I wrote this two years ago after the Paris attacks. They really got to me; I remember my mum was staying and the morning after the attacks we went – with two year old Sam – into Birmingham on the train and it felt about the bravest thing I’ve ever done. But I was so glad I did it. And those events in Paris, they made me think about the kind of person I wanted to be, a lot. About being that person now. About giving all I can to make the world a better place and what that might actually look like in practise. And this I wrote a few days later, about what that was looking like for me in that moment.
So something that happened to me was that about 18 months ago I started to believe that God was talking to me (you know, not actually audibly, I’m not going to open up to that level of crazy just yet ;-)) about my voice. Like, with a capital V.
Now something I should say at this point is that talking is not something I do, at least, not sober. I go really red when I have to speak about anything important, and look at my feet (and I mean, *really* red). I took several consecutive weeks off school to avoid making my GCSE English presentation. When I was in my early 20s, I had a period where I struggled with fear of throat cancer to a really insane extent. I really believed I had it, and that no-one was listening to me. Eventually one of wonderful the GPs I kept harassing realised that really I didn’t have anything wrong with my throat at all & referred me to someone who could help. The counsellor I then saw, a magical lady, told me that this belief I had throat cancer had to do with me feeling unable to use my voice. This is just to paint the picture that there are some really deep seated issues with my self expression.
So when I started to feel like I had to find – and even worse, use – my voice, I was like, really, God, are you sure. Maybe you could be thinking of someone else. This isn’t me. I can’t do this. For a start, don’t you need some kind of status to speak up about things? Education, a career, a voluntary position – anything that brings recognised expertise in some form? Who am I? I don’t have a career, any paid work, or any recognised expertise. And the biggest thing, behind all of these, is perfection. Shouldn’t I wait until I have life all figured out before I put my head above the parapet? Isn’t there some kind of level I need to reach before I can start, I don’t know, being real?
But then I really started to think about what I believe. And something I believe and have staked my recovery on is that I was created good and for a purpose – and that all of humanity was. And if I am created good and for a purpose, then from that perspective, it makes total sense that I am / you are worthy of being of being heard, and I have all the worthiness I need already. I am a child of God. You are a child of God. And we all have a good song to sing. And that is now – in the mess and imperfection. Because if we wait to be perfect, it never happens.
And then – and then – I came across this lady‘s work and it really brought that alive – not to rely on other’s words or pictures all the time, but to find my own sometimes. And it is really scary. Every time I post something that is in my words, it’s terrifying. I always feel like I should be better educated – more religious/less religious – saner, and that I’m being judged. But it gets a little easier each time. And each time I take a risk I remind myself that I will do it imperfectly and that’s OK. And my life gets a little freer. It has led to activities & experiences I wouldn’t have had otherwise. It’s exciting.
I’m not there. There are so many things I would want to do and still think no, I can’t. This isn’t coming from a place of having this all figured out perfectly. I have and do embarrass myself along the way, and yet I don’t learn and do it again.
But what I really want to do is this. If my sharing can make Facebook a little more vulnerable, a little more real, a little more raw, then I will do that.
And also I want to say this – if you have things you want to say or do, but you ever think ‘Who am I?’, know that you are not alone. And don’t listen to that voice (or if you do listen to it, as I do, then pretend like you can’t hear it). You are good. You are worthy. The song you have is worth singing. You are a child of God, and you are beautiful.
And this might not seem the most connected to what is going on in the world right now, but imagine this: A world where we never have to doubt our worthiness in speaking authentically & belonging.
And really, we all feel so powerless against evil, but when we are our authentic selves, I really believe it liberates those around us to be their authentic selves also (you know that famous quote!). We need those good authentic songs right now. They make us powerful. At least, I hope they do. They might not seem big, or dramatic. But they change the spiritual atmosphere around us, and that can reach everywhere…
P.S. My love of Brene Brown inspired me to write this… I love this lady’s work so much. Listen to her talk if you have 20 minutes! (Even if you don’t, listen to it anyway. You won’t regret it.)
So in the last week it’s been Mental Health Awareness Day, and also the Wave of Light, which raises awareness for baby loss. These subjects are really close to my heart, so I did what I do… and I wrote a Facebook post for both.
Lately it often feels like all I do is raise awareness for stuff on Facebook. Pete once joked I have “Syndrome Syndrome”… I think I was pregnant and was trying to remember all the diagnoses I had to tell the midwife at the time. It’s a bit stressful having to remember them all, and I usually forget at least one. And that’s often how I feel, that I have a long list of things that are important to me and described in various terms, and I could do nothing but write Facebook posts about them all the time and yet would still never have enough time for that.
I love to share my stories. It started out being incredibly terrifying. I still remember posting about my Borderline Personality Disorder diagnosis on Facebook, more than three years ago. I couldn’t go back on Facebook for days afterwards as I felt so embarrassed. But I had to write that post, I can still remember the feeling of inspiration coming over me. I have learnt to succumb, when I get that feeling. I still resist it sometimes but I find myself doing so less and less.
I consider myself a pretty open person, these days, but I wasn’t always. In fact I challenge myself to be so open because of the things that have happened to me.
During my time at school, I was terribly bullied. It happened every day.
It wasn’t so much the specific incidents that hurt, as it was getting up every day and going to school to be rejected by 95% of my peers. I thought so little of myself that I allowed the person I thought was my best friend to bully me too, she played me and another girl off again and sometimes would decide not to speak to me for weeks on end for no discernable reason. I didn’t really question it. We were all really low on the popularity pecking order but I was the lowest. And even after she decided arbitrarily not to be my friend one day in year 9, after my heart broke, I continued to seek her friendship for another two years.
Nobody wanted to sit by me. In my GCSE years I had one (lovely) friend who used to sit by me when we were together in class, but when I wasn’t with her I didn’t have anyone, I was everyone else’s last choice to be associated with. When your peers reject you, it affects everything about how you see yourself.
Lunchtime was a constant struggle to find companions to protect me from the bullies. Every lunchtime, afraid.
I was the last to be picked for the PE teams.
I was often looked down upon by my teachers because I was so unpopular, and they made no effort to hide it. Some teachers were lovely and above the playground stuff, but some – the ones the kids looked up to, often – weren’t.
This happened for 7 years.
From the beginning of year 6 to the end of year 12. I moved schools to a boarding school for the start of year 12, but it was just the same at the new school. I think because I expected it to be; I thought that was who I was.
At the end of year 12, I decided enough was enough and I moved half way across the country to live with my lovely Grandad, who sadly died earlier this year, and his wife, my stepgranny Eva. I restarted year 12 and went to a sixth form college.
I don’t know how I decided that and why. It took a lot of courage and I don’t know where I found it but I’m glad I did.
I moved in with them and decided I would wear a new personality over the top of my real self.
So nobody could see me.
See, it never occurred to me that I didn’t deserve the bullying.
That there was anything wrong in the way I was treated.
I thought it was how I should be treated, and I thought it must be obvious that I was the kind of person who got bullied, so I needed to become someone completely different.
I strove very hard to hide the fact that I was bullied from anyone, during the bullying and afterwards. Even my family. Because I thought it was a defect in me causing it.
I didn’t know who I would tell, either. That telling could make any difference. Because it was me that was at fault, and it didn’t occur to me that that could change.
I lied; I stole money; and I made up illnesses and took time off school, because I was too afraid to go in. These were my coping mechanisms. And I was deeply embarrassed and ashamed of all the lies and the theft.
I was very angry and sad, and I used to lose my temper frequently at home.
Life was so exhausting, carrying all of this shame around. I was very suicidal, both as a result of the bullying and as a result of conversations had with my dad about climate change. I couldn’t see a future or a hope.
I started to believe I was very evil. That God hated me (I wasn’t brought up to believe in God but somehow that slipped in there). That I would die and be punished afterwards for being unable to save the world from climate change. That I deserved that. That only bad things would happen to me. I can only have been about 13 or 14 when I started having these thoughts.
After I moved and started to be this other person, I made friends. I was so happy to have friends. But I was so terrified all the time, that they would find out who I am and drop me.
I obsessed about what to wear, because I thought I had been bullied for being too ugly. I tried to paint a perfect picture over the top of this gaping hole inside, a perfect image – made up, slim, glamorous, athletic. If I looked OK, everything would be OK.
I look back at pictures and think, I was gorgeous, but I felt so hideous.
I drank a lot to get by socially.
I thought I had been bullied for being too clever – while I simultaneously thought I was really stupid – so I avoided studying. To be honest I couldn’t care less about studying at this point, as getting good grades had brought me no happiness, and no matter how good my grades were at school, I was always told by my school reports that I could have been trying harder.
I was referred to a counsellor at college. She meant a great deal to me, but it never occurred to me to tell her about the bullying and my fears about the future. I thought had to hide it even from her, because she would reject me if she knew.
I couldn’t make a relationship last, because there was nothing to build it on, and I didn’t genuinely connect with people as I was trying so hard to be someone different.
When I was 21 things started to change. I met my first boyfriend. He was a very real person. He had been through a lot. And I started to break down.
I think it was him I told first about the bullying, but it might have been one of my best friends. We worked together at the time, the three of us. The weight off my shoulders for speaking the words out loud was immense. (Thanks to both of you for being those safe people, if you happen to be reading!)
I told another friend the next year.
I told my parents. That was hard and I had to write it in a letter.
I have had a lot of counselling since then. Years and years. I’ve learnt to talk about the things that happened to me until the cows come home.
When I met Pete, at 23, I realised I didn’t have a clue who I was. I knew absolutely nothing at all about myself, and I decided I wanted to find out. I was having a breakdown at the time and things were pretty bleak. I had also lost some of the people I thought were my closest friends during my breakdown, and that was obviously some of my worst fears come true. But, by this time, I had started to develop spiritual beliefs, and I decided, God made me good and I’m going to find out who that is. And somehow that will guide me out of all of this.
I knew I needed to do it because I wanted children so desperately, but I needed to understand what had happened to me, to prevent it happening to them.
I had this wonderful partner and we dreamed of having a family but we knew it would be hard for us. So I felt like, I need to earn these kids, who will be so special if they come. They deserve more than a mama who lives like this.
Pete was amazing at understanding. Every day I walked with my dog and I thought about God and how he had made me good, I really thought about it, and I talked to Pete when I needed to – there was nothing I couldn’t share with Pete – and he didn’t try and fix it but he listened. And I saw professionals. And I learnt, not so long ago, that what I had been doing during this time was rewiring my brain. Creating new connections.
No longer living under shame has been amazing. It’s been very gradual. It didn’t change all at once. Layers of shame were lifted gradually. Now, I refuse all shame, but it’s taken a lot of practice and support to get here. I know I am OK as I am.
I believe that everybody else is, too.
When I started telling my stories publicly, it was a way for me to bring things out that I felt ashamed about – my BPD diagnosis, for example – and to refuse to give them that power. Because I found that once I got past the initial embarrassment, I felt much, much free-er. Unencumbered.
When I found out about my aspergers identity, that was tough. That hit me with a load of shame. But because I now have that grounding of believing I was made good, I shook it off pretty easily. It didn’t feel like it at the time, it felt impossible, but actually looking back I had become resilient enough to withstand it and to see it in my own way.
And right away from the moment I realised I have aspergers, I knew I would deal with it by writing about it publicly. I knew that it would be tough but that it would help dissolve any shame I felt. That it would help me claim what I perceive to be the positives in my own identity – and those of others like me – and that it would help me take hold of what I should have had from the start; a joy in who I am, in the way I am made and the things I can do.
The world sees autism through eyes of shame, but I don’t have to align myself with that, and I don’t believe God aligns with that, either. I choose the power I give things – do I agree with the way autism and other such diagnoses are presented to me, or do I take what is useful to me and leave the rest?
Although it was a tough moment realising I have aspergers, I knew that at the same time it was an amazing gift and a promise of new life, but that that would only come through fully embracing it.
When we take a step out to break agreement with shame, we are able to liberate others, too. We see their issues on a new way. We can offer hope. I want to do that. I want to do that with autism, and with everything else I have been through too.
And that’s really why I talk about my stories. I do it because it’s freeing to me, and that helps me in all sorts of ways. It helps me love others, because I’m carrying around less pain myself. And I do it because I hope it’s freeing to others, that I can help enable a non-judgemental sharing space.
I want to use my life to make a difference in the world. To prevent people from feeling the way I felt. All I really have to offer in that aim are my stories. I don’t have a degree. I don’t have a career. I don’t have any status, really. But what I do have is my voice. And that I will offer.
I was assaulted by a stranger once, on an escalator on the Metro in Paris. I was there for my 16th birthday. I couldn’t get away, the escalator was packed, I was blocked in forwards and backwards.
Someone I love and trust was stood just in front of me, but I didn’t tell her or anyone else. I thought I should have yelled at the time it happened, and I felt ashamed that I didn’t. I thought I would be told off for not having shouted at the time. I somehow thought it had happened because I deserved it, to be treated that way, that maybe I had asked for it? (By standing on an escalator? By being out in public? By being in a crowded place?)
But I had been too scared to know what to do in the moment.
I was never taught what to do in the moment. I was never taught what to do afterwards. Of course I wasn’t. We always want to hope that our children will be the generation that has it different.
I didn’t see the person assaulting me, and I often think, how many others did they do it to?
I almost didn’t post this. There are so many other battles, all the time, clamouring for my attention. I’m like, really?! I have to open myself up, again?!
And I feel so much safer since I’ve been with Pete.
(Safer. With the “r”.)
And that’s why I have to post it.
Because I want Eleanor to feel safe whether she finds a “nice man” or not.
I want her to go to Paris, to take up space in the world.
And I don’t want Sam to have to carry around being a “nice man” for someone else. I want him to be free, too.
They’re closer, now, to the age I was when I was assaulted than I am.
These past few months, I’ve been really enjoying finding and re-reading things I’ve written over the years. It helps me appreciate and start to understand what’s happened over the past three years; how my life’s path has changed and developed. I wrote this a couple of years ago, when my anxiety was really, really bad; telling me to be quiet, to stop talking, to make myself small, that I had nothing to live for except to die. And I was trying to find my voice in that; trying to find the strength to keep going. So here is what I told myself, it helped me; I hope it might help another person out there, too.
As a teenager I worried constantly about the end of the world. When other kids were possibly thinking about friends & schoolwork, I was thinking about how I shouldn’t have children in case the world started ending during my pregnancy. (True story. I was tons of fun.)
When I first started going to church, 7 years ago now, those worries were sealed off. It was like I couldn’t see those things any more. And I thought that that was what God was about.
For a long time, having a baby represented a mythical ‘everything OK’ that I was working towards. I couldn’t have a baby so everything was terrible, & if I was able to have a baby, everything would be OK. Everything would be stable. I would have a future.
And then Sam did come along, and it turned out, he was not my unicorn. All these huge & much bigger baddies sprung up in the hole left by my now-absent infertility – some I’d grown up knowing about, & some new additions too. And it felt like this was wrong – that I was doing something wrong that allowed these worries purchase in my life.
But what I’m realising in this is that God wasn’t ever about taking me to some nice place where things could plateau.
Through Sam He didn’t give me a reason to relax, He gave me reason & strength to get nasty with the things I don’t like. And instead of feeling like I’ve done something wrong, I’m feeling trusted.
I am beginning to feel that my life being what it is meant to be has little to do with what evil is up to. I’m beginning to feel that life can be what it is meant to be when I can look evil in the eye
‘I’m not out.
I see you for all that you are. And yet I’m still here.
You’re really big & I’m really small, and I don’t have much to offer, but what I can offer I will.
I will not beat myself up for the myriad of ways I fight imperfectly.
I will celebrate every effort with joy, and I will bestow upon myself all the breaks I need.’
When I feel fears at the moment, I tell them ‘you are welcome here’. It helps, it really helps. They lose some of their power and I stop fighting with myself.
What I have realised is that what fear fears is your voice. Your authentic voice is entirely unique & it is powerful – & that is why dictators and terrorists act in ways that are designed to stop people speaking. That is what oppression is – the taking away of our voices. The stories of Jesus, Gandhi & MLK carry such universal & enduring appeal because fear tried to take their voices, it threatened them with everything it had, and they resisted, even to death. And as humans we love that story.
What I want to say is this. Your voice is unique & beautiful. Authentic self expression is the basis of all that we consider work on our planet. Fear can have us believe that our contributions are meaningless, or that we will lose out if we express ourselves. But the opposite is true. Your unique contribution is all that you have to offer, and it is the most powerful thing that you have.
Fear likes us to think that we have nothing to offer, but that’s not true. We all have something to offer, the very thing that disempowers fear the most – our authenticity. And let me tell you, when you are your authentic self, it strengthens me. And my hope is that when I am authentic, it strengthens you. Individually our authenticity is powerful, but together it is something more wonderful still.
The stories of Jesus, Gandhi & MLK are not the stories of powerful people. They are the stories of people who were oppressed, and lived anyway. We are all afraid. Jesus was afraid. We can be afraid, and it can take nothing away from us.
Your fear and my fear is not the sum of us. We can be all that we are meant to be, and we can offer all that we have to offer. Our somethings are very important to the world.
I found this a few months ago; I had written it at Christmas time last year, not long after Eleanor was born. It’s the most painful thing I’ve ever written, so I don’t want to share it without a little backstory…
When I wrote this I had not long come out of postnatal depression. It had been 2.5 years. I knew I needed to get things back on track, but after that long I felt so totally overwhelmed that I didn’t know where to start. Sam was a different child when I emerged from my depression.
When I was depressed I was in a sort of cycle where I was depressed and at the same time parenting Sam was becoming increasingly challenging, and the two things were feeding each other. I was depressed, so I felt to blame for his challenges – and then Sam’s challenges isolated us, which increased the depression… Things felt impossible a lot of the time.
Writing that moment down somehow pushed things forward. Something happened when I wrote this. I found some more energy. Not immediately, but it happened. I made a really simple change in our life (limiting screentime until after 4pm). The new energy felt like an answer to prayer, the letter was the prayer. Things aren’t perfect now by any means, but they are different, they are improved. Sometimes things still feel like this, but less often than this time last year.
Social media has this strange ability to whitewash parenting, to make it look somehow easily manageable. So many “how to” articles go around – “change your child’s behaviour with this one easy step!” “Become the parent you always dreamed through these three simple ways of connecting with your baby!” You get the gist. I often feel that I’m the only one who doesn’t manage these things.
I’ve found I’m the best parent I can be when I accept my limitations (and my child’s) and relax about them, letting go of that perfect parent and child image that is everywhere. I wanted to share my most vulnerable experience in the aims of being a bit more relaxed and honest about being a human, really.
I have a long way to go still, in understanding myself and understanding my children, in loving myself and loving them. When I read this I remember how worth doing it is. I remember how important my job is. What I am aiming for.
When I read this – written at a time when I felt responsible for so much – I’m amazed to see how the burden has shifted since. How many people have come alongside us. I still feel that burden of responsibility and care, of course, but it feels lighter. Like something I can use to make things more beautiful.
So, I share it out of honesty and also hope.
Oh my beautiful boy.
I think back to when you were tiny, sleeping on my chest after a feed, so cosy and tight, and I wonder, how did you become something that we aim to manage?
How did our days become about achieving the least resistance possible – stickers, special treats, and getting you out of the door for preschool on time? About stopping you scaring your baby sister with your over zealous love; always, always living in a battleground between your needs and mine. (And your dad’s, and the baby’s, and that dog’s, and the rest…)
You deserve so very much more. I remember when I brought you home from the hospital, and I cried everyday for the wonder of you. You deserve a mama and a daddy who wake up everyday, delighted for another day with you. And I’m sorry. I’m sorry you don’t have that, I’m sorry this mama and daddy find you too much.
You, my boy, you make the moon in the sky and the stars that shine. When you say to me, mummy, you’re a superstar, my heart skips a beat. When you kick me, I wonder how I could be failing. When we sit under a blanket together, that’s life.
The heavens opened when you arrived. The boy I shouldn’t have had – promised by God – here you were. I lived on a cloud, nothing could touch me now. I remember so carefully sitting up in bed to feed you every time, because I was too scared to fall asleep beside you. I remember how you woke every 2 hours and it didn’t occur to me to try to fix it, you were just you and I was so grateful for everything that was.
When did that change?
When did it become that everything you do is wrong, that you carry yourself shyly at times and apologise for existing? How did that happen to you? How did it become that I fear you, that I don’t take you places in case you lose it and embarrass me? That every time I look at you, all I see is our failings, etched over your countenance?
I look at your sister and think, we’ll do it better this time, because we’re less anxious. You carry everything, you carry all our focus, all our corrections, all our hopes and fears. Everything you do feels scrutinised to me. I can’t count the times I’ve thought, I hope your sister isn’t like you, I can’t do that again.
How did it come to that?
How did we come to live in a world that little active boys are a problem, that there’s no room for play fights and working out aggression? No room for running around wild and free? A world so dangerous and not built for you that we have to keep you locked up with a screen.
I’m so sorry. I wish i could do it all again. I wish i could go back and care less about the aggression, and celebrate the person you are. I wish I could go back and feel less overwhelmed, I wish i could go back and enjoy those moments instead of sitting around in a dark world waiting for ISIS or Ebola or climate change to get us. Two years, two years we lost. Two years. Two years of fighting every day, fighting my guilt for bringing a child into this world, fighting the desire to check out, two years of worrying whether my God exists and imagining dark deaths every time I close my eyes. Two years of learning to say, I can’t protect my baby and that’s enough. I don’t know who God is and that’s enough. Two years of learning to say, this moment is it, I can’t control the future and that’s OK. Two years of asking God to send me somewhere else or remake my decisions, two years of asking him to keep you safe, two years of being so afraid of death that I forgot to live.
I’ll never get those years back, my love. We’ll never get those years back. I can’t go back and remake myself into a better mum, a mum who sleeps and bakes and limits your screen time. What we had is what we had, just you, me, my demons and that bloody screen every day. And it’s not going to happen any more. You will feel like the special little boy I brought home that time. Not because I say it, but because I make you know it.
You will feel like all that you are.
I’m so sorry. I wish you had had the mum you deserve, but something I know is that you made my world, you made my world when you came home that day, and you make my world every. single. day. You are it.
You make the moon in the sky and the stars that shine.
**Disclaimer: I only write from my own experience, and don’t intend to write for anyone else’s experiences, around aspergers or anything else.**
The other day, I was sat in the car, thinking about how I’m not allowed “regular” interests any more, since I was diagnosed with aspergers. I can’t remember what prompted this thought. We were on holiday. But I was thinking about how different aspects of my personality are pathologised now, and that got me onto a post I’d seen recently on Facebook, about how difficult autistic children’s “obsessions” are for the child’s family to deal with.
I wonder if people know when they like and share these articles that they mean me.
I wonder if they see me, aged 8, and my interest in the Tudors; reading history books aimed at adults and desperately trying to share my interest with my teacher, who didn’t seem to want to listen. (I learnt young that people weren’t interested in what I had to say.)
I wonder if they see me, a teenager, and my interest in clothes; bullied at school and planning all the things I could wear differently to avoid the eye of my peers.
I wonder if they see me in my twenties, staying up late reading about birth; so rapt in birth stories that I would read… And then just another one… Until I realised it had become 2am.
I wonder if they think about how I feel, seeing articles talking about how difficult it is to live with me.
I am weird, I am other, that’s the prevailing view of autism, that’s the loudest voice and the one that seems to get most likes and shares.
But from another point of view, I can have very focused thinking which can be an amazing advantage. I only realised I’m like this since realising I could be identified with aspergers. Realising this about myself has boosted my self esteem no end… As long as I remain in my own head enough and stay away from too much conversation “about” autism as an entity.
If I really want to do something, I can almost always find a way to do it. I learn about things very very quickly, I do this without realising. If something piques my interest, I’ll read all about it, and if it’s really really piqued my interest I’ll learn all there is to know about that subject. Sometimes this can be something that doesn’t have much daily relevance, like with the Tudors, but the older I get, the more useful it becomes.
I don’t mean to sound complacent or arrogant about this, but it really has been such a life transforming revelation to see this in myself after 30 years of seeing myself as stupid and not good enough, and I’m totally going to own it baby!
I used to have a birth phobia; it caused recurrent nightmares and led me to decide I didn’t want children. In my twenties, after I met my now-husband and started to want a child, I naturally started to research birth, and what started as a mild interest quickly became something I probably knew more about than some midwives (in theory not in practise!!). Doing all that reading totally eased my phobia; it gave me ways to prepare for birth practically, and it led to two challenging and differently empowering and wonderful birth experiences. Neither of my births were quick or straightforward, and I had to navigate different obstacles with both. All that research stored away inside my head helped me to know what was best for me, and to navigate those situations relatively easily.
When we did IVF, for months beforehand I read everything there was to know about the process and how to prepare for it. My life was IVF. Again, that stemmed from anxiety, and wanting to overcome the anxiety rather than be controlled by it. I remember my counsellor saying afterwards – I’d been seeing her a couple of years – the way you handled the IVF process impressed me so much, you just put your head down and got on with it, and you knew all of the steps so well. I was so surprised and touched that she thought this of me. I had always seen myself as such a flake – the person who failed at standardised learning, despite what teachers kept referring to as “potential”. I think that was the first time I started to take notice that I have this ability.
By far the biggest gift I have seen from this way of being has been in tackling my mental health. When I met my husband, I was 23 and having a massive breakdown. With his support, I was able to pause and look at the situation.
I decided I wanted to really understand what was going on, and to rehabilitate myself into society. I had not long walked with my ex through the loss of his parents to addiction, while also spending time with them at a rehab facility. I also through those situations got to know addicts who had overcome their addictions and who talked openly about their experiences. I watch things and learn, and decided I wanted to employ the tactics of acceptance and recovery I had seen through them to my mental health. Watching their deaths shocked me into realising that that could be my reality, too – I had also engaged in self injurious behaviour to cope with the pain underneath. That experience led me to realise that if we had children, they would carry the weight of my unprocessed pain.
I moved to live with Pete, and decided not to go back to work when my sick note ran out. I set about to create a therapeutic lifestyle and to allow myself to feel all the repressed pain I was carrying around – to cry all the hurt locked away – believing that suppressing it was causing my depression. That was the moment I started to get a glimpse that when I need to tackle something, I’m strong minded, able to see new and creative solutions to problems, and have the willpower to push them through.
In creating this therapeutic lifestyle, which is always a work in progress, I have discovered ways I naturally handle change and process trauma. When I was allowing my childhood trauma to come up, I would watch seemingly endless episodes of Criminal Minds, really late into the night. Years later, recovering from a C section, I held my newborn daughter and watched infinite back to back Say Yes to the Dress. Entering even a pretend world that is predictable, formulaic, and contains familiar characters is comforting when things around me are unsettled; it helps me cope with my own transitions.
I function best when I allow these things to flow naturally and do not attempt to set limits around them (as parents are often encouraged to do for their autistic children). I move on from an interest when the need has been fulfilled. Particularly when I was recovering from my breakdown, I found it very healing to allow myself whatever I needed – it felt like reclaiming my needs and my personality.
All my life I’ve relied upon rituals. These encompass everything from the benign – washing my hair and shaving my legs on alternate days – to the cancerous, at one stage counting and restricting my food intake while also pursuing a punishing exercise routine.
In my young adult life, I was convinced that the right routine would bring me the stability and ability to cope I so longed for. If I couldn’t fulfill my expectations – if I was injured and couldn’t exercise, for example – my whole life would fall apart. However something I’ve noticed is that the more and more my lifestyle encompasses my needs, the healthier and more balanced my routines are, and the more adaptable I am.
Many people have a need for routines, and my husband does too, something he accepts in himself without judgement. That has helped me a lot and we complement each other in that way.
Having my diagnosis gave me the freedom to realise that these ways of thinking will never leave, they are an important part of me. As I have grown to know and love myself through the years I’ve been working on my mental health, the changes I’ve seen in my need for routine have echoed the positive changes in my broader patterns of thinking.
I do still experience struggles with my way of thinking. It’s only since my aspergers diagnosis that I’ve realised I could be identified with a form of OCD called “Pure O”. I struggle with repetitive intrusive thoughts and imagery of a devastating apocalyptic future, and within that images of horrendous violent things happening to me and those I love. It started when I was 12 after my dad (who worked in the field) started talking to me about climate change. After that I spent my teens feeling suicidal with no reprieve from my thoughts, because I had no tools for tackling them. They then came back three years ago, triggered by the responsibility of becoming a parent.
It was actually due to the return of these thoughts that I ended up realising I have aspergers, and after I realised about my aspergers, I thought, I can sort this fear out, because I am made with the strength of mind to do it. I have examined my fears inside and out, I’ve sat with them and learnt from them, and my ability to focus has helped with that. It is getting better, a LOT better. I’m no longer suicidal when I think about the challenges the world faces, which feels like an amazing achievement. It’s probably the thing I’m proudest of, because the thing that has changed isn’t me no longer seeing the world as hurting and broken – I still see it as I did. I’m still concerned about climate change (to put it mildly!) and a lot of other things beside. But I have come to respond to those fears differently; I don’t get the intrusive thoughts any more, and when I do I know what to do with them, and that’s very freeing indeed.
The other thing I struggle with is that, because I focus hard, I can’t really focus on more than one thing at once. My focus isn’t directed, it goes unbidden to what interests it, and I can’t multitask, like apparently women do so well (eye roll). It’s a real pain when it comes to running a house, preparing food, etc. But something I find is that since I appreciate what my brain CAN do, I worry much less about what it can’t.
Overall I am grateful for the way my brain is made. It’s imperfect, but whose isn’t? I’m learning to understand and appreciate the way my brain works all the time. Since my diagnosis, I look back over my recovery, and realise that what I have been doing all these years is learning to accommodate and accept my autistic needs… And that as I’ve learnt to do that, my brain has been increasingly able to do the things it is good at. I feel beyond privileged to live in this particular unique time and place which has granted me the opportunity to learn to love and understand myself.
I wonder whether, if I hadn’t had to use my focus to reclaim my mental health, I might have spent my twenties using it to study for a PhD, set up a charity, or run marathons. I speak about my diagnosis for those people diagnosed with autism and aspergers growing up now; adding my voice to the conversation about how to support them in the hopes that they will be able to use their brains in ways I wasn’t. Because you know what? The world needs brains that can multitask and uphold the fabric of society, but it also needs brains that have a good sense of detail, are able to focus entirely on a project, and are willing to challenge convention.
However your brain works, I think it’s important, and you deserve to use it to the best of it’s ability, for the benefit of the world. If you can’t see that right now, please just trust me on this, and hold on for a time when you can. You have a good purpose.
Despite everything I’ve been through, honestly? Even with everything, I wouldn’t change a single thing about my journey, because through it I’ve been able to find such happiness. The challenges and the dark times make the sunshine and the love of my little family so much sweeter. And I’ve faced enough challenges now to know, if I hold on long enough, the sunshine always finds a way back.
This is my favourite article on autistic “obsessions”. It’s awesome, read it
This is a page of links to useful resources about aspergers in women, with a table of typical traits.
If you relate personally to anything I’ve written, you might find it helpful to learn about the “Highly Sensitive Person” – here is a good place to start.
Ministering to myself often feels like crying. Like hopelessness. I sit in the dark, forgotten corner, amongst the washing, and mourn. I mourn for all that is not, for all that I have lost and for all that I have known. I acknowledge the darkness of the world, of my experience. And for a time I feel like I can’t go on, I feel as though everything is too much.
But then, after a time, I arise, tears fresh on my cheeks, but now dry, unseen. And I go back to my children, to my husband, to my dog, to the land of the living. I take with me a bleeding heart, an open heart; I feel raw, unsteady, skinless. But I take with me also something new, something fresh: hope. Having yielded to my pain, my eyes can now look beyond me again, they begin to look outwards once again, to them. Not healed, still broken, but with something now to give.