How we live together: The couple living with locked-in syndrome | Life and style

Kati van der Hoeven, 45
I was 21 when I had a stroke that left me with locked-in syndrome, meaning I can’t move. But that didn’t bother my husband, Henning, whom I met on a social networking site 10 years ago. We have been married for seven years. I speak with my eyes, moving them towards the letters on a board to spell out words. Henning is so used to this that he doesn’t even need the board, he just follows my eyes.

For 12 hours a day, I have assistants to help with my care, which means Henning gets to be my husband rather than my carer.

We share the same lust for life and enjoy working together, giving talks and helping to improve the lives of others with complex medical needs.

When I’m not working, we go for walks in the Finnish countryside, where we live. You wouldn’t believe the pleasure I get from feeling the sun on my face.

Henning van der Hoeven, 54
Getting to know Kati online was like a breath of fresh air. Despite her situation, she never complained, over-dramatised or felt self-pity. By the time we met in person, after eight months of chatting, her physical situation wasn’t an issue because we share the same goals.

We have carers, but in the evenings it’s just the two of us. The hardest thing to come to terms with wasn’t Kati’s needs but getting used to having strangers around the house.

Kati is a hot-headed go-getter who is ready to take on the world; I’m a level-headed realist. That’s why we make such a good team. My wife inspires me on a daily basis.

Living Underwater: by Kati van der Hoeven is published by Goldcrest.

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