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Speechless for Rett

18/07/2022

Recently, I went ‘speechless’ for Reverse Rett. I really did this because I usually do one fundraising challenge a year and this sounded pretty easy and peaceful. It was neither.  

Here are some things I learned from not being able to speak for 24 hours: 

When you can’t speak, people stop talking to you very quickly. You see them come in wanting to say something and then, they remember you can’t speak and don’t bother. It’s a lonely experience because you still want to hear what’s going on, big things and small, like who they were talking to when they popped out to the car or who was on the phone. 

You have ideas, thoughts, questions and responses they have just can’t go anywhere and this puts you on the outside of what’s happening even when you’re physically there. 

Without the reciprocity of dialogue, regular physical contact is more important and I longed for it throughout the day. 

You feel much more nervous about interactions with strangers when you know they will speak to you and you can’t speak back. 

You long for familiar people who are coming or going to seek you out and open or close the time you have together with the customary greetings. (e.g hello, goodbye, nice to see you etc.) 

Other sounds become really important. Mmm? Ah…. Mmhuh…ohh…ooh 

Sighing is a tremendous relief and release, freely available to all 

Laughter in all its forms feels so liberating and specific for a non-verbal response.   

Your mouth gets very dry bc you’re not moving it around as much so that needs more attention from helpers 

Being able to gesture Yes/ no is a monumental advantage 

What’s for lunch and other treats feel extra important and exciting  

Without a speaking voice, your interior dialogue is louder and more of a sweet friend. Because of this you start not minding the exterior being quiet as much as you thought you might have. 

If you are considering doing a ‘speechless’ challenge: 

Please do it for Reverse Rett. As you probably already know, 98% of people with Rett Syndrome have no speech at all. 

Before you embark on this challenge, ensure someone around you is ready to say please and thank you for you in restaurants and where appropriate to tell people what you’re doing so you don’t feel/look rude.  

You should schedule social media posts as obviously with also not being allowed to write with a pen or type, you can’t remind people of what you’re doing and with every passing minute, you feel like you should be getting more and more sponsorship  

Overall I would say although this is a difficult challenge emotionally it is totally do-able, if only because you know that the situation is not permanent. But I can’t imagine knowing I would never be able to properly communicate again.  

In terms of better understanding what Amber, Beth and everyone else with Rett lives with, it doesn’t really scratch the surface. I had masses of advantages that they don’t have. I could use my hands. I could gesture, indicate yes and no and the windy hand thing you do when you want someone to carry on. I could point. I could cup my ear, shrug, lift my hand up like ‘what?’ 

If I really wanted to feel what it would feel like to be Amber or Beth I wouldn’t be able to do any of that. Nor would I be able to get myself up, dress myself, feed myself, reach for a drink, go to the toilet, or move around the house, never mind go for a walk. ‘You’d have to hire someone else to help you all day for a whole 24 hours and do absolutely everything for you, it’d be awful,’ said my eldest son, Peter, when we were discussing the concept.  

Often when I think about gene therapies or other treatments which are coming which will address the underlying cause of Rett, I think ‘please can Amber just be healthy and feel well and live longer.’ I would love if she could eventually, with therapy, stand up again and maybe pick up something (anything) and hold it for a few seconds in her hand.  

Speech has always seemed too much to hope for but after this challenge, I am willing to stretch. There would be nothing that could improve her life more than the autonomy and presence gifted to us through voice and I want her to have it.  

Thank you to everyone who donated and offered kind words of support for this challenge.

Your support is greatly appreciated! I also send my best wishes to everyone else who has done the challenge or is considering it. It really is an insightful experience for anyone supporting someone who cannot speak. 

By Rachael Stevenson