There is a story of a man whose husband dies after decades of marriage. He is desperate to know how to keep on living. He is in such misery and deep endless pain over the death of his partner. How does he find meaning in life again? One day somebody asks him, “What would it be like if you died first?”. The man realises that whilst he would be spared the pain of bereavement, the man that he loved and had loved him back, would face a similar experience. This realisation makes it easier for the surviving partner to find a reason to bear his pain. He is able to move on and start finding new meaning in life.
Now I am sure you could make a lot more out of that tale. It has the ring of a feel-good movie about it. Something I am prone to search out at this time of year. And even in those few short sentences there are concepts that I struggle to comprehend. Life-long love for instance. But I think this story resonated with me because dealing with life-long pain is something that is fairly prominent in my life too.
One of the ways that being identified as autistic has affected for me, is working out how much I struggle with life and why that struggle goes on. Living with pain is one aspect of this. My thinking is that because I hypersensitive to certain stimuli, I am actually receiving a lot more pain that I give myself credit for. In times past, I would have thought of pain as a physical injury and I would say that I have got off fairly scot-free (where does that phrase come from?) on that front. I have never broken anything. As a kid, I would say tooth-ache was the worst thing I endured. Thankfully my mind has blocked out the face plant I did into a low-lying brick wall the first time I rode a bike. I used to complain of headaches but nobody could find anything wrong, so I gave up mentioning it (perhaps everybody had them).
Now I think of pain as anything that upsets me. I have experienced worst physical pain than tooth-ache as an adult. Requiring and receiving a liver transplant pretty much guarantees that. It is inconvenient being hypersensitive to light too. Which is my explanation of the headaches. However, I think it is the mental pain that goes with being autistic that is hardest to contain. There are after all, no fast-acting, short-lived painkillers for mental pain. Maybe anti-depressives and anti-anxiety drugs provide a longer term solution but I certainly don’t like the blanket dullness they produce. And I can survive without them. At least for now.
The realisation that I probably have gout has left me wondering how I will endure the physical pain it can produce on top of the all the other pain I cope with daily. I seem to have hypersensitivity to internal pain too so that my experience of gout is medically unproven even though the patter of pain is consistent with the issue. For my mental state, it is easier for me when I have a clear label because otherwise self-doubt creeps in.
Is that enough justification? I feel I am beginning to drift a bit. The point I guess is that I have been wondering how I will endue the pain that the future will bring because I am getting older and my body has been through a lot. Plus being autistic means that there is a near constant flow of pain from other areas. There are days when I barely tolerate the levels of pain I have at the moment.
The story though hints at another possibility. One of the things that keeps cropping up in my discussions with my spectrum members is the lack of support we receive from the world in general and our partners in particular. Partly this happens because we don’t know what we need in terms of support, partly it happens because we are fed up of repeating ourselves, and partly it happens because we struggle to communicate our world to others.
What if I reframe my struggle to cope with all forms of pain? What if I say my purpose is to explain my world to others so that all types of people get a better understanding of what it is like to be autistic. What if I look at this blog as a means to communicate with the world in general rather than only reaching out to fellow spectrum occupiers? Actually that has been happening anyway. Some of my friends and family read these posts. In the last four months or so though, I have felt that I had little new to say or inspiring revelations to give. Perhaps though it would help me if I noticed the little things that hit me. Perhaps it is okay to repeat something because not enough people have heard it, let alone understood.
I am not sure I am comfortable finding a “purpose in life”. It all feels a bit too confident for my liking, a touch of arrogance perhaps. For the moment though it helps me. Maybe I will feel different down the line.