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| Amy Shissler My Cerebellar Stroke Recovery |
I was reading a post on GirlWithTheCane’s blog about a disabled individual that was institutionalized and the man’s music therapist said she thought of the lyrics “I Wish I Knew How It Would Feel To Be Free.” That’s a song by Billy Taylor. I know what it feels like to have everyone around you think that you’re intellectually handicapped because of the way that you are on the outside when in actuality you’re completely, 100% cognitively intact on the inside. But this was temporary for me. Now people treat me normally again. For the most part. I don’t at all know what it’s like to have my liberties and my choices taken away. I can’t imagine. That makes me feel sick to think about.
When I was learning to speak again, ALL of my caregivers did something that was so incredibly infuriating there just aren’t words. Maybe there are words, Barb can you help me out? What happened was this…….That first year, everyone – and I mean EVERYONE – that’s including my SPEECH THERAPIST would mouth the words that I was trying to say and finish my sentences for me. Some people would also talk over me as that was extremely easy to do. FOR THE LOVE OF GOD DON’T DO THAT. Be extremely conscientious of if you’re doing these things. I spoke very, very, very slowly, softly, and my speech was slurred. I was very difficult to understand at times and that’s why people did that and it made me want to shoot someone, or shoot myself. What I needed and didn’t get – even by my SPEECH THERAPIST – was to allow me to finish my thought no matter how long it took and not under ANY circumstance have my words mouthed by the person I was talking to. That made me feel incredibly stupid. Don’t do that. Talk to your loved one normally and even if they speak weird and slowly, don’t interrupt them and don’t for the love of all that is holy feel the need to finish what they are saying because you think they’re taking too long. If we need help and would like you to speak for us, we’ll ask.
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