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'Stroke Survivor' at 29: Anger, sadness & everything in between.



 

'Stroke Survivor', at 29, wasn't the plan I had for myself.

 

I had plans for entering my thirties at around ten kilos lighter and a little less brain damaged. Turns out, that just wasn't how it was going down.


In case you've missed the latest, I had a stroke almost three months ago as we dropped our eldest kiddos off at school.


A morning like all mornings, I overslept, they dragged their butts, I overthought the amount of nutrition I could pack into their lunch boxes (just for no one to eat it) and Carter refused to put clothes on.

The only thing that seemed different was that, well, I couldn't move my arm properly.. or walk very well.


Deciding that we just didn't have time for me to be broken, I pushed everyone out the door and into the car.


We arrive on time. My symptoms, becoming increasingly worse, are making me look like I had a bottle of vodka for breakfast.

An entire day and a CT scan later, I'm being rushed off to Waikato Hospital for a possible emergency brain surgery to stop a bleed in my brain.


Let me tell you, stroke is scary 'af'.

Here I am, in the back of an ambulance, wondering if I'll ever kiss my babies again.


On the 1st of May 2018, I found out I had an Arteriovenous Malformation -- an entanglement of abnormal (not supposed to be there) blood vessels, which was lodged deep inside my brain.

Fifteen months later, it had bled into the surrounding brain tissues and was causing hemiplegia in the right side of my body -- I was unable to move.



There's a huge amount of anger that comes with 'situations' like these. Until you realise, that anger, it's sadness. Deep as heck sadness that makes you feel like you're a bit of a lost cause and ain't nothing great coming of this level of bulls**t.

No silver lining. No lesson learnt. No 'positive side'.

Until, one day, you're eyeball deep in all your sadness and you hear your baby girl ask, "Is Mommy sad because her brain is bleeding?"

No, baby girl. Mommy's sad because I'm scared that this is going to take me away from you one day, and I'm not going to be ready.





I'm twenty-nine. My babies are seven, five and two.

When you bring your kids into the world, you fall in love with them and then, like being hit by a truck, you're hit with the millions of ways this world could hurt them.

I'm not scared for what this could do to me, I'm scared for how it could break their worlds.

I lay awake most nights, thinking of all the things I need to teach them before I'm no longer here. All the things I need to get John up-to-speed with, when it comes to raising a girl. All the love I'm not done giving them. I'm scared that I will run out of time.


The survival rate, for a hemorrhagic stroke is 26.7% (https://www.ncbi.nlm.nih.gov/pubmed/20088175), within a period of five years.

Thankfully, I have age on my side, making the long-term survival rate significantly better.

The thing is, we thought the AVM had completely ruptured. We thought it was gone and I was freakin' lucky.


Two weeks ago, we found out that wasn't the case.

After a follow up MRI, they found that the AVM was completely in tact and there was now a large (not supposed to be there) blood vessel, running from the AVM, across the entire left hemisphere of my brain.

Too dangerous for any kind of treatment and impossible to remove, I'm stuck in this revolving door of gratitude and sadness. Gratitude for more time; sadness for less.


The reality of it is that I could die tomorrow, of something completely unrelated. It's something I'm reminded of by everyone, all the time.. and then I wanna shake 'em.


I am in the 'less than 1% of the general population' category, with an AVM; even more so by being a female (https://www.stroke.org/en/about-stroke/types-of-stroke/hemorrhagic-strokes-bleeds/what-is-an-arteriovenous-malformation). Statistically, I should be more likely to have.. anything else.

The chance that it would actually EVER bleed is between 1 and 3% -- so you'll understand my frustration.


We're all running out of time. Every single day, I'm running out of time.

Every headache, every time I drop something, every time I stumble, I'm reminded that I'm short on chances.


So, from here, I don't know which direction I'm going in, or where it'll land me. But there is a world of promise in those three babies of mine, their daddy, and our story.

Sharing our story, just as we shared Carter's (raising $323,000 for the Royal Flying Doctor Service for Carter's first Christmas), it's putting a level of awareness out there and I need to continue doing it.


My rehabilitation, thanks to the absolutely amazing Occupational Therapy and Physiotherapy team at Tauranga Hospital, has been unbelievable.

A couple of months ago, I couldn't sit up without help, couldn't feed myself.. couldn't use the toilet -- couldn't walk to it.. sit on it.. all that.

Now, here I am, using the toilet like a damn pro and shovelling food into my mouth like never before.

I owe so much to this incredible team and the work they do for their patients.


Nick Stanley, Kate Simon, Katelin Falconer, Fiona Craig, and the rest of the wonderful team at Tauranga Hospital, thank you.



 

Erin Michele Thomson ∙ Tauranga Photographer ∙ info@erinmichele.co.nz

 

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