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If you wish to watch Elena tell her full story, you can view her video here.
Hello TPC Team,
What an honour it is to speak of my story and experience on The Pilates Class platform; you don’t get opportunities like this often. My story is one of depth and length, with highs and lows, like many stories. However, my experience is one that is relatable to women with disabilities like or similar to mine.
In late June of 2015, I turned 20. I was both excited and terrified of what adulthood entailed. It’s true that when you enter adulthood, you’re unsure what to do with yourself; you feel like you’re far behind everyone, even though others haven’t started their own journey yet. Despite being terrified, I was still keen to figure out what I wanted to do. For as long as I could remember, I had always been interested in medicine and psychology. So, after my birthday, I planned to apply for university that year to study psychology the following year. I also had mentally planned to travel everywhere and potentially spend a year or two in New York, like every other 20-something-year-old. Travels were always on the books.
My plans for my 20s halted abruptly on August 27th. In the late morning, I felt off but didn’t think much of it. It was when I went to sit up from bed and walked over to place my phone on a shelf that I fell to the floor. Thinking I just tripped, I rolled onto my back and saw my arm flop to the ground, thinking I had broken it. I lifted it up and dropped it, then looked at my leg. At that moment, I realised I was having a stroke. I remember screaming in shock and fear, immediately thinking of death.
My phone had fallen beside me, thankfully within reach. I planned to call my mom first to tell her I was paralysed from a stroke and that I was calling an ambulance. Living just a street away from the nearest hospital, I thought help would come quickly. When I called my mom, she didn’t immediately grasp what had happened, but my dad quickly understood and assured me they were on their way. I then called 000, expecting urgent assistance. However, the dispatcher wasn’t convinced. She questioned whether I had taken drugs or alcohol and only eventually asked for my address when I struggled to even string a sentence together. By coincidence, my parents ended up driving behind the ambulance on its way to my house. To their disbelief, the ambulance had no sirens or lights on—it was driving casually, as if there was no emergency. When the paramedics finally entered my room, one of them dismissively asked, “What happened? Did somebody have a little fall?” I was shocked and disappointed by the lack of urgency and compassion from the very people I had trusted to help me. Moments later, I started fading out and eventually blacked out completely. I didn’t wake up again until just before midnight on Monday.
Once I was taken to the hospital and evaluated by the neurological team, they concluded that I had a haemorrhagic stroke from a ruptured arteriovenous malformation (AVM). An AVM is a tangle of blood vessels you're born with that creates abnormal connections between the arteries and veins. In some cases, you can have symptoms such as headaches and seizures, which, when reviewed by a neurologist, are diagnosed. In other cases like mine, there are no symptoms. I was scheduled for a craniotomy an hour later and was placed in an induced coma after surgery.
Upon waking up, the ICU nurse confirmed that I had a stroke and that I was paralysed on the right side of my body but that I’d make a full recovery in two years. Two years is hard to hear when you wake up to that news because the trauma from what’s happened has just started. Unfortunately, my memory wasn’t sharp, so I had to ask the nurse what happened about ten times. The patience and kindness she had that night didn’t go unrecognised.
Over a week later, I was transferred to the neurological ward, where I would be an inpatient for a further six weeks. It was overwhelming at first because when you’re recovering from a brain injury, rest is one of the most important parts of recovery. However, physiotherapy and occupational therapy are just as important. For me, at least, I felt that most (not all) of the physiotherapists were not helpful at all. You could tell they didn’t like being there and didn’t care too much for your wellbeing. I once had a physiotherapist who had a horrible attitude towards the patients and myself. My family and I would think, "If you hate your job, why do it? These are the livelihoods of the most vulnerable people." I was laying on a physiotherapy bed mimicking a bench press with a stick. This physio decided to take a call and left me there for an hour unsupervised. He walked back in with a smirk, saying, “I closed a deal on a house.” My parents were furious when they heard that, requesting the head physio never allow me to be under his care after that. Your brain is at its prime time in recovery to attain the movement it’s lost from the stroke, and the patient cannot afford to have their time recovering with unprofessional healthcare workers. For me, I didn’t have a moment to take in what had happened or be present to take in the ordeal I went through. It was very much a go-go-go process. Everything had to be done, and not a moment could be wasted. That is the reality of physical rehabilitation.
There were times when I sat in silence in the ICU at 2 a.m., pondering over what day it was and what was going to happen next. I still had Endone and Propofol (a sedative drug for induced comas) in my system, which resulted in memory loss. I asked one of the exhausted nurses, “Am I going to walk again?” I remember him saying, “I’m not sure, sweetie, I can’t answer that.” I so desperately wanted an answer I could sleep on. It’s like shaking a magic 8-ball, asking the same question, hoping for a different answer.
When I was on the neurological ward, I was a mess. I was the youngest one there, the second youngest being 79. I felt like I stood out the most in a ward of 20 or so people over the age of 75. I’m pretty sure the oldest was close to 100. I was—and still am—so grateful for the support from my family, always visiting and checking in on me and always finding ways to lighten the mood, which consisted of bringing me my favourite food and making me laugh. I remember having a really hard time with rehab and feeling like giving up. My mom’s cousin’s husband visited me after a long afternoon. He said something so out of pocket (we love him for that) but it had stuck with me to this day. He said, “Life is like constipation, it’s hard, but you gotta push through it.” Everyone in the room rolled their eyes, thinking, “Why would you say that?” It was the first time I laughed in a while, and it’s something I think about occasionally.
I felt a bit of support from some friends. They initially came to see me when I first had the stroke. We were all 19-20 then. It’s quite scary and confronting seeing someone your age in the condition they’re in—bedridden or in a wheelchair and not looking like themselves. It was almost like they did the deed of visiting someone who’s in hospital, taking a photo with them in a hospital bed, posting it on Instagram, showing how good they are as a person for being there, and not hearing much from them after that. Personally, I felt betrayed by that, but I understood that it’s overwhelming to be in an environment where there are others in the ward looking far worse than me because I also felt the same. I normalised it when I got to know the others. Even though there was a significant age difference, we only had each other, and we were all each other’s cheerleaders. I developed such beautiful friendships with people who had a lifetime's worth of wisdom. I was an emotional person at night when all the stresses of day-to-day life would set in. I was crying to my parents about how traumatising everything was. I kept quiet because it was in a shared room with three other people. In the corner of my eye, I saw an elderly woman in a wheelchair slowly come towards me with dark chocolate Lindt in her hand. She overheard me saying they were my favourite at the time. She grabbed my left hand and placed three of them in my palm. In that moment, I felt a lot better because even though there was a significant age gap, I felt understood and seen. We became friends from there onwards (I became friends with everyone).
The nurses were also some of the most angelic, compassionate people I have come across. They do not get paid enough for the hours and things they do. I had a nurse called Carmila who would call me her “princess” and took care of me as if I were her own daughter. Another nurse, who was also with me from day one, had converted to Islam and wore a hijab. She wanted me to keep the jewellery she used to wear, and she gave me her clip-in hair extensions because I had my hair cut off and part of my head shaved, which meant the condition of my hair was like a mangled Barbie doll. Another woman who was my physiotherapist spoke to me about her personal life and became emotional about it. We both cried and became close because of that. The following day, she gave me a beautiful rosary she had in her car; it was for the purpose of meditating during hard times. I still have the rosary in my car nine years on. It shows that nurses aren’t just healthcare workers—they’re people like you and me.
Once I was discharged as an outpatient, the neurological team advised that I apply for either youth allowance or a disability pension so that I had my own independence and financial aid since I couldn’t work and needed additional income for healthcare. I applied for a youth allowance through Centrelink, but I was declined due to my father’s income being too high (it really wasn’t, but under Centrelink’s policy, it was). I then applied for the disability pension, attaching all documents from the neurological team and neurologist stating what had happened and that I needed this pension. I was declined twice because I wasn’t disabled enough, despite being in a wheelchair and needing rehabilitation and medication, such as precautionary epileptic medication. I remember the second time I was rejected, the woman walked back from the printer to her desk with the rejection letter saying, “Ugh, my back is so sore from sitting in this chair.” I looked her dead in the eye while I was sitting in a wheelchair that I heavily relied on.
What I noticed was the lack of consideration that people with disabilities experience daily. I was brought up to be kind and compassionate toward the poor and ill, including the disabled. Maybe I didn’t think too much about it before the stroke, but going into a different part of society made me question, “Did I give enough? Did I ever make disabled people feel judged or let down?”. From the time I became an outpatient, I was given only 6 weeks of rehabilitation (not enough at all), but ongoing psychological help, which was beneficial. I still didn’t feel much emotional support from the physiotherapist, but I tried my best not to take it personally. From there on, I was no longer under the care of the hospital and had to find my own way to find a physiotherapist, including doing home exercises, which weren’t enough. I felt defeated and let down, and I could also see it in my family as well. My parents were drained and emotional since we had zero guidance from the hospital. I still saw the head of my rehabilitation team, which led to quick and not considerate solutions. It was only in our hands to figure out a plan to “fully recover,” which I was promised from the stroke. This is also why I might not have 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 had the stroke in my late adolescence, I would have had more intensive care. If I had had it at a much older age, 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.”
The years from early 2016 to 2019 were some of the toughest. They were full of trial and error, trying to find the right routine to gain recovery. There were no physiotherapists who specialised in stroke, and I had to use the gym for exercises. Luckily, I had one physiotherapist who practiced stroke rehabilitation during university, and I still use his techniques to this day. I went on to have multiple PTs help me gain muscle and strength, who showed massive support for my recovery.
On the neurological side, I didn’t have the greatest care in the beginning. Six months after the stroke, I woke up to my right leg convulsing, and I didn’t understand why. I went to my neurologist, who didn’t evaluate my condition that much. She said to switch from my precautionary anti-seizure medication, Dilantin, to Keppra. She told me that Dilantin could cause deformities in fetuses if carrying a baby, such as cleft palate and developmental delay. She believed it was better for me to take Keppra, but I had a high chance of experiencing suicidal thoughts. I didn’t think too much about it, but in the transition from Dilantin to Keppra, I experienced multiple suicidal ideations. Over the years, I went from suicidal thoughts to severe auditory hallucinations about self-harm. I was later brought on by the initial neurologist (Dr. Schwartz) I was meant to have, and we continued with Keppra. I developed a perfectionist characteristic about perceiving a perfect body image that looked as if I weren’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, were ahead in their careers, and had freedom. I didn’t have healthy relationships. 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 diagnosed with obsessive-compulsive disorder and was weaned off Keppra. I continued to have distressing intrusive thoughts, which debilitated me. Both my neurologist and a psychiatrist told me to stop taking Keppra, yet the intrusive thoughts stayed but were managed by a psychologist.
In early 2019, at the age of 23, I decided to attend UNSW and move out of home. I moved to Centennial Park so I was close to my campus and to have a fresh start. I was still convulsing but had still received no diagnosis. Dr. Schwartz organised an EEG and ECG to be attached to me over a 5-day period to check if I had epilepsy. Lo and behold, I had epilepsy. I remember when I came in to get the results, and my neurologist turned 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.” That was the day I finally had an answer to my convulsing—the stroke caused me to develop focal epilepsy, seizures that cause tonic-clonic convulsing while you’re conscious. A couple of months later, a panic attack led me to have a grand mal seizure, after which I was medicated with Lamotrigine, a much safer anti-epileptic medication.
In the years following 2019, I saw myself evolve into the person I wanted to be. In 2020, I continued my studies in a Bachelor of Arts, majoring in philosophy and psychology, with the plan 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 for dealing with negative thoughts about my body, personal life issues, and how to create a healthy lifestyle. That continued throughout COVID, even when the gyms closed, and from then on, a friendship blossomed. I started to see my body in a different light— as a body that’s just trying, that’s moving along and evolving as I go. I always felt heavy in my body, as if I were running on dirty motor oil. I learned to feed my body wholesome foods and continue exercising, pick up new hobbies, and meet like-minded people. It didn’t mean my life suddenly experienced rainbows and unicorns. I still had several negative thoughts, still going as deep as suicidal ideations, and engaged in self-destructive coping mechanisms like binge eating and having toxic relationships. I knew I should do better every time, but I got out of that mindset quicker than I used to, in 2016–2018.
Karissa and I brainstormed the idea of creating an Instagram account to keep track of my rehabilitation progress, with no intention to do anything more than take photos. I called it “Recover With Elena,” a play on Karissa’s business name, “With Karissa.” Until I made the account, I had no idea about any external community revolving around stroke recovery. I started following all these accounts, who then followed me back, which created my own little community of stroke survivors cheering each other on. When I started posting, I received comments and direct messages asking for advice and rehab tips as they saw my progression. It drove me to do more than just post my progress. It made me consider helping these survivors on an emotional and psychological level. My sister suggested I become a life coach. I remember shrivelling up and saying, “Noooo, not a life coach.” She replied, “Hmm, okay, maybe not a life coach, a stroke recovery coach... that sounds more like you.”
During 2022 and 2023, I researched, studied, and received a certificate in coaching. Sadly, I had to defer from UNSW due to new health issues from the stroke. 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. Spasticity is a neurological condition where muscles contract and tighten due to brain or spinal cord damage. It restricts movement in the arm and leg, affecting the way people walk or use their arms. Toning is a restriction of a passive stretch. This meant I had to seek a new kind of rehabilitation, which involved intensive rehab, hydrotherapy, and multiple Botulinum Toxin with nerve-blocking agent injection treatments every 4 months, put into the calves and leg to release and relax the muscles (My physician and I joke about putting whatever Botox is left into my frown lines and forehead). I’m 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 mid-2023, I participated in a trial for a research group at Macquarie University, which studied how intensive rehab can improve stroke patients’ recovery, even nearly a decade on. Toward the end of the trial, the physios 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) were mandatory. In October 2023, and to this day, I still do serial casting. It was during the time between casts that I decided to find other ways to obtain flexibility, and that’s how I found The Pilates Class. I’ve always followed Monday Swimwear and Tash Oakley; it was when she started posting about the online classes that made me go, “Online Pilates? At home? No need to leave the living room? Stretching and toning my body? Where do I sign??”
This is when I finally found the right rehabilitation program for me that I needed 9 years ago! Weight training at the gym, doing my simple stroke rehab exercises at home, doing pole dancing for body confidence and endorphins, and incorporating The Pilates Class for my stretches and toning. There were times when I had to pause doing Pilates due to unrelated injuries and had my serial casts on for months on end. Once I had space between casting, I jumped straight back into Pilates, and WOW, what a difference!
When I need a good stretch after casting, I go onto the “Stretch Class.” It’s a good class to learn the basics of your body’s movement and how much more of a stretch you can achieve over time. The beginners’ intro class is great for finding your body’s natural movement before getting into fast-paced classes. I remind myself that I am still disabled and have muscular weakness; I must listen to my body and take it slow to avoid injury. I find it fascinating, though, that the body has muscle memory. Each class becomes easier, and the messages from the brain to the muscles remind me that neuroplasticity is activating. The Stretch and Strength class is a mixture of both, incorporating mindfulness as well. Each class does, but it’s a class where I know that even when I’m moving my body at a faster pace, I’m also going to allow my body to rest and stretch in between, giving it an opportunity to relax and let the blood flow through, ready for the next exercise. I chose the beginners’ classes because they prepare me for when I’m ready to take it a step further. My TPC goal is to do fast-paced classes that challenge me, but I know my body can handle it. I want to complete a class and tell myself, “Yes, that was hard. I love it!” While moving your body is vital, so is what you put in your body. The recipes in The Pilates Class are whole food diet-based, full of brain and gut-healthy foods. As a Greek, greens and protein were always incorporated in our meals, as that’s so important for us. The roasted beetroot dip is my go-to for added flavour and other benefits. I have it with vegetables, on sourdough bread with beetroot leaves and feta. Beetroot is a must for everyone, especially people with heart disease or for stroke prevention, even if you’ve had a stroke.
There’s one thing I’ve learned 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. Every single day since the beginning, I have people give me horrible, uncomfortable, judgmental looks as if I don’t notice. They’ll look straight at me and not care if I saw their judgment. It affects me, and I try to snap out of it and think, “They’ll eventually understand in their own way, hopefully not my way.” There are opposite days where I’ll think, “This isn’t America’s Next Top Model, no need to judge the way I walk.” I sometimes get threatened and verbally abused by strangers because I park in a disabled spot, which used to leave me sobbing in my car for hours. I take advantage of my disability parking permit now and joke about it being valet parking. 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.
Elena Lampropoulos
@elenalampropoulos
@recoverwithelena