On Not Having a Voice

You know, most of the time not having a voice doesn't bother me. It's just a part of who I am. My voice is in my head and in my hands. Maybe sometimes my voice is in my face as well when I make an expression.

There are only ever a few things that have bothered me in regards to not having a voice. One of these things was the inability to read books aloud to my younger brother. I so desperately wanted to share my love of reading with him since he didn't like to read, but I couldn't.

I'm experiencing this again with a young person I met online, who I want to share what I loved to read at her, but I can't. I'd love to record myself reading aloud and send it to her.

Another thing that has bothered me is how easy it is for people to ignore me and act as if I am not there because I can't join into a conversation. So, it's relatively easy for people to pass over me. Hence, loneliness…ect.

The annoyance of only being able to contact people via telephone instead of having email as an option is another issue I face. It might be a great hindrance to me in the future when I need to take care of personal matters.

Today, I had an experience which has troubled me about not having a voice.

I'm taking care of my grandfather right now after he's had a stroke and the nurse said "You know the last thing to go is the hearing." after I mentioned that I didn't like people talking in front of him like he wasn't there.

And it struck me…


"I can't talk. Does the sense of touch remain?"

It has been bothering me.

I don't understand your conclusion, but...

There are a lot of deaf students on campus. I do see them, but I don't know how to include them, if that makes sense. I don't speak sign language and would have to speak through an interpreter if one is present or crouch over a small cafe table together writing on paper. I don't imagine that having a middle-man while you're trying to make a friend would feel very good, or that they'd rather write notes to me than talk to other people they can communicate more naturally with.

I'm too used to seeing people with closed ranks, I guess. I'll have coffee with a Libertarian and a Republican when it's just the three of us, but I know better than to waltz into a group of people I'm different from and expect to not be viewed with suspicion or ejected.

Of course, they might feel the same way. Early schooling years aren't kind to people who are different, either.

SophiaGrace said:

You know, most of the time not having a voice doesn't bother me. It's just a part of who I am. My voice is in my head and in my hands. Maybe sometimes my voice is in my face as well when I make an expression.

There are only ever a few things that have bothered me in regards to not having a voice. One of these things was the inability to read books aloud to my younger brother. I so desperately wanted to share my love of reading with him since he didn't like to read, but I couldn't.

I'm experiencing this again with a young person I met online, who I want to share what I loved to read at her, but I can't. I'd love to record myself reading aloud and send it to her.

Another thing that has bothered me is how easy it is for people to ignore me and act as if I am not there because I can't join into a conversation. So, it's relatively easy for people to pass over me. Hence, loneliness…ect.

The annoyance of only being able to contact people via telephone instead of having email as an option is another issue I face. It might be a great hindrance to me in the future when I need to take care of personal matters.

Today, I had an experience which has troubled me about not having a voice.

I'm taking care of my grandfather right now after he's had a stroke and the nurse said "You know the last thing to go is the hearing." after I mentioned that I didn't like people talking in front of him like he wasn't there.

And it struck me…


"I can't talk. Does the sense of touch remain?"

It has been bothering me.

Click to expand...

You may be unaware of this, Soph, but this sense of touch you that you are questioning literally means that you touch the heart of my young daughter in your writing to her.

And that is a very special gift that replaces your being unable to speak.

I am grateful to you; beyond words.

~'Mousey'

I'm not sure medically speaking, what sense would be the last to go if one had a stroke and was deaf.

I think maybe its best not to dwell on it, eh? And in any case, how the hell do they know what senses people retain in that situation?

jaguarundi said:

I think maybe its best not to dwell on it, eh? And in any case, how the hell do they know what senses people retain in that situation?

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My grandfather seems to only respond when people speak with him, but I can't speak with him and he doesn't look at me often.

So, I am wondering if my touch gets through to him and if he knows I am there with him.

SophiaGrace said:

jaguarundi said:

I think maybe its best not to dwell on it, eh? And in any case, how the hell do they know what senses people retain in that situation?

Click to expand...

My grandfather seems to only respond when people speak with him, but I can't speak with him and he doesn't look at me often.

So, I am wondering if my touch gets through to him and if he knows I am there with him.

Click to expand...

I'm sure that your grandfather knows you are there, but even if he does not, you can be safe in the knowledge that you are doing everything you can. Your grandfather may not be able to acknowledge your presence, but I'm sure that others around you appreciate that you're making the effort.

SophiaGrace said:

jaguarundi said:

I think maybe its best not to dwell on it, eh? And in any case, how the hell do they know what senses people retain in that situation?

Click to expand...

My grandfather seems to only respond when people speak with him, but I can't speak with him and he doesn't look at me often.

So, I am wondering if my touch gets through to him and if he knows I am there with him.

Click to expand...

Ah, slightly misunderstood the nature of your post.

I had a friend die of a stroke several years ago, and my mother became blind and deaf due to Alzheimer's.

All the nurses and carers would touch both of the, pat their hands, gently rub a shoulder, or a foot, and I am entirely sure that they knew that they were being cared about. I doubt that the nurses would have done this if they thought it was useless.

As for whether he knows you are there are not, I assume he always knew that you loved him, so your love is always there with him, isn't it? Even if he doesn't entirely know who is with him at any given moment.

I hope you aren't fretting about this. I am pretty sure that my mum thought the carers were me, or that I was her late sister, her mother, or who knows who else. In the end what mattered was that she felt loved and cared for, not who she thought was actually doing the loving and caring.

ooohh Miss Soapy ((((((big hugs)))))) to you.

I know your grandfather knows you are there....he is being comforted by you, youve been there for him.

I'm sorry you are going through this situation, I know it must bevery hard and you are being very strong.

Your voice will be heard by your granddad, Sophia ....loud and clear. Don't you worry about that. It's like I told you on FB. It will be felt and understood. And appreciated.

Hugs...

Sophia, I had no idea. When I read the thread title I assumed you meant that you felt like nobody was listening to you, the way I think a lot of people on here feel much of the time.

I've always thought you were one of the most eloquent posters, one of the strongest voices (pardon the expression), on this forum. You have a wonderful way of expressing yourself through your writing. I don't know if that's comforting to you but I just wanted to put it out there.

I don't know why the nurse might say something like that. To my knowledge it isn't true. She was probably just thinking of a way to agree with you and it just came out in an odd way.

With a stroke you can't really determine what senses might have been effected without them telling you. Since all senses are dependent on various parts of the brain it depends on what part was effected by the stroke, and every stroke is different. Otherwise with general aging all of our senses are effected the same way. They get less and less sensitive and we lose more and more details but most people still maintain all of them to some extent. In no case do senses just drop off one by one in some natural order or anything like that. It just doesn't happen like that. Everyone is different from beginning to end.
And of all the senses in the body, 'Touch' is the one that exists throughout. Depending on nerve endings which continue to exist for someone's entire lifetime. The skin can get thicker and someone's body can lose or stop maintaining a lot of nutrition that these nerve endings require but even with all the problems of aging and even with stroke, he should be able to feel 'something', even if he cannot process exactly what that something is. All other senses in the body depend on somewhat fragile things that exist in only one small place, like the eyes or the tiny hairs in your ears that allow you to hear.

My point is that he can probably still feel your touch. Even if it was effected by the stroke it is probably there in some way. It probably does show him that people care about him. I'm not sure of his circumstances but he very likely knows that people care about him, even if he doesn't really understand who right now.

I apologize if that didn't help.

As for not having a voice, I see you mean this literally, but have you ever thought of using your real voice, the one you do have, to maybe write a book instead? For example, a children's book with a certain little protagonist girl who can't speak? If you have a love for reading, and you want to be heard, use your real voice and create something that speaks for you. Maybe you can't read aloud to those you care about, but maybe you can give them an even greater gift like this. A piece of you.

The belief that hearing is the last thing to go before death is based on EEGs of brain waves. However, we're talking about after a stroke, not moments before death. I believe he can still feel you. However, I can understand why you might worry that he doesn't know that it's you touching him. Was there any song you played for him that he'd recognize is you? Maybe each time you're with him, you could play a recording of yourself playing an instrument.

nerdygirl said:

The belief that hearing is the last thing to go before death is based on EEGs of brain waves. However, we're talking about after a stroke, not moments before death. I believe he can still feel you. However, I can understand why you might worry that he doesn't know that it's you touching him. Was there any song you played for him that he'd recognize is you? Maybe each time you're with him, you could play a recording of yourself playing an instrument.

Click to expand...

I'm away from any instruments I could use.

He doesn't know it is me a lot of the time. Sometimes He thinks I am his wife, and I've accepted that being okay because if he realized I wasn't, he'd burst into tears and tell me he missed her, and repeatedly ask me where she was…which of course, I couldn't respond and answer.

Sometimes He thinks I am my mom, and for a short while today he thought I was my uncle.

It's all okay with me.

He can think I am whoever he likes.

I guess my only concern at this point is that he feels loved and taken care of.

Sometimes I think he recognizes me though and he gives me a smile or a wink.

He's talking now, whereas before it was all gibberish and nonsense. But he is still hallucinating, and I feel sad about that. I wish my grandmother had not neglected him, allowing him to fall over 30 times…he has ptsd hallucinations now, where he grabs me and tells me not to let him fall. He'll freak out when he is sitting.

I brought in the best psychiatrist in the state (she's a relative) and she diagnosed him with delirium, and i asked her how to get him stabilized, and my grandmother wouldn't allow her to help him. So I am faced with being his sitter (which is psych ward stuff), until I leave. And I know…that he will fall again after I leave him and/or he will be crawling around on the nursing home floor chasing his hallucinations.

I don't want to leave, but grandmother has forbidden me to stay.

She wants him dead, and there's nothing I can do since he is 95, has already signed their will, and she's a cruel heartless *****.

There's more, but I'd rather not talk about it.

I only wish the massive bruises on his arm would dissapear before I leave, which isn't going to happen fast enough.

…I love him, I just wish there was more I could do.

Heartbreaking…

So sad to here. And Here I was thinking my pain is biggest in the world.

*hugs*

You need one, Soph.

As a stroke survivor myself, I can tell you that touch is incredibly important when words fail. There maybe parts of the body that no longer respond to touch; I was paralysed for weeks but getting the sensation of touch back gradually was incredible.

I wish you and your grandfather well

Sigh.

Grandfather is improving.

I told him goodbye today and he cried because he didn't want me to leave.

About broke my heart.

*Gentle soft mouse hugs*

well, I am really glad to hear that your grandfather is a bit better, you really must care a lot about him, and him about you.

About that strange thing that nurse said, I believe that voice is a good thing but that hugging and touching can reach the heart much faster, and I am not sure that hearing is the last sense that stays, hearing maybe but even when one is half asleep one has trouble understanding what others are saying or even who is talking, so I am not sure that voice is more useful than touch with someone who is very sick. Gentle touch is love right away.

Last night he got worse again, agitated, aggressive…

delirium.

They're switching his medication from trazadone to haldol to help calm him. I really wish I could be with him by his bedside still.

Grandmother has blocked my mother from getting medical information on my grandfather but mom and I can still talk with Papou over the phone. Until my grandmother blocks that too...

Human beings are pieces of honeysuckle.