Finishing Sentences

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.

Categories: Brain stuff, Recovery, Rehab, Stroke stuff

Tags: , , , ,

25 replies

  1. Here, here! Bravo! I want to share this on my Facebook. Many, many people talk over zack. I haven’t noticed the sentences being finished as much. Every time he goes to speak and someone feels in the “awkward” silence with words, I want to put out my hand and say, “waaaait!”. I was just thinking about how it would feel (emotionally) to have my brain not work properly. I can’t imagine, and I am so sorry anyone has to know and live the reality.

  2. Thanks for the shout-out!
    In the province in Canada in which I live, institutions like the one in which Roia works are now closed and the people that were in them live in community settings, supported by agencies. Several states have gone that way as well. There’s a growing recognition that everyone deserves the right to have control over their lives and choices.
    Great blog, and so important…thank God that my stroke didn’t affect my speech. Having people finish my sentences like that would have pushed me over the edge.

  3. Amy, your words are perfect – your message came in loud and CLEAR. If I’d known you then, I’d have gotten you the gun – but only after you’d promised to shoot THEM, not YOU. Jk, sort off.

    I think it’s an efficiency thing; they’re trying to cut to the chase and get through the conversation. As though our relationships should be efficient.

    Even if someone hasn’t had a stroke, I tend to jump to conclusions about what they’re saying, so that we can go on with the conversation. I try very hard to not interrupt them, but it aggravates me sometimes how slowly they go, as though I’m stupid and not getting it.

  4. I haven’t had a problem with my speech so I haven’t experienced exactly what you’re talking about but I do have similar feelings when someone jumps in to help me even when I haven’t asked. What really drives me nuts is when a stranger will open a door or hold an elevator for me without being asked and then in an annoyingly kind tone tell me “don’t rush”. If I had a handgun there would be a lot of dead people around here whose final act was to tell me “don’t rush”. If I wanted help I would ask. I really hate normal people.

    • Julia, when I see someone tempted to help me, I smile and either assume they will or say, “thank you” before they do. It’s the effing ones I DON’T see that cause trouble, the ones who push open a door from behind me or are coming at me through a door without a window.

      And to the ones who say, “don’t rush,” I say, “I couldn’t if I tried.” We both laugh, but I’m hoping they get the message.

      • Sorry Barb. Being nice to people whose “help” is a graphic reminder of just how fucked up my life is just isn’t in my repertory and never will be. I ‘m sorry but I will never fit the image people want to have of the “happy cripple, an inspiration to all.” My goal is to have people think “Damn. That bitch should be dead.” I would agree.

        Sorry Amy. Delete me if you think this is over the top. I’m okay with that.

    • I know what you mean, there are a few normals I can tolerate, like my wife and kids, but as a group they are so loud and pushy, they talk funny, and don’t get me started on their sense of entitlement.

  5. Great Post. I still have my occasional moments of getting verbally “stuck” and I hate people playing fill in the blank. They usually fill in the wrong idea too. They say the wrong word then walk away self satisfied that they did something good and then don’t even have the correct information from ME cause they made it up for themselves.

    One of my weird language things is that I had/ have trouble coming up with the common usage word but university science and other Big words come out easier. (same idea as some people who might go back to a language spoken in childhood but forget the language they have been speaking for the past 30 years) If you find yourself talking in latin terms.. people look at you like the poor woman has brain damage and never assume part of the communication is their lack of knowledge.

    Ya hit one of my hot buttons here.

  6. Yeah I think most people have no clue what they’re doing. But that’s just reason to be aware of it and STOP IT.

  7. Thank you Amy for your post make me think of what we being doing to my husband all this time, he has aphasia and most of the time his words do not come at all or no the way he wants. So I asked him if us filing the blanks was something that bothered him, yo my surprise he told me no, but sure we been told so many times to let him try and maybe give him options so he can repeat back. I emphasize with my husband in a way, my first language is Spanish and when I was learning English some times I didn’t know the word in English but sure I knew it in Spanish but people around me didn’t know Spanish so I was so frustrated trying to tell them what I wanted, and they use to look at me like WHAT? My spelling is an other story not to good.

  8. Amy, good and necessary post. While I have been lucky and had no speech problems after stroke, I do occassionally suffer from dry mouth from my medications which makes it unpleasant to speak…a lot of my job requires communication abnd I can only imagine how frustrating it must be to lose language altogether., so I am humbly grateful, not to have to live through that experience even a little. Marta

    • I say this because I’ve been through it and I’m biased, but I think losing your voice and the ability to express yourself especially when on the inside you’re completely intact is the most frustrating thing that exists. But maybe other things are more frustrating.

  9. Thanks for the post!!

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