National Stroke Week: Michelle’s Story
Posted on
If you had asked me a year ago if there was a ‘National Stroke Week’ I would have had no clue. This year however, I am all too aware (it’s this week, from 7-13 August), because I had a stroke nine months ago.
While I’m a relatively private person (apart from my love of food, which many HC readers definitely know about), many of the people I’ve met since having a stroke who have shared their experiences have inspired me to share mine to contribute to raising awareness of stroke – and to give others hope that there is life after stroke.
When my symptoms first started, the possibility of stroke as an explanation for what was happening to me didn’t even cross my mind – I was pretty healthy, relatively young at 41, and had just driven the three hours from Sydney to Canberra the weekend it happened. I’ve since learnt that stroke does not discriminate – I was horrified to discover that even babies and children can have strokes. In my mind, strokes only affected older people.
Looking back, I’m almost certain about when the stroke started happening, though I didn’t realise it at the time. I was at the Bill Bailey gig at the National Convention Centre on 5 November 2022, when I went to cross my left leg over my right and it didn’t move like it normally did. I suddenly felt incredibly tired, but I blamed that on delayed fatigue after the long drive back from Sydney and going straight to dinner and the show. Afterwards, I managed to walk out of the theatre and down the stairs, apologise to my friend that I was too tired to give her a lift, then walk to my car near the Canberra Centre and drive home. I noticed my left foot was dragging a little, but put it down to pins and needles from sitting too long. When I got home, I went upstairs, got ready for bed, and did something that in hindsight was incredibly stupid – I went to sleep.
I remember seeing a saying once that the definition of optimism is setting an alarm for the next morning. At the time I just laughed it off, but now I genuinely understand what that saying means, because I’ve realised how lucky I was to wake up that next morning after my symptoms started, and every morning since – I’ve now learnt that stroke is one of Australia’s biggest killers.
I was scheduled to meet a friend who was visiting Canberra that morning. I somehow managed to get ready and get changed, and then the left side of my body stopped working and I fell and found I wasn’t even able to crawl. I somehow managed to drag myself to and onto my bed, and messaged my friend to say I might be late as my body wasn’t working properly. She immediately wrote back and said I needed to go to hospital. Still not realising what was happening or how serious it was, I rang my brother to ask him to come get me and take me to hospital, as I didn’t want to call an ambulance unnecessarily. Again, luck was on my side as I was still able to speak coherently (not everyone can after a stroke).
When my brother arrived he helped me off the bed, down the stairs and into his car, and we went to the ED at Calvary Hospital. Looking back, his composure at the time was extraordinary and helped keep me calm (I found out later how terrified he was). We got in line and once it was my turn (I was second in the queue) I was admitted right away and subjected to a number of physical tests. I was genuinely shocked when the doctor told me they thought I’d had a stroke. My brother told me he’d called our parents, who had immediately dropped everything to make the drive from Sydney. I must have been in some sort of denial at the time because I didn’t think it was serious enough to warrant my parents coming all the way to Canberra on such short notice, although I was extremely relieved and grateful to see them when they arrived, while I was still in the ER.
After some time (a few hours?) I was moved to the stroke unit, where I would spend the next 10 days. Surprisingly, I wasn’t the youngest person there, and I was a bit frustrated to see that that particular wardmate was capable of walking while I couldn’t (though I’ve since learnt that stroke affects people in different ways, sometimes more cognitive than physical). In fact, by this point I couldn’t move my left leg or foot at all and it was like my body had forgotten my left arm and hand existed (and while I’m right side dominant, I didn’t realise how much I used my left until I couldn’t). I was subjected to more tests, this time cognitive and fine motor – passed the cognitive with flying colours, failed the fine motor dismally – and also a speech assessment. By this point I was really hungry and I remember one of the nurses telling me the speech pathologist was literally my meal ticket: if I couldn’t talk/swallow, I definitely couldn’t eat. I thankfully passed that assessment and was given a sandwich.
I started messaging people to let them know about my situation – work and friends, but also to ask them to let others know, to take some of that burden off me. Back then I was such a workaholic that I continued to check my work emails on my phone while in hospital, telling people I would be back on deck soon (again, I was either in denial or delusional. Or both!). My sister-in-law wisely refused to bring my work laptop to the hospital when I asked her to.
During those scary first days post-stroke in Calvary I was able to find things to be grateful for – the care and concern of the nurses in the stroke unit, my family and friends who came to visit, making a new friend in the lady in the bed next to me, Christine, who was feisty and good company when we didn’t have visitors, and the multitude of flowers and good wishes. (The volume of flowers was actually so large that the majority were taken to my brother and sister-in-law’s house as there was no room in the hospital). I have a lot of friends, but I don’t think I realised how much people cared about me until I landed in hospital, and now I carry that realisation with gratitude every single day.
I am eternally grateful to my physios at Calvary, Lucy and Pat, who taught me how to stand and walk again and encouraged me to keep pushing my limits. My sessions with them were the highlights of my day. The routine of physio got me out of bed and the room, and were the beginnings of building my confidence back up. I still think back to the time Lucy brought out boxing pads and asked me to box – I thought she was mad, but I managed to give it a go without falling down.
As the time went on, talk turned to moving me to the Uni of Canberra rehab hospital (UCH), which at the time I didn’t even know existed. But – as with all hospitals – bed availability was an issue, so I had to wait. I finally got my ambulance ride when I was transferred on 16 November 2022, 10 days after I first went to Calvary. The change of scenery was a welcome one – the hospital was new and I was given my own room at first, which was great when I had visitors. I was encouraged to leave my room and walk around if I wanted, so the first night I was there my brother brought me KFC and we went and ate it in one of the dining areas.
Being a rehab hospital, the focus at UCH was obviously that, so I adjusted to a new daily routine of breakfast at 8 am, followed by an hour of physio at 9 am, an hour of occupational therapy at 10 am, then a nap (all effort was exhausting back then), lunch at 12 pm and more physio at 1 pm. When family and friends came to visit I would also go for a walk with them outside the room. My physio at UCH, Rain, pushed me as Lucy and Pat had done, challenging me to walk on a treadmill and setting up obstacle courses for me to navigate (which was also entertainment for some of the others in the room). Having discovered that day passes were a thing here, my goal was now to be declared safe enough to have a day out of hospital on my birthday. I’m pleased to say I achieved that goal, and was able to spend my birthday at a café with friends, followed by enjoying takeaway from Lolo and Lola for dinner with family at my brother and sister-in-law’s house (where I spent my first night out of hospital, though I had to go back the next day).
I was finally discharged on 26 November, just under three weeks from when I was first admitted. I spent the first two weeks living with my brother and sister-in-law, doing rehab both at home and at UCH outpatient (thanks to my brother for driving me from the deep dark south to Bruce on those mornings) before moving back home on my own.
Now, nine months since that awful day in November last year, while my left side still feels strange and I haven’t yet regained the same energy levels I had pre-stroke, I have a lot to be grateful for. I’m back at work, although not full-time yet – a big thank you to my managers and colleagues who have been so understanding and accommodating, and who were so welcoming when I returned. I’m back driving (I had to pass an OT assessment to be allowed to do so) and living independently (including being able to tie my hair up, which became a main goal of mine while in hospital when I discovered I couldn’t do it anymore).
A huge thank you to my family and friends who have helped me return to my life, taking me to appointments, visiting or driving me around when I couldn’t, encouraging me to get back to usual activities (like dinners, shows, trivia nights, writing for HC) and trying new ones (like reading at my friend’s wedding, travelling domestically again), and thanks to the parish at Holy Rosary in Watson for reaching out to me and praying for me while I was recovering. Because of the stroke I have also made new friends all over Australia – a particular shout-out to the Genyus Network Coffee Club peeps, who I meet with regularly on Zoom and who have been a great source of comfort, advice, joy, and hope.
Stroke information
- Memorise the acronym BE FAST to be aware of signs of a stroke and to call an ambulance ASAP – Balance, Eyes, Face, Arms, Speech, Time.
- According to the Stroke Foundation, one stroke occurs every 19 minutes in Australia.
- Stroke can happen to young people as well – if you don’t know what your blood pressure is, start being aware, as undiagnosed hypertension is a common cause of stroke (it’s what happened to Jessica Watson’s partner Cam).
- Resources – some books I found invaluable are: Stronger After Stroke by Peter Levine, Healing the Broken Brain by David and Michael Dow, and Finding Yourself After Stroke compiled by Letisha Living.
- Connection – it is incredibly helpful and encouraging to connect with others with lived experience. Join an online community like Genyus, or in Canberra a face-to-face community for brain injury survivors has recently been started (Synapse Canberra Reconnections – next gathering 26 August).
