This is the third year running that I’ve been to the same music festival. The first time was very shortly before I received my diagnosis, so the two events are quite closely related in my mind.
And over that time a lot has changed. But a lot hasn’t. And although I’ve developed a lot of strategies for getting through everyday challenges, the challenges don’t go away. Until the world in general becomes more understanding, life will remain difficult every time I step outside my comfort zone.
Every time I want to do something different, I have to weigh up whether it’s worth the challenge. Some challenges are insurmountable: however much I may want to do something, if it involves a lengthy and unstructured phone conversation with a stranger, it isn’t happening. Sometimes I’m only able to do part of the whole: again, however much I may wish it otherwise, I’m not able to spend extended periods of time in a noisy and cramped environment. I’m very lucky that most of the time I’m with people who understand this and don’t push me to do the impossible.
One of the most challenging things has been accepting my own limitations. Learning not to push myself too far for things that don’t really matter, or that I don’t really want to do. Learning to appreciate the things that I manage to do, rather than dwelling on the things that I think I should be able to do. I’m not completely there yet, but I’m getting there.
This weekend, I am pushing myself. Because I love this festival, and want to do as much as possible. But there are already challenges, because there always are.
One of the main challenges yesterday was travelling to the festival. I have difficulties on public transport: it is overwhelming from a sensory perspective and I can’t cope if anything goes wrong. I try and mitigate this as much as possible – I have noise cancelling headphones, and a relaxing music playlist. I try and travel at quieter times. I use my “please give me a seat” badge. I check the timetables obsessively so I have several alternatives if things go wrong.
Despite this, travel never seems to go smoothly. I had to travel across London, and my ticket wouldn’t operate the gates. The Underground was packed and I couldn’t physically get to a member of staff to manually open the gates for a while. By the time I managed, I was very visibly stimming, which is invariably misinterpreted. Then I had two people trying to persuade me to stand in the noise and the crowd to calm down before going to the platform. I didn’t have the words to say that I was only going to get worse if I was forced to stay in that environment – that if I was there too much longer I was going to go into full-blown sensory overload. Eventually they gave up trying to persuade me and let me through. But I was so overwhelmed then, that when I got to the next station I misread the departure boards and got on the wrong train (one to Warwick Parkway rather than Warwick). Luckily I’ve done that journey often enough to know where I could change trains – but it reinforced to me why I don’t travel alone on public transport if I don’t know where I’m going.
I’m staying in a hotel rather than camping, mainly so I can have a quiet space away from the festival – another adjustment, but one I’m not unhappy about! But even that has some challenges – I’ve always been able to sit in the same place for breakfast, but today someone got there before me. I genuinely didn’t know what to do, I felt I had to ask for permission to sit on a 4-seater rather than a 2-seater table but there was no-one to ask (there weren’t any 2-seaters that would have worked, as I need to be sitting against something and / or where no-one can walk behind me). Eventually that got sorted, but then a loud group came in…
It’s things like that that most people don’t even need to think about. And although I find most people willing to adapt for my needs, I still feel sometimes that some people think I’m just being fussy and that it must be possible for me to compromise. Sometimes it would be – but there’s a knock-on effect for some time.
For instance, yesterday I wanted to go to the evening concert. I really wanted to go. But I was so overwhelmed by the journey that what I actually ended up doing was resting in a darkened room from 6pm. I couldn’t process anything. I couldn’t even manage to go online.
And I’ve had people who should know better complaining that I’m not making eye contact. Yes, I can make eye contact if I really have to (or I’m comfortable enough with the person that I don’t have to think about whether I’m making enough contact / too much contact). But not if I need to listen to anything – I can’t process both inputs at once.
This is also the reason why I choose not to mask most of the time. It takes so much energy and concentration that I don’t have much left for more important things. I still have to mask sometimes, of course – mainly when I need to interact with people I don’t know. But an hour of masking can write off the rest of the day. So I try not to mask unless I really have to.
The everyday challenges aren’t going to go away any time soon. But I’m increasingly managing to live a life that isn’t just about coping with challenges – a life that can include things that I find enjoyable, not just full of things I have to deal with because that’s what is expected from me.
There’s still more to do. I’ve ended up where I am almost by accident, and if I’d known a few years back what I know now my life might have been very different. (It’s like the old joke: to get to there you wouldn’t start from here.) But more things seem possible than they did even a year ago. I just hope that continues.