Home About Book  Resources Blog Contact 

It’s All In My Head

Facebook Page

PayPal: Donate
PayPal Logo

For any donations…

My story continuing at:


Eyes And Lights

4th  March 2018   

I often go to pub/club gigs with Dave when he is playing guitar in his bands. I have been somewhere almost every week since a few weeks after my operation and never really had any problems, although sometime I cannot sit too close as the music feels too loud for my head.

Last night he was at a new venue and all seemed good; the pub seemed nice, there was a reasonable stage, a table and stools set up just to the side of the band - so I can see and be seen and won’t be in front on the speakers. All was OK until the band started playing.

They turned the main lights down, and turned the band ones on… and “Oh shit they have flickering and flashing lights…”

I am seeing that moving image like lots of joined together stills from old films. Like having a brain tumour. “Oh fuck, I’ve got to go. I feel I need to hold my hands out to balance myself and want to shut my eyes to stop it, but the lights still flash through my eyelids. I feel dizzy and slightly sick. I am terrified that I might have an epileptic fit or something as this feels so wrong. And my mind goes into overdrive with thoughts of my driving licence being removed again, the band having to stop if I don’t get out of here – as if I have a problem Dave will have to stop playing, how will we get home…”

I all but run to the bar and ask the staff if they can turn the flickering off on the lights (there were 4 strobe/flickering lights on each corner of this part of the bar, as well as a strip of slow colour changing lights aimed at the band) “No- they ‘have’ to have the lights on when bands are playing and they have no way to change them.” … oh OK!

So I blindingly walk to the other end of the pub, away from the lights (and the band) to sit down, and try to calm down from the fear and anger rising inside. I sit alone at the bar with my glass of water for a few minutes. A disabled man in a wheelchair asks me could I please move my barstool over a bit so he can get to the bar. I move over and realise he is not being seen, so get the bar staff’s attention as they didn’t see him. He thanks me and offers to buy me a drink. “No, its fine thank you, I am only drinking tap water and it’s free! He is being polite, but I don’t really feel like sitting alone in a pub for the next 2 hours…

I sit here trying to understand it and think what I can do… I have been to gigs almost each week since I had surgery. Only one club had lights that the audience couldn’t get away from, but when I asked the sound engineer could they turn the strobe lights off as I’d just had brain surgery, he did so instantly!  This was at a small club in Brixton, yet this is a big pub, part of a big chain and they cannot help! What would they do if someone had epilepsy? Would they have to go home? I don’t want to complain any more as I don’t want the band not to get paid or cause them problems because of me, but I am so disgusted with it. I wonder could I get sunglasses from the car, but Dave parked the car by himself after we had unloaded while I waited in the pub, and so I have no idea even where it is, and he is playing so I can’t ask him, plus he has the keys –at the front within the flashing lights! Then as more people come into the pub I realise being by the bar is not a good spot as it’s too busy and I am just getting people pushing into me, and I don’t like people being near the back of my head- plus I can’t even see the band. So I move the bar stool to another tabled area, nearer the door.

It’s cold sitting here, my coat is up the front of the pub in the flickering lights so I can’t get it. I start to shake, partly with cold, partly as I feel a little vulnerable sitting here alone. At this point a rather tall man offers to buy me a drink- with no strings attached! Again I say no thanks, the water is free. But he keeps chatting, which is actually quite a lot better than sitting here by myself surrounded by drunk men. I tell him I am with the band, my husband is playing, but I cannot sit there as I cannot manage the flashing lights due to brain surgery. It is offloading my anger and fear onto someone else. I say I am worried I will have a fit if I stay near the lights- and if I do please let my husband know!

After 20 minutes or so, I am cold and also want to try and say to Dave that I am OK. (I had just disappeared when the lights started, pointing to my eyes and the lights) and as I walk back nearer I realise the flashing lights have stopped! I assume the bar staff must have asked the manager or something and he turned them off? But I still don’t want to go too close to the other lights as my eyes, head and balance all feel a little delicate, so I stay at the back of the band area leaning against a wall. After the first set I tell Dave where I am, the reason why and what the bar staff had said, and that I am somewhat relieved the flickering lights are off. I didn’t think to get my coat or keys as now the lights are off I can stay where I am.

Then as the second set starts, so do the bloody lights! Oh bollocks. I can’t deal with this again and end up at the back of the band area and lights, between a wall and the fruit machines, which means both sides are somewhat shielding the flashing from directly hitting my eyes. But even with this my eyes still ache, as does the back of my head and I feel like it’s draining my energy.

I chat to the same guy who was talking to me earlier, a couple standing next to me and one of Dave’s friends when he walks over, but I am so relieved when the band stop playing and hopefully these damn lights will stop. But they don’t! The music on the jukebox just keeps playing instead. After 10 minutes or so I tell Dave I need to go home, so he agrees he will start to pack up. He tells me to shield my eyes and try and sit next to the stage facing away from the lights. I manage a few minutes but I can’t take it. I am sitting here facing the wall, with my eyes all but shut and feeling in a drunken haze. I hate it. It’s like waking after brain surgery when you can’t open your eyes without spinning insanely. I want to go home. I need to go home. Now.

I again try and ask the bar staff if they could turn the flashing lights off for 5 minutes while we pack up. No he can’t. I stay there and say “Please, I cannot see and I need to pack up and go home.” He opens the lighting box and turns the flicker speed down a little. It helps. Just. But by then my eyes and head have had enough. I walk out the side door and stand outside in the cold trying to get rid of the flickering in front of my eyes. I’m too exhausted to cry.

We get the car, and end up having to drive around half of Woking as there are road works and roads shut everywhere – with no sat nav working. I feel awful and it’s hard to concentrate. The traffic lights seem too bright and glary. Then they have traffic cones shutting the road we want to go down to collect the equipment. I just want to run the fucking things over- I’ve had enough now! But Dave gets out and moves one cone and I drive in, while he explains to the security staff there that we need to collect our things from the pub.  So I now end up sitting outside the pub as he brings out the items, once again chilling out listening to Muse and trying to get my senses back to normal.

I didn’t get into bed until 2.42 that night, I needed 2 hot packs as I was shaking from the cold and the stress of it all.

I don’t know if I am more angry, (What would the pub have done if someone had photosensitive epilepsy? Would they have turned the lights off or risked letting them have a fit?), upset (That yet another side effect conditions my life), cold (from sitting by the door and then outside for so long), stressed (from being scared I might have a fit while alone) or just emotional to it all. Whatever it is I cry myself to sleep, my eyes still seeing flashes. That wasn’t a fun night…

Next - “ Hands and Tears”

Edited to add:

After writing this I contacted the Facebook page of the pub chain and was told someone would contact me back after talking to the venue.  Someone emailed my back apologising that the staff didn’t understand why I wanted the lights off, nor the fact that I only wanted the strobe lights off and not all of them. They added they will also be putting up a sign saying there are strobe lights on the front doors and that if I go back then I can request to the staff to turn the strobe lights off.

I hope this helps others in the future too x