I think this is probably one of the most difficult things to explain. Often when I comment on how the light hurts my eyes or how something feels horrible – like clothes made of certain fabrics – people just agree and say it’s annoying. Now, either annoying has a different meaning than I believe it to have or people often don’t understand what I am trying to say. It’s not annoying, it’s enough to have me crying in a corner, shaking like crazy, for hours. It’s not annoying, it’s hell.
I wish I could let others experience what I hear, see, feel, smell and taste just for a few hours. I would give almost anything to share this with the people I care about, because explaining is so very difficult. Nonetheless, I want to try one more time, here on this blog. The next couple of weeks I’ll write one post on one of the senses; Sight, Touch, Taste, Smell and Hearing.
You might be surprised by this, but what really makes it difficult to explain is that I have no idea what the neurotypical experience is like.
I just can’t imagine what life must be like when if you can sit in a crowded café and focus on a conversation with someone else while some barista is steaming milk, sunlight shines on reflecting surfaces around you, the voices of other people intrudes in your head and the chair you sit on is uncomfortable, but not as uncomfortable as the height of the table, which happens to be dirty because someone spilled sugar a few hours ago and the sugar has somehow fused with the surface of the table, making it sticky and the person you are with keep placing their cup on the sticky spot thereby transferring the stickiness to their own cup.
There can be a billion other distractions, and yet, neurotypicals can practically stay focused on their conversation through all of it. It’s so cool and strange at the same time. I do wonder, sometimes and often while having a conversation in a public place, if the person I talk to would even flinch if a car drove through the window and the glass scattered like rain around us. I honestly think some people would be able to carry on talking like nothing happened, whereas I’d want hide under the nearest table, if any were still standing – even knowing how gross the floor often is!
I know, I know. In that specific case they probably would notice that something had happened. Honestly, sometimes I’m in some place or situation where it is extremely noisy or bright or something and I feel exactly like that just happened. In those situations, the neurotypicals I talked to were just standing there, staring at me with a stone-faced expression clearly expecting something. So, I say whatever comes into my head first and while I say it, I know it was the wrong thing to do. Most of the time, it really is.
It’s like no matter how many times I tell others that the sunlight is so bright I can’t focus on anything else, people still expect me to just do better and listen. They understand it’s bright and all, but they don’t understand how much it affects me. Why? Well, obviously because they can’t imagine it being a big problem. It’s just a bit of light, right?
When I was first diagnosed, and I started opening up about these things, I got upset all the time. I was never upset with other people though, I was always only upset with me. I was angry that I had lived 30 years on this stupid planet and never been brave enough to tell someone, if we were outside on a bright summer day, that I needed my sunglasses before I could even try to listen to what they were saying. Instead, I would just sit in pain and pretend to listen to what people were saying, hoping that, when it became my turn to say something, I would be able to make something up that they would accept.
I was angry that I went out to noisy places with lots of people, even though I felt sick to my stomach and had to pretend to go outside to smoke, just to get away for brief intervals or hide a meltdown. I should have just put on my sunglasses, and I should have gone home when I wanted to go home. But I couldn’t. I was too scared to do anything but worry about whether or not others would think I was a freak or hate me, or even worse, if they would be mean to me again.
A psychologist once asked me why I wanted to spend time with people I didn’t like, or I was afraid of, and I thought he was silly. If I were to avoid people I didn’t like or all the people I was afraid of I would be alone. No one wants to be all alone, right? Well, don’t get me wrong, I don’t dislike everyone. I am not afraid of others either. I just didn’t know how to express my feelings back then. I was not afraid of anyone, I was afraid of all social interaction. I did dislike quite a few of the people I used to talk to, but I thought they disliked me too, and that that was just how friendships were supposed to be.
Today, I feel silly. Maybe it was because of my burnout, but something changed inside of me. I couldn’t live the way I used to. Someone once told me, that if an animal isn’t thriving in its environment, then you don’t change the animal – you change the environment.
I had lived three decades trying to change myself when I finally understood that there are some things you can’t change. I am not saying to never change oneself, but sometimes that’s not the right choice.
I know I have to make compromises if I want to be a part of this world. I am okay with that. But, and this is an important but, I also need to accept me as myself. I can’t change the way I experience the world and I never wanted to.
I know my hypersensitivity can be annoying (especially when I take a public train on a Friday night), but they are also a gift. I love the smell of rain, it is unlike anything else – clean and fresh and cold. In fact, I love everything about rain – the feeling, the sound and how it makes everything sparkle like a starry night. Snow is the same. The sound of snow is so soft and dreamlike. My world is beautiful, and I wouldn’t change it for anything.
I know others can experience the beauty of these things too, even if they don’t experience it like I do. My point is just, even though I am going to talk about the challenges that come with hypersensitivity, it isn’t all bad. I love the way I was born, even though it’s not always easy.
Okay, this is important. Everything I’ll share with you over the next couple of weeks are my experiences. Everyone on the spectrum don’t experience the world in the same way, even though there are similarities. Everyone is different, just like all human beings are all different. I will share both my challenges and how I have found a way to deal with them. It’ll give you and idea of what it’s like, but it won’t be the whole story. Hopefully it will be enough.
This is the first article in a series of articles related to hypersensitivity, the others are:
