My life with LHON

I was wondering how to best explain what does living with LHON really means. I thought that maybe I could go back to when I was a 15-year-old high school student and how I got used to live with my blindness.

Written by RareConnect team, published 30 days ago.

I was wondering that maybe it could be interesting to explain the way we DO NOT see, to talk about the blurry spot, like a TV with bad signal. Then I asked myself if it was really worthy to describe the fact that the peripheral vision is not so affected. Finally, I came to the conclusion that an anecdote would have been the best way to explain my life with blindness.

Sometimes, you find yourself in a situation where someone you know pretty well comes out with some weird – though well-meaning- sentences like “I admire your perseverance” or “hey, what happened to your eyes is a real disaster”. And every time you think if it is worth the effort to explain everything in detail: that it does not depend on the eyes, but it is a neuropathy.

However, most of the time you just give up, since you would need much more time to give all the details.

Sometimes, if you make important reflections, you can run the risk to sound like you were sermonizing. And in my case it would sound pretty ironic, since I always needed God’s help in order to get to school on time – and not really “due to my eyes problem”. Avoiding the question is also not an option. It is rather better to inform the people around you on what blindness implies, if for no other reason of being able to deal in the simplest way with a situation that deserves to be considered completely normal.

Both the questions and the answers are indeed “good”, so there is no need to pass them over. It is rather the contrary which can be a trauma, that is to say when someone is not able to find the words to describe an experience. However, I am pretty sure that none knows textbook answers to give to a curious and well-meaning friend. Since I have been living with blindness for years now, I would dare to give a suggestion that it can apply to everything: sense of humor.

The joke blurs things, it is subversive and, above all, it makes you laugh. I don’t mean the harsh jokes neither to burst out in laughter just to avoid awkward situations. However, it is always worth to take the drama out, to demystify and, above all, to be able to live with the best mood ever every moment, from our routine to the different situations which can influence our life. And that’s it, otherwise I start sermonizing!

-A 23-year-old man affected by LHON