Some of the topics discussed will get you thinking about your own experiences. If you feel any distress, talk with someone you trust—perhaps a family member, friend, or your doctor. If you need support, information or advice StrokeLine’s health professionals are available 9am to 5pm, Monday to Friday, AEST. Call StrokeLine on 1800 787 653 or email Lifeline is available 24 hours a day on 13 11 44.

Video transcript

Saran: Yeah, so my kids were three, seven and one day off ten when I had my stroke nearly nine years ago and it was, it was huge. Luckily, and through it all, my partner basically never missed a beat, even made sure in that first night that he spent with me, he then sort of, well, he got himself locked in the stairwell, but he made sure that he got home so that my son would wake up for his birthday with him there. But you know, my partner has made sure that we're all looked after and we’ve looked after each other.

So I had my stroke, it was the right side, carotid artery dissection and it affected my whole left side. So my whole left side was paralyzed. There wasn't actually any cause for the stroke. I was fit and healthy and went to the gym doing like RPM three to four times a week.

Having had a stroke at 37 threw a lot of people, not just those around me, but when I first went to the hospital, they thought it was a migraine because, you know, obviously, surely, I wouldn’t have a stroke at this age.

It took about three days for them to work out because during the time we didn't actually have like a stroke unit in Adelaide but ended up having an MRI and they worked out that it was a stroke. You know, even, even in the hospital, I did rehab with an 85-year-old man who’d also had a stroke then, so that was great.

He didn't speak English, so that was even worse. But, you know, I was asked if I was on, had a pacemaker or I had artificial hips or knees. And so, it was really, you know, aimed at, all the questions when I had a stroke was, was, aimed at older people.

I was in hospital, probably, I was in hospital for seven days, in rehab for three weeks, even though they told me that I'd be in hospital for a month and rehab for three months. I think my determination and stubbornness, you know, helped me get out of there as soon as I could.

But I was actually really lucky in rehab, where I had great therapists who worked on the quality of my movements rather than just getting me home and getting me to move out and about. I was in rehab. I was the youngest by far, and I remember one day I was in hydro again with all these people that either had, had strokes or, you know, knee replacements, hip replacements. And this woman came over to me and she's like, ‘Oh, you know, what's wrong with you dear?’ And I said I had a stroke. And so, she gave me a hug, which was lovely, but kind of awkward in bathers.

But one thing she did actually teach me, and it stayed in my head the whole time was that she said her husband had a stroke a while ago and he was 60 odd, and he kept it his arm in that sort of that bent position, and it never moves.

So I always made sure that I've kept my left arm in a, being able to have a passive movement and that range of range of motion. I walked out of rehab basically only needing a hiking stick, but I had no movement in my left arm and hand for about 18 months, where I was able to start shrugging my shoulder. But slowly the movements come back down to my wrist. But I can't. Still, I can't feel anything at all on my left side apart from hot and cold and pain. So, my kids can pinch me and they keep pinching me. And until I can actually feel it, and when they push me on the right side, it really hurts. But, and especially if I've got food on my face, I don't know. So generally in public, you know, they've got a bit of a signal, but at home, they just laugh at me.

So, my first eight months, I suppose,  was spent going to therapy, coming home, going to sleep. I had to learn how to do things with one hand, such as get dressed, eat food, put on makeup, brush my hair.

I have two daughters, so they were the youngest ones. I wasn't able to do their hair at all. So basically from there, from the age of three and seven, they just went to school doing their own hair, which was really hard to actually have to deal with one because they looked awful, but also I was used to actually sort of having the head nice and tight in plaits, so you know, so make sure they didn’t any head lice. At least when we had school photos, I had people over.

When I came home from therapy, like, I'll be absolutely exhausted and I had no filter. So whilst I thought I just had physical disability, it was so much more like the fatigue, sensory overload, the amount of sort of just… it all hitting you and having no filter at all. Like I, you know how you sort of watch someone and kind of smirk at them or whatever.

I can't do that, and I can't lie. So my youngest, if I've sort of, you know, if I'm playing with it or whatever and I say ‘Ah no we’re not going here,’ she actually says to me, ‘OK, face me and tell me, are we actually going there?’ because I smirk, you know, I just I don't get away with it. But so she, who is now twelve, I used to come home and she'd want to play and I just would scream and cry.

And to this day, I'm sure she is petrified of me completely losing it. So, she always makes sure that she’s always helping me not bothering me with her issues. And that's really hard because as a mum, I should be looking after her instead of, you know, she is looking after me.

At least what we did do was when she wanted to play, I would basically sit in bed and she'd play shop, so she'd bring all of my makeup onto the bed or shoes and clothes, and I’d pretend I was a customer and ring up and, you know, sort of order and whatever.

But because she thought she was actually disadvantaged by me having the stroke and the other kids actually knowing me pre-stroke, but I actually had to teach her that I actually wasn't around all that much pre-stroke. And you know, and really, this time that I've ended up spending with her is way more than the two of them together. And it's really hard now when I look at it because, you know, I was so completely selfish with the work that I barely gave my children attention. So, in some ways, you know, I kind of see the stroke as a blessing to, you know, sort of give me that chance.

So the kids have had to learn that I basically need help, so I can't make dinner. So, on the nights that my partner is away, they make dinner, where food is so they’ve actually learnt pretty well. So my son will make teriyaki chicken from scratch, and my twelve year old even made breakfast on Sunday of like bagels, avocado, feta and tomato and stuff. So I can't really complain. But you know, stuff like I remember when she was in year one, there was a Mother's Day afternoon tea.

And so I walked in and I was sort of limping in and she basically grabbed a chair from behind the tables and sat it fair square in the middle with everyone there.  And she sat me down and she went  and got me an orange juice and I drank that.

And then she went and got me a plate of food because I'm like, I can't, I'm crap at a cocktail party because of course I can't hold a glass and eat food at the same time. So, you know, she used to basically hold that plate while I was finishing it off, and I felt so self-conscious at the time, but for her it was just normal. She was looking after me. I always worried that my kids would grow up saying that didn't have a childhood, but, because they had to look after me. But what I have learned is that my children are so amazingly empathetic and caring and understanding.

And I, you know, even though I think I still do think that I know that we live sort of better lives. But, you know, I’ll say get onto an escalator and they surround me so that they make sure that they're padding for me.

I'm not quite sure what would actually happen if I fell because I'm way bigger than they are.  But, you know, they have to put me first and that really saddens me because it shouldn't be that way.

I managed a software company pre-stroke and I used to go to New Zealand, once a month for a week at a time, for 18 months. So, it was, it was massive. It was intense work, but I loved it. I lived for my work and my family basically plodded alongside me.

I tried to go back to my old job, but I found that like, so even though, you know, my left side didn't work, but I still felt I was the same. But they sort of still expected me to be the same person that I was, and I really wasn't. So I had to, I had to give that up. And luckily, I had a friend who wanted me to do some consulting work, and he was really good in, like I did processes and procedures and so he sort of allowed me to come back, you know, in my own time.

So I sort of learned to do an hour a day up to 20 hours a week. But even then, that's still like, if I learned new things, I would be absolutely smashed that night. The fatigue again, the sensory overload, when there were lots of people in the room, I would have to put earplugs in to make sure that because if there was too much loud noise, I would feel like I was going to vomit. Just my brain was really crazy. So, I, you know, I worked there for a while and then did another customer where I helped build their software.

And probably two years ago, I found myself out of work. And, wow, that hit me hard. I think, you know, my identity was my work. And suddenly, I didn't have that anymore. And I was probably a couple of months basically in this massive depression hole, which I did actually get told that part of the stroke, whenever you have, when you have a stroke, part of the brain that's damaged, causes a stroke, causes sorry, causes depression and also you get depression from having a stroke. So it's kind of like a double whammy. And if you've got, you know, mental health issues before, well, you know, it's a lot of fun.

But basically, you know I felt like I was one of those old iPhones so that basically I still looked exactly the same apart from my left side. But my battery died basically in half the time and no one saw that.

And I think what I didn't really understand was that, you know, I got told I had a stroke, but stroke is a brain injury. And so your brain is injured and it will never be the same again, and I don't think I really sort of contemplated that or really understood that until sort, you know, a couple of years ago. So I then had that, identity issue of who might post-stroke like, you know, I can't do the stuff that I could do. I still remember all of that stuff. So why can't I be that, which obviously I tried.

But what one thing that, there are many things that you know in reflection are really, you know, have been an advantage, or have been a good part of having the stroke. But you have a lot of time for reflection, you have a lot of time for hindsight, kind of going, OK, well, this is how I live my life before, and I don't want to do that anymore, but I want to take still the good bits. And I worked out that I wanted to be a better person and be a better partner and a better mother.

And you know, and so I have a lot of time for doing that when your body and brain isn't cooperating. We still have a lot of fun. So we've managed to make me a modern knee board so I can still ride the knee board behind a boat.

I can still jet ski even though I can't use the brake. But you know, you just sort of accelerate and then let go and hope for the best. And I can, and I can’t ride on, use the ride on lawn mower with the steering knob. That's a bit of fun as well.

Looking back at my hospital and rehab experience, I must say that I was pretty lucky. So whilst in rehab, while they were experienced with just the elderly, she did really work on the fact of my quality.

So she basically ditched my quad stick when I first got there and wouldn’t let me walk outside of the room without her, even though I did so I got told off a lot. And, you know, and the other, and when I went to other rehabs, they were fantastic and they saw me, they used the experience and knowledge that they had based on sort of what I wanted to do and where I wanted to get to.

I think the best, my best therapists have, the best common I love is this, ‘You know, how about we try this?’ and you know, and I've always wanted to get ready to give it a crack.

You know, we even tried to get me walking in stilettos, which because I only wore those before the stoke. I failed dismally. But, you know, they at least sort of tried it and so they did stuff, they did therapy based on things that I used to love, you know, and that's what kept me sort of positive and keep on trying.

And I had Botox in my forearm and wrist and so I’ve actually cast it right back, which again, I feel pain. So it really, really hurt. But because the stroke damaged my sensory, pre-motor and motor cortex to my left hand and fingers, so the next best thing is basically to make sure that the tendons are lengthened so that they don't sort of end up in a disgustingly tight fist.

I keep on going with my therapy, you know, mostly because, you know, I'll keep going. I know that I'm still progressing. Even when I feel really crappy. I know I can look back, you know, a couple of weeks and kind of go, ‘Actually, yeah, you know, I'm still progressing.’ And so I reckon, I'll still keep going until probably I'm too old to do it because I think I've worked out that even though first up, I kind of thought, ‘Ok, you know, I just need to do therapy for a couple of years and then I'll be back to normal.’ But it's a journey, as we call it and then in the Young Stroke Project, it's a stroke journey and it's one step in front of the other.

And it's sometimes it's hard and frustrating and really, really depressing. But you know, it's by having things to do with other stroke survivors, be able to advocate for yourself. You know, I probably would say that my stroke journey has been a pretty positive experience.

And yeah, I've been lucky enough to have those therapists with me along the way. So yeah, that's me, really.