Apologies for yet another of these “journal type” posts. I had hoped that this blog would be just a little bit more balanced than it has been recently, and I’d still like to explore particular aspects of autism and create something a bit more useful, but, as I said right at the start, it is also, for me, part of the process of dealing with life and of trying to work out where to go from here!
I have spent the last few days feeling utterly shattered. This is partly because I managed to leave the flat a bit more than usual at the end of last week, and partly because I am starting to absorb everything that has happened over the last few weeks and preceding few months. Furthermore, it has become obvious that trying to struggle through learning advanced mathematics and completing assignments and sitting an exam in a few months time is totally and utterly beyond me right now. No matter how much I “put my mind to it”, it just isn’t happening. There are some times in life where no amount of effort will make something possible, and this is one of them. I had the same experience when I abandoned my DPhil 20 years ago – I wanted it so much, I wanted desperately to complete it, but sometimes, no matter how hard you search, there isn’t any more energy there. At that point there is nothing to do but accept that you need to stop, to give up, and to recover as best you can and make a new plan.
The process of acceptance is something I’m finding a bit odd, and also rather confusing. On the one hand I feel a huge relief that I can stop, breathe, and take some of the pressure off myself, but on the other, I feel somewhat bereft and directionless and a bit lost and I’m wondering what I’m supposed to do now.
The basic answer to that last question is, of course, obvious. I have plenty of things that still need doing – there is laundry and admin and trying to remember to eat and take care of myself. I also have lots of books and DVDs and so on that should keep me amused for a while. To many people this might sound like a great holiday, some sort of lovely blissful time – I now have permission to lie around in bed at home, watching the telly, reading anything I want, eating as much chocolate as I like, while just making the occasional list and chucking a load of laundry into the machine from time to time.
Except that this isn’t a holiday. It isn’t a break from the tough stuff – it IS the tough stuff. It has now taken me over a week to get enough brain cells together to even think about making a list. I am struggling to eat anything at all during the day as it just makes me feel sick and I’m having to force myself to nibble small quantities of high calorie food just to maintain my weight. I can’t concentrate to read most days, and I often find the light and sound from the TV terribly overstimulating. Strangely, the laundry is probably the best bit of the whole lot, though the noise from the washing machine sometimes makes me want to beat my head against the wall!
The above paragraph makes it obvious that I’m still very much recovering from burnout, and explains why I’m so unable to do more than leave the flat from time to time and the very occasional thing. And, on one level, it does give me a set of goals to aim for – eating proper meals, reading a few pages of a book, sorting out the random papers on my desk. On a small scale I have goals.
But the larger scale is more problematic. And this is where the dichotomy between feeling relieved and feeling lost is pertinent.
Getting my autism diagnosis is a huge relief. Learning that the struggles I’ve experienced all my life are the result of my brain working differently from the majority of brains is hugely enlightening, liberating, and exonerating. I know now that I was never able to fit into the world in the way that most people can because I was different from the start and I always will be. I’ve always known I wasn’t like most other people, but never really thought much of it because it was the way the world was for me, but I continually failed at things in a way that shouldn’t have been the case given how much I was working for them. Acknowledging that difference is really really helpful – in the same way that when we were discovering we were unable to have children one of the most helpful things I read was a paragraph in a book that explained that one of the difficulties of being childless is that it immediately marks you out as “different” in society because so many people do have families (and spend a great deal of time talking about them) that you will inevitably be an outsider on many occasions. That paragraph made me realise something I hadn’t hitherto realised – I was already different (I knew that much before autism was even considered) and my failure to produce a family made me even more different, even more of an outsider in society.
Acknowledging that feeling of “otherness” was really important to me then, as it is now. I have changed from being “wrong normal” to “right different”, which is good, because it means I can finally relax (as much as that’ll ever be possible for me), be myself, and set myself more realistic targets that allow me enough time for rest and recuperation in between and take into account how much just being out in the world exhausts me and drains my energy.
Finally, breathe. Stop. The battle is over. I can pause. Phew.
But what now?
And here is where the lost feeling comes in. Because the problem with not discovering you’re autistic until you’re 45, and with having achieved good exam results at school, and with having spent your entire life striving for “success” of some description is that without that ambition and those goals and those life plans, you feel somewhat cast adrift – I’m free, yes, from the expectations that I will now ever “get better” and be a high-flying something or other, but I’m also, now, somewhat directionless – floating around in an ocean and I don’t know which way to swim. The training I received in my youth was all based on me getting a good career, living a “normal” successful life. All my assumptions about my life included a full-time job, a family, and a house – that was the life I was prepared for. I never learnt about the benefits system, or what to do if you can’t work, or how to relax, or how to ask for help and support – none of those things was on my radar. I’m having to learn them pretty much from the beginning, in my 40s. This is a big ask – a complete rethink on my life philosophy. I’m also going to have to work out what I can actually do with my life that will take me beyond simply staring at the TV all day every day, because, even with my changed reality, I hope to be able to do a little more than that at some point.
So I look around and try to ascertain what others do with their lives. How do people who have neither a job nor family fill their days? What is life then for?
It seems like a wonderful opportunity – I’m sure there are people tied to jobs and families who would love to spend time travelling or pursuing hobbies or whatever, but I’m not only decidedly short on finances for travelling and so on, but just being out in the world with people exhausts me so much that any hobby would need to be mainly solitary and done at home. I’m not really looking for answers here, just pondering, and I know in my brain that I need to wait until I’ve recovered further from burnout before I can start to see what level of functionality I actually have and what I’ll ultimately be able to do.
So, I am liberated, free from the need to “perform” any more, free from the need to act the confident high-powered strong woman who I pretended to be for so long. But I am also cast adrift, directionless, like a balloon released and left to its fate, and I believe that I just have to go with both of these things for the time being. The old “rules” are gone. My life has been redefined. And there is no point fighting it, no point trying to cling on to “the way things were before”, because no matter how much I wanted that life to work, it didn’t, and the only way to move forward is to let go, relinquish control, and trust that some way forward will eventually emerge.