The AGM experience

This was my first LightAware AGM weekend and I was so looking forward to it.

I’ve been working for LightAware for almost a year and in that time I have learnt a lot about the struggles people endure and challenges they face in order to live their lives. But nothing quite compares to spending a good chunk of quality time with sufferers who are light sensitive or light disabled.

Because the LightAware team are scattered throughout the UK we all meet on Zoom and conduct our meetings with the video off for the sake of those who can’t tolerate screens.  

As a result, I had not met any of the team, other than John, in person and had no idea what people looked like. Were they tall, short, dark haired or grey? I had no idea, and I was excited to meet everyone. 

I knew that sharing a cottage with my light-sensitive colleagues would mean the rest of us being careful about lighting but the reality was illuminating.  We had a whole load of blue tack, incandescent light bulbs and some candles with us and the whole house needed prepped.

The bluetack was to cover all the LED lights that peppered the house on every appliance imaginable. The kitchen was the most obvious with LED’s on the microwave, dishwasher, cooker, and the fridge had a glaring LED that brightly lit the room every time it was opened.  But there were others, the smoke alarms (tricky when you have old fashioned high ceilings and no step ladder available), a video player, television and the broadband hub. Our appliances are now almost all digitally controlled and have on/off lights, warning lights, progress lights – all LEDs. It is so easy not to notice when you can tolerate them. 

Once that was done the lightbulbs were all changed and the CFLs and LEDs carefully put away until the end of our stay when they could be reinstated.  The reality though was that two of our core team? can only tolerate very low wattage, even with incandescents,  because of Lupus, so once they arrived and the sun went down we were in candlelight. 

I felt a little anxious about ‘accidentally’ turning on a light (this almost happened one evening whilst entering my bedroom!) Something which is such a normal thing for me to do was potentially painful for others.  

We had two candles between us, because we had forgotten to bring a stock of them, lighting the living room with one and the kitchen with the other. Going to the bathroom upstairs meant feeling your way up the bannister and using the moonlight from the bathroom window. Fortunately it wasn’t overlooked by any other dwellings and we had moonlit evenings! 

The cottage suited it. Bult in the 18th century, you could imagine the farmer and his family sitting by the fireside. His wife at her needlework, peering at her work in the candle light.  But this is 2023 and I wasn’t used to the half light.    

So, this is light-sensitivity! Once the sun goes down, it’s dark! Without incandescent light bulbs there are currently no safe lighting alternatives.   Everytime you go out of your own home environment you have to check the suitability of the accommodation you are staying in and it doesn’t stop there. Are there street lights? Does the pub in the village have a beer garden outside?  What kind of lighting does the supermarket have? Is it safe to sit down for a cup of tea in the cafe? 

Getting there can be a problem too. What is the lighting going to be like at the station and on the train or the bus?   The small LED lights in cars on the dashboard need addressing if getting a lift with someone, not to mention only being able to travel during daylight hours due to car headlights! The advent of daytime running lights makes this even more difficult.

These are all questions that came up over the few days we were all together. It affects so much of life. 

I am grateful for the experience and hope my understanding of the issues around light-sensitivity are better for it.

by Fiona Thomson
Blogs are written by LightAware supporters in a personal capacity.

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