I found it even more interesting after my recent blog entry about the true differences between people with TN and how well their TN is managed. I did that exercise, within a TN support group, asking people to give me one word that describes their TN and then to tell me how well they consider their pan to be managed and with what. I did it in such a way that individuals knew I was writing a blog entry and that I would put some of the responses on a new TN Awareness Picture/Post. I was also prepared for my questions to stir up some emotion, because I was asking for information that might make people feel even more isolated or less alone. So, when I saw this question, I already knew that there would be a variety of responses and mixed emotional reactions, but sadly, I'm not sure the person who asked the question was prepared.
I believe, if we are prepared to dig around in the mind and the emotions of someone with TN we have to be aware of what might come next. It is an irresponsible exercise if we won't then accept how people respond. First, people might not be in the same mindset as the person asking the question, they might be in a place that is very dark, very painful and very different. Others might play along, but reach the end and realise that who they are isn't good enough, it isn't who they want to be or, it could be so heartbreaking to compare the changes from who they were to who they are now. I felt, that this exercise might be positive for some, but might lead others to an even darker, lonelier place.
If we ask a question, we shouldn't have an expectation of the answers we want, we should be prepared (at the very least) for some people to express their true feelings and for those feelings to vary. If you read some of the responses and think someone is 'wrong' or 'negative' then you aren't listening and should never have asked the question in the first place. As my last blog entry proved, nobody is the same, pain is not always managed and life is different for everyone.
I refrained from joining in, though I did the exercise in my mind. For me it stirred up a very sad and isolating reality, full of pain and completely devoid of joy. What made me even more depressed was that I knew my response wouldn't have been acceptable to the person who was asking the question. All I can say is please don't ask a question if you aren't prepared for honest answers and if you don't like someone's truth, keep your thoughts to yourself. Someone else's world might not be a place that you can even imagine and obviously haven't been to.
Image by Nikki Samuel
