Living With CBS.

Dear Monsters of Charles Bonnet Syndrome,
Since I was five years old you have intruded into my life without so much as a “by your leave”.

As soon as I lost my sight, aged four and a half, you lost not a second stepping in to the void. In those days you terrorised me with many forms. The black and the green snakes that waited at night on the landing outside my bedroom just waiting for me to open the door a crack to call for Mum or Dad to tell them I was petrified of a monster floating over my bed looking down at me. There was Flick, the round black face with the wide flat pink tongue that could slide under doors to flick me into his mouth. There was Mr Telephone Head and Mr Indicator Head and the green triangular faced monster with red eyes and black dots – to name but a few.

I kept your secret, I never told a sole about you, apart from my best mate Pete who helped at the time by turning you in to a game, but apart from him, no one ever knew, because after all, who would take a five or six year old seriously that was talking about monsters that were real in every single way and in more ways than I could explain at that age, but still you came.

I had to learn to live with you, how not to clamp my hands over my eyes, suddenly back away or turn my back on nothing as far as others could see. I had to learn how to make myself keep walking forward, head up and hands down even when you were looming straight at me. As I grew older, I learned how to supress my defensive reactions in much the same way as someone can make themselves carry a mug of tea for a limited distance in their hand even if it is actually far too hot to hold, just so long as they know where they have got to get to, and that there is a clear place to put it down when they get there.

The number of your forms decreased over the years until we were left with Mr Telephone Head, the green triangular face and the Shark that joined the party when I was about nine, but none of you missed an opportunity to intimidate me and impose yourselves in to my life.

About three years ago I read a Tweet that gave me my first inkling as to what you are and soon after that I was lucky enough to meet someone on a professional and one to one basis – in whom I trusted – and felt I could tell a little about you, but only after I had nearly smashed a 15 KG slam ball in to his face because you had risen up at me half way through an exercise and I felt I may owe him some kind of explanation. For the next few months you were particularly vile, but I think you were perhaps afraid and realised the worm was beginning to turn.

In October 2021 I had it confirmed what you are. Since then, I have been able to do the very hardest of things and tell people about you. Do you have any idea what it is like to have to tell those you love that you haven’t felt able to tell them you have been frightened out of your wits all your life, or for as long as you have known them. No, of course you haven’t. You bully and intimidate, but like bullies the world over, when you are exposed yourselves, you back off, you diminish, you begin to lose your power over your victims.

For over forty years you did your best to rule my life, but not anymore. I know who you are, and where you are. You are weak, and I am strong. In the eight months I have been talking about you, you have faded and weakened. Yes, you’re still there and sometimes have your significant moments and perhaps you always will be there to a greater or lesser degree, but now you’re mine. I own you and I’m going to tell as many people about you as I can in the hope that the more people I tell, the less people will have to live trapped in their heads with you. Not knowing what you are and fighting to turn any corner, open any door, or stand tall and walk down a narrow corridor. In short, your days are numbered. You will be understood by many. With understanding comes acceptance and ownership, and with acceptance and ownership comes freedom.