bit of a rash but she, F, was sick in bed, with painful, itchy, sores all over her face.

You see, she knows. She sees the difference. She does always get sicker than her little sister. Than anyone else.

And she knows that it means that she has to miss out on fun, playing and parties. Not her brother, Not her sister. Only she misses out.

My heart still aches and I still don’t know what to say to that.

Do you?

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p.s. she didn’t scratch her impetigo sores, not once. She had them all over her lip and chin, really like a beard. And she didn’t scratch them once. She is my hero.

 


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Come on in, my old friend Self Doubt. Come on in.

Inspired by a session with my coach on how we can shift out of (negative) emotional fields. We all have these thoughts of self doubt, that we are doing it wrong. But we don’t need to stay there. We can invite the feeling in, get to know it and then send it on its way.

Come on in, my old friend Self Doubt. Come on in.

You’ve been knocking on my door for so long. Whispering, and in turn shouting, through the letter box.

No matter how tightly I hold my hands against my ears or how loud I set the telly, I can still hear you.

So come on in. Have a seat. Get warm. Have some tea. Take two biscuits, not just one. Yes we are in the Netherlands but we are flouting the rules anyway by being together like this. Take the whole tin.

So what is that you want to tell me? What must I know?

Yes, I am a terrible mother.

Yes, I am emotionally scarring my children and they will never recover.

Yes, I am not doing all the things I set out to do.

Self Doubt, you keep telling me this as if I don’t know. What is your urgency? Are you trying to keep me away from joy? Are you trying to keep me small, afraid and guilt-ridden?

Well, it’s been working my friend.

But now that I have invited you in I can see you clearly.

You are small and frail. Brittle. Be careful with that tea, it may melt you, turn you into a puddle of ash.

Yes, now that I have invited you in I can see that you are small, not me. You are guilt-ridden, afraid, urgent. Not me.

You look tired. All this banging on doors and shouting through the letter box has tired you out. The anxiety is wasting you away. So let me send you to a wonderful place. A place in the sun, where you can relax. You do not need to speak for there is no one to hear you there.

Go. With my blessing and good wishes, go my old friend Self Doubt. It is time for us to part ways. We do not belong together.

I belong with Self Believe for I am interesting. I am quirky. I am dance.

I am a good mother.

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What’s different about chronic illness No. 4: the risks are high

I write about both the good and the bad that comes with living with chronic illness. Today is unfortunately about the bad.

On Monday we found out that a boy in F’s class at school, whose initial is I, died last week. His illness had taken over and there was nothing more they could do. His parents and the teachers knew it was only a matter of time until it took him. And it took him last week.

F cried and remembered J, another boy from her school who died last year. When she got home she told us she felt wobbly inside thinking about them, thinking that she didn’t want this to happen to her.

I wish I could tell her that it won’t but as I write, the daughter of a friend, who has the same illness as F, is losing kidney function by the week and is almost in stage 4 kidney failure.

Did you know that you can’t tell if your kidneys are failing, unless you test for it? Well, that is until it gets really critical.

This is why we need check ups so often. This is why we need to take her to the hospital if she gets stomach flu and vomits for more than a day.

This risk is always there.

It’s as far away as the sun, and closer than her shadow, all at the same time.

That’s what is different about chronic illness.

 

In memory of I, a sweet soul. Prayers and all our love and compassion to you and your family.

 


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What’s different about chronic illness? No.2: Disturbance

On Tuesday evenings a nurse comes to our house to look after F so that J and I can go out. We mostly go together and sometimes we each go our own way with friends. You know, try to have a social life.

This Tuesday I came home to find her on her chair in her room, wrapped up in her quilt. Eyes closed. Disturbed. Her bed was wet and so the bedding was being changed.

I stepped into the room to help out and the only thing she said was “can I go back to bed?”

Every night around this time we get her out of bed to take her to the bathroom. Due to Bartters Syndrome she pees so much that, even with super absorbent night pants, we can’t keep her clothes or bed dry without this nightly trip out of bed (and sometimes not even then).

I often wonder what it is like for her, to never be able to sleep through the night undisturbed. Never.

I think I got a bit of an answer when I saw her there on the chair, eyes closed.

We delight in the beauty of the