C is For… Confidence

I feel I am making good progress overall in my recovery, but I have a persistent feeling of a lack of confidence. Is this because of my breakdown or because of all the restrictions of the pandemic limiting the experiences we can have? A combination of both, I’m sure.

When I look back on things in my life, I keep thinking “I can’t believe I did X, Y, Z”. The funny thing is, I know I will do them all again, because of the fact I did them already. Like travelling, open mic night stand-up comedy, and my big achievements at work.

And then I remember… I have always felt a lack of confidence. I always felt the fear. And I did it all anyway!

So, I am reminded that I am exactly where I am meant to be. And everything will work out how I want, when the time comes.

Caminante, no hay camino, se hace camino al andar

This is Spanish and it means: “Wanderer, there is no path, the path is made by walking“.

We’re never really ‘ready’ for anything, are we? And that’s OK.

A moonlit golf course

Here I Am

Here I Am

That feeling when you reach
what’s on the tip of your tongue.
That moment at the breath’s
end of the exhale.
That feeling when you first
open your eyes in the morning.
That moment when you finally
catch your own tail.
That feeling of… stillness.
Of calm.
And, of peace.
Where time doesn’t go
too fast or too slow.
This…
This is resting.
I am exactly where I am meant to be.
And I am still
Me

I wrote this poem after a particularly nice day recently. It was the kind of day where everything came together so smoothly and I just went with the flow. These kinds of days are what I aim for in recovery.

The goal of each day is, of course, to just rest. But that doesn’t come so easily sometimes because of my anxiety. Recovery from a psychotic episode is certainly a rollercoaster in shame-resistance, emotional resilience, and self-acceptance as I put myself back together again.

Make no mistake, there have been moments of pure bliss too. The wonderful balances out the hard, for sure. And I have really made the most of this time with various different activities to express myself on this journey. Each week I am feeling more capable and getting more confident. I thank all my friends for their patience as I find my way back to myself ✨

Describe Your Boat

When I think back to when I was struggling in lockdown, before my breakdown, it is clear to me now that I was treading water and that it was going to get a whole lot worse before it could get better. But because we all were struggling, I didn’t dig deeper with myself and instead just tried to accept the intensity I was feeling each day as part of the new normal. This was a huge mistake.

Because the more I just accepted it, the more I tried to compensate in the wrong ways. For example, because I was struggling to work in the day time with the construction work going on right next to my bedroom wall, I compensated by trying to work in the evening because I had deadlines to meet. This impacted my ability to sleep at night, which meant I struggled to sleep in the day time with the construction work going on in the daytime also. I got trapped in that cycle day in day out for a couple of months.

So when I look back now, I think ‘no wonder’ my path went the way it did – to a total breakdown and needing treatment at a mental health facility. Because I am already sound-sensitive as part of my Autism, this was going to be particularly detrimental for me. When we were saying ‘we’re all in the same boat’, I thought it was OK for us all to be in a persistent daily state of stress and anxiety. Pretty much everyone I spoke to was also feeling anxious. But not to the same degree or with the same responsibilities. But I didn’t know this because I wasn’t asking myself the right questions about how am I struggling exactly? What does the struggle really look like?

And because we are all struggling in our own ways, we all stand in solidarity with each other as we brace the pandemic together, separately.

Let’s ask each other specific questions like:

  • How are you sleeping?
  • How are you eating?
  • How are you feeling today?
  • What made you smile today?
  • What made you feel challenged today?
  • What’s not working for you & why?
  • How do you want to feel today?
  • How can I help you in achieving this feeling?

In other words, what does your boat look like compared to mine?

We all need to feel validated for our own experiences amongst the struggle that we are experiencing as a community, and that we will continue to struggle with as we brace ourselves for the economic impact as a country, and on a global scale as well.

So whilst we are all in the same storm, we are not in the same boat. And I think this is a really important distinction to make as we continue to strive to keep ourselves safe, sane, and healthy.

Looking back, my boat was more like this birds’ nest that I saw yesterday in Finsbury Park

Wires Crossed

There was a study done on this specific social situation that showed that, while neurotypical people usually respond to a person telling an unfortunate story about themselves with something along the lines of “that’s awful” or “that must feel so X,” neurodivergent people (specifically autistic, although it applies to cousin conditions like ADHD and BPD) were more likely to respond with a story of their own.

To neurodiverse people, the first one feels hollow and token, whereas the second one actually shows that you know how they’re feeling, and that you’re truly sympathizing rather than putting on airs.

But to a neurotypical person the second one usually feels like monopolizing the conversation, or even more drastically, getting into a pissing match over who had it worse.

It’s two drastically different neurotypes getting their wires crossed when trying to communicate with each other.

Source: https://jamesspidercat.tumblr.com/post/186501450589/musicalhell-lochnessblobster-lj-lyall

C is For… Cảm ơn (thank you)

Cảm ơn means ‘thank you’ in Vietnamese. This post doesn’t relate to Vietnam at all, it’s just a little cheat title to stay in the realm of things that begin with C 😉

I would like to personally thank everyone that works for the NHS.

I was admitted to Homerton Hospital in East London twice this year. I am in recovery from a mental breakdown and I am processing a lot emotionally at the moment. One way that helps me get over things is by sharing my story when it feels right. Warning: this might be quite difficult to read if you are squeamish.

I have had to rely on our NHS twice this year. The first time for surgery, and the second time for my mental health as a result of lockdown because I buckled under the pressure of recovery from surgery, work, and everything else that was going on in my life at that time.

The first time I was admitted to Homerton hospital was in February when I had to have emergency surgery for a rare condition I didn’t know I had. I was so lucky to have received the amazing care that I did just weeks before lockdown. So, so lucky. It would have been very hard to go through what I did without my friends and family being able to visit me every day. My heart goes out to anyone who has suffered under Covid-19 restrictions in the hospitals.

It took about a week for the surgical teams to figure out what I had: a diaphragmatic hernia. A complication from a car crash I had 4 years ago. I ‘walked away’ from the crash only needing minor surgery to remove some fragments of glass from my left arm a few months later. However, there was a tear in my diaphragm muscle which over time grew to become a large hole 3x4cm wide. This led to my stomach and a portion of my large intestine travelling through it into my lung cavity. And my left lung had collapsed in on itself to make room for these other organs (said lung has since expanded to take up all the space she fully deserves).

After a couple of days considering how best to treat me (stay at Homerton or be transferred to another hospital; open chest surgery or keyhole surgery, etc) I was to have emergency keyhole surgery with one of three surgeons in the whole of London who could do the surgery I needed and he just happened to be working on A&E at Homerton that weekend. And he was so fascinated by my case that he’s writing it up for a medical journal!

My good friend and real-life scientist DR LAUREL ISSEN is here to explain what happened with this incredibly accurate drawing of my insides:

Scientific drawing of my insides by my good friend

Anyway, every single person I interacted with on the Priestley Ward and on the Gardner Ward made an impression. There were 21 people who looked after me at A&E the first time when I needed surgery, and 44 people on the psych ward at the mental health centre. I asked everyone that cared for me what their name is, how to spell it, and what it means.

Asking everyone for their name and remembering it later when I saw them again, was a gift that kept giving. Saying their names and seeing them smile or laugh in appreciation, gave all of us a lot of joy in those moments, where my capacity for anything else was exceptionally low. And for me, I really needed all those little moments of connection to carry me through the darker moments.

I knew I would want to hand-deliver these cards so that’s why the one from February is pictured here, because I couldn’t go back during lockdown and Covid-19. It’s also why I didn’t get to share my story around it, because we were all just beginning to struggle with lockdown and no one could think or talk about anything other than Coronavirus – myself included. And I put extra pressure on myself to ‘just get over it’ and not need another hospital bed this year.

Everyone on the Gardner Ward at the Mental Health centre said they never want to see me again as a patient, but they would love to have me back as a volunteer Peer Mentor in future. I hope, in the meantime, they’ll just have me as Sonia – someone who is incredibly grateful for all of them.

Being Present

I just thought of a little trick to ground myself and bring me in to the present moment. I looked directly into a bright lightbulb and then did what I could to ‘keep’ the image of it in my line of vision. I blinked, looked up, closed my eyes, opened them, on repeat, always focusing on the bright light trying to float away, but bringing it back to the centre of my vision. I did this for 64 seconds until it disappeared completely. Then I felt very present and ‘in the moment’ whilst I was making a cup of tea. Nice.

Also: I think that’s quite interesting and demonstrates that we can’t rely on our perception alone to tell what’s real. What’s real for me, might not be the same for you, as these cartoons above demonstrate. I stopped looking at the bright light, yet I could still see its effect on my sight after a minute. The same can be said for emotions.

In neuroscientist Jill Bolte-Taylor’s memoir, My Stroke of Insight, she notes that the physiological lifespan of an emotion in the body and brain is 90 seconds. Yet we will call a whole day ‘bad’ based on a drop of one negative experience in a sea of positivity.

We can’t control our emotions, but we can control our response when we experience them. How? Delay delay delay to prevent an automatic reaction, and instead choose an action. Or no action, as the case may be. But then, inaction is still an action in and of itself, isn’t it?

This is how my brain and thought-processing works. I’ve added the arrows to the second image myself, to demonstrate how my autism brain processes information. It loops and jumps and swirls. Now I find myself getting amused at things like idioms I’ve heard my entire life, because they have new meanings when we add layers of life experience in technicolour to them. It’s why I think in patterns and parallels, act out in paradoxes, and make jokes around puns. (Nice bit of alliteration there, if I do say so myself)

Some days are more taxing than others. Today is a good day: I’m having lots of ‘aaah, interesting’ moments, with secret smiles to myself, and I’m maintaining a steady stream of productivity. Whereas on other days I feel less in control, less guarded, and can easily get trapped in worry spirals.

Self-Love Monologue

One of the books I’m currently reading is Loveability: Knowing How to Love and Be Loved by Robert Holden. I say “one of” because I always have a couple of books on the go depending on what mood I am in when I read. I have battled with this concept as far as I can remember, read one-book-at-a-time or many books at a time, and never really finish any. Jack of all, master of none.

Sometimes I am in the mood for fiction (usually before bed / evening) and sometimes I am in the mood for non-fiction (usually in the morning / daytime). As of this moment however, I have decided that it’s more important to recognise and hence validate my changing needs within this paradox, than to read books one way or the other. Problem solved! Fab. Moving on…

A close friend of mine gifted Loveability to me for my birthday this year with a lovely dedication written inside. Dedications are one of the reasons I never took to reading books digitally. I love being able to ‘ruin’ books with notes and folded corners as bookmarks. I love seeing how far I’ve read or how much I have left. I love the smell of books, especially secondhand ones. I appreciate all their creases and marks, as if they’re visually proving they’re a book well-lived and well-loved.

I am enjoying this book immensely, but this is not a book review. I came here to write my response to the invitation to try the Self-Love Monologue on page 48. Readers are invited to reflect on our relationship to self-love. Ideally, to share our personal experience of self-love, what we’ve learned, and how we practise it.

To me, self-love is loving my body, mind, and soul. By loving them I acknowledge them. By acknowledging them, I can communicate with them. I touch them on my skin. I hold space to have a conversation with them individually or collectively, directly. I communicate by literally speaking to them. I thank them. And I forgive myself for not taking proper care of them before, because I didn’t know then what I know now. By speaking to them, I connect myself to them, and I heal myself of past and future transgressions. The most powerful way to communicate, is in front of a mirror.

Every time I have talked to myself in the mirror, it has been a really moving experience. When you look at yourself in the mirror when you are laughing, or crying, or whatever emotion you are feeling in that moment, you are kinder to yourself later. Because you remember you, as if you were your own best friend. And we should be our own best friends. Because we don’t talk to our best friends like we do ourselves.

I’ve learned that practising self-love is a work-in-progress. It takes time to address each organ/function in your body. I suppose it’s a lifelong journey in fact, but one that I am so here for now! Here to listen and learn, above getting it right all the time.

When I first addressed my body properly, it was a very emotional experience. I was moisturising myself after a shower, in the mirror, and I thanked each part of my body as I touched it and gently rubbed in the moisturising cream everywhere. I felt emotional because I also felt like I was carrying a lot of shame and guilt for having ‘poisoned’ my body with my choice to have certain experiences, around alcohol, for example. These realisations came to the surface with tears and in thanking my body I freed myself from their hold over me, because I could forgive myself in those moments too.

I thank my body, forgive my body, and love my body.

I thank myself, forgive myself and love myself.

C is For… Courage

For most of lockdown I was struggling to sleep and eventually my insomnia led me to hospital, the only place that made sense to go to really. By declaring that ‘I am COVID-19 and must be stopped to save everyone from all of the world’s suffering’, it was clear that I was really unwell. They took me in to do some tests and I was sent home with a sleep aid. I was still struggling to sleep at home so I was back in the hospital the following night.

I had a chance to sleep there on one of the wards, on a sofa bed thingy, right next to my brother who had come with me. But whilst he dropped off to sleep straight away, I still struggled to ‘switch off’.

Since I had shared already that I’m autistic (as it means I prefer to be told about things before they happen), one of the nurses gave me a box with the label “Distraction/Sensory Toys” on top of it that another autistic woman had donated to the ward before. I thought this was incredible. I’d never been validated like that before.

I open the box.

The first thing I see is a little yellow book that says “YOU ARE AMAZING” on the front of it. It had motivational quotes inside it. I asked the nurse to pick a page at random, and then I did too. We chit-chat over the quotes we both got, and both agree that we are both amazing.

There were also numerous types of sensory toys with different textures and all sorts. I couldn’t decide between these two: a soft little panda with crescent moons each cradling a star in the sky for eyes; and a green squidgy one with floppy ears and big eyes. Both were really cute but I fell asleep cradling the green one in both my hands like a crystal ball, in the end. I don’t know; I just felt safe with it and managed to fall asleep with it, without any meds.

When I woke up, I found out why I felt safe. It wasn’t because of the sensory toys validating my autistic self. It was because of this beautiful black woman you see in the photos. When I asked her for her name, she said something like Elizabeth – I don’t remember the chosen name she gave me. But I do remember the name given to her at birth. Because I ask her: “But your name badge says Rudo. Is Rudo your name?”

“Yes, Rudo is my proper name,” she replies with a really warm smile.

“I have a really good friend called Rudo, too,” I tell her.

“Really? Because it is unusual.”

“Yes,” and in that moment I realise I never asked my friend Rudo what her name means. So I asked the nurse instead.

“Rudo means ‘love’ in Zimbabwean, where I am from” she said.

I was so moved, I cried.

I realised I felt safe because I felt connected to my good friend Rudo, whom I love dearly. Finding out in that moment that her name means LOVE was the last thing I needed to courageously continue on that path that night. Following that path lead me to a safe place called City & Hackney Centre for Mental Health, which in turn lead me to recovery from my mental breakdown, which is where I am now.

We took a socially distanced photo that connected us with this toy, so I could share this story with my friend Rudo. Thank you, Rudo, for shining your super bright light in the darkness when I needed it most.

I want to thank everyone who messaged me after noticing I abruptly ‘disappeared’ from my online platforms almost 4 weeks ago because of this mental breakdown. Thank you for messaging me and I’m sorry I couldn’t reply to anyone. I feel really blessed to have so many wonderful people in my life who care about me; thank you from the bottom of my heart.

[reblog] The Empathy Conundrum

I have printed out the end of Musings of an Aspie’s post to put in my Christmas card to my brother. This blog articulates exactly what I feel.

Particularly:

“Empathy has many definitions, but they all have at their core understanding the emotional state of another person.

When I say I lack empathy, what I mean is I have a deficit in understanding the emotional states of others. Hell, I have a deficit in understanding my own emotional state at times.

[It means] that I may need more information than a typical person to understand a social situation. That my reactions to your emotions may be unconventional. That I have to work harder to grasp what comes naturally to most people.”

This post strikes a chord with me because it explains why I am told that I appear ‘cold’ when inside I am feeling too much.

Musings of an Aspie

Let’s get the hard part out there first: I lack empathy.

By lack, I don’t mean a complete absence of empathy; I have an empathy deficiency.  If most adults are “doing empathy” at the calculus level, I’m still in Algebra II and solving for X in ways that would make your head spin.

Before I discovered the online autism community, I assumed that my impaired empathy was typical for someone with Asperger’s. Much of the published literature includes impaired empathy as a common AS trait. “Lack of social or emotional reciprocity” is one of the diagnostic criteria. My own experience didn’t disprove that.

Then I discovered the online ASD community and suddenly felt like I needed to hide my struggles with empathy. Everywhere I looked people were refuting the notion that autistics lack empathy.

Again and again I’ve encountered discussions about empathy online and quietly slunk away, feeling like there…

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