February 14, 2010

Voices Inside my Head

Sometimes I swear Levi, our dog, can telepathically talk inside my head. This morning I woke up to someone calling my name and when my eyes opened all I saw was my husband sound asleep. I listened for the voice to call my name again but the house was silent. A dream, I thought, but it was so real---and so annoying because it’s a common way for me to wake up. I rolled over and there he was, smack-dab in my face, his little eyes peering over the top of the mattress. “Finally!” Levi seemed to be saying, “I need to pee.” The creepy part is the dog also seems to be able to tell time. It was nine o’clock. It’s always nine o’clock---on the dot---when I wake up this way.

How much easier it would be to live with someone with aphasia if we all had the ability to use mental telepathy. There are times when I think I can read Don’s mind but, of course, it’s not always possible to know if I’m reading him correctly. People often comment that I’m quick at figuring out what he wants to say. It doesn’t always seem quick to me. Sometimes, though, Don has repetitive themes he tries to talk about which make me seem more skilled at deciphering his speech than I really am. Sometimes it’s just knows a person for decades that give a spouse the edge in the game of peek-a-boob-words. (Come out; come out where ever you are! Talk to me!)

Don and I are lucky in some ways. His limited vocabulary is made up of nouns, which makes it easier to decipher his wants and needs. I feel so sorry for those people with aphasia who are stuck on the tiny filler words with no real meaning---or who have slurred or hard to understand speech. And of course those of us in the language disorders community know a few people who are stuck on the emotion driven swear words. Don is pretty good at swearing. He usually sings his ‘fucks’ at least one a day. It’s the only word I wish he wouldn’t practice.

Once in a while I’ll go to a stroke support website where I’ll read a few posts by spouses of people with aphasia. I’m always amazed at how little some of them seem understand about the disorder. The complaints about husbands who don’t say ‘I love you’ anymore bother me the most. I’m not talking about a caregiver longing to hear the words---we all do that from time to time. I’m talking about caregiver resentment because they think the words are being withheld on purpose. I want to scream at the computer screen: “Maybe he can’t get the words out anymore!” There could be a half a dozen reasons why the words aren’t forthcoming after a stroke.

I remember when we first started speech classes after the stroke and the clinicians would try to cue Don to say ‘I love you’ to me. He’d give them such dirty looks and I was sure I could read his mind. It was like he was sending me a telepathic message that he damn well wasn’t going to say those words just because some little girl fresh out of college wanted him to, even if he could have gotten them out of his aphasic brain. He was never the type to throw that phrase around lightly and never in front of strangers.

The first time when he actually did say ‘I love you’ after the stroke he was five years out and it was totally unprompted. He was sitting at the dinner table with a silly look on his face when the words came out of no where. I was shocked and it was the most heart-felt ‘I love you’ I’ve ever heard. He hasn’t said it since then but it doesn’t matter. Every day I hear voices inside my head and I’m sure they are coming from both Don and the dog. Mental telepathy is a wonderful thing. And if by chance mental telepathy isn’t real…well, I guess I’m just making up the words I want to hear. ©

.

10 comments:

Dorothy Rimson said...

Nice post. Loved reading it.

Bob said...

Hello,

My name is Bob Mayo.
I have a close family friend that had a stroke and acquired Aphasia.
I built him a communicator that he likes.
I am not a spammer, never will be.
I just wanted to let you know that I now have a website.
www.commquick.com
we sell it for $360.00, free delivery.
Thank you.
Bob

sijagur said...

visit and read here.. nice post,, greetings from Indonesia..

Dorothy Rimson said...

It is again a nice one..Read it twice..

parlance said...

Oh, what a beautiful moment that must have been.
I didn't know he could say whole sentences. Would he have been treating "I love you" as sort of one big word, in order to say it?

The Aphasia Decoder.... said...

He doesn't really say whole sentences. The "I love you" was the only unprompted sentence he's ever said.

The Bee Folks - Lori Titus said...

In some ways, I'm lucky - Dave can say "I love you", and does several times a day. My resentment comes from the fact that he will probably never really know, understand, or appreciate how much I do for him each day.

We are at a point now, though, where I am starting to look for one of those "discover each other" type of weekends, where we can get away from the kids, go to a spa, and learn what it is like to be husband and wife again.

Anonymous said...

Lori, that's a common resentment and I don't think that will ever change. We spouses really do a LOT and the survivors are so wrapped up in just finding any language, that they don't think about other people. I'm fortunate that all of Don's relatives and friends tell him how lucky he is and he agrees when they say it. But those spontaneous thank you's from someone whose had a stroke just don't come when we caregivers need to hear them the most.

MOM said...

My husband had a stroke in Jan. His speech is very slowly returning but I find with me he would rather just point or snap his fingers. From the beginning I tried to discourage this but he was a pointer even prior to his stroke. I have felt he knows most everything right from the beginning but as time goes on I think that is what I want to believe because he gets it one day and maybe not the next so is this short term memory things???? What about things that he was passionate about prior and now shows no emotion like the grandkids for instance were his light and now he just smiles but doesn't really seem to want to be around them....I realize all cases are different and I am just hoping that the same person he always was returns in full. There are little things I miss but mostly I miss my best friend. On the bright side we have laughed more in the past four months than we have in years. So yes I totally realize how lucky we are and while I grieve for the loss of the person he was I am so trying to embrace the person he is but the child like actions are hard to get use to as well as the lint picking..

MOM said...

Just found your blog and enjoyed what I have read so far. My husband had a stroke in Jan of this year so I am trying to learn as much as I can from others in my quest to understand our lives as they are right now but also to know that I will always try to help him return to normal but not to lose myself along the way.