World Getting Smaller
Recently I have been amazed at just how small the world seems as I am now able to make more friends who want to learn more about foreign accent syndrome almost daily via the power of the world wide web.
If you have been following me for any amount of time, you know how frustrated I am by the limited amount of information about Foreign Accent Syndrome. I had a bit of a breakthrough last week as friends and Tweets pointed me to a newer case that has been widely publicized regarding a lady in the UK suddenly speaking with a Chinese accented voice after suffering a migraine.
The BBC did a story, CNN and other news articles suddenly popped up all over the place. I really believe I know how she feels as she is tired of the novelty of the fact that she sounds different. I know what she means when she says that she want her “real” or “old” voice back. As a result, I sought to contact Sarah and have since connected. I look forward to speaking with her by phone sometime soon, but in the meantime we are in touch across the ocean and time zones via internet.
Then, there was a television program that aired on the Science Channel, but which we don’t have that broadcasting channel. The title of the episode is called “Secret Life of the Brain: Losing Myself.” (If you discover a link or another broadcasting please let me know in the comments). Though I have not seen it, apparently, it touched on Foreign Accent Syndrome and raised a lot of interest from people who had never heard of it before. Twitter was alive with people who couldn’t believe what they were hearing.
Through those Tweets I discovered some new contacts, one of which is a French speaking writer of medical papers who writes “The Brain From Top to Bottom” (here is a link). Those writings helped me learn even more about the brain and how it functions or dysfunctions.
With this sudden influx of interest maybe there will be some advances in the study and dissemination of scientific research. We can share in the hope of knowing that people are taking the matter seriously. We can share our struggles and insights to encourage one another. That would be an answer to the prayers of the few who are having to endure living with such a rare disorder that so profoundly affects their identity, that is not easily explained and to which there is no accepted treatment or cure.
Since we have used the internet to shrink the world, maybe now it is time to use that same mode to make awareness larger in the world.
Unbelievable!
It happened again. In the midst of a social fun time, I was snapped back into the reality of the fact that this speaking voice of mine is not my “real” voice. I was questioned about my Foreign Accent Syndrome at length by a doctor who simply couldn’t believe it.
I was enjoying a lovely time out at a local establishment to listen to one of the bands my husband plays bass in; The Usual Suspects. I really do enjoy going to hear them play, not as much as when we play/sing in the same band together, but still a lot of fun. Music is still one of my all time favorite escapes.
I think that may be why it was such a jolt to the night when the normal “where are you from” became more in depth than usual. It turns out that one of the visitor’s for another band member is a doctor from New York and he flat out couldn’t believe me. So I had to go into verification mode at a time that I would have rather been enjoying the music, singing along and joking around with the other people. Don’t get me wrong; I think that it is neat that a young doctor is skeptical, but the timing of this particular encounter was unfortunate.
Because I know how very rare this disorder is, I feel an added responsibility to communicate the information about Foreign Accent Syndrome. However, because I am not a specialist, a doctor or someone who works in the medical field, my words are often held up to greater scrutiny and skepticism by those who do have such professions.
As a result, at a time when I would be relaxing and just enjoying, I now had to go into “work” mode. It is real work to try to describe something that has happened which is so rare. I’d offer proof, he’d counter with another question, and on it went. After several minutes of this, I told him that he should go ahead and look it up on the internet, but not to be surprised when he doesn’t find much information. I am one of 39 medically documented cases in the world . . . ever.
I was relieved to see that he had an internet capable phone so he could continue his query there. Which he did. So I was able to enjoy the last two songs of the first set. I was further relieved when my husband joined us at the table and further questions about its authenticity were confirmed for the young doctor. I have nothing against the young man, it simply was a timing issue and the fact that it made me “go there” at a time when I just wanted down time.
It is sad to believe that I can never really escape from this new voice’s impact on my everyday life. It is sadder still that some professional people will question my integrity when faced with something that they don’t know. I think that’s really what bothered me. I am telling the truth here. How can you stand there and call me a liar? Yes, it IS interesting? But what can we DO about it? What can we learn? How about being helpful instead of being skeptical?
Although I wrote those thoughts from a carnal viewpoint, I do see something to be learned here. First, I can be sensitive to the fact that there are some people who cannot help but be skeptical about things they have no former experience with. Second, I am more sensitive to their insensitivity. I need to realize that it is not his intention to treat me as if I am a liar, although it feels that way to me. This is more mental “work” for me on top of the corrections to my speech as I communicate using this foreign voice.
So the take-away from this little life experience is this: although I thought he was thinking less of my integrity, he really simply couldn’t believe the fascinating medical manifestations. It was not that he wasn’t believing me. I took it too personally. It was simply “unbelievable”!
I thank God that he has given me the wisdom to keep such upsets inside myself so that I didn’t get snippy or impolite. Also, the humor mode that allowed me to take an uncomfortable topic and make light of it at my own expense allows me to lighten up. That gets me through the moment. Then, later, I can really analyze what transpired so I can prepare for the next time such a thing happens.
Live and learn.
Six Months with Foreign Accent Syndrome and counting
It has now been six months since I first contracted Foreign Accent Syndrome. Here is a fascinating video where I discovered that there was another person in a nearby area who had a similar manifestation in which her normal speech was replaced with a strongly accented way of speaking.
Next, let me say, that the video below is NOT staged. In fact it is extremely impromptu as evidenced by our lack of fine attire and makeup. Nonetheless, I think it is important to show this video to people in order to bring to light an extremely rare medical condition.
Fran found me via a local radio station who had interviewed me from time to time. “Fisher Fran” as we affectionately refer to her has episodes of a few days with it. Her case, waxes and wanes with a good deal of normalness in between. She has other body weaknesses that resemble multiple sclerosis whereas I do not.
My foreign accent has continued for over six months now without relenting. Although, I have noticed improvement in some words as I apply tricks that I have developed through speech therapy. Another difference in our two cases is that I am able to sing in my “normal” voice, whereas, Fran cannot sing at all when she becomes accented (even though, she to sings for audiences).
Here is a video taken of me (Eastside Ellen) and Fisher Fran back in June 2009. At that point I had been speaking with foreign accented speech for a month and Fran was in day two of an exasperation of her symptoms.
This video was captured by Fran’s daughter and so is not exactly framed as well as a more experienced photographer would have done. PLUS… she and I were both in our grubbier clothes as we rushed to meet with one another without the benefit of clothing changes or make-up. We were just so happy to discover that we were not the only one with this problem that we couldn’t wait another moment. As you see in this video we are quite happy to have found one another and are enjoying our ability to joke about our situation in a unique way.
However, let me stress this. Foreign Accent Syndrome is NOT a joking matter. Rather it is an extremely rare medical malady involving the Broches’(speech) area of the brain. It is reported that only 39 medically documented cases have been reported…ever…in the whole world. Because it is so rare, there are not many doctors who even know about it. Therein lies the problem. If they are unsure what causes it, how to fix it and it is so rare. There is not much help for a person who has it.
In fact that is the main purpose of me documenting as much as I can about it. Researchers could learn a lot about this if they applied themselves. Because it is such a rare occurrence the argument may be made that there is not much point in researching it from a cost benefit analysis standpoint. However, since it involves the study of the brain and speech/accent production, I think that this is a pioneering area that some university or speech pathology school would want to investigate more.
As one who has now endured it for six months, I am learning that I am teaching my speech pathologist at the same time she is teaching me. This is unchartered territory here. So it is going to take the willingness of all involved to recognize that we do not have all the answers. In fact, we must admit that we have far more questions than answers. Yet, since I am the one living with Foreign Accent Syndrome, I am a self-made researcher trying to document for the benefit of medical knowledge and hopefully to bring a sense of understanding to both the sufferers and their loved ones.
I am going to try to get another video with Fran and me together within the next few days. This time I WILL at least look better for the camera : P
More Than Lip Service
This last week I have had a few more noticeable set-backs. As the clouds and wind build while we enter the Autumn season, there is more cold, dry air and pressure changes and less sunlight. All of this is the “perfect storm” of symptom exasperation when it comes to chronic pain and fatigue.
What I have also been learning is that it seems to also make my foreign accent much harder to correct. Prosody (word order) as well as pronunciation and word finding ability all suffer when I am more tired.
It is also notable that when I do not spend the day talking to myself (to the amusement of the dog and parrot, I’m sure) while my family is away most of the day, I find that my speech is MUCH worse when they get home.
I have recently made a renewed commitment to reading through my Bible over the entire year and am in Isaiah and 1 Timothy. I also use that time to read aloud and let the foreign accent show it’s full force as I read scripture. The FAS naturally adds a different feeling while reading as the emotions are different as the accent adds a unique flavor which is way different than my usual speech used to be. My speech therapist says that the reading aloud is good for helping create new neuro-pathways as well. It’s a win/win!
The adage, “practice makes perfect,” may not really apply here, however, practicing out loud is how I actually hear the processing of the words and am then able to note it, work on it with some tricks to more closely correctly pronounce it, repeat and then move on.
Here is an example: The word: people. When I pronounce this word, it comes out naturally sounding like Pee–poo0. I remember Terri Stacey actually giggled at that one. The ‘l” sound just won’t hop into the right place at all. So I developed a trick. When I say the word “people,” I think about being behind an apartment door when someone rings the bell. I look through the PEEP-hole to see the people! By visualizing this trick, I can say PEEPhole and it more closely resembles “people”. It seems like a lot of work, but it does work for me.
Then there is my “POOL” / “PULL”/ “POLE” –trick. When I tried to say “pull,” it natually would come out Poo-wel. So in order to say the sentence “Please pull the door open,” I now FIRST say in my head pool/pole/pull… the two extremes of the vowel plus “L” sounds help me then settle into the middle sound which is the correct one I want.
Today I worked on the word “SCHOOL” which had a very similar pronunciation, but was much harder for me to develop a trick for. I finally settled on this: when I know I’m about to say “School,” I substitute “SK-wool”, while barely even touching the “w”. I envision a sheep which has a price scanning SKU on it. SK-wool. “Where are you going to school?” Weird huh?
Though there is a LOT of processing happening as I try to “fix” the pronunciation of words, the stress given them within the syllables of the word and within the words of a sentence, I am in affect, developing “tricks” to use on the tricky words (those that give me the most trouble). I joked with a friend at church, I sometimes feel like I’m a walking Tower of Babel.
However, that tower was built as a testament to what God could do and it was God who created the different tongues so that the people were forced to scatter. I find with this Foreign Accent Syndrome affliction of mine, people actually flock to me. People continue to ask the question “where are you from?” and make the statements “I love your accent. I could listen to you talk all day.” The gatherings that come to me allow me to testify. This is what Foreign Accent Syndrome looks like in me. Then I sing a tiny bit, so that they hear my “real” voice. The jaws drop. Then, while their mind is open to the wonders that they just witnessed, the door is wide open for me to share with them how we are “fearfully and wonderfully made.”
More than ever before, I see how I MUST work to correct my pronunciation of the word “people,” because it is people I want to reach. I am learning, it is not so much the pronunciation that is a hinderance, it’s that I might not say anything at all to another person about the good news of the Gospel and the glorious hope that there is right now. It is not so important HOW I say it or about my fear of what the other person might think of me. What’s most important is that there is something of great value to communicate, so don’t wait. Who doesn’t want to receive an encouraging word and a smile? Or a nod and a statement like “oh, I’m sorry for your trouble,” or “I care about you. How can I help?”
Interviewed 09/01/2009
This morning I was interviewed by the cheeriest morning personalities of Indianapolis on WIBC 93.1 FM radio; Big Joe Stayzniak and Terri Stacy. These two people (pronounced [pooewpl] by my foreign accent) have been great supporters through this ordeal.
Here is the sound file from this morning’s interview.
Acting to be Normal
I have had a few revelations this week in regard to my ongoing adventures with Foreign Accent Syndrome. As I was doing some voicing exercises to try and elleviate my foreign accent (or at least diminish it), this thought occurred to me. I have to ACT, to sound “normal”. I have to be fake, to sound right.
In order for me to reduce my heavily accented words with their often misplaced stresses and intonations, I have to “make myself” think something different. If I imagine that I am stuck in traffic and so I grow more and more irritated and to the point of speaking angrily, THEN I can say the word “people”. This is one of my hardest words to say right now. You would say it PEE-pul. I would say it PE-Pooo.
In otherwords, if I became a method actor and placed myself into a fake situation and really pretended, I can produce speech that is more normal. There are only two problems with this technique. Number one, I am not an angry person; and, number two, I absolutely hate lies. To me, this pretending is acting dishonestly and therefore a lie. That is troublesome. I realize that I am not “really” lying, yet it really does feel like I am being dishonest, so it hinders me a bit. I have to then talk myself into acting in my head in order that the sounds might come out more acceptable to the expectations of my Midwestern United States of America audience.
I think of my vocal singing work over all these years. Music directors would tell us to do some alterations to our regular pronunciations so that the audience would better understand what we are singing. Here’s an example you might understand. Great is Thy faithfulness, oh God, our Father — would be sung: GrA Tiz thigh FAith foolness; oh gah—dour Fath-er. Hopefully, some of you understand the concept.
In a similar way, I must now do a bunch of behind the scenes gymnastics with syllables of sounds to try to just speak without such a strong foreign accent. This week in one of the speech sessions I was to pronounce the two words “POOL” and “PULL”. However, when I pronounced them, they sounded pretty much the same. The two speech therapist ladies tried to correct my pronunciation of the “u” in “pull”, but I could not hear the difference. I could mimic her, but not just catch and apply the proper sound of the vowel. Finally, it dawned on me that the vowel sound should be closer to the sound in the word “pole”. So I said the three words, “pool — pull —- pole.” THEN, I got it. The vowel sound in “pull” just feels slightly more toward the sound I make in the word “pole”. So I use this exercise to hear the tiny difference and make it easier to pronounce the word “pull”. A lot of work for one little word, huh?
