Monday, May 23, 2011

The Mystery of Aphasia

by Julia Buckley

The neurological term "aphasia" has been in the news a great deal lately, ironically because it affected not one but two normally healthy newscasters named Sarah Carlson and Serene Branson. Aphasia occurs when the part of the brain responsible for language is permanently or temporarily damaged, and the speaker's words can become garbled or nonsensical (click the title to see GOOD MORNING AMERICA'S discussion of the newscasters' experiences with aphasia).

I am more familiar with the term than I would wish to be, because in the last several months this disorder has affected my mother, and I've watched this intelligent, outgoing and extremely verbal woman retreat inside herself because she has lost the ability to communicate her thoughts to the outside world.

Initially it was sporadic: a silly word or statement would slip out at the end of an anecdote, and we would laugh.

Then the "nonsense" language grew more common, and my mother would sometimes slip from English into German, her native tongue, without realizing she was doing so. My father took her to a speech therapist and a neurologist, the latter of whom suggested that this could be the result of mini strokes--events that may have happened at any time in her life--that have hardened the brain tissue and therefore made it difficult for her original thoughts to process through her language center.

My mother does remember having an episode of aphasia in her youth, when I and my siblings were little. She was having coffee with a friend and suddenly nothing that came out of her mouth made any sense. The friend panicked and begged her to stop; neither of them knew what was happening. After a minute or so, she was back to normal. She never went to the doctor. No one thought of it, then, as something that would require a medical examination.

So even then my mother's brain might have experienced something that is causing her extreme trouble now. Because of her aphasia, which has increased to the point that she cannot sustain a conversation, she has become very dependent upon my father to help her communicate. This is frustrating for him, because often she'll expect him to read her thoughts; her eyes will beg him to understand what it is that she wants to say, and to become her voice.

It has affected her social life to the extent that she withdraws from group situations. She no longer likes parties or visits with friends. Her aphasia embarrasses her, others her, in a way that she cannot bear. With her husband and her children she still tries, but she becomes angry at herself when the words that come out are not the words she intended.

Recently, she has given up her favorite thing of all: singing in the church choir. Although the aphasia doesn't seem to affect her as much when she sings (also a mystery), she is embarrassed when she can't talk with her choir mates or respond to the choir leader.

This last loss has made her more sad even than the loss of words.

This aphasia is painful for us all. My mother has always been a great deal like me--a reader, a writer, a thinker. She loved to have philosophical conversations, and our family dinners, back when I lived at home, would sometimes last for hours as we lingered, chatting and exchanging thoughts.

Aphasia has robbed her of almost everything she holds dear. She can still appreciate the cards we send her, but her once-perfect handwriting has also been affected by the disease, and she has been deprived of yet another vanity.

What troubles me most about aphasia, aside from the pain it has caused my mother, is its mysterious origin. Who knows why, in a quick chat with a neighbor back when she was in her thirties, my mother was suddenly deprived of speech? Who knows why, or how, this might have affected her current condition?

Why are some brains prone to this condition and others not?

Life has its random surprises, and aphasia seems to be among them.

(Image from the Stroke Foundation website).


Laura K. Curtis said...

Julia -

I am so, so sorry to hear about your mother. I have experienced aphasia a couple of times in my life--once more severely, for a short period of time, once less severely by over a longer period--and can attest to how scary and lonely it is.

It's likely that the reason your mom isn't so affected when she sings is that she's using a sort of "muscle memory." She's not creating words in her brain that she needs to speak, she's singing ready-made words in a pattern she's used over and over, if that makes any sense. Perhaps, if you enjoy singing, it's something you guys could do together?

I hope the neurologists have not given up and are still trying to find a way to help.

Sending good thoughts to both you and your mom...

Julia Buckley said...

Thanks, Laura. I do think it's a lonely experience and I wouldn't wish this on anyone. The muscle memory thing makes sense--she's been singing since she was a small child, and those German folk songs come flowing right out. :)

The worst thing, as is always the case with someone else's suffering, is not being able to alleviate it for her. I know my dad feels this most of all. It's a heavy burden for him, a man who is turning 80 this summer.

Tina said...

A Scientific American article on aphasia is what inspired one of my current protagonists, but like you, I've dealt with it in a family situation as well. The human brain is an amazing and awe-inspiring engine, that's for sure, even when it isn't working normally (maybe even especially then). I wish you and your family all the best as you navigate these truly challenging waters.

Julia Buckley said...

Thanks, Tina. I think we're still in a stage where we're hoping it will get better . . . even though we know, logically, that it won't.

Diane said...

Julia, re your response to Tina's post, please don't give up hope. I haven't had experience with aphasia, either in myself, family member or friend. I have had with Alzheimer's. From what I've read and heard, aphasia - unlike Alzheimer's - is not necessarily permanent or progressive. There is hope.

Julia Buckley said...

Thank you, Diane! I have also had experience with Alzheimer's (my mother-in-law), and perhaps that is what makes me feel rather depressed about the whole thing.

But this is good to know.

Sandra Parshall said...

Hold onto hope, Julia. I wish your mother the best. I'm sure this is a frightening experience for anyone who suffers through it.

Julia Buckley said...

Thanks, Sandra. The good news is that Mom still loves to read and can still do so rather voraciously; on the other hand my mother-in-law who had Alzheimer's lost the ability to concentrate on reading even in the earliest stages of her disease.

Grace Carpenter said...

I had a stroke in Feb. 2010, and I'm still recovering my speech. Aphasia is so isolating.

I really hope you can convince your mother to join a group with other people with aphasia -- and keep singing. A empathic speech teacher can help, too.

Julia Buckley said...

I'm sorry to hear that, Grace, and I believe it is isolating.

I don't know if my mom has looked into the idea of meeting with other Aphasia patients--that's interesting.

I hope you are doing better each day.

Anonymous said...

Hi -

I am sorry that you have family members who have aphasia. I work for a speech-generating device company. We manufacture the Lingraphica - which was designed for adults with aphasia. Please check out our website - Also, you can call the National Aphasia Association at 800-922-4622. They can offer you information that can help including support groups in your area. There is help out there for your loved ones. If I can answer any questions about the Lingraphica for you, please don't hesitate to contact me. My name is Barbara and you can reach me at or 888-274-2742.

Julia Buckley said...

Thank you for the information!