Nicky

It's been a month since my brother Nicholas passed away. He was 37 years old.

Nicholas was born in 1982. When he was a few months old, he suffered an allergic reaction to the whooping cough vaccine. The doctors told my parents it happened to 1 in a million kids. It left him brain damaged and in need of medication to control convulsions for the rest of his life. When people asked me about him, I always said he was a 2-month old trapped in the body of an adult as he needed care for everything - from feeding to washing, to moving on a wheel chair. But the truth was that he was an adult locked in the body of an adult with no access to his own nervous system.

When you lived with him you got to discover a personality inside, with likes and dislikes like anyone else - a fully formed internal world - which seemed to get lost due to heavy medication and the frequent bouts of illness that he fought throughout his life. Pneumonia was one of them, and it was pneumonia that finally took him from us.

I've met a few people over the years who asked me, very candidly, if it would have been better for him not to have lived. As much as I believe he is now free of pain and in peace, I also know that nobody can judge and decide whether his life was good or bad. We gave him the best possible life we could - his life expectancy was 20 and he lived to his 30s - he was very loved by those around him, and he brought clarity to our lives; he taught us how to feel compassion for those different from us. Did he hate his life? We can't know for sure, but I don't think he did. I think he was strong and weathered a lot of suffering, but when he was well he was calm, peaceful, and he could even laugh - and he definitely saved a smile for those he really liked (or for his favourite meals, from McDonalds!) He lived in his own world but he fully understood ours too.

One of the main reasons for my return to Brasil was to relieve my brother Martin from Nicholas' and my mom's care (she has Alzheimer's). But Nicky left us 10 days before my flight and suddenly everything changed. I'm now here with my mom, as her new carer, settling into this new stage of my life, but with some free time which I didn't think I was going to have. I was prepared to spend all my time caring for them both while Martin took a long break then returned to teaching. In the meantime, we would also look for buyers for our guesthouse, so we could then use the money for caring for them. As that's now changed, there isn't pressure anymore to sell the guesthouse and, in fact, it's now possible for us to reopen it.

I said goodbye to 18 years of life in London, and 20 years together with my (now ex) boyfriend. I said goodbye to old friends. Now I'm here in Brasil, slowly settling in, taking each day as it comes, appreciative of not needing to hurry, appreciative that there's so much I can help with here, but also of what I can do for myself.

Where I sit in the living room I can see photos of Nicholas on our mantel piece. We have donated his clothes and soon we'll repaint his bedroom so that it can become my own. I think of him every day.