Finding HopeSituation Specific Mutism
Posted on January 12, 2019
I first found myself unable to speak when I went to see the doctor for my anxiety and depression, although I didn’t know that that was what it was at the time. I’d been referred to the ‘Wellbeing Service’ by my GP (who I’d been seeing since childhood). I have always struggled with anxiety and so my Mum – my hero – came with me to provide support and any extra relevant information I might forget in the moment.
But the anxiety built and built. I walked into the room and sat down and in that moment, I stopped being able to function. I felt like I had this massive weight on my shoulders, so heavy that I physically couldn’t lift my head. I stared into my lap, unable to move. I couldn’t even move my eyes. And even if I could have, sustained eye contact felt impossible. That’s something I still struggle with (there’s a blog post about that here). The meeting of eyes feels so incredibly personal, like they’ll see all of me or I’ll see all of them.
And I couldn’t speak. I knew what I wanted to say – I could just about hear my own voice in my head above all the anxiety – but I couldn’t physically say them. My throat felt painfully tight and my tongue refused to cooperate. I was trying to speak, trying to function, but I just couldn’t.
I was told that, if I wouldn’t talk, they couldn’t help me. That still upsets me all these years later because, to me, it seems so obvious that I was struggling with real, difficult anxiety. We walked out and suddenly the words exploded out of me and I was standing in the street outside, screaming and swearing and sobbing. I felt so abandoned.
From there, I went to a series of doctors and therapists but was unable to speak. My Mum spoke for me: we would discuss it all in detail before the appointments so she knew what I would say if I could. It was difficult and traumatic and I felt like I was getting sucked further inside myself with every experience of being unable to talk.
Eventually I ended up seeing an EMDR therapist called Mark. We sat on chairs in the middle of a big empty room that had a glorious view of London at night. Sometimes we sat on the floor and played dominoes. I couldn’t speak and I couldn’t look at him but after a while, we started using a white board and pen. Writing has always come to me more naturally than speaking. So he asked questions and I replied, filling the board with scribbles.
But in the end it wasn’t to be. Maybe it wasn’t the right thing, maybe it wasn’t the right time. We’ll never know. I ended up taking a break from all types of therapy. I just needed some space. And then, in the summer of 2014, I went to see a psychiatrist and I knew things had to be different. I couldn’t do it again. I needed to talk.
I don’t want to give the impression that selective mutism is a choice. It’s not. I didn’t simply decide to start speaking again in these highly stressful situations; it’s so much bigger than that. There was a shift inside me, an unconscious realisation that talking was the only way to create change. One of my parents describes it as “a leap for survival” and she’s not wrong. It was about survival, although I wasn’t conscious of that at the time. At the time, it was just another step in a long line of steps.
What I’ve learned throughout all of this is that everything changes. It’s like shaking a box full of puzzle pieces, trying to get all the pieces to land in their respective places. With every shake, it lands in a different arrangement and life looks different. Different things are possible. Sometimes it’s even enough to see what the picture is.
Somehow I was able to talk. I couldn’t tell you how. My psychiatrist has told me since that he didn’t initially believe that I struggled with social anxiety, and anxiety in general, because that first impression of me was so confident and articulate. He understands now that it was a matter of survival, desperation making once impossible things possible.
It’s been several years since I found myself unable to speak. Even though I continue to struggle with anxiety, it’s never again manifested in that form. But even now, I hate the phrase ‘selective mutism.’ It implies that there’s some element of choice, like I was (and others still are) choosing not to speak. If I could rename it, I would call it Situation Specific Mutism. I think that fits better.
I wish I could offer some wise words or some quietly brilliant advice to those still unable to speak. But I think the most important thing is finding someone who gets it and not giving up until you find that person. If it doesn’t feel right, it isn’t right. The right person – the person that will get you and make it work for you – is out there.
Somebody once told me the story of a boy who was only able to participate in therapy when the lights were off but up until that point, all the medical professionals in his life had refused to do that because it wasn’t how things were done. Sometimes it’s ridiculously simple but for whatever reason, people don’t want to make those adjustments. But there are people out there who will, whether that’s having someone with you, whether you need to write rather than speak, or use another medium to communicate. In my experience at least, sometimes you have to treat the anxiety in order to make communicating easier.
The last thing I want to leave you with is an app that might be useful. It’s called Emergency Chat and it’s designed for communication when speaking is difficult. You hand it over to someone and it shows a message that you can personalise to what you’re going through so that the other person can understand it better and then you can type back and forth, or not. The message itself may be enough.
I hope this has been helpful. And if you’re going through something similar, know that I’m thinking of you and sending good thoughts.
The Old New Year’s Resolutions
Posted on January 1, 2019
HAPPY NEW YEAR!! I hope you have all had a lovely, relaxing holiday period and that you feel hopeful about the year ahead. I’m feeling lighter than I have in a long time and for the first time in months, I’m actually excited about what’s coming next.
But, before we move on to the new year and all the new plans, I want to pause for a moment. This time last year, I set several resolutions – more like goals – for 2018. Now, 365 days later, I want to look back at them and look at how I did, whether I achieved them or not…
WRITE MORE SONGS – Technically, yes. I did write more songs. Not as many as I would’ve liked but more songs nonetheless. As I mentioned in my review of 2018, my depression seemed to completely suppress my creative brain so writing anything was a really struggle. But I’m cautiously optimistic about my songwriting in the near future.
RELEASE MUSIC – Yes, as I said in my halfway-through-the-year post, I have music out in the world (you can listen to my first single, ‘Invisible,’ here). It was a long, hard journey to that first milestone but we made it and I’m excited about what’s coming next.
FIND THE RIGHT MEDICATION – I found many wrong ones but, fingers crossed, I’m onto a good one. Right now, we just have to wait and see (my least favourite sentence in the world).
WORK ON BEING HEALTHIER – I feel really good about this one. Since August, I’ve been going to the gym and swimming for at least half an hour most days of the week and I’ve kept it up for six months. I’m so proud of myself and I love it so much. It helps me make sense of the world and it makes me feel really good. Food is still a daily struggle but I’m not restricting and I’m also not eating everything in sight. So that’s something.
BECOME MORE INDEPENDENT – I feel like I’m going backwards with this one. My depression has been all consuming and just as it started to let up, anxiety rushed in to fill the void. So I’m struggling here. I don’t know what else to say about this one.
READ MORE BOOKS – Yes! I definitely did that! My small, achievable goal was five books and I managed to read ten! So I’m very proud of my efforts in this department. Hopefully I can keep this up going forward.
IMPROVE MY MUSICAL SKILLS – This is another casualty of my depression. My lack of concentration and motivation has just made it impossible to do any consistent practice. Even when I tried my hardest, I couldn’t do it and then I’m really good at beating myself up over it. That’s another thing I need to work on. But as I’ve already said, I’m cautiously optimistic about things moving forward.
GO THROUGH MY POSSESSIONS – Well, I did that. We moved house and so I went through everything as I packed it. That was very overwhelming so I’m sure I missed stuff. I’m still creating a new order and finding things that I can throw out or give away but I made a huge dent in this resolution and I’m pleased with my effort.
So I guess it is now time to make some new resolutions. Watch this space…
2018 in Review
Posted on December 31, 2018
This year has been a struggle. Almost eighteen months ago, I made the decision to change my medication and that has basically been my life ever since. Lots of pills and doctors appointments but mostly dealing with the side effects, everything from nausea to shaking to a complete inability to think clearly. I don’t think I realised what a huge undertaking it was going to be but it’s not exactly surprising: you’re throwing all the chemicals in your brain and body out of whack. I tried Venlafaxine, Lithium, and Lamotrigine; I weaned myself off Venlafaxine, tried Amitriptyline, and now I’m taking Pregabalin and Clomipramine. This is the most promising combination so far and I’ve actually had a few really good days so I’m cautiously optimistic. But it’s been a long, hard road, sometimes so difficult that I wasn’t sure I’d survive it. And I don’t really feel able to acknowledge the good bits without paying tribute to the really tough things I had to go through and so got through.
The first of The Big Difficult Things was moving house. God, that was a struggle. Having thought that I’d found some sort of peace around it, when it came to the day, I was absolutely devastated. There were a lot of tears – from all of us. That house was my home for fifteen years – home to the greatest triumphs and tragedies of my life – and so, to some extent, it will always be my home. I think I could probably walk into my old bedroom twenty years from now and fall right back into that old rhythm.
I’m still learning the rhythms of the new house. There are days where it feels normal and then others where I hate it so much I could scream. Most of the time, it still feels like someone else’s house. Someone else’s house with all our stuff in. But every day is a step in the right direction. We’re filling all the empty space with memories, slowly but surely.
I’ve been writing a lot about Claire Wineland of late but I couldn’t write about this year and not mention her. Her death was another of The Big Difficult Things of this year. I stumbled across her YouTube channel late last year and have been following her on social media ever since. She was – and still is – a big inspiration for me and her death hit me really hard. It just makes no sense to me and never will and I’m still struggling to cope with that.
And through all of this, depression has been my constant, oppressive companion. While I had experienced depression before, this was a whole new kind of prison. The lows were lower than I’d ever experienced and there were several pretty scary moments. And as well as affecting my mood, my depression made it almost impossible to write songs. I’ve had many discussions about writer’s block over the years and I’ve always thought that there are things that can make writing difficult and so you have to figure out what’s causing the block and address it. In my case, it feels like depression suppresses the creative part of my brain: I don’t get random sparks of inspiration, I can’t solve problems creatively, and any active creativity – like songwriting – is like pulling teeth. It feels like writing songs requires a certain level of functioning that I’m just not capable of reaching while depressed. I want to write more about this – about depression and writer’s block – but that’s for another post.
Having said all of that, there have been good days, as well as good experiences on bad days.
By far the best part of this year has been the time spent with my friends and family, whether that be online or in the physical world, in Nashville, London, or Brighton. Or anywhere in between. These people have kept me going through the hardest period of my life so far and I’m so ridiculously grateful to them for that.
I got to travel a little bit this year, which was amazing. I managed to get back to Nashville where I had the most intense ten days possibly of my life. I got to see some lovely people, write songs (or try to), listen to some of the best songwriters in the world, and play a Song Suffragettes show. Even though I was incredibly anxious about it, that may very well have been the best day of my year.
I also travelled to Iceland for the first time and saw so many beautiful things, including a 60m waterfall, the Diamond Beach, and the Northern Lights. The natural scenery in Iceland took my breath away time and again. It felt like the first breath you take after being underwater. Of course, there was a lot of anxiety during the trip but it helped me in a way that only the magnificence of nature is able to.
There have been more wonderful live music events than I can count: Paramore, Kelsea Ballerini, Sugarland, Kacey Musgraves, Natalie Hemby (and all of Tin Pan South in Nashville), Frank Turner, Betsy Lane, The Shires, Sinead Burgess, The Brummies, Halsey, Kina Grannis, Aislin Evans, Maren Morris, and of course, Taylor Swift. Despite the anxieties around concerts, these are the places where I feel most alive and so, throughout this difficult period, I’ve always tried to ensure that there was another concert to look forward to.
And despite my musical struggles this year, I’ve actually played a few gigs and played shows that I am so proud to have been a part of. I got to play with WRTW again and it was even more fun than the first time (if that’s possible). I played Autism’s Got Talent in London, which was such a great opportunity. I played for Brighton Soup and Disability Pride in Brighton, two amazing organisations that I can’t praise enough. I also played Summer Fest in Worthing, my first show with my awesome friend, Richard Sanderson. And of course, I got to play a Song Suffragettes show when I was in Nashville.
I’ve also managed to do a handful to Autism research studies, as well as giving blood. I’ve been feeling so useless so I tried to contribute as best I could during this time where I’ve felt incapable of contributing anything at all.
Another big part of this year was getting used to the kittens: my cat had two kittens in February and me and my Mum just fell in love with them so we ended up keeping them. I love them dearly but it has been a major adjustment and a real struggle, especially with the daily battle that is depression. So this has been both a good and a bad thing. I want to write more about this whole experience because there were – and still are – a lot of complicated emotions involved. But above it all, we have Lucky and Lucy and the kittens and I love them more than life itself.
So, that’s it: 2018. It has been a hard, hard year, and one I’m very happy to leave behind but I’m cautiously optimistic about the next few months and the next year. I’ve felt better in the last couple of weeks than I have all year and I’m hopeful that this is characteristic of what’s to come.
“2018, the year of living, fighting, but ultimately, surviving depression. There was a lot of gold in the grey but I’m so ready to move on to 2019.” (x)
Finding Hope 