Rich was constantly in pain from some of his NF2 tumours, especially the ones in his arms and legs. Often the pain was severe, and he’d have to go very quiet and just sit with the pain a little while, until it had eased off. He’d decided against taking pain killers because he knew he would have to take them all the time, and instead had taught himself to manage his response to pain. Pain had pretty much always been part of his life, and yet he lived and loved fully in spite of it. It caused me pain to seem him in pain, just like it hurt him to see me suffer, but we always put each other first, and did whatever it took to make life more bearable.

Pain too has always been a part of my life. I’m not saying this for sympathy or pity – we’ll have none of that. I just want to say it as it is. I have EDS hypermobility type, and POTS (Postural Tachycardia Syndrome), and until diagnosis had assumed that everyone felt the way I did but just didn’t talk about it, and so I shouldn’t make a fuss. When the docs discovered a small hole in my heart and told me that I had a few rare conditions, it felt like a relief to finally learn that I wasn’t just being pathetic. That my pain is real.

Which bought me to the realisation, when walking down a hill on Barra recently, as I was trying to focus on turning the pain in my legs and back into a form of moving meditation, that it’s usually left to those in pain, or who have known pain, to help others in pain. As Rich used to say of the work he did to help others living with disability, ‘if not me, who?’ He knew that he was an expert on what it’s like to live with disability and pain, and to contend with discrimination and stigma, and felt that it was his responsibility to help make things better for others, something which he did succesfully, and which he continues to do. We’d planned on setting up an organisation to help others living with rare conditions such as NF2, and that will absolutely still happen.

In the meantime, helping others who are experiencing out of order bereavement, even in small ways, helps ease the pain in my head and heart. Helping them helps me, just as helping others helped Rich contend with having a condition that he knew would mean he never reached conventional retirement age. He wanted to make a difference, and my goodness he did.


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