I’ve talked about this many times before, and yes, I did promise to write a post about it at some point and now I am.
This is about something I have to tell people all the time, but most of the time people don’t really seem to understand it. It’s probably because it is so very foreign to them that imagining it becomes too difficult.
Most people, I am told, are able to sense their feelings and their bodies thus making them able to, as an example, stop walking when they reach their physical limit, or when related to emotions they are perhaps able leave a conversation when they can no longer emotionally continue to be in that particular situation.
Well, I don’t.
I can only tell that I am beyond my physical limits when I am so far beyond what I can do that I am on the brink of collapse. The same goes for my emotions.
For example, I don’t get angry and know that I am getting angry at the same time. I get angry, yes, but it can be hours, weeks, months – even years, before I realise that I was angry in a previous situation. I am not even kidding, some things happened in my past many years ago, and I am still not entirely sure what my feelings were at the time – let alone what they are now.
I have often been told, and discovered myself as well, that many neurotypicals react emotionally first, then they think about it all some more and maybe even change their minds, but before anything else they feel.
I am not saying that all neurotypicals always know instinctively what feeling they are feeling at the time, but they feel it and react based on that quite a lot, even if they are not consciously aware of what they feel. However, I do believe it is quite a lot easier for them to determine what feelings they are feeling.
I often don’t understand my feelings and I have to analyse them in depth before I can say what I am feeling. My reactions are not as often based on feelings, not because I don’t feel, but because I need time to understand what I feel.
I don’t register my feelings right away like it seems neurotypicals do, I react and when I get a pause, then I start to actively observe myself to determine my feelings. What’s important to understand is that yes, the feeling is there, but it is more like a car driving somewhere in the background. I know it’s there, somewhere, but I have no idea what kind of car it is, where it is or even where it is going. Then later on, it’s like I rewind the footage and zoom in on the car and get as many facts as possible from it. It’s not something that happens on its own, I have to actively do this.
My physical body is the same, if you can believe it. I can be in pain and not really register it until the pain is too much to ignore. If we use the same analogy with pain being the car in the background, I can ignore the car until it runs me over.
I say I can ignore the car, and therefore the pain, but honestly, that’s not really the right way to say it. I just don’t know how else to describe it. You see, I don’t always notice the pain until the car runs me over. I know, if I really think about it, that the car is there somewhere in the distance, but I don’t know exactly where it is or when it’ll hit me. When it happens, it happens in an instant. It’s like suddenly the car is in front of me and then I’m dying on the ground.
I know, this is probably going to sound strange to a lot of you, but I also know that I am not the only one who has this problem. And sure, it can be a pretty big problem actually.
If people like me, like us, aren’t careful, we can end up in situations that hurt us in deeply traumatic ways simply because we don’t notice just how much we are emotionally hurting before it is too late. We can also physically harm over bodies because we don’t know when we should stop and rest.
There’s no easy way out of this either. I can’t feel things differently, because I was born this way. I think being born with autism spectrum disorder is a wonderful gift and I don’t ever want to be neurotypical. There’s nothing wrong with neurotypical, it’s just not for me. I am happy the way I am.
Of course, that means I have had to find a way to deal with this challenge.
I injured my shoulder pretty badly when I was just about 7 years old. My shoulder came out of its socket and I had to go to the hospital. Since then, my shoulder sort of fell out once in while and I had to push it back. It never came all the way out again, I think, but it came far enough out that I had to force it back and it is one of the most painful things I have ever experienced – and yes, I had to do it a lot more than once.
But, because I was very little when it started, I never questioned whether or not it was normal. It was also something I could fix myself, so I saw no reason to discuss it with adults and in time, no reason to ask my doctor about it. Still, thinking back, I can tell it got worse over the years. At the time, however, the car was still somewhere far away in the distance. One day out of nowhere, of course, it ran me over.
It was summer and my grandfather had hurt his knees, so he wasn’t able to work very much in the garden. I didn’t want him to hurt himself, and because my mother and my grandfather are exactly alike in that they never worry about themselves and always give all that they have to those around them, I was very concerned that he would push himself too far yet again. So, I simply took every heavy thing he tried to carry out of his hands and continued to spend many weekends working in his garden. He appreciated it, I know. It was the only time in my life I felt he was actually proud of me, which made me feel so happy, because people are generally never proud of me.
At the same time, my mother had moved to a new house and the garden needed fixing, just as the hedges needed trimming. I also assembled a small greenhouse, which was far more complicated than any piece of IKEA furniture I have ever seen. All in all, I simply did what needed to be done.
You know where this is going, right?
Well, before when my mother had moved to her new house, no one else in the family had bothered to help her even though she really needed it. She hurt her leg badly and wasn’t able to do much real work, so I did what I could to help out.
When we got the keys to the new house, I got a small hand trolley and moved as much as I could from the old house to the new house. Yes, on my own I walked from one house to the other and back. The house wasn’t too far and if I walked fast, I could do 4 or 6 trips every day. I usually stopped when my mother came home from work, because then we either went to the old house to continue packing up the house or we would unpack, paint the walls or whatever else needed to be done in the new house.
Needless to say, I didn’t know that my shoulder was injured. I didn’t know a shoulder wasn’t supposed to pop out once in a while. How was I supposed to know? No one ever told me and it always had.
One day, something snapped in my neck and upper back and I got a stiff neck. I mentioned it, but no one seemed to think it was anything. My mother was worried, but then again, we all get a stiff neck once in a while, right?
Then, one day after weeks of having constant pain and a stiff neck, something snapped in my back and I couldn’t move. I literally couldn’t move. It wasn’t that I was in so much pain I couldn’t move, I physically couldn’t move. It was about a week after that I was well enough to go to the doctor and he started by getting me checked in many different ways while I also started physiotherapy. By this time, pain had become something I dealt with on an almost daily basis.
After a year, they decided to operate and even though the surgery itself was a success, I ended up with a frozen shoulder and I was on morphine every day for many months. In January I was able to get off the morphine and make the transition to regular painkillers. At some time during the summer, the summer of 2020, the pain finally lessoned greatly and now, more than a year after the operation, I am finally getting my mobility back in my arm.
The point is, most other people would know when to take breaks while working, most other people would know when an injury is getting worse, but I didn’t. I didn’t notice. There was pain, yes, but I couldn’t determine what level of pain is normal and what isn’t normal. I didn’t know what level of pain is acceptable and what level isn’t.
You see, there are two ways for me to figure out how I feel physically or emotionally; either it’s beyond my limits and the car hits me in the face without breaking, or I stop and closely examine myself and my feelings, so it’s like I’m actively searching for the car. In almost every case, however, I still can’t find the car until it hits me in the face.
I also can’t spend every moment of every day actively searching for cars, because I don’t really know when they are there or not. I wouldn’t be able to do anything except search for metaphorical cars all day.
I have been trying to figure out how to better understand my physical body, though. I don’t want to get injured like this ever again.
Because of my shoulder injury and the surgery I had, I need to take better care of my body in the future. The pain in my shoulder can be really intense, a tiny wrong movement with my arm can keep me in bed for days.
In some ways, it’s the same with my feelings. I have stayed in situations and allowed things happen to me, allowed people to talk to me and about me in ways that are not acceptable to anyone. I allowed it, not because I didn’t feel the consequences, but because I didn’t understand it while it was happening.
I’m left, in the end, with all the consequences of those hurtful and painful situations, but by the time I understand my feelings, everyone else has already moved on. I can no longer bring up hurtful comments or talk about how someone mistreated me because too much time has passed. Sometimes, we need to be clear about our boundaries while something is happening, because people can get used to treating us the same way if we allow it too often.
So, this was one of my longer posts. Next time, I’ll tell you how I deal with all this, because I definitely need to deal with this to make sure I don’t end up regularly breaking down both physically and mentally.
