This Odyssey

Time has moved on and I’ve been procrastinating. I’ve had two viruses, each following a day out. Teary eyes, earache, fever, sore throat etc. Is this the new normal at this stage in my journey?

These things are not the most difficult challenges in my life. When I had akinetic mutism I had to learn to speak again. That is, I had to relearn the muscle movements/tongue position for every sound I make. Every word had to be mapped in my brain again. I cannot tell you the frustration I felt making blurry, slurred sounds for what seemed years. People thought I was mentally deficient. They would talk to me slowly and deliberately and I wanted to punch them in the face. Even if I would have, I could not because my muscles all over my body were having to relearn movement and accuracy. It was anger that drove me on.

Anger is neutral. You can use it to accomplish tough tasks or you can let it eat you up. Mostly, anger got me learning to speak. When one is tired, some sounds are even harder to make. ‘Bah’ is the sound that takes most effort. How many times did I ask for my ‘mook’ or have a ‘marth’. The intense inner explosive feelings are impossible to describe. To be unable to overcome in the short-term such hindrances and confinements, the feeling of non-control of one’s body, the despisement of pity or non-understanding from others. The self-hatred and self-loathing which were only dissipated when I slept or was carried in my Dad’s arms. I cannot describe it. And despite such powerful feelings, one is passive in the face of the seeming futility of it all and the exhausting amount of energy it takes to simply try.

It took me five years to speak ‘normally’. Most people don’t notice anything about my speech unless I am tired or very upset. Sometimes people think I’ve had some drinks when I am tired. I can live with that now. It doesn’t fill me with joy, but I can live with it