All added up, I’ve spent about ~1/8th of the last 10 years without speech.
The longest period was 7 months in my late teenage years. The most recent period is 4 months ongoing since August 2015.
Loosing my speech for a few hours in new places or when under stress is normal. For example, visiting Drs, visiting clubs or other social events.
I tend not too speak for the entire length of holidays to centre parks or Weymouth with friends.
I lost my speech at the airport when I flew to CSUN and had free flowing speech for just 2 days of a 17 day trip.
The long periods have each been proceeded by difficult times of my life.
Such as being homeless when I was 17/18 and managing illness / recovering from an operation at 25/26.
The best analogy i can give is to describe my speech as a heavy spinning flywheel.
The speed the flywheel is spinning represents the amount of speech I have.
Sometimes the flywheel stops spinning and it’s very hard to get spinning again. Other times it spins really fast and I find it hard to control my speech.
Loosing my speech is normally triggered by my environment or stress levels. The quickest way to recover my speech is to fix the underlying issue.
For example, when I was 18 it was a move into supported living which eventually led to my speech coming back. I’d been homeless and living in various forms of temporary accommodation for a while.
My current speech issues are part of recovering from a year and a half of illness and recovery. A house move and support restructuring has also contributed to the challenge.
The operation stopped all my speech momentum, and I’ve had trouble rebuilding the momentum as I have moved home etc.
The current method for me to recover my speech is a combination of more support and taking advantage of Echolia.
Echolia is the meaningless use of speech and words. They can bubble out all of their own and may or may not have meaning.
While I find speech of my own very hard. I can repeat terms and a few short phrases. A few 1990s jingles from my childhood will come out quite readily.
My main method for speech is to say an entire phrase in my head and they turn the volume up for the word I want.
For example, to get the word ‘longer’ I say the phrase ‘washing machine live longer with calgon" in my head.
When my speech is free flowing it comes naturally and beyond a few quirks is very good. I have done dozens of public speaking events and have always received great feedback.
When I find speech hard I find it useful to script what I want to say ahead of needing to say it.
Via this method I can use very few words to appear verbal. However the moment reality varies from my script I get stuck.
Sometimes I can be verbal but not speak (either attempting to do so causes me great anxiety or I am feeling overloaded and unwilling to add to the overload) other times I can’t make verbal words at all.
I don’t always know which I am experiencing. Sometimes I try and force speech when I don’t have it which may lead to a word or two but then nothing. If I force it too hard it can lead to physical chest pain.
Feeling like I am ‘withholding speech’ causes me great feelings of guilt. I’m slowly understanding it. Often when I can’t speak I stop trying. It’s comforting not to be presented with the truth sometimes. It’s easier to suspect I can’t speak and to ‘decide to stay quiet’ than to try and speak and deal with the frustration and anger when it fails.
When I can’t speak it can lead to extreme frustration and upset. The inability to speak to reply to questions in extreme cases has led to self injurious behaviour. Other people tend to forget I can’t speak and when demands exceed ability the frustration can lead to a meltdown. This is very rare.
I can do most things without my speech. I use instant messaging and text messages rather than the phone. For things which must be verbal my friends will often help.
In shops I may use my phone which has a speech generation app. I also sign ‘I can’t speak’ when people talk to me.
Most people I meet (eg cashiers in shops) then tend to assume I am deaf, but I don’t have the ability to correct them. This is frustrating!
Without speech I think better and I am much calmer. If I have speech, I am way more likely to experience meltdowns and overload.
I want my speech back. It’s been 4 months and it’s very frustrating. At the same time I know that I can’t force it.
It will be back in due time. It works well as an indicator of how stressed I am and I am very confident that once the stress drops a little it will come back.
