A note from the author.
First, thank you to all of the people who took the time to give me the lovely reviews. Annie, I hope you think this was worth interrupting Full Circle. Ladies, you know who you are, thanks for beta reading; and Gayle, thanks again for the incentive to write this story.
WARNING: THIS IS PERSONAL AND TECHNICAL INFORMATION AND NOT PART OF THE STORY. IF YOU ARE NOT INTERESTED IN THIS STUFF, JUST IGNORE IT; PLEASE DON'T READ IT AND TELL ME IT'S BORING. I HAVE PUT IT HERE FOR PEOPLE WHO ARE CURIOUS AND WANT MORE INFORMATION ON STEVE'S MEDICAL CONDITION IN THIS STORY. YOU MAY WISH TO SKIP DOWN AND TRY THE EXPERIMENT, THOUGH. I THOUGHT IT WAS KIND OF NEAT.
As I was writing, I found myself thinking a lot of my Uncle Herb. He was a college-educated farmer and sometimes carpenter, well known and well liked. He was active in the church and the community, and liked to fish and hunt. I remember going with my three cousins to his farm and seeing all the animals when I was a child. It was always a special outing. Every summer for several years, our large family would hold a reunion at his farm. We would eat far too much of the good home cooking, old recipes that had been handed down for generations, and then we would play too hard, horseshoes for the old men, volleyball or softball for the younger generations, and a peanut hunt for the children. Though I never felt particularly close to Uncle Herb (He was a great uncle who had married in on my maternal grandmother's side of the family, and must not have known what he was getting into, poor man!), almost all of my memories of him are pleasant ones.
Then one day, he had a stroke. The resulting brain damage caused him to develop paralysis on one side, and gave him a permanent language disability which I now believe was aphasia. I remember him talking, and he produced lots of sounds, but very few words. All we could do was smile and hold his hand while he struggled to communicate with us, sometimes with tears in his eyes, sometimes, flying into a rage of frustration. Many of our family members avoided him after his stroke, and some of the little children who live far away and didn't see him often enough to know what a gentle man he was, were afraid of him.
I was still a kid when Uncle Herb died, maybe in my early twenties, and it shames me to admit I was one of the people who avoided him. It wasn't that I didn't care. Quite the opposite, I cared very much. I just didn't know what to do or how to communicate with him, and I didn't want to upset him. I didn't want to do anything wrong, so I just didn't do anything. At family gatherings, I would smile and say hello, and then go do something else. I knew so little about his condition I didn't even know where to begin to educate myself at that time.
I knew what kind of problems I wanted Steve to face, and I began my search with 'language production brain damage'. After wading through several websites, I finally stumbled across the term 'aphasia', and thought, "Oooh, something that has a name!" So, I went back to my search engine and plugged it in and got over 100,000 hits. Where was all this stuff when my family needed it?
As I wrote this story, I tried very hard to stay true to the facts I had discovered, but sometimes, when I needed information I just couldn't find it. I could find no specific information on assessment tests and diagnosis of aphasia patients, so all of the tests Marcus did in chapter nine were of my own invention or dredged up from the dark recesses of my mind where they were stored when I completed my educational psychology courses some ten years ago. All omissions and errors of fact are my own, and I will gladly correct them if anyone wants to send me an Internet address where I can validate the correct information.
What follows is a summary of what I have learned about this terrible disorder. Much of what I read was far too technical to be useful--summaries of research and dissertations and such, but I did find a number of articles on the web that provided practical, useful, understandable information. At the end of the summary is a list of links that I have found particularly informative. I wish my family could have had this information years ago, so that we could have made Uncle Herb a little more comfortable among us.
Aphasia can affect productive and receptive language skills. There are several kinds of aphasia and related disorders, and for some reason, the doctors who work with aphasia patients want to give each condition three or four names. In the next few paragraphs, I have tried to explain the names of and describe the primary types of aphasia in terms of their symptoms.
If you are already bored, you may wish to skip to the EXPERIMENT.
Productive language skills involve using oral, written, body, and sign language to communicate ideas. All language is a system of symbols that represent things that exist or happen in the real world. When the mechanism that changes thoughts about these things into language about these things fails some or all means of expression break down. This is called Broca's (for the area of the brain), motor (because it involves the motor skills necessary to produce speech sounds), expressive (because they can't express themselves), anterior (because the damaged portion of the brain is near the front), or non-fluent (because they can't speak fluently) aphasia. Patients with Broca's Aphasia often experience right side paralysis because the area affecting language production is very close to the area controlling motor skills. Those who have recovered often report understanding everything that is said to them and knowing exactly what they wanted to say, but being unable to make their speech parts function to say the words.
Receptive language skills involve decoding the oral, written, body, and sign language messages communicated by others to understand their thoughts. When the mechanism that turns language (symbols) into thoughts about things in the real world breaks down, people can 'speak' fluently but understand nothing. Often their body language and emotional responses can be just as muddled. This is Wernicke's (for the area of the brain), sensory (because it involves sensing and responding to communication from others), receptive (because they can't receive information through language), posterior (because the damaged portion of the brain is near the back), or fluent (because they can 'speak' fluently) aphasia. Those who have recovered often report that they never realized they weren't speaking properly, that other people made no sense to them, and that they knew when they were talking and couldn't make themselves stop.
Further down, there is an experiment you can try to see what I mean about language being a set of symbols.
Global aphasia affects both areas of the brain, and people have symptoms of both disorders. Not only can they not comprehend (receptive) language, but they cannot produce (expressive) language sounds either. It can also be classified as non-fluent aphasia.
The following symptoms/disorders/conditions often occur with aphasia, but they are not necessarily a part of aphasia. They are separate disorders/conditions in and of themselves. Anomia is when a patient has trouble finding names for people and things. Apraxia is trouble sequencing physical actions to make the speech sounds necessary to form words. It can be misdiagnosed as Broca's aphasia where the main problem lies in knowing which sounds to make, not in making the body form them, which is why Steve needed people to say words for him. Dysarthria is a name shared by a group of conditions caused by weakness, slowness, or lack of coordination in the parts of the body needed to produce speech sounds. With apraxia, the patient's mistakes in speaking in a given situation can be different every time, with dysarthria, the patient makes the same mistakes every time. Patients with Broca's aphasia can also experience paralysis, and lack of sensation, usually on the right side of the body because the areas of the brain controlling speech are close to the areas of the brain controlling motor function. Usually, these symptoms are more pronounced on the hand and arm than in the leg, because the hand and arm involve fine motor movements, which is why playing the violin again was supposed to be helpful. They can also experience a condition called right hemianopsia in which the right side of each eye is blind. Again, I freely admit, this is a point where my understanding of my own research is a little shaky.
Left-handed people are more prone to acquiring aphasia than right-handed people, because for some reason, they have more areas of their brain that control speech. For the same reason, though, they are more likely to recover more completely than right-handed people because the 'extra' speech centers can take over the lost functions.
People can have some symptoms of either (or both) Broca's and Wernicke's aphasia, and not others. That is the case with Steve in this story. I decided he would have a complex aphasia syndrome, so he could talk nonsense fluently and not realize it until someone told him, but he would be capable of understanding others. I picked the symptoms that would make it hardest on Steve and still make it possible for me to write my story because it was in response to a hurt/comfort challenge. I left him with body language so he wouldn't have to sit like a lump, and comprehension so Marcus could actually help him and so Mark could comfort him. Once he started to recover, the damage to Broca's area healed slower than the damage to Wernicke's area, which is why he was eventually able to speak, albeit slowly, and why he still babbled gibberish when he was upset. I tried very hard to keep this story true to life, but all errors in this aspect of the story can be chalked up to an incomplete understanding of the facts and a certain amount of artistic license.
Music therapy has been shown to help people with Broca's aphasia. They can remember words when learned in song better than when learned through other methods. I came across an audio sample of a man with Broca's aphasia talking. When he had to speak freely, he struggled incredibly. When he was asked for certain numbers, he would count up to them (a sequence is sort of a song without music) and then say the number. He had to start at one every time. Would you believe I wrote Steve's idea web (remember he started with A every time at first) scene before I found that?
Aphasia affects speakers of different languages in different ways. As a language teacher, I think this is because the internalized rules of the language are different, but I have no research to back that assumption. Some research is currently being undertaken to determine which symptoms of aphasia are universal and which are language specific.
EXPERIMENT:
Now, here's the experiment to demonstrate what I meant about language being a set of symbols.
1. Tell me the subject, verb, and direct object of the sentence below. (In case you're not familiar with the grammar terms, a subject is who or what does something in a sentence, a verb names the action that the subject performs, and the direct object tells who or what they do it to.)
2. Also, how many subjects perform the action and how many direct objects have it done to them. Is the subject (a) person(s) or thing(s)? Is the direct object (a) person(s) or thing(s)?
3. Is the action something good or bad? Why? When does it happen?
Assume it is an English sentence. Answers and examples appear after the links.
Kerfludam befudgeled the musterbuns.
Links (You will have to copy and paste them into the browser)
http://www.healthlinkusa.com/content/22.html
By far the most useful site I have found. Has a list of links, including a very practical list of Do's and Don'ts. Some of the links are dead ends, but most of them are good and full of useful, easy-to-understand information.
http://www.nhsdirect.org.uk/nhsdoheso/display.asp?sTopic=Aphasia&sSection=Introduction
Discusses diagnosis, symptoms, causes, treatment, and prevention
http://www.nidcd.nih.gov/health/voice/adultaphasia.asp#1
Provides a very brief overview of the disorder, and discusses current research
http://www.aphasiahope.org/
Lots of information, tips on communicating with patients, stories of personal experiences, even a video. The following links are from pages of the Aphasia Hope Foundation site.
Tips for family, friends, and patients.
http://www.aphasiahope.org/tip.jsp?id=3
http://www.aphasiahope.org/tip.jsp?id=4
http://www.aphasiahope.org/tip.jsp?id=1
Personal experiences of aphasia patients. Several of them are particularly touching.
http://www.aphasiahope.org/experiences.jsp
http://www.imssf.org/aphasia.shtml
Provides another overview of various types of aphasia, but gets somewhat technical.
http://www.csuchico.edu/~pmccaff/syllabi/SPPA336/336unit5.html
More characteristics (symptoms) of aphasia
Here are the ANSWERS to the EXPERIMENT questions.
Kerfludam befudgeled the musterbuns.
Kerfludam: Is the subject. You may have recognized it because it is at the beginning of the sentence. There is only one because there is no s to indicate the plural. You might guess that Kerfludam is a person because there is no a/an/the/my etc, but it could be any proper noun.
Befudgeled: Is the verb. You might have guessed that because of the -ed past tense indicator. As far as if it is good or bad, that is up to you. A lot depends on how you 'hear' it and what words you connect it with. When I heard it in a college course, I thought it was bad because it sounded like "befuddled." You can tell it happened in the past because of the -ed ending.
Musterbuns: Is the direct object. Again, you probably recognized it by its position in the sentence. The s makes it plural. Musterbuns could be people or things, but it's not the name of a family, national, or ethnic group (like the Smiths, the Japanese, or the Europeans) because it is lowercase.
If you are an English (British or American) speaker, you probably guessed all of the parts of the sentence correctly because the human brain is 'hardwired' for language. We automatically search out patterns and meaning, so we recognize the first part o a sentence as a subject, the -ed as the ending of a verb, the noun after a verb as a direct object, and the -s on the end of a noun as a plural form. Steve was able to interpret language, but until he started speaking properly again, he could well have been saying things like "Kerfludam befudgeled the musterbuns." I just didn't show it b/c it was so much easier to show his intent in italics.
Check out this website for more fun with language symbols:
http://www.jabberwocky.com/carroll/jabber/jabberwocky.html
If you chose to read this through, I hope I haven't bored you with all the terminology. I just found it all fascinating and wanted to share. I actually enjoyed putting all of this information together, and I hope if someone out there has found any of this helpful, or has found more useful information for me to add, you will contact me. You can find my e-mail address by clicking on my penname.
Again, thank you for reading this story, and if you made it through this final installment, thank you twice. Because of my experience with my Uncle Herb, this story had a special meaning for me, and I really wanted to share what I have learned.
MERRY CHRISTMAS, HAPPY NEW YEAR, AND GOD BLESS YOU AND YOURS!