I still carry on

Content Warning: Stroke and mental health related topics.
This post discusses stroke, its effects, and personal stories of recovery. Some readers may find this content emotionally challenging, especially if they or their loved ones have been impacted by stroke.
If you need support, please reach out to a trusted friend, family member, or professional helpline. For stroke-related assistance, contact the StrokeLine on 1800 787 653.
Your well-being is important to us.

Written By Elena

When you think about your twenties, you think about the freedom, excitement and discovery that comes with it. The excited nerves when you walk into your first lecture hall, the surreal feeling moving into your first apartment, adjusting to your morning routine to your first big cooperate job, and the exciting part of meeting more likeminded people. You think about how your life will pan out to be for the next 10 years but have the fear of taking that first step or the fear it won’t turn out that way. How universal of a feeling is that!

I turned 20 in late June of 2015. When I finished high school, I wanted to take a small break to really think about what I wanted to do with my twenties. As an Australian raised in south Ontario for her whole childhood and was missing America, more so New York City, I was starting to plan to spend a couple of years living overseas in NYC before returning to Sydney to start studying. Since I was 11, I’ve had a profound fascination with psychology and medicine. Initially, I wanted to study psychiatry specialising in schizophrenia which transitioned into clinical psychology specialising in schizophrenia, it was a passion of mine to aid patients with schizophrenia to a life of independence and stability. To me, it didn’t matter when I was going to study just as long as I gave myself some time to travel before I dedicated 6+ years of full-time study.

Of course your worst, most unpredictable days happen when you least expect it. For me, it happened on Thursday, August 27th, 2015. An day of just minding my own business. I woke up not feeling anything significant or out of the norm, just the agenda on for the day which was a slow day. It consisted of going to the gym in the morning and cleaning up the apartment. It was sunny with not even a single cloud in the sky which made me more motivated to carry out my errands. I went into the gym without a thought, until I reached the treadmill. I was walking at a slow pace for about a couple of minutes but felt really nauseated, not to the point of rushing to the nearest bathroom but enough to feel uncomfortable. I remember thinking “You know it could be because I haven’t eaten anything, don’t want to run the risk."

Once I got home, I made breakfast and cleaned up, only thinking about showering before the errands started. I noticed my nausea was still lingering and making me feel off. I thought having a shower will make me feel better, however that’s when things got worse. Once I got in, I went to look for the shampoo and I couldn’t for the life of me differentiate the bottles from one another. I read both shampoo and body wash but couldn’t register what the purpose of their uses. It only clicked to me which was what after five or so minutes, the smell and body shape helped. I totally dismissed this moment as nothing out of the ordinary, almost as if my brain hadn’t registered the confusion. I then proceeded to get dressed and dry my hair. I still felt the same but again dismissed it for hay fever considering it was end of winter - perhaps nature is playing up.

Afterwards I sat on the bed with my legs up replying to emails and messages. While typing I heard a thud in both ears but more so in my left ear. Thinking it was construction, I looked out my window and saw nothing but the apartment buildings around my window. After 5-10 minutes of being on my phone I heard the same sound but much louder. It startled me to the point where I jolted my back away from the wall of the bed, thinking it must be the hay fever getting to me. At that point I was ready anyways to start my errands, but first to clean the apartment. I swung my legs over to sit up from the bed so I could get up. As I got up from the edge of the bed, I walked two steps towards the sliding wardrobes to place my phone on one of the shelves inside. As I reached my right hand with the phone towards the shelf I faceplanted onto the floor, laying between the gap on the bed and the wardrobe. I thought it was so odd that I fell so easily just by taking two steps but excused it for being so clumsy and straight up stupid. I went to roll onto my back to get up but once I felt the back of my head on the floor, I saw my right arm flop to the ground. I looked at it thinking I had broken it. I slowly grabbed my wrist with my left hand to lift it up and watched it drop to the ground, completely lifeless as I looked down at my right leg trying to mentally move it. I remember looking up at the ceiling and letting out a scream, the type of scream you hear in a horror film, I realised I was having a stroke.

I had my moment of reaction, but I knew I had to use the energy or life I assumed I had left to phone for help. At the time I was living in an apartment with my parents which was two streets away from St. George Hospital. Luckily, my parents were at the doctors which was beside the hospital but on the Kogarah side, but at the time I didn’t know that. If there’s one thing I’m proud of, it’s how I handled the situation. I knew immediately to call my mom to tell her I was having a stroke and was calling for an ambulance. Truth be told, I didn’t care if she knew or if she needed more information, at the time phoning for an ambulance was much more important. I just called, said exactly that and hung up.

I remember how I sprang into action when I looked to my left side to see my phone had fell with me. I remember saying out loud hyperventilating, “oh my god this is it”. I knew I had to perfect this call and tell the dispatcher the same thing I told my mom with the additional information of the symptoms and more importantly my address. Once the dispatcher answered the first thing she asked was “what’s your emergency?”. I stated everything but once I said, “my address is- “, she stopped me and said “wait, how old are you?”. After I told her I was 20, she scoffed and said, “you’re 20 and you think you’re having a stroke… ma’am have you taken drugs or have had alcohol?”. I remember being shocked and saying “what?! No???”. We had a back and forth while I screamed in between, the realisation of what was happening and believing I was going to die any minute now.

At some point she asked for my address which I ended up having a hard time reciting. Meanwhile, my parents were coincidently behind the ambulance going to the apartment which they were able to let into the apartment. I remember once I heard the footsteps of the paramedics, I thanked the dispatcher and hung up. I remember looking up to two young paramedics, hoping they would help me immediately, only for one of them to ask in a tone that angers me to this day. He looks down and says, “what happened, did someone have a little fall?”. At that moment I felt that they weren’t taking me seriously either because of my age or that they thought I was being over-dramatic based on my age. One of the medics knelt and looked right at me, at the same time I saw my mom standing at the back looking understandably concerned. I started to fade out and no longer able to communicate, only really seeing the colour grey and then eventually black, however during that moment I felt that death had arrived during that grey period and a sense of acceptance and maybe even a sense of relief came about. Once I blacked out, I felt like I was floating in space and could see stars around me, I was even able to look down at my legs to see them weightless as well. I remembered thinking to myself, “Is this what death is? Okay” but then everything had completely turned off.

Once the paramedics took me to the hospital while having my mom in attendance as well, dad had to wait for a washing machine to be delivered literally minutes after the paramedics took me away. What my mother told me was that as soon as we got to the ambulance bay, a team of nurses rushed me in straight into a private room. In summary, after my dad got to the hospital and I had CT scan, a neurosurgical team came into the room and told my parents I did in fact have a stroke caused by a ruptured AVM, which meant I was having a brain aneurysm which required immediate craniotomy. By that point, my sister and her partner at the time arrived just as they were wheeling me into the theatre, the social worker told her that she won’t see me before the surgery only for me to be wheeled out through the swinging doors behind her for dramatic effect. My poor family was so upset, talk about poor timing.

The surgery went on for the remainder of the day and well into the evening, the craniotomy required a removal of the AVM and to alleviate the swelling. Once the surgery was over, I was placed into an induced coma from that Thursday to Monday midnight. I don’t remember anything during those days except my ridiculous coma dreams (didn’t know that was a thing) and a 3 second wake up from my coma but for a while I thought it was a dream. It has been confirmed dozens of times that it wasn’t a coma dream and there was in fact dramatic scenes from the ICU. Apparently, one of the ICU doctors who wasn’t entirely part of the team told my family I’ll either remain a vegetable for the rest of my life, and they’ll have to take care of me for as long as I live or that I would pass away in a few days. This caused my mom to get emotional and rest her hands on the bed rail but because of the stress, tension and weight she had, it made the rail collapse which woke me up. My godmother got near my face asking me to stick my tongue out, which I did, and saw her look across the bed screaming at the doctor, “What the fuck is wrong with you?!”. There was so much screaming and yelling from everyone but that’s all I could remember before I returned to my coma.

Once I woke up, I was told by the ICU nurse that I had a stroke and that I was paralysed on the right side of my body, but I’d make a full recovery in two years. I already knew that, but to wake up thinking it was still Thursday but really it was Monday and then being told I’ll be paralysed for a further two years shocked me to the core. I really thought that the hardest part was over, I was still comprehending the day of the stroke but to now know this brand-new information in an environment that is the ICU, blue curtains, the hospital smell and the beeps from every single machine in that room, where do you even draw your focus. I remember her name as well, Rachel, she was so kind and compassionate and patient. I didn’t have the best memory for a while, so I had to ask her what happened another 30 times. There was a night in ICU where I was alone with no one around me, just in the company of some curtains, machines and a nurse. Once again, my memory wasn’t elite, but I still could have some recall. I asked this nurse if I’ll ever walk again, he said “I’m not sure sweetie, I can’t answer that. Maybe ask the surgeon tomorrow.”. I asked him a few more times throughout the night, with his answers being similar but sweet. I just needed something to sleep on, it’s like shaking a magic 8 ball asking the same question but expecting a different answer each time, just for some peace of mind.

Once I was in a stable condition, I was transferred to the stroke rehabilitation ward and would remain there for a further six weeks. That was an experience and a half. I was the youngest patient in the ward with the second youngest being in their late 70’s. All the patients were so kind and sweet, I think they were aware that there was a significant age difference between myself and the others. I guess I was the baby of the ward, and they wanted to do as much as they could to protect me and make me feel comfortable and welcomed. During my time being on the ward I was such an emotional mess, anything and everything triggered me. I was motivated doing my physiotherapy and occupational therapy but once I was back in my room or my section of the shared rooms, I was exhausted and just sad. I remember one night I was with my parents in the corner of the shared rooms in bed talking to my parents about how exhausted I was and how traumatic it’s been. I stayed quiet about it because I didn’t want anyone to know but in the corner of my eye, I saw a woman in a wheelchair slowly rolling towards my bed. Once she got to my bed she grabbed my hand and placed three dark chocolate Lindt balls, my favourite at the time, in my palm and smiled at me. There must have been a gap in the curtain where she could see me. My family and I became close to her and her husband because they were Greek as well.

I’ve built such beautiful friendships with the other patients as well as the nurses and physios. Layla was one of the first nurses I met and she took care of me all through those six weeks. She was full of life and positivity with such a contagious smile. One day Layla came in to talk to me about a life change she was going through. She had converted to Islam and had decided to wear a hijab, and because my hair was half shaven, mangled and knotted like a Barbie doll to the point where they had to cut majority of my hair off, she gave me her hair extensions so I wouldn’t be so self-conscious as well passing down her jewellery she thought I’d like (I still have it to this day). Another nurse who I think about often is Carmen, she was a small mighty woman who was passionate about her job. Whenever she saw me she’d call me her princess and make sure I was okay and happy.

I must mention though, there were some moments where you could tell people really weren’t interested in their job. I had many physiotherapists, all so wonderful. But there was this one physio I really didn’t trust. He had an attitude and always a sour look on his face. I didn’t like his presence, and I told my parents about it but they said to just trust the process. During a morning physiotherapy session, I was laying on the physiotherapy bed and doing repetitions of raising my arms up with a stick. The physio had a phone call coming in and said he’ll be back but to keep going. A good 45 minutes later he comes walking in with a smirk on his face and says, “I just closed a deal on a house”. In my head I said to myself, “COOL, get back to work!”. I told my parents about it later that day fuming about how I wasted an hour of rehabilitation with this man. After my parents approached the head physio and demanded to be under the care from another physio. My family and I were thinking, “If you hate your job, then why do it? Especially in healthcare, where you’re taking care of some of the most vulnerable”.

Nearing the end of late October, I was discharged as an outpatient. I was only given 6 weeks of outpatient care by the public health system before I had to find my own method of rehabilitation. I had no lead to where I could source a physiotherapist who specialised in stroke. This caused a massive stunt in my recovery and therefore couldn’t recover in the timeframe the ICU nurse had told me. I felt defeated and let down, I could also see it in my family as well. My parents were drained and as emotional since we had zero guidance from the hospital. I still saw the head of my rehabilitation team for a little while which led to quick and not considerate solutions. It was only in our hands to figure out a plan to “fully recover” that I was promised from the stroke. This is also why I might have not received the help I needed; the brain’s plasticity is constantly evolving. Age 25 is at its peak for recovery, but the brain’s neuroplasticity never goes away. If I had the stroke in my late adolescents, I would have had more intensive care. If I had it at a much older age, then I would have had more monitored care as I’d be more vulnerable. Being young yet an adult and not being in a children’s hospital but in a ward full of elderly patients, it’s more of a “she’s only 20, she’ll be fine”. Even years later all the doctors and physiotherapists say they’re not surprised that’s happened.

About six months after the stroke, I woke up at midnight to me convulsing on the right side of my body. I thought I had the shivers from a cold but was unsure. It happened more frequently at nighttime to the point where it terrified me and went to the ER. I was told it could be seizures and to wait for my follow up appointment I had already scheduled with my accolated neurologist since the one I was recommended couldn’t take any more patients. I remember waking up at midnight with a convulsing right leg while I was googling what a seizure is.

I saw the neurologist a week later and she determined that I could be having seizures. As an inpatient I was on anti-seizure medication from the moment I was in surgery and onwards for precaution. I was not made aware that strokes can potentially cause you to have seizures.

During the years of early 2016 – 2019 were some of the toughest years. It was full of trial and errors and trying to find the right routine to gain recovery. There was still no luck in finding a physiotherapist who specialised in stroke, and I had to use the gym for exercises. Luckily, I had one physiotherapist who did his practice in stroke during university, and I still use his techniques to this day. I went on to have multiple PT’s help me gain muscle and strength who showed massive support with my recovery.

I developed a perfectionist characteristic about perceiving a perfect body image that looked as if I wasn’t paralysed. It became so self-destructive that I didn’t recognise the woman in the mirror. I would constantly have breakdowns and compare myself to others who had healthy bodies and were ahead with their careers and freedom. I didn’t have healthy relationships either, truthfully, I contributed to that as much as others did but looking back it was because I didn’t respect myself enough and the heartbreaks could have been entirely prevented. In 2018, I was then diagnosed with obsessive compulsive disorder and was weaned off an anti-seizure medication, which may have impacted my mental health. But I continued having distressing intrusive thoughts which debilitated me. 

When I reflect on that era I get waves of chills, sadness, disappointments and cringe. These feelings stem from how annoyed I was for not focusing on myself in a healthier, loving light and giving myself grace to truly heal but instead become so harsh on myself to catch up to everyone and get with the times.

Even though I was having these horrible experiences, it didn’t stop me from regaining my independence and freedom. In 2017 I decided to return to driving and had the hospital organise an occupational therapist and driving instructor to teach me a different method of driving since I still have weakness in my leg and arm as well as foot drop. We as a team made it work and it took me 4 months for the hospital to clear me for driving. It was a special time in my recovery since I was longing for independence and I was one step forward towards my goal.

In 2019 at the age of 23 I decided to take a big leap from the same old routine and attend UNSW and move out of home. I never thought to move close to the city but my mother insisted it’d be best for me to be closer to uni and she was right. It was a fresh start that was very much needed. I was still having these seizures and since I had no real answers I went to my neurologist to get to the bottom of this. He organised an ECG and EEG to be attached to me over a 5-day period to check for any signs of epilepsy. Of course I had epilepsy, just to add more zest into my stroke recovery. I remember when I came in to get the results and my neurologist turning around from the computer screen saying, “isn’t this remarkable! This technology is amazing. This is the first time I’ve had a patient do this!”. I remember thinking his reaction was hilarious but thought, “Raymond what do you MEAN this is remarkable I’ve got epilepsy”. They were only focal seizures which explains the one-sided convulsions. He asked if I wanted to be medicated but I declined because of my experience with past medication. I should’ve said yes because I ended up having a grand-mal seizure two months later from a panic attack.. whoops. Since then I’ve been on another medication with no issues.

In the years following 2019 I saw myself evolve into the person that I wanted to be. In 2020 I continued my studies in Bachelor of Arts majoring in philosophy and psychology as a pathway to become a clinical psychologist specialising in stroke. During that time even though COVID hit I was still in a phase of my life where I was learning more about myself but in a positive way. In 2019 I met my then PT and friend Karissa who helped me learn healthy mechanisms when it came to negative thoughts about my body, personal life issues and how to create a healthy lifestyle. That continued throughout COVID even when the gyms closed. I started to see my body in a different light, as a body that’s just trying, that it's moving a long and evolving as I go. I always felt heavy in my body and that I was running on dirty motor oil. I learnt to feed my body wholesome foods and continue exercising, pick up new hobbies and meet likeminded people. It didn’t mean my life suddenly experienced rainbows and unicorns. I still had several upon several negative thoughts related to the stroke and how frustrated I was that my body was still not recovering. Despite those emotions being so strong I was able to snap out of that mindset much quicker.

Sadly in 2022, I had to defer from UNSW due to new health issues. I suddenly started to experience spasticity and toning at an accelerating rate with no understanding why other than COVID closing gyms and physiotherapist practices which stunted my recovery. It was affecting my walking so much which contributed to leg injuries and horrible back pain. This meant I had to seek a new kind a rehabilitation which involved intensive rehabilitation, hydrotherapy and multiple Botulinum Toxin with nerve blocking agent injections put in the calves and leg to release and relax the muscles. I was thankful to not have a severe case of spasticity in my arm, it’s mildly there but my leg is a whole other level.

In 2023 my physician Dr. Watanabe gave me a pamphlet with details about a study being conducted by Macquarie University. I was able to be a participant in a trial for a research group which studied how intensive rehab can improve stroke patients’ recovery even nearly a decade on. Towards the end of the trial, the physio’s and researchers said my spasticity was too severe to attain a noticeable difference. Long period stretches like serial casting (being in a cast in a passive stretch for a period until achieving a 90-degree stretch) was mandatory. Since late 2023 and to this day I still do serial casting. It’s so tiresome and painful, but I know it’s for the best and I have seen a difference in my mobility, it’s just about trusting the process.

Over the last nine years I have come across and observed many things that society and people in general do that I never noticed pre-stroke. One, the curiosity that many people have regarding the details of the day. It’s understandable that people are shocked to hear of stroke happening in young adults and they can’t help but wonder why, that’s just human nature. But by the same token, questions about the graphic details of what happened, questions like,” Oh my god, so what happened? Go into detail”, “What happened next?” and “What kind of brain surgery did you have?” shouldn’t be asked by a stranger, in my opinion at least. Especially in a social setting such as a bar or party, the common playground for these incidents. I believe majority of the questions come from either concern or genuine curiosity, when we have an interest in something that’s unheard of, we want to know more about it. Perhaps even fear is stemmed from these questions because that person realises it can happen to them as well. Another part of it is from entertainment... the dramatics, the graphics, the unspoken reality about stroke and really anything out of the norm. Unfortunately, I haven’t mastered the talent of setting a boundary and saying, “Actually I don’t feel comfortable with sharing my story”, “Maybe another time.”. All the time it feels like I’m being pushed up against a wall with microphones and news cameras being asked to talk about the most traumatic day of my life. I sacrifice my sanity and comfort to make others not feel uncomfortable for saying no. That obviously takes time and patience within yourself to place a barrier and be okay with the silence, even when the person takes it as an attack.

Two, the assumptions others have when they hear about stroke in young adults is a little amusing yet sad. I say amusing because the assumptions aren’t even close to what it really is, sad because society and even healthcare workers can’t comprehend. Even the dispatcher was quick to assume drugs or alcohol is to play. The common assumptions are always around an action I’ve done (a fall or accident), something that I’ve done to myself (drugs/alcohol), or of recent the contraceptive pill. I was recently admitted to hospital for non-stroke related reason and I had these two wonderful, sweetest nurses ask if the stroke was caused by the pill. Yes, I’ve been on the since I was 18 but that doesn’t always mean the stroke caused it. When I mentioned the AVM they were both surprised. I understand AVM’s are not common however it made me question how the healthcare system views strokes in younger people.

Three, the judgment coming from able-bodied people when they see the way I walk, or even when being interviewed for a job. I started noticing the bitter-faced glances when people would look at my leg and the way I was walking. They’d look directly in my eyes then look back at my leg. I would sometimes get forced to walk against the walls of a shopping centre or in the city so people could walk more freely. Unfortunately this is still a daily occurrence. Even parking in a disabled parking spot, I’d get approached by others saying, “you’re not meant to park there”, “Is that your grandma’s parking permit?”. When I’d grab my parking badge they’d run off, very cowardly of them in my opinion. I was lucky enough to land jobs post-stroke, but I was fighting for my life to convince employers that I was capable of doing office work just like everyone else. The employers who didn’t hire me would turn me down for liability reasons.

Perhaps stroke awareness isn’t as common in Australia. In Canada, there was a Heart and Stroke Foundation commercial from the early 2000’s that was traumatising and scary to watch, every kid who watched it switched to the next channel. It wasn’t graphic, there were no images, just words replicating the stroke symptoms and eery music in the background. Nearly every millennial adult remembers it and is an ongoing joke in our family. That’s the thing, the commercial is meant to leave a mark on you so you can remember the signs of stroke and the seriousness of it. That was what I was thinking the second the stroke happened. Embarrassingly, as well as an episode from Family Guy when Peter had a stroke.

There’s one thing I’ve learnt from this life changing experience. Stroke and other traumatic experiences come with more negative than good, yet it’s how you take advantage of the negative and turn it into a benefit. I see my experience as a meaning of life now, despite my demons pulling me down daily I still carry on knowing there’s a young stroke survivor out there trying to find the light, the same way I used to, and I’ll try my best to be there.

Before I finish, I want to thank everyone who has been part of this ongoing journey. I want to thank my family, friends, partner and my emotional support dog Norton for being there by my side no matter what. My neurosurgeon, Professor Mark Davies and his team, who saved my life at the very last minute. My first neurologist Dr. Rowena Mobbs and my current neurologist, Professor Raymond Schwartz. Every single nurse, physiotherapists, occupational therapists and speech pathologists when I was an inpatient. The inpatient/outpatient psychologist Michelle Riashi. My other psychologists Professor Ross Menzies and Laura Alfred. Reshan, my first physiotherapist outside of hospital. My personal trainers Loekie, Rania, Jennifer, Karissa and Kaylah, who helped me regain strength and always showed unconditional love and support along the way. The driving instructor and OT who helped me learn how to drive again. My spasticity physician, Dr. Yuriko Watanabe. My serial cast physiotherapist, Rebekah Cook. My general practitioner Dr. Farah Azar. My endocrinologist, Dr. Terry Diamond. I also want to thank all the respectful and kind strangers who have helped jump from platform to train carriages, who’ve help me access elevators and stairs and given me space to move around.