Stroke survivor Lisa standing on a balcony and smiling

'I bent down to pick up a toy. As I got up, everything started spinning and I collapsed on my kid's bedroom floor.'

In December 2000, just before her 28th birthday, dance teacher and childminder, Lisa Ogun, 49, was running an after-school club at home, when she had a stroke. Rushed to hospital, Lisa spent the next nine days in intensive care.

'I asked a nurse if I could quickly leave the hospital to check on my kids who had a dance show,' recalls Lisa. 'She said, 'Don't be silly, dear, you've had a stroke'. That was the first time I knew what had happened to me. I was devastated. I didn't really know what a stroke was - I thought they only happened to older people.'

Lisa's stroke was partly due to an atrial septal defect (ASD), a 'hole in the heart'. A year later, she had keyhole surgery to close the hole.

The stroke sent shockwaves through her life. 'Before my stroke, I was a dynamo,' says Lisa. 'I was a choreographer, dancer, childminder, community representative and mother of two.

'Stroke left me with dystonia, a relative of Parkinson's disease, which causes muscle spasms and contractions in my left foot and arm. I can't walk without shoes or a splint. As soon as I get up, I go into spasm, so I start every day in pain.'

Lisa also gets 'spasm storms', which can last for weeks or even months. 'The pain cuts through your sleep and your day. Meanwhile, you're still trying to live a life, work, be a mother, a friend, a lover. But the storm always eases. There's an end date - that's what gets me through.

'Since the stroke, I've had to find alternative ways of living. I lost my short term memory. We lived in a rainbow-coloured world for a long time because I wrote reminders for everything on Post-Its. Then an occupational therapist gave me a big day-to-a-page diary, so I started journaling and writing things down. I still do - it helps me with my memory.

'Stroke took away my ability to be a choreographer and a dancer, because my body wouldn't move in the way my brain was telling it to. It broke my heart, but it hasn't taken away my passion for dancing and the arts.

'I've found other ways to express myself creatively. I still choreograph things for myself and do little routines with my daughter. I sidestepped into theatre because it's like dancing, but without the eight-count. I enjoy colouring and arts and crafts. I write too.

'I also love my balcony and gardening. You put something in the ground, you look after it, it grows. My flowers make me smile every day.

'Stroke costs me money. If I'm out and it's too painful to walk, I often have to get a taxi, which is expensive. But that won't stop me from going out and living.

'In 2017, the dystonia was so bad I couldn't move. I was really depressed. My benefits stopped because I couldn't go out to post the form. I ran out of food. I was scared I was going to lose my home. I felt so ashamed that I didn't tell anyone.

'Finally, I reached out. Before I knew it, social services had reinstated my benefits and made my house better by installing grab rails to help me on the stairs and the toilet.

'If you've had a stroke, talk about it, don't hide. Talk to someone. Find the support that you need.'

'The Stroke Association were there for me from the beginning. I read their booklets, which helped me to understand what had happened to me. They also introduced me to a stroke group in Hackney. It was really nice to talk to others who had been through what I'd been through. It made me feel less alone.

'Stroke cost me my relationships but it hasn't taken away my love for people. It's taken away my ability to go out when I want - now I've got to wait for a good day. But it hasn't taken away my passion to want to do more.

'For example, I wanted to give back, so I signed up to walk a marathon for the Stroke Association. I took it bit by bit over 16 days. Some days were tough, but I achieved my goal.

'Life is hard, but I'm resilient. And my brain finds ways to manage even though it's damaged. I won't lie down. My body might be a bit wonky. But it's still amazing. And inside this body, I continue to be Lisa.'

Learn more

If you or someone you know needs support, we're here help. You can also contact our Stroke Helpline on 0303 3033 100.

Stroke News magazine

This article is featured in the winter 2022 edition of our magazine, Stroke News. Subscribe to our future editions available in print, on audio CD, or via email.

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