64/365 – Family reflections

This weekend I headed back up to Edinburgh to celebrate my dad’s 70th birthday. It was the first time I had seen some of my family since Christmas and so there was lots of catching up to do.

I got to spend time with my big cousin and her husband, which rarely happens outside of Christmas. We ended up my brother and I, my cousin and her hubby nursing a cocktail in one of Edinburgh’s fancy hotels. While we were sipping the delicious creations, my cousin’s husband raised the fact that my eyes were looking a lot better since when I had seen him last at Christmas. He mentioned that for the first time since my diagnosis they had looked normal but he hadn’t known whether to say or not. 

I’m sure this is an experience that most people with myasthenia have regularly. The fluctuation is difficult to understand for people who care and just want to see you looking healthy again. I could have explained that the next morning they probably won’t look normal again because of the late night and the cocktail. But he got to see that for himself. 

So how did I respond? I said I really don’t mind talking about it, which I don’t, and that he never needs to feel like he can’t comment. A contradiction from the above? I don’t believe so. I think it’s more dangerous for people to feel that they can’t speak about it with me, because then it might feel like I can’t speak about how I’m feeling with them too. Having people who care enough to ask how you’re really doing can be the difference between feeling alone or supported. 

I also had an interesting chat with the birthday boy yesterday about his impending big day. When discussing the reasons to celebrate reaching his 70th year and being healthy enough to golf every day, he mentioned it was a lot to do with luck. While we both agreed that it had a bit to do with luck, the fact that I only remember him drinking a handful of times when I was growing up, having an active job when he was young, that he’s never smoked, that he has always been incredibly active and was a war baby brought up on healthy small portions all contribute to his longevity. As one of my friends said, he’ll probably outlast us all. 

I think the luck comment has more to do with my MG and my brother’s diabetes, but we were brought up in different times. I don’t think my dad will ever stop blaming himself for our conditions and that is a real shame. The things that he has introduced into my life – particularly the love of exercise, the mental strength attached to that love, and the outdoors – have actually made it a lot easier for me to cope with the MG diagnosis. For that, along with the fact that he’s one of the most unique, hilarious and caring people in my life, I will be forever grateful. 



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