reddutch

My cousin was born with a genetic condition called Neurofibromatosis and he had Type 2. He's five years younger than me and struggled throughout his life to cope with his condition. He was blind in one eye at about 13, developed curvature of the spine at around 16, deaf in one ear by 18. This was all alongside developing tumours all over his body. He had countless operations to remove them, but some of them were tricky.

When he was 19, just after he finished his first year of uni, he collapsed and stopped breathing. They rushed him to hospital, performed an emergency tracheotomy, scanned him and found 3 brain tumours. They operated, but it went wrong. They damaged the part of his brain that controls the entire left side of his body. He woke up paralysed down that side of his body and told he had 3 months to live because of the other two tumours which they didn't attempt to operate on. Oh, and because of the tracheotomy, he couldn't speak or eat or drink. This was in August 2009.

He had always been a fighter and was desperate to still experience as much of life as he could. I spent the next year visiting him in hospital and helping him speak and drink again. Finally, in June 2010, he was allowed home.

Gradually, he started to improve and I then started taking him out in his wheelchair every weekend. We went to the cinema, we went drinking, we went greyhound racing, we went for fancy meals. He was happy again and started to become more of his old self, before he was left paralysed.

Whilst mentally he improved, physically he got worse. He lost more and more muscle mass and mobility in his right side, eventually he could only move his head. His meds were as high as they could be because he was in so much pain, his body started shutting down.

He went to the FA Cup Final on 5th May and had an absolute blast meeting celebrities, watching the football and having a wonderful day with his Dad and little brother. The next morning, they couldn't wake him. The doctor was called and managed to rouse him. He told my cousin that he needed to go to hospital or he would die.

At the age of 22, my cousin made the decision to end his life. My aunt and uncle tried to convince him, but he was always a stubborn bastard and he was resolute.

He died on Monday the 7th of May and the biggest comfort I had through the pain of losing him was that he wasn't in pain any more and I didn't have to watch him deteriorate any more. As someone who has watched a loved one suffer through a horrible illness and not being able to help, the greatest comfort was that he ended it on his terms. He regained that control.

My advice? End it on your terms. You might get lucky, you might not but at least it will be yours. You can't control the disease you have, but you can control how it is treated.

TL;DR: Watching someone you love who is terminally ill deteriorate is awful. Take control of your disease. It's YOUR disease and YOUR life.

Edit: Dates were off by a couple of days

I've avoided talking about it with anyone since the funeral 3 weeks ago... quite cathartic to say it on t'internet! I'm so sorry you're ill. I wish you strength and courage in your decision, and for the rest of your time here.