Talking about my CMMRD (constitutional mismatch repair deficiency – a rare type of Lynch syndrome that greatly increases cancer risk) on the Wisdom app yesterday made me feel like I was finding out about it all over again. Actually, no – it feels like I am finding out about it for the first time because that part of having Lynch Syndrome is something I have never properly addressed and have always tried to ignore.
I feel like it’s amazing that I even manage to hold anything together – my mental state, my job, never mind going above and beyond into my studies.
And yet, for someone living under the threat of CMMRD, my life feels too ordinary. Shouldn’t there be something wonderful I am doing or that should happen to me to tip the balance, to even things out so I have stunningly bad matched with alarmingly good? Not to put pressure on myself, but I wonder – when living with Lynch syndrome, am I living the best life I could?
I’m partly thinking about bucket list things and life events, because who knows when I won’t be able to do things anymore? But I am also thinking about living with a certain state of mind – a freer mind, not bogged down with societal norms, concerns about what other people think, getting tied down by routine or even the concept of time. I don’t know if I’m living in the way I want to live as a person with a rare condition.
I still don’t even feel like I am a person with a rare condition.
But I am, and how does that change things? How should it change things?
Of course, there’s nothing wrong with having an ordinary life, and if people were treating me like I wasn’t a normal person, that wouldn’t be cool. But balancing the medical world with a normal life is hard, which I have been thinking about for a while now.
I guess my epiphany is: I am not a normal person living under normal circumstances, so why should I try to be like one?
I just don’t know what the alternative quite looks like, beyond some combination of spontaneity, focusing on the life perspective my experiences have given me, and embracing my weirdness.