Both of these things can be true (dialectics)

 Sooo, here is a thing that has popped up in an awful lot of conversations this week. Different people, different scenarios, and not just me going on about it special-interest-style - it's emerged spontaneously in conversation, brought up by either person. Although true to character it is often me that gets excited and starts yelling about it when I notice we've ended up there again. I do love making links and identifying things: it helps the world connect together and make sense.

I will always remember a particular nurse who was oft heard to remind patients "both of these things can be true." I think of her every time I exclaim it mid-conversation, and I will never forget the mind-blowing effect it had on me the first time I heard it. It's a devastatingly simple concept, but was a whole new world to me, two things being true at once, the world not being binary black and white boxes. Transformational!

When I am anxious about an upcoming event I get asked, "will you even enjoy it at all"? or "is it worth putting yourself through this?" and I find myself trying to explain the conundrum of how it's OK to go because although I am and will be anxious, I will have fun too. Then I realise it's really simple: it's that thing again! Both of these things can be true. Although anxiety may at a first glance appear to preclude positive emotions, in truth I can have anxiety and have enjoyment at the same time. I have anxiety most of the time so it's pretty lucky that's true or my life would be incredibly dark and dismal. Two statements that seem completely at odds with one another may actually both be true.

The principle works for a whole host of scenarios. 

A teenager may want independence and want the support and care of their parents

A parent may love their child and impose consequences for their behaviour

You may have an argument with someone and still be friends with them

You may be terrified of something and you may want (or need) to do it anyway

In some cases we may only even see one of the truths - certainly only give one any weight. Because I have a one-track mind, I forget that more than one thing can happen at once. I note the uppermost thought or emotion occurring in a time of distress and take that to be the truth. 

Because our brains are programmed to keep us safe they are particularly alert to danger and keen to warn us of potential threats (remember if our brain perceives a threat as real it acts as though it is, whether that makes logical sense or not), so we are likely to form speedy assessments in situations where there is any possibility of "danger" (including danger of being rejected or overwhelmed). This can give us a tendency to think in a very black and white way (particularly characteristic of autistic people anyway), to jump to conclusions and mind read what we assume others "must" be thinking. And it means that the uppermost thought or emotion tends to be the most threatening one.

If I have a disagreement with somebody, in my head I think they think I am wrong, which in the immediate instance, they probably do. The trouble is, this becomes my truth. I think that that then defines their opinion of me as a person. I forget the quite possibly simultaneously-occurring truth that they like me and/or respect my opinions.

I make a mistake and I forget that alongside "I got it wrong" can exist the truths "I meant well," "I tried my hardest," "I am loved regardless."

So I'm glad this has come up repeatedly in my conversations because it's so easy to forget, but it's one of the many wonders of DBT!

Scenarios paraphrased from: https://www.mindsoother.com/blog/how-to-think-and-act-dialectically

Further brief introduction at https://www.sheppardpratt.org/news-views/story/dbt-101-what-does-dialectical-even-mean/

The Oldways

 If I wasn't already known as the village crazy lady then walking barefoot down the street stroking my hand with the fronds of a fabulous piece of reed should have done it!

This walk was long overdue and as soon as I left the house my feet let me know they wanted to be on the ground, not the flip flops I had put them in. I ignored them for the duration of the appointment I had gone out for, but as soon as it was over I had to let them be free. 

My feet found so many wonderful treats and treasures for me and led me to where I needed to be. 

Long grass, short grass, cool grass, warm grass. Hot hard tarmac. Smooth paving. Earth baked dry and earth with a spring. Soft dirt, spiky stones. Bark that wakes up each millimetre of forgotten sole.

Insects buzzing, breeze in the trees, pigeons beating the air with their wings. Doves cooing, tiny popping as water evaporates under the sun from the drying stream, and the odd drip from the grasses growing into the water. A distant pheasant. Butterflies dancing. Songbirds chattering. And me, finally still. Sitting, silent. Breeze stroking my skin in the warm shadow. Bare feet, breathing the life around me, being part of this place in this moment.

How to brush your teeth: What on earth is executive functioning?

I promised a post on executive function a while ago. Ironically it has been delayed because it took me so long to collect my thoughts and work out how to put them into words!

Executive function is a funny phrase that doesn't really explain itself very well. I think it sounds like a very vague term for nothing in particular, or that top boss who's technically in charge of everything but doesn't actually do anything in particular. Well, in some ways it is a bit like that! Executive function is your brain's organising and ordering of its own self. 

It's what helps you work out what you need to do, when you need to do it, and how to do it, from something as "simple" as brushing your teeth (do it after your last meal, before you go to bed - perhaps it has a more precise spot in your evening (and morning...) routine which we'll touch on later - pick up toothbrush in one hand, toothpaste in the other, open toothpaste tube, squeeze a pea-sized blob onto toothbrush, close toothpaste tube and put it down, turn tap on, wet toothbrush under tap, you get the idea...) to complex tasks like driving, mathematics or writing a book. The unsung hero without which we would not order any task - ever tried to make tea without boiling the kettle? - or switch between tasks, or work towards any goal. Sequencing, memory, decision making, paying attention, starting/finishing/ordering tasks, flexibility (of thinking, rather than body...), self control, emotional regulation and problem solving are all the jurisdiction of executive function. 

Some brains, for example those described as autistic or having ADHD, have a bit of a different operating system. Life would be boring if all computers ran Windows, after all. These operating systems may prefer to do only one thing at a time rather than running several programmes simultaneously. Perhaps they need each task to finish before the next can begin. They may have a favourite programme that runs more easily than others or likes to take precedence over whatever else is trying to run. 

This can often be fantastic - when only one programme is running it may run at great efficiency and is highly accurate. It gives a satisfying and detailed picture to the viewer. Jobs are done thoroughly and to a high specification and often enjoyed. 

However, in a world that more often runs a different operating system which expects more flexibility and variation and prioritises specific tasks that are valued by society, this can cause difficulties for any of the parties involved. If you're expecting to interact with one operating system it's a shock to be met with another. Many people only know how to work with one operating system and find it difficult to navigate others. 

Autistic operating systems can require a significant amount more preparation to switch tasks. They may evaluate the relative urgency of tasks differently from others or evaluate all as equal (brain explodes here because there is no deciding factor for which to begin first). They may not have filters for incoming data (sensory or social or emotional input), which can derail the task in hand. If a task is derailed they may not have the instructions pre-programmed to resume mid-task and may need to restart from factory settings. They may not have reliable filters identifying which information is relevant, or most relevant, and therefore flounder in decision making tasks as the options, pros and cons are overwhelming. 

What a lot of metaphor. What does this mean in my day to day in my life? 

It means that I rely heavily on routines to compensate for my differences in processing. I mostly have pretty good ways of getting by, until something interrupts my compensation strategies and I realise just how difficult my system finds some things when it's not fore-armed to deal with them. 

A beautiful example: on my first few days at home after living in hospital for months, it took me forever to get myself into bed. I would stand in the bathroom looking blankly around me wondering what I needed to do, or I would pick up the wrong items for the task in hand, or get into bed and realise I still had my contact lenses in. 

In my then familiar environment of my bedroom on the ward, everything was where it should be, each task happened in the same order each night and bedtime was smoothly accomplished in a few minutes. Take away that muscle memory routine and I had no idea how to go to bed! I knew the title of what needed to happen: "go to bed", but had lost the step by step instructions and didn't know how to to it. Imagine having to think through every step of the toothpaste scenario described earlier. And then remember to do the same for changing into pyjamas, using the toilet and removing contact lenses. It's exhausting. A window into what it's like when autistic people have their routines removed or interrupted. Exhaustion brings a reduction in coping resources and executive function, and you can see how the spiral spirals. 

How many plates?!

Only yesterday I had a spectacular moment of abandonment by my executive functioning system. I had cooked the tea and discussed with Mr Peggy and a socially distanced Ma Peggy how I was going to portion it to find out how much raw ingredient I need to make the right sized cooked portion. When it came to the time, I just couldn't figure out how to organise myself to portion up three platefuls of food and find out how many portions were left. Did I need to get out about 8 plates to portion every portion out? Where would I put all those plates? That would make a lot of washing up. But if I put all the spares in one place how will I know how many there are? Perhaps I should measure one portion at a time and then put them back into a communal tub, thus using only one plate? If I portioned them all up straight away the ones to eat now might go cold. And a thousand other confusing thoughts and questions. Luckily I recognised the signs of overload and asked the Peggies what to do! I often end up taking a lot longer to do tasks or doing them in a way that seems overly complicated or inefficient to others, because my brain has found a way to do it that works. I may stick with this method if I do that task again in future, because I have done it before. It takes a lot of time and thought for me to reprogram to a new way of doing something even if it is simpler.

Routines help me through every part of my day, usually subconsciously. Leaving the house, getting up, arriving somewhere. Most of my belongings have a place, so I know where to find them. It takes a lot of brain power to look for things (start with places it might logically be, but then imagine where somebody else might put it in their logic, but that may not seem at all logical so then you are looking literally everywhere!), and the looking interrupts the task, so once the item is found the task may have to begin again. So I like to be able to rely on them being where I expect them to be. These little routines and habits are not exclusive to people with executive function differences (how many people wash themselves in the same order every time they shower or get irritable when their keys are not where they left them?), but people like me tend to have more of them and rely more heavily on them. It distresses me when things are not where they should be and when things do not happen as they should happen or I am expecting them to happen because I have to reset my whole brain. 

I also use longer-term routines to help me make sense of the world and the passage of time, and to help me know what to expect - predictability and familiarity, in case you hadn't yet noted, help the busy brain. I always to the washing on a Saturday. I clean out the guinea pigs on a Sunday. I do the weekly shop on a Friday afternoon. I go to certain classes (eg. yoga) on certain days. I feel more like I understand and can predict the world this way, and then I can relax a little. When these weekly rhythm routines are disturbed I have to spend a lot of energy on constantly notifying to myself what day it is, when the next "normal" thing will happen to try and get me back on track. 

I use lists nearly all the time, especially lists of "to do" and "to get." Otherwise the items zap around in my head demanding attention, until the moment when I needed to remember, by which time they have toddled off for a brief nap only to resurface when it's too late! When preparing for a particularly busy day I make a chronological list of each step I need to accomplish, so I'm not grappling with trying to remember, prioritise and sequence it as I go along (this is basically a version of  a visual timetable; a tool used throughout the special needs school where I work).

I have to reply to messages as soon as I open them or I won't remember! If there is a pending communication, woe betide if it doesn't make it to my to do list (please tell me if I owe you a communication!!).

Little familiarities that can be used across contexts can be helpful. Using my own equipment (eg. pen/notebook/blanket/toiletries/car/cutlery etc etc) and doing things my own way even in a new situation can help. If I have a "soap bag" evening routine for travelling, this night mean I can more easily get to bed in a hotel or friend's house even though the environment is not familiar, because the soap bag, its contents and the routine I follow with them are the same, which reduces the newness and therefore processing involved the task.

Throughout childhood and my teenage years I would have minor shutdowns from getting too hungry and then needing to make a decision. Decision making is still a major trigger for shutdown: my brain just can't process and prioritise all the variables but can't produce an answer unless it has a deciding factor, so it crashes, much like a computer. 

I think I've spoken a lot elsewhere about emotional regulation and some of my problems and helpful tools in this area, so I won't go into that now, but please do ask if you'd like to know about that.

Factors such as tiredness, emotional dysregulation, sensory dysregulation and non-availability of routines (including unprectictable events, changes to plans or unfamiliarity in some aspect of my situation) can affect my executive functioning levels and therefore my ability to a) complete tasks at all, b) do it in a timely or effective fashion, c) prioritise usefully or d) make decisions. 

Everybody has these experiences from time to time, perhaps when overtired or stressed - we all struggle to make "wise" choices when in these states and perhaps spend more or drink more than we would otherwise. We forget what was on the shopping list, or to pick up the shopping list. We lose one of the tasks when multitasking. You need to stop, retrace, recoup, and continue. That is a laspe in your executive function - just imagine every task being like that every day, and finding it much more difficult to get back on track afterwards! 

Whisper

Whistles and shrill squeals awaken the evening air as the swifts soar and arc across the sky in their infinite playground of freedom. They have brought me peace and joy in summers gone by, but I said goodbye to those days as they were followed by dark, dark ones and it became too painful to remember the rising promise of life when it had since been dashed so thoroughly.

And yet tonight the warm breeze that gently stirs the birch leaves brushes my skin with the softness, security and familiarity of a well-loved blanket, delivering the faintest glimmer of what I thought was lost to me: forbidden, abandoned hope. It's gentle enough to be permissible - it slides in, the tiniest of feelings, barely noticeable so as not to alert the beast within to its presence, and yet I know it has visited me.

Hope is painful, it brings uncertainty and the possibility of crushing, destroying disappointment. These things I cannot bear and so by habit I squash hope. I box it up for when I'm sure - it's lovely to know it's there but I can't bear to touch it. But this hope stole quietly up to me and stroked me on the cheek, not overpowering with its presence but simply passing by just to let me know it was there. It didn't need me to take it captive, it will come again when I'm ready for it, and I will learn one day to dance with hope.

The beauty of a reasonable adjustment

Oh bless the beautiful little cotton socks of my GP surgery (and the invention of the SHOUT service that does not require verbal communication, and the people who have worked to help me accept my needs).

With the encouragement of the volunteer on the SHOUT line last night, I psyched myself up for one last phone call (feel I'm doing well on the resilience front here!), to my GP surgery, to explain my situation and ask for help.

I went in autism-focused, spiel written, and began with "I will read it out. Please don't interrupt until the end because I have autism and will get mixed up." She listened and waited until I had finished, before asking if she could continue. She said she would get a doctor to ring me back.

And here we reach the climax of the work I have achieved: instead of being a good patient (or just being overwhelmed and on autopilot) I responded that that would be a difficult problem!! And the beautiful woman uttered glorious words, the like of which have never previously been heard from the mouth of a GP receptionist (or something...): "would email be any better?"

Dear lady you, you, are the Queen. Nothing would be better than email. 

When your communication needs can't be accommodated

At the risk of becoming ranty, I'm turning to trusty Mr Blogger once more to solve all my life's problems. I mean, to help me process things that happen and deal with my emotions in a non-destructive way, of course!

I have a particular problem at the moment and I can't find a way to solve it. I've tried really hard to make it work and I've resiliently asked for help and expressed the problem multiple times, but to no avail. Hence I fear this is just going to turn into a rant.

I knew there would be difficulty in having all my post-discharge support remotely (in hospital, I had support to access remote appointments and to debrief after them and still had trouble managing), and I knew the adjustment from 24/7 care to 2 remote appointments a week would be challenging. I also knew that the phone and video calls were my only option, so I got on with it. I found things that helped: using my headphones so I can hear better and am not filtering out extra sound to hear the voice on the other end, buying extra data so I can take my support team for walks - it's easier to engage and process when I'm outside, and once I've used the movement to help me regulate at the beginning of the call I usually feel better able to sit somewhere and manage the rest of it. I take time out in my sensory cave when I'm feeling overwhelmed after a call. I am trying so hard to make it work.

All these things help, and mean that on a good day I can get benefit out of an appointment even though I come away exhausted and often realise shortly afterwards that I didn't say what I needed to say, or that I didn't process something properly and missed out some conversation that could have really helped both of us.

But on a bad day I can't communicate properly. I can't say things at all so the person doesn't even think I'm communicating (often they probably think that I'm managing with the remote conversations because I am engaging and talking about some useful stuff). They go away because they think it's a bad time to talk, and I'm left feeling even more alone, hopeless, trapped and useless because my one chance at getting some help has failed. I have to survive until the next opportunity. Which I still can't access properly because I'm still autistic. 

I have a meltdown afterwards. The only way I can get help is by dialing another number. I don't know why I think this will help. Maybe I don't, but it's the instructions I've been given and it's my last shot at trying to help myself. I'm working on resilience. Keep on trying. Unsurprisingly I struggle with that phone call. Eventually they get some information out of me. They say they'll get my nurse who knows me better to ring me back. I can't tell them that I've only spoken to her 4 times anyway and another phone call is going to add to my distress and overload, not solve anything.

She rings back later and it's a disaster for both of us. She shouldn't have been put in that position, but it wasn't anyone's fault. I couldn't give them the information they needed. I'm the problem. Another meltdown. It's a good job I've lost all sense of public decorum or awareness of anything beyond my distress or I'd be very embarrassed by my behaviour.

I get home and stay safe the rest of the day, thankful for the presence of Mr Peggy. All the blankets, time to write an email apologising for my distress on the phone and trying to explain my problem (this email to send via my other nurse, because they're the only one I'm allowed to email). Comedy TV. They all help me keep calm until the night time. The odd half hour of sleep here or there. The anxiety builds before the second of my scheduled phone calls of the week, with the poor Peg from yesterday. I can hardly bring myself to answer it. It's my last attempt at engaging in this remote support - I'm going to have to go it alone after this. I know where that is likely to lead.

The phone call doesn't help. She can't fix anything (not her fault), I can't fix anything. She goes away, not wanting to overwhelm me with telephone conversations, but meaning I'm support-less for another 8 days. "Ring the office or the crisis team if you need any more support." Great plan.

I've tried all avenues, so I guess it's like it's always been: you have to cope alone and you should be able to. I spent seven months being told it's OK to be different and have different needs, and being helped to work things out, but none of that's true in the real world. Your needs are unreasonable. The 8 days may well be longer, because I'm not sure I can face the disappointment and distress of another phone call and its aftermath. 

Sometimes lockdown is really 💩

And the OT, insurance people and car servicing people trying to ring of me may as well go stick their heads in an oven (although actually, often if you explain your difficulties they do accommodate and communicate by email...).

What I'm doing to cope

I thought all this talk of sadness might be bringing you down, so I've decided to give you a peek at some of the many and varied strategies that are making life better and keeping me going!

Small, manageable projects, some of which are wonderful to share, others of which are most useful alone.

Creating my sensory cave - this one is a double whammy because as well as a project to do, it is already benefiting me enormously, and more than I dared to imagine, as a low stimulus space where I can be alone, in control and recharge.

Gardening with Mr Peggy - this is so much fun, and something we've discovered we love to do together. I've always wistfully thought I'd love to garden, but usually I just kill stuff! We're trying some flowers and fruits so watch this space! And in amongst them are some really meaningful plants for me, given to me by various people who I'm missing a lot. It helps to grow these plants and think of them.

Treasure basket - of favourite sensory items I've collected from meaningful places and perfect little bits given to me by new friends which mean the world. I can tell you the story of each piece.


Walks in the countryside - especially when I'm on the phone, I wander aimlessly out of the village and see where I end up! Good job I have a good nose for getting home again! Being outside really helps me to regulate my body and emotions and to be calm and process. Exploring with Mr Peggy has been great fun and exciting and just a lovely way to spend time.

 






Guinea pigs - always a sensory delight, good fun and cute!



Yoga - a constant that has stayed with me from my time in hospital and one benefit of the lockdown! My weekly Zoom yoga class with the wonderful Hania Therapies. Amy has also been giving a daily 15 minute live yin session throughout May - perfect!

Wordscapes - the one and only game app I have on my phone, but a really useful distraction I've brought back from my time away from home to keep me going in difficult moments. Sporcle is also good for this if the laptop is to hand.

Family and friends - I can't count the number of well-timed messages I've had that have helped me through difficult moments, knowing that I can send a message to Mr Peggy, a Peggy sister or a Geordie Peggy any time and they'll have my back.

Blogging - writing really helps m discover and process what I'm thinking and feeling. As I always say, I do this more for me than for any of you!

And of course, a bit of at-home therapy, cracking out the CBT, DBT etc etc!