I first came across the word ‘begat’ when I was a little girl.  Sitting through endless church services and looking for distraction, I would pore through my bible for words I didn’t know. In the Old Testament there are comprehensive family histories.  They list only the sons. But of course. Surely that isn’t where my feminism took root (or is it?).  They went on in variations like this:

And Canaan begat Sidon, his first begotten son, and Heth, and…

It’s not really a term we use anymore, but it is a useful word. The next time I heard the word begat (or a present tense version of it) was when I was a new Mum.  The plunket nurse was talking about baby’s routine.  She explained that “sleep begets sleep”.  The more sleep babies have, the more they want. And how the less they get the more and more wakeful, and therefore, harder to settle.  So I set about creating a better sleep routine.

And today, I added a new context to the word begat.   (Rude word warnings…)

Crap begets crap.

And so it was, that Crap begat Crap who

You know what I mean.  It never rains but it pours. Just when you think ‘surely nothing else can go wrong, I’ve had all the bad luck a person should get’ …a bird poops on your head, you jam your favourite scarf in the car door and rip a big hole in it, you stub your toe and miss a phone call from the radio station that would have won you a trip to Paris.

No amount of positivity works. Nope. Deep breathing is useless. There is nothing you can do but surrender to the crapfest and hope that somewhere down the line, the begetting will run out. And as my friend said to me this morning, it is okay to say “why me!?” sometimes.  I agree, but it is not easy when the kids are with me, to rail against the begetting of bad times. I’ve been trying to keep the self pity to my private moments.  The anger and the grumps. I’ve been trying to fake making it, so that the Universe might be tricked into laying off on the lessons for a while.  I am sick of learning lessons.

Universe? Take your zen-opportunities and go jump. Take your deeper meanings, your soul education, your wisdom bringing life experience.  I don’t want any of it. I’d rather life was easy and I could be shallow, thanks.

My mother-in-law is sick, she has advanced Parkinson’s.  My father-in-law is sick, we’re waiting to hear results from his recent tests to see if he’ll be having surgery or radiation therapy, or both. My brother just phoned to say something’s up with his liver and kidneys. And I spent this morning at a pre-admit clinic for the surgery I will have in August to remove pre-cancerous cells from my cervix.  It’s not a huge thing, but it is one thing too many.

I had to be there for 9am, so we were up and out of the house by 7.30 this morning, I had to first drop off my daughter and then my son both to the homes of two very helpful friends. And when I hopped back into my car to go to the hospital, it would not start. The lights were on, but nobody was home.  Glancing at the clock I realised that if I called for roadside assistance, I’d miss my clinic appointment.  I screamed then, in my car.  Let out a tiny bit of the anger that has been swirling around in my head. And I called a cab. After my meeting with the anaesthetist and the admissions nurse, an ECG and some bloods, I caught a cab back to my car. The bloody thing started first go.

See?  Bad times beget bad times.  I am sure my car wouldn’t start earlier, simply because I needed it to.  All this crappy minutae, on top of all the other stuff gets me down. My steroid trial is over and I feel myself sinking back into the quagmire, perhaps even more so after my immunologist yesterday made it pretty clear there was no way I would be eligible for IVIG. And all because I am seronegative, like 50% of patients with my diagnosis. I don’t even know if I can fight the fight for treatment any more. My steroid trial proved I have an AI aetiology, but now there is no treatment?! I can’t even explain how I feel about the shittiness of that. I feel like I am falling.

I know that my mind is a messy, noisy place.  I know I need help getting into a better frame of mind.

Let me know if you know how I can do that.

For now I am just putting it out there.  Crap begets Crap.

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Out of the Woods?

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I’ve been listening to my daughter’s Christmas CD in the car this summer.  I like it when the kids like music that I like too.  It doesn’t always happen! My son is into The Scat Man, and although the sentiments are lovely (think bad rap: I wanna be a human being/ not a human doing/ I couldn’t keep that pace up if I tried/  But if part of your solution/ isn’t ending the pollution/ then I don’t wanna hear your story told…) the relentless scatting and boppy beats drive me crazy.  So, given the alternative, my favourite track on Bee’s CD is a song called Out of the Woods.  It’s here:

Taylor Swift: Out of the Woods
(this was filmed right here in New Zealand, I like that)

I love this track so much.  It makes me think of the things that are going on in our micro world at the moment.  My early fantastic flurry of a response to steroids, my more recent dip back into some of my less fabulous symptoms.  It’s a rollercoaster hope ride. We’ll see the immunologist again tomorrow.  In 24 hours I will know if he thinks my response is a good indicator for a next step. And I’m rolling down the track, thinking “are we out of the woods yet?  Are we in the clear?”

It’s a catchy set of lyrics, I like the repetitive mantra.  But what makes the song really something is that beautiful line somewhere in the middle.  The writer and her partner are in the hospital, after a frightening experience, they’ve been in the metaphorical woods, when:
“the monsters turned out to be just trees…
and when the sun came up
you were looking at me”

I like that because it makes me think about my man. The road has been treacherous and difficult.  There are scary things around every corner. But when the sun comes up, he’ll still be looking at me.  🙂
Thanks BobbyD.  I’m glad to be navigating these woods with you.


Who I Appear To Be

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It’s a strange double life I am leading.  Like i’m a secret undercover agent.  Except I am not saving the world from crime, I’m just surviving, one day at a time.  There’s this magical spell that covers my words, so when I say “I’m not well”, people don’t hear it.  If I do manage to explain anything to them, they forget it and assume I am well the next time they see me.

I don’t look sick, I don’t ‘act’ sick.  I just am.  Sick.

Deep undercover in my role as a ‘well person’.

Because the person you see, is Rachel, the wife, mum, the lady who is there sometimes… but lately, not so much.  You see me in the car, driving my son to and from school, or at the supermarket, leaning on my trolley and contemplating my groceries.  You might see me on a weekend, in a cafe with my family, or having a picnic in the park.  You don’t perceive a problem because you may be wrapped up in your own problems.  Busy surviving your own stuff. Life isn’t only hard for me.  And, after all, I am an expert at covert operations.  It’s actually easier than being real.

Sometimes, faced with friend’s status updates about feeling tired, or having a cold, I would like to post a real status update of my own.
Something like:
“YAY!  A new anti-nausea med to add to the mix!”
“I’m so CHUFFED!  I just administered my own enema and it WORKED!  Go me!”
“Today the courier guy said he hoped I would have a better afternoon, ‘cause he could tell I had already had a terrible morning.  And that was so NICE.  So kind from another human being.”

But I don’t.  I stay undercover and spend my energy on making the least waves possible.  It’s not that I don’t want to tell people what is going on with me.  I’m a talker.  Nothing is sacred, I’ll tell you everything, in one sitting, given the chance!  No, it’s because I have learned from my experiences that people really don’t mean
 “How are you?”  when they ask it.
People really don’t want to know.
And the crushing reality of that, when you try to answer the question, is truly devastating.  It makes you feel small and insignificant. It makes you want to run and hide.

Rachel the wife:  is rarely intimate with her husband anymore, even though she loves him.  She can’t bear that she smells like urine, that she might leak wees or poos in bed.  So she goes to bed in continence garments and tries to pretend that intimacy will happen tomorrow night.  Cuddling is better than nothing.  But she is afraid, so afraid that he will stop seeing her as an attractive person.  Her belly distends from gastric dysmotility and she feels his eyes appraising her body.  His face is blank and she can’t read it, so she imagines what he is thinking… it isn’t complimentary.  He misses who she was and he wonders how they got here.  He’s not sure if he can keep going forever like this.  What will happen when they are older?  How many more problems will there be?  Will he be her carer?  She imagines his thoughts and rolls away from him, hoping he will somehow know how much she loves him.  She is so ashamed. He deserves so much more than what she has become.

Rachel the mother:  asks a lot of her children.  They have to do jobs, unlike most children their age.  Her daughter makes her cups of tea and is kind to her brother.  Her son strokes her on the face and tells her it will get better.  She knows her kids are extraordinarily empathetic.  She’s proud of that, but she worries all the time.  At what cost to their childhood?  How many ways will her being ill, screw them up?  Can she stop their anxieties?  Should she go more undercover?  She knows she can’t do all the things they want her to do.  She agonises over how little she can help at school, on trips, at extracurricular activities.  She pushes herself to take them where they need to go, but the cost; it is so high.  Every morning, she braces herself in bed for the efforts of every afternoon.  She cries.

Rachel the friend: is best online.  Or text.  She has limited energy to maintain friendships.  So she has few friends and lots of acquaintances. Her  friends are so very special, so vital to her joy.  She loves people, but it’s hard to keep it going when her energy is spent on her kids, on her husband, on doing her housework at snail speed.  She is often lonely, often down.  Mostly, she seeks solace with other people like her, from the comfort of her bed.  They are in bed too, online, on laptops, tap tapping away.  Shouting a two dimensional hello from a continent far away, but not expecting her to walk the malls, make small talk over a glass of wine or go out for a night on the town.  They get it.  Those cyber sick buddies, her new social circle.

That is me, driving my son to school.  I am fighting back nausea, running the torturous marathon of a five minute drive.  I smile at you, his teacher, through the window of my car while my body aches all over and my left eyelid muscles fasiculate into an unintentional wink.  My eyes are so dry that I am blinking like a cartoon flirt. I hope that you won’t pause to chat so you won’t see what a wreck I am today.  Thank goodness I can drive through to pick up and don’t have to stand.  I couldn’t stand today.  You smile and tell me I look well.  I thank you.  What else am I to do?

That’s me, in the supermarket.  I am gripped by the searing heat of nerve pain, like my whole left leg has been dipped in a vat of hot oil.  I grasp hold of my trolley and try to look like there is something interesting in it.  I calculate whether there is enough food in there already to feed my family this week, because I know I won’t be shopping anymore today.  I brace myself for the lifting of groceries into and out of my car.  I wince at the thought that someone will judge me for using a mobility car park.  I swallow it all and smile at you as you pass.  I know you from school, right?

That’s me in the cafe with my beautiful family.  I want them to have as many memories of normal togetherness as they can.  I wanted to stay in bed, but not as much as I want them to have an ordinary activity.  We’re ordering and I am watching the waitress blur in and out of focus.  My head is a grey fog this morning.  I need to focus on the conversations but it is taking enormous concentration.  I don’t know what I want to order.  Any of it might make my tummy problems flare.  My son says something funny, like he does, and I laugh.  It is a spontaneous, loud, laugh.  It’s out before I can moderate it.  My bowel spasms and my breath is snatched from me.  The tears sting my eyes.  I see you walk past the cafe, I smile-grimace, and wave.  I know you from the kids’ swimming, right?

That’s me, lying on the picnic rug.  For me, it’s like a raft in an ocean of ever moving waves.  I am clinging to my piece of flotsam, watching the kids riding their bikes.  I am talking to my patient husband, he needs normal, too.  I feel the shakiness inside myself and wonder if it’s nearly time for my pills. No, not yet.  I concentrate on the feeling of the breeze on my hair and face.  It’s a beautiful thing.

You see me, care free. You know me from somewhere, but I am not who I appear to be.