Let me start at the start. Always Best

I have just reviewed my blogs, and I don’t believe I have ever written about lights! I will have to check again because if I have not written about lights…crazy.

Anyway…grab a drink, put your feet up, and let me tell you about me…lights…and the man who got it in 48 hours AND….respected it.

I have always had an issue with lights, always. After I received my diagnosis of autism and ADHD and I started to reflect on my entire life, the lights thing actually gave me comfort. Made me realise that I was not mad. Just different.

My sensory issues are not just a part of me; they are me. I’ve spent a lifetime masking them, hiding them from the world.

I mask nothing now.

If you don’t like me…cool. If you find it challenging to be around me…try being in my head. Masking causes me much more harm than good, so I don’t. However, I have developed some good coping strategies, such as using noise-canceling headphones and taking regular breaks in natural light.
My sensory issues are lengthy. Smell, sounds, heights, temperature, texture…on and on. But my arch nemesis is and always be …lights.

Let me explain.
I have a list of lights I hate or like. Like a burn book of sensory issues.

My sanctuary is natural light. Place me by a big window, and you will see the best version of me. I sleep with my blinds up, yearning to be awakened by the gentle touch of natural light in the summer. It’s in natural light that I find peace and tranquility.

When I walk into a room, my first two thoughts are: How quickly can I get out of the room if I need to, and is there natural light?

My worst light is strip lighting or … its evil villain’s name….. “Buzzy Lights”.
Why, you ask?

Because I can bloody hear them like a swarm of bees in the ceiling

I can hear the lights buzzing, and if the temperature is low enough, I can usually feel the fake heat coming off them. I am aware of every tiny flicker.

When these lights are on in shops, I used to have to leave sometimes. Food in the trolley, halfway through the shop, and all of a sudden…boom… too much, and I would leave.

If these lights are in an office or classroom setting…I don’t even know where to start.
Just know this: If you have worked with me and we have sat in a place with this lighting, I can guarantee you that no matter how much I nodded and most likely took notes…70% of that meeting I was battling with the lights and was not listening to you at all.

I can’t.

It’s like the scene in Harry Potter when the dementors come and suck the happiness out of Harry.
That’s what it feels like

Like…. my life is slowly being drawn out of me and into that light. I can physically change colour and make it very white. The number of times people suddenly go, “Oh, are you okay?” as I have gone a shade of white and green.

No, Karen…do I bloody look alright? Get a bucket and a paper bag, STAT!

As a child and young person, it was worse. I now understand a lot of my behavior in classrooms and meetings like social care offices. I could not verbalise how it made me feel as I didn’t know why or what was wrong with me.  I would suddenly feel like Everything was way too bright and hot and loud, and if I did not leave, I would die.

I did not know that everyone could not hear the lights until about nine years ago. I just presumed we all could hear them, but some people did not care.

Once, I was forced to stay in a room until my mum came to get me. I had been naughty, but they could not reach her at work. It was a small room with no windows. I was in that room for 4 hours, the clock ticking each second like it was booming in my head. Several times, I begged the staff member to turn off the light, and they told me to stop being attention-seeking.

So, I just had to sit in this bright white room, cold, clock ticking and the lights on. 4 hours in, and I lost the plot. It was horrific what I did. They had to call an ambulance. I had to see an educational psychologist for years after that.

I was seven years of age.

The light thing also explains why I used to have “panic attacks.” They were not panic attacks at all. They were sensory meltdowns and intense reactions to sensory overload. I actually remember the nurse talking to me about my panic attacks and me saying…no…I don’t feel like that. Panic attacks never felt like the right way to explain what I was going through…because I was not.

I used to wear sunglasses everywhere, especially in stressful situations, but this was not always appropriate.
I remember wearing sunglasses to my sons’ parents’ evening in primary school. It was in the actual evening. There was no sun. But I felt so strange that I just had to wear sunglasses in the hall…with the big strip light. I still remember the looks from other parents who already thought I was strange, which I was. Am.

People do think I am strange. No one has the bottle to say it, but I know. Don’t think I don’t know. I do. But what can I do? I didn’t choose to be this way. I wish my stuff didn’t impact other people, but it does.

Starting a new job was a daunting prospect. The night before, I was on the verge of being sick with anxiety.
I was not worried about meeting new people; that didn’t phase me. I was not even that worried about the job,

My number one worry that had me up at 4 am, breathing fast and hugging my knees on my bed, saying to myself not to cry.

What if they make me sit in an office with the lights?

I was in my previous job for three years. Everyone is fully aware of the light situation, as I can become obsessive about it.
Never…and let me repeat…never was a light turned off to accommodate me. I worked from home a lot of the time, and when I went to see the CEO, the lights were off in her office because she hated lights as well.

But nowhere else.

I remember turning the lights off in an office with two other staff members and explaining why. A few minutes later, one of them got up, turned the lights back on, and just sat down and started working.
I wanted to cry, but instead, I went and sat alone in a back office. Sometimes, I feel I am better off hiding away.

Anyway

I may have had a little meltdown the first few days at my new job. I had to process so much change and so many new things, and I found it extremely overwhelming. I also discovered that I can no longer mask at the level I used to. Like…the mask no longer fits. That has been a lot for me, acknowledging that I am different now. I can’t just pretend the way I used to. I’m glad, but it was still a lot to realise and deal with. Like realising I am the weird kid at school all along.

My manager has been outstanding. I don’t think reads my blogs, but she has honestly been amazing. I explained how I was, but I also explained about the lights. They agreed that even though offices are not usually allocated, it would be beneficial for me to be in one place so that if I want to turn off the lights, I can not bother other people.

Another staff member was (and is) using that space. People are creatures of habit, and so he likes to sit in that room. And that’s cool; we get on.

So, the first day I went in, he offered to leave. He understood the space was being given to me for a reason…, but he didn’t know the reason.

So… I told him. We spent hours talking that day, and we spoke about my sensory issues. He said he could relate, and we went back and forth. We had spoken before  (and no doubt he could pick up on the strangeness), but now we both had some context. I said the light being on was fine (it was not), but I didn’t want him to feel like he had to leave.

I came in the next day, said hello to people, and went into “my” office, where he was working. He said good morning and started chatting about something we had been looking at, and as I sat down, he stood up…

Walked to the light.

Turned it off so it was just the natural window light.

and just sat back down!

And he carried on talking and getting something up on his screen.

I swear down, my mouth was open. I was mid-plugging my laptop in when I just stopped. He was chattering away like nothing happened … and I stopped him mid-sentence and spoke.

“What are you doing?”

He looked confused and spoke.

“Showing you the document,” nodding his head to his laptop.

I took a breath and spoke.
“No, the lights.”

He looked at me, scrunched up his face like I was mental, and said…..Are you ready….

“Because you need the light off”.

As I type this, I have to force back tears—just as I did when he said it that day.

Oh, I said, hoping he would not pick up on the break in my voice, rushing to turn to my laptop, making myself busy so he would not clock the emotions.

“Yeah,” he said, “Everything you said got me thinking about how hard it must be for you. I’ve been here this morning, hearing all the noises that bother you. I can’t hear the lights, but I can hear all the other stuff, like people talking and banging and stuff.”

I nodded and pretended to be finding something profound in my bag so I could compose myself.

He then pulled a fiddle toy out of his bag and said, “Yea, I use this in meetings. It’s the best thing my wife ever got me.”

And I smiled and said me too.

We don’t always have the light off if we are both there now. Sometimes, it’s early, and it’s too dark for natural light. But when the light is okay, one of us turns the light off.
An act of kindness and empathy for absolutely no gain on his part. I shake my head as I type that, as it is still something alien to me.

And it has made me look at myself differently…because…Maybe I am not always the problem.
Anyway, I doubt he reads my blogs either, but I can’t leave you all thinking he is some neurodiversity superhero…no.

He told me to close my eyes when driving over a bride because I can’t do heights! Yup. And he laughs at me because I refuse to reverse to let the tractor go by me. Why should I always move anyway !!! (Side note….I don’t think a tractor can reverse….but still)

“Because you need the light off” will be one of those moments that will stick with me forever.
Maybe we should all do one thing each day that just helps someone else, not us, to make the day easier. (Except tractor drivers!!)