Down the Rabbit Hole

by Jun 22, 2020Recovery4 comments

Hi!

I’m Sarah

I’m recovering from a brain injury. But there’s more to me than that.

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I’ve been thinking about that theory you know the one: people get their best ideas in the shower. I don’t seem to get these lightbulb moments, perhaps – due to memory loss – I’m too busy concentrating on whether I’ve already shampooed my hair already (or have I conditioned?) so I do both again just in case. For me, I get my best ideas when I’m walking my dog Delilah. 

 

Last week, I managed to walk every day. By managed, I mean my symptoms (the infernal vestibular migraine among others) released their slavish command, easing up enough to allow me out. This is where I am now: on a walk. The warm winter sun is on my back and I am writing invisible words in the sky. 

 

It wasn’t always so dandy for me or my fellow Sydney-siders. I remember last summer as crunchy grass. Choking, suffocating air. Day after day of grey skies. The bushfires surrounding our city covered us in a blanket of smoke. The world around me took on a colour of – I can’t think of any other way to explain it – dull-ness. The backdrop for my essays became muted. 

 

I’ve felt that same dull-ness since my brain injury. Like I was here but a little less so. Somewhat removed. Away on a journey inside myself. Not quite one foot in this world and a foot in the other. But what is the other place? I’ve experienced things that I never thought could happen. My brain has changed in ways I could never have imagined. And worst of all, I lack the vocabulary to recount it. How do I describe where I have been? Would anyone believe me? 

 

Today Delilah hassled me out the door, not without first running through her comical routine of refusing to wear her harness. It is the only thing I’ve found in seven years that stops her yanking my arm off. Her aversion to the confines of the straps is understandable but like me, since my brain injury,  she’s had to become accustomed to less than ideal circumstances. The harness is hers. Vertigo and fatigue is mine. After the rigmarole we are outside. In the fresh air. I like our walks, even more so when my days are mostly spent at home. 

 

It’s a Saturday morning – and early to boot –  which means Delilah is usually lucky. Today she is no exception as she scored a discarded pizza box tossed in the gutter by nightclubbers. Like a magnet her snout is in the box, I imagine she’s forgotten all about the harness. How I wish I could so quickly divert my attention from my restraints. As they say, it’s a dog’s life. 

 

This is where I was, not far from the now closed up bar which a few hours earlier spilled out its human contents (infamous in my part of the world for over 50’s), when I began writing this post. It’s a chilly, deserted street but the echos of the night before still linger. I can feel it. It’s a feeling I’m not so familiar with. It’s life. 

 

I don’t remember the last time I went out at night to a restaurant, or a bar. I’ve lost track of time, it must be over well over two years since my last drink. How I’d love a glass of pinot grigio or a chardy. I once had a glass of champagne to mark my birthday a few months after the brain injury and two sips in I felt like my brain would explode in pain. I’ve been too scared to try since. Doing normal things like socialising with people seems so foreign. As if it were an age ago. I’ve become accustomed to my own company, cups of tea and pajamas. 

 

My world shrunk to it’s smallest when I developed a form of dysautonomia called Postural orthostatic tachycardia syndrome (POTS). It was three days after the triathlon race and I had taken time off work and training to recover. I stood in the kitchen, and while the kettle boiled, I noticed my heart rate was climbing up to 160 beats per minute. It was high. I felt light headed. My heart was beating more than when I swam hard. The next day, I walked half a block to my car, my Garmin beeped alerting me that I was hitting my max heart rate at 200. 

 

I never know this could happen to the body. I never knew this was a medical condition. The inability to regulate my blood pressure made everything difficult. Even standing still on the spot felt scary cause I’d nearly faint. I learnt to cook meals while sitting down. It also turned me into a hermit because I didn’t feel safe being out. 

I don’t know why it is so important to me to share these stories. I realise there are many people in similar situations. They know. But what about the rest? The rest: who’ve never known what it’s like to spend days on days in bed because my heart stopped regulating blood pressure and the only human contact for days was my parents. All the while, at the age of 32 I feel like I’ve stepped into a time warp and reliving my teens. It’s been a trip. Why do I want to be understood? Is it validating? Warning others? Educating? I don’t know. 

 

I started a new treatment this week. Immediately, I had an improvement in my energy levels. No, I did not run a marathon. It was more subtle. My brain felt like it woke up a little. Less dull-ness. The grey cloud shifted slightly. A promise that things could get better. This, combined with the antivirals for the viral infection that hit me during the triathlon race in January 2018, is the protocol for six months. After that, I’ll see where I am at. 

 

On my walk, that’s what I decide I want to write about:  finding my way home. As I begin my return to a new level of health and life, I want to record what happened down the rabbit hole. 

 

I still have memory loss and I don’t recall how Alice found her way out of Wonderland. I bet it was nothing like my journey. I doubt she ever saw the inside of a speech pathology rehab or had a spinal tap. I doubt she had to follow a two hourly medication schedule or follow a diet so strict that it makes brussel sprouts look appealing. I’d swap places with her in a heartbeat. I’d take the Mad Hatter and the Evil Queen any time. 

 

I don’t particularly enjoy rehashing my experiences. These have been long, dark days. It has been traumatic. Sad. Hard. It is important to me that people know. I realise I’m not the only one who’s lived through and has these health challenges. Just as we will never forget the bushfires, I can’t forget about what happened to me either. Alice found her way out of the warren and I will too.

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Sarah Rasborsek

Sarah Rasborsek

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Sarah is author of Healing My Brain, My Way. She writes for people who are ready to live a deeper, richer life. She posts everyday here: instagram.com/sarahrasborsekRead her latest book here

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4 Comments

  1. Avatar

    Beautiful and heartfelt as always, Sarah. Fingers crossed for continued improvement for you.

    Reply
    • Sarah

      Thank you for your kind wishes. Same to you.

      Reply
  2. Avatar

    Hi Sarah from a fellow basilar artery (what used to be called vestibular?) migraine sufferer, and brain injury sufferer. It will get easier, you will have your breakthroughs. I was always trying to explain to people too. One hospital woman told me I needed to realise, ‘nobody cared!’ its not true, though it probably was for her. As you slowly are able to find the words and the education and more appropriate people to support you, and get used to how ‘it’ works, symptoms can become less dramatic and things do improve. You are right, you are on a journey to wellness. Just keep going and keep going and every year you will find some things have got better and there are more improvements to come, some from you and some from your brain, but I know what it is like, believe me. The greyness. There will be more life for you, I promise.

    Reply
    • Sarah

      Oh my, thank you for your kind words. Wishing for less greyness for both of us!

      Reply

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