The thing that I think is most difficult to understand is the permanence of pain, to picture its entirety, it is a constant, throughout every moment, every instant of one’s life. Pain does not go away, it increases and decreases but never goes away completely, it is there in happy times, at times when you are laughing, when you are watching a movie, at work or brushing your teeth, it is there in the morning and it is there when you are trying to sleep. Pain has been with me from my first breath. I remember many moments of pain, moments when I noticed it while I was playing, seating on the floor as a child, moments when I saw that others did not seem to have this pain too because they could seat on the floor easily and they could move and do things. I felt it was a weakness. It is difficult sometimes to accept that it will never go away, pain has been with me from my first breath and it will continue to be with me until my last one. At times, I realise I am trying to negotiate with it, maybe if I do this or maybe if I don’t do that. It is something stuck on my skin I am trying to remove, I move and shift and it does not go away. I eventually stop, take a breath and try to focus in something else because I know, I cannot make it go away. 

I was born in pain and have been in some level of pain every second of my existence ever since. I am 42 now and having lived this way for this long has taught me some things. I do not know different, I do not know a moment without pain, however, I don’t have pain everywhere all the time, I have pain all the time somewhere. What this means is that it is not so strange the idea of not being in pain. It does seem a bit like trying to imagine what is like to not have the sense of vision, not seeing black but to not receive that information at all. I wonder how people feel their body as I only really feel the parts in pain and sort of forget the rest exists.

It also made me quite stubborn, not in the sense that people usually tell me I am stubborn that I think it is more to do with my autism and the way I communicate in statements. They seem to think that I am stubborn because they cannot change my mind, it is not my choice to not change my mind, if you haven’t changed it why would I say otherwise? If you had and I still persisted I suppose that would yet be something different too, some kind of silliness. However, there is this stubborn type that when pushing a wall upon realising that it’s not budging they continue to push, now that, I do that. I am stubborn that way. It meant though that I refused to let myself delve into obsessive compulsive actions and put an end to that trajectory. It also meant that I have so far managed to not become a drug addict. Now, for someone with my condition to not become a drug addict, it requires to be aware of the risks and consider medications carefully. Taking pain meds regularly would increase tolerance, thus increasing your dosage and consequently need. Furthermore, being in pain for so long will eventually affect your nervous system in a way that induces depression which is 100% inevitable. So you really need to be conscious of your decisions as your judgement worsens and your ability to fight bad choices is reduced.