It’s here! Everyone on the Edge has been a project I’ve wanted to do for a long time. I am so overwhelmed with the response I have had and hope that this series will encourage more of you to open up. It’s an absolute honour to read and share your stories and help people recognise that truly, everyone really is on the Edge.

I would like to introduce my next very special guest. My big sister. When I first asked Chloe to write me a piece, she said she would straight away. She clearly knew she had something to say. I had no idea what that was, and I selfishly expected it to be about her struggle in being the older sister of a person who has sucked the life out of our family. She always talks about it, I know she always talks about me. It’s not though. I am so glad it isn’t. I am so glad that she has decided to talk about her, to write about her. She has a lot to say, and as is represented in this piece, she hasn’t always been given the chance to speak. I am so glad that for once, Chloe is talking about herself, that her voice is being given the platform it deserves. She is far to amazing for any word I could ever find. Chloe has opened up in the piece in a way that I never knew she could. A lot of it I had no idea about, and I have only read it twice as I couldn’t get through it. You see, Chloe is my hero. She has saved my life in its entirety, she is my protector and biggest fan. And yet I never seem to give her the credit she deserves. She is vulnerable, beautiful and pure. I have (and know I never will) meet someone like her. You never will either. Her struggle into adolescence, from memory and from reading this piece was so heartbreaking, and inspirational, she is so unbelievably and truly strong. She has defied everything she thought would hold her back and she tells her story with a raw eloquence I have never read before. I love you so much, sis, and I am so grateful for you giving me this, for giving us all this. I hope all of you who read this get to know her, and see the heart that so many of us care for. Please read this piece, it’s so important to me, and I know it will be important to you. The inspiration that this human does, and continues to provide to everyone she meets, is off the scale. And I tell you what… if there is one thing I know, it’s that when I grow up, I want to be just like you, Chloe Thomas.The floor is yours, my darling girl…

In my teenage years the sound of a telephone could make me feel sheer terror. It is hard to say what the worst case scenario would be, because there would be so many running through my head. Would it be them hanging up on me, or would there just be silence on the end of the phone, then them saying ‘hello?’ as if I wasn’t there. In these situations I would often find myself frozen, with the words lodged somewhere at the back of my throat, stuck behind an invisible and impenetrable barrier. What I wanted to say would be trapped in my head, screaming at deafening volumes, as if the louder it shouted the easier it would come out. I would feel hot and clammy, with the sheer effort of trying to get the words out of my head and into the world. If I managed it, I would feel exhausted, as if I had run a marathon, if I didn’t, well in my own words, why did I bother?

Since the age of two I have suffered with a speech impediment known as a stammer (some people use stutter, can’t say I’m a fan of that terminology but each to their own). There have been many physical implications to this, including spending time at the dentist due to jaw spasm and grinding my teeth, from literally trying  to spit words out. However, I would say that the effect on my mental and emotional health has been more difficult to navigate. 

For those who don’t know, Stammering is a neurological condition that can make it physically hard to speak. Those that experience it will repeat, prolong or get stuck on sounds or words. There might also be signs of visible tension as the person struggles to get the word out. This condition can be fairly common in children. Some people who have it in childhood will go one to speak fluently in their adult years. However, there are some sufferers, myself included, that will not experience it this way. This is something that has taken me years to come to terms with (and honestly, at times, I still struggle with now). As I grew older I patiently waited for the ‘phase’ to pass, as many people told me it would, as it did for them. When it didn’t, I was heartbroken. I had struggled through my childhood and teen years believing I was going to get to that finish line, to the point that other people had promised me I would get to.

The older I got, the further away the finish line was, and then it eventually disappeared. I eventually realised that I would never be able to communicate the way others do. That there will always be a part of me who is scared of certain sounds, certain questions and worry about people making comments that leave me embarrassed. I had to accept that I would never experience true continuous fluency (where I don’t have the continuous overwhelming fear of stumbling every time I speak). There have been many occasions where I have been envious, jealous, and angry at the ease in which others communicate. I would have done ANYTHING to not be me. To be them instead, as I felt like I was in a CONSTANT battle that I was losing. During this time, I would regularly isolate myself because the world was full of unknowns. Going to a restaurant, where I would have to choose what I wanted over the counter would petrify me. I couldn’t bear the snigger of ‘do you really not know what you want?’, if I were to block. Whenever these situations happened, it never occurred to me to think that the person on the other side of the counter wasn’t patient or have any experience with speech impediments. It was ALWAYS my fault. Why couldn’t I just be normal? Why is my body failing in something that comes so easily for others? It must be me. It must be my fault and I could only punish myself. And I did. I had an internal, relentless monologue of things you should never being saying to anyone, let alone yourself. I hated myself. I never felt like I was good enough, I always wanted to be someone else. I remember feeling this as early as seven, I would make up stories in my head where I was a different person who didn’t have a stammer, or that it would be magicked away as if I was trapped under some sort of curse. I would regularly escape to this ‘happy place’, almost wishing it to be my reality. I would ask Santa and make birthday wishes, pleading to be like one of my ‘normal’ friends. When this didn’t happen, I would just lust after the lives of my classmates, imagining myself in their lives where, in my mind, they didn’t have struggles.

 
I lived in a state of permanent exhaustion. To speak would be physically tiring, to the point that sometimes I didn’t bother. I went into survival mode and chose to remain silent where possible. I couldn’t waste my energy on something trivial (but perhaps enjoyable) when I might need my energy later on for more essential conversations. I watched as these conversations continued on without my input or opinion, even if I thought I did have a good or a funny point. There were times that I thought to myself, maybe my input wasn’t wanted or needed. I believed I didn’t add anything to conversations when I did speak, I only contributed awkwardness or frustration when I was stuck. At really dark moments the exhaustion of not being able to communicate got me thinking that maybe life didn’t need my input. I felt tired of being so tired. I spent a lot of time in my own head, which can be a dangerous place to go when you are feeling low. Feeling unable to communicate this, my negative feelings and struggles stayed in my head only being monitored by me, who is honestly my own harshest critic. I let my feelings fester, and gave it power so it ate away at me, consuming most of my self-esteem. 

You may wonder where Speech Therapy fits in with all of this, as surely that was able to help me? While I did attend some intensive courses that introduced me to techniques that helped the tension in my communication, but I have never had prolonged Speech Therapy. Much of my childhood consisted of me being assessed by Speech Therapists, which would always have me excited and hopeful as I would finally have help to get to that finish line. But this would always end up in me being discharged, which left me running the race alone with, what felt like, a million obstacles. In their words, it wasn’t that I didn’t have a need, it was that there was no Speech Therapist that were able to help with stammering. Having an answer like this only added to my feeling of isolation. If they didn’t have any Therapists to help me, then I must be the only one. It was only when I went on the intensive courses that I met other sufferers. Although, everyone who I met seemed to have long term Speech Therapy and were shocked that I didn’t. I know I wasn’t able to make the same amount of progress as them, as I was basically practicing on my own. I do wonder how different things may have been if I had that support continuously over the time I needed it… But this is an answer I will never know.

There wasn’t a one turning point that lead me to change, there opportunities were created that felt like small stepping stones. It was difficult to take a step in that direction as I had told myself that people didn’t want my contribution or need it. I always would think the worst case scenario, and believed that it would come true. Slowly but surely I started to put myself out there, and guess what, the worst case scenario didn’t always happen. I can’t take all the credit for this, it took a LOT of encouragement. Whether this be my English teacher who encouraged me do a presentation in class (literally terrified, but the response was great… it got me an A*) or my Dad encouraging me to use the phone to call up my boss at the time (a lot of crying, sorry Dad). I am different now, I won’t let my fear stop me, or have control as much as it once did.

I still struggle now with fluency and talking about it. I think that can be down to how I want people to view me. I feel like we can be portrayed as ‘stumbling stuttering idiots’, who just need to spit out words out. Which it still a very prevalent view. You can see that when Joe Biden had to defend the fact that he isn’t senile, he just struggles with his speech sometimes. It can help when people like Joe speak openly, as it can educate those who aren’t aware, and inspire those who have suffered. I mean President of the United States, come on! 

I am still working on myself, which has been slow journey, with sometimes feeling like I have taken steps backwards, with my fluency and my mental health. But I can safely say that I am a different person to the terrified, self hating teen. I have evolved, some would even describe me now as ‘outspoken’. I always remind myself to take this as a compliment. After years of feeling silenced and desperately wanting to share what’s inside my head, I now have the opportunity, confidence and energy to be the person I always wanted to be (even if that voice sometimes is at a volume that FAR too high… blame my family!). I now know that my voice has power. I am currently working as an Advocate in the Criminal Justice process, ensuring that other people’s voices and opinions are heard (the irony is not lost on me!) I also have wonderful people around me who have helped to build me up, and silence the default voice that tells me I’m not good enough or worthy of anything positive. 

I still have a long way to go but what I want to say to anyone who has anyone in their life who has a stammer or struggles to communicate…. Be kind and hang in there for what we have to say. It’s worth it, I promise.

If you wish to contribute to Everyone on the Edge, please send your piece along with a picture to ellenontheedge@gmail.com