Out at sea.
A string to a board,
Waiting for the wave to bring me back in.
It is still and serene.
It is here, I glide
Along the surface like silk.
Until I am not.
I am under, in darkness and chaos.
I am a ragdoll in a washing machine,
Tossed and turned and no way out.
I try to come up for air,
But each time I am thrashed back down,
Down here, all alone.
For a moment, I think I’ll stay here and join the earth.
This is my end; my lungs have no air.
Then. It is not.
I am up somehow,
I can breathe.
My eyes open and I see sky and feel
Salty air whipping my skin.
No one even knew I was down there,
Until I see a friend running towards me steadily.
I’d thought we lost you.
So did I, I say.
Remember that feeling you had as a kid, when you would stick your arms out to your sides and spin yourself round in circles, like an endless game to trick your mind and body from being still? You would stop and try to take steady steps, but giggle in delight as each tiny movement would cause you to sway, stumble, and fall. As you gathered balance, you would try again and you would collapse at the end and gaze up to the sky, watching the clouds swirl above you. Over the past 6 months, that feeling has been a constant for me, but not in a good way. I will now never take for granted that beautiful equilibrium I had before. But, life can have a funny way of making you appreciate the small things and learn the subtle art of slowing down.
I have always wanted to make the most of life, grasping at experiences left, right and centre. I have travelled extensively and lived overseas, danced in the sun, sand and rain, and partied harder than I should probably admit. I have found my forever friends, where we’ve talked about nothing and everything until the early hours, I’ve had lovers and made mistakes. But, I have also found the love of my life who I got to marry and have two beautiful, wild, girls with. I have also always worked hard in whatever job I’ve had, be it washing dishes, driving smart cars for marketing, and especially since working in tv/film production. My parents have given me an incredible work ethic, but I’ve also had a hard time of shutting it off and keeping that work- life-balance. I’ve found it even harder since having kids. As a working mother, life is never still, and sometimes it can feel like a constant grind to the bone with little time for yourself. Funnily, at the start of 2021, I said to myself, enough is enough, I am going to make a change. I had 3 months off drinking, was starting to exercise more and was eating better. But, maybe I should have gone the other way and taken up the hard liquor and cigarettes instead.
You see in June 2021, I lost all sense of stability, like a wave had swept my feet right out from under me. A force that was completely out of my control, upended my life right when we were in yet another, covid lockdown shit show. I woke up one day, with no idea that within 48 hours my world was going to change so rapidly, that it would make me look more inwardly than I ever have before.
On a Friday, I was outside doing one of our many, mum-made-pretty-crappy-lockdown obstacle courses with my kids and was attempting some pathetic burpees. All seemed fine. The day continued with no problems, but by that night, I started getting a bit of pain in my knees and fingers. My husband and I laughed it off to it to me being unfit. But in the middle of the night, it moved to extreme pain throughout all my joints, to hardly being able to walk. By the Saturday night, I had a fever and a massive temperature. I thought I must have covid for sure.
But then, I started getting ulcers in my mouth and then by Sunday morning around 5am, I woke up with the worst vertigo I’ve ever experienced. I had nystagmus, which is a rapid and involuntary motion of the eyes that continued for days, which meant I couldn’t focus properly. I also couldn’t stop vomiting, so I was having a real good time of it. We rang the on-call nurse and they said to go immediately to emergency. As my husband drove me there, with the kids in the back, I couldn’t stop being sick. I knew my family was so worried as I was wheelchaired off, but all I could do was half wave goodbye. Because of covid, they couldn’t come inside, and it was like that for my entire hospital stay.
I had no idea what was happening to my body. So many thoughts went through my mind as I was contained in a little white room. Was I dying, was it cancer or a brain tumour, were my two kids about to lose their mum? I was isolated and alone and I was in the worst pain I’d ever been in. And I should know having had two kids and one with no pain relief. My family were also not being told anything and they were in panic.
For four days, I couldn’t see properly, I couldn’t eat or barely talk because I was so ulcerated. I was classed as infectious so all the doctors and nurses would enter with full PPE and the visits were not as frequent as I wanted. I can understand now what a covid ward would be like. The lengths the medical team go through to keep safe is time consuming, yet necessary. My pain management was not dealt with, and I was poked and prodded, with blood and urine tests every day. My left knee grew to the size of a cantaloupe and my joints were in agony, often with sharp pain. But with all the tests, the doctors and specialists had no answers.
On that fourth day, after constantly waiting for pain relief and how little information I was being told about what they were testing for, I complained. It made me realize the amount of people who would just put up with being in pain or no knowledge of what is going on. Poor elderly, or if English was their second language, many people have no advocate for them in hospital and suffer in silence. I was beyond tired and as I sat there bawling my eyes out in front of my head nurse, the neurologist was so passive aggressive, it was a joke. As he walked out and I cried harder, the nurse said, that was not ok and left the room to talk to him.
Twenty minutes later, he came back in and said I rang the Infectious disease specialist, you are not infectious. So just one call and that was that. I wonder if I’d said something sooner if things would have been better. He also organized a pain and a rheumatoid specialist, a speech pathologist, and a dietician to come in, the whole shebang. I felt empowered, but I also didn’t realise just what I had in front of me.
I ended up being in hospital for nine days, every day having blood tests and injections to stop clotting, I had an MRI, an ultrasound, fluid drained from my knee, endless amounts of medication that it became a blur what I was taking. If I needed to go to the bathroom, I needed help, showering was an ordeal because I could hardly see, it was easily the hardest thing I’ve ever gone through. I was finally released from hospital with no official diagnosis which was the worst thing about it. It was either a severe virus or a thing called Bechet’s disease, which was unusual because of my heritage. Since then, they’ve now confirmed I do have the gene for the autoimmune condition, but we won’t know I have it for sure, unless I get a similar flair up. So, what a fun waiting game.
I’m not going to lie, I thought the hospital stay was tough, but getting home and readjusting to normality during covid lockdowns was brutal. My vision was still completely out of whack, I had no balance at all and was so weak. I was given a walking frame who I named Betty and she became my sidekick for months before I upgraded to a walking stick. These made me incredibly aware of how vulnerable those with disabilities or the elderly might feel. I had lost all confidence to walk own my own for fear of falling over, especially because I couldn’t see properly. As my physio said, the best way I could describe my vision now, is thinking of those old home movies, that would wobble and go out of focus occasionally.
I had weekly vestibular physio for months as had to learn how to walk and see properly, I’ve had that many more blood tests, a vestibular dysfunction test, another MRI, seen a zillion specialists, was on steroids for four months, and am still on medication for Bechet’s for at least the next 6 months. I had to redirect my life completely. Only a few months ago, my new neurologist confirmed that as a secondary condition, whatever I had in hospital had permanently damaged parts of my inner ear. My left horizontal semi-circular canal is almost completely gone and parts of my right side are too. This was a lot to ingest at the time, but weirdly, finally getting a diagnosis has been such a relief and incredibly healing. Knowing that was why I had delayed vision and a havocked balance system pulled me out of the darkest hole that I felt buried in. Before that, I was working, homeschooling, recovering and trying to work out what was going on. I felt helpless and couldn’t see the end.
I feel like I’ve been moving through the stages of grief since all of this happened, as I’ve come to terms with my newfound condition. It impacted so much, I couldn’t drive, I’ve needed lifts getting anywhere from either family or Eastern volunteers, I couldn’t walk on my own or further than halfway up the street by myself, so couldn’t do things like take my kids to the park or school. I have always been incredibly independent and having that taken away was debilitating.
The biggest challenge was asking for help as that is not in my nature. But that is all I could do. I can’t ever thank my husband and family enough. They have been more than incredible, taking me to a thousand and one appointments, helping with shopping, taking me to weekly physio, helping with my kids, moral support when I was at breaking point. My friends had food, flowers and gifts delivered, checked in often, work couldn’t have been more understanding. All of this has made me realise just how lucky I am and appreciate them all so much.
As I said though, life has a funny way of making you slow down. For me, it was a hard smack to the face where I was literally forced to snail pace. I remember sitting in the hospital room, alone with my many thoughts, I could not read or watch TV or use my phone as my vision was so bad and I often had no one to talk to. My mouth was so sore that I couldn’t speak, which for me is absolutely nuts. But I had so much time to reassess and reflect.
It was such a relief coming home and seeing my family when I got home. To this day, they are still traumatised by it. My husband said it was the worse two weeks of his life as he thought he had lost me, and my girls had and sometimes still do have separation anxiety leaving me. My oldest said to me she was so worried leaving me as didn’t want me to be alone and get sick again. She still tells me she thought I was never coming home. My youngest asks me often, mum you still dizzy? And yes, sometimes I am still dizzy, but I am now so used to it, that it is beginning to feel like I was always like this.
I could call this experience trauma. Trauma can translate in many ways. But instead, I am choosing to say this has been a challenge to overcome or maybe in some way, a small gift to change, to stop and smell the roses quite literally. To sit outside with my shoes off and smell the air, to lie and stare at the clouds like I did as a kid, to appreciate being able to take my girls to the park and now start to kick a ball with them, to dance around the living room even though unsteady, to cherish the time with my family and friends. I hope we’ve all learnt a bit of this throughout covid too.
It is 6 months on, and with twice daily physio at home, I’ve trained my brain to compensate for the bits I’ve lost (ain’t brains magic!). I can now walk mostly without stumbling except when I’m tired or in the dark, I even climbed up a small mountain the other day. I’ve even started driving very small distances which is slowly getting my independence back. Yes, I still have days where I cry and wish this had not happened, but mostly, I’ve chosen to take this event and condition and use it to inherit some pretty incredible life lessons. I don’t work at night anymore, I meditate, I love myself more and take the small steps as big wins and give myself permission to be vulnerable. I also know how powerful the word no is!
I know I have it easy compared to some and I am grateful. Maybe this happened before something worse did, to tell me that life was too precious to rush past too quick and not take it in.