On May 12th of 2012, I am celebrating the anniversary of a milestone in my life, namely just completing my third year with Foreign Accent Syndrome. It was such a dramatic change in my life that I am thankful I have some audio/video captured to show a bit of the journey for the sake of medical documentation as well as public information.
For those who have not heard my “old” voice (a.k.a. “normal voice”, “real” or “original” voice) here are a couple of pieces wherein I am being interviewed, and another where I am the interviewer as well as much more normal speech patterns.
February 3, 2007 –Before foreign accent: This is a video of me being interviewed after giving a seminar on using new media tool of Flickr and tagging photographs for better communication across the world wide web.
May 24,2008 — Here I am both interviewing AND filming a piece about a local ministry that accurately reflects my normal speech BEFORE I got Foreign Accent Syndrome:
THEN IT HAPPENED — MAY 12, 2009 — FOREIGN ACCENT SYNDROME changes my speech and a big part of me is gone!
May 26, 2009 — 2 weeks – my first radio interview in which I actually tell about how I got it and with my brand new voice! http://ellen5e.com/wp-content/uploads/2009/05/wibcinterview090526.mov
June 15, 2009 — 1 month after onset of Foreign Accent Syndrome: here I had an impromptu meet-up with Fishers Fran who occasionally has “bouts of Foreign Accented Speech” when she goes through multiple sclerosis type symptoms. She coined the phrase “flipping” for those times when she goes through it. Most of the time she is normal speaking. She found me via the Indianapolis radio station where I was routinely interviewed.
The June 19,2009 (1 month) video greeting is glued to the top of my Ellen5e.com web site.
November 12, 2009 –6 months after onset:
May 13, 2010 — at the One Year Mark with Foreign Accent Syndrome:
November 13, 2010 — One and a half years with FAS:
November 20, 2011 — Two and a half years with FAS (I am behind the camera asking the questions):
This is a pretty good library of audio/video documentation for now. I shall have to record some newer material for my actual “FAS birthday”. So you’ll just have to check back later.
I know that part of it is getting more comfortable with unusual sound and speech patterns as well as my avoiding using those words that I know are my “bad” words. Those being the particularly heavy accented or hard to pronounce words that stop a listener from hearing what I am trying to say because they are so hung up on its sound that they are busy figuring out from what country I originate.
In the meantime, I would greatly appreciate your observations about what you think of this bizarre Foreign Accent Syndrome. How would you describe my speech? What language do you think dominates the accent? Do you notice a change over time?
Please allow me to thank you in advance for ANY observations you have. Because your unfiltered input helps me better gauge how the general population views those of us with such a rare condition that takes away a part of our identity by making us sound like someone else.
Ellen’s A&E Filming Tale By Ellen Spencer on 2012.03.04
Saturday, May 15th, 2010. It was a very fatiguing day filming (15 hrs. Different locations and wardrobe changes), but it was well worth it.
I was contacted by a California production crew who were legit and creating a pilot for a new science series to be aired on A&E. This was the day they arranged to fly in to film my story. The crew was fantastic!
There were legal papers signed, confidentiality, permissions, location filming paperwork, etc. Of course, my husband read these things first. My entire family was involved and interviewed as well. Also a dear friend agreed to meet (husband called & explained that there was a surprise and film crew involved). Bob is a friend that had been closer than a brother from our old church and music ministry with us, but he had not heard the news of my FAS nor heard me speak with changed voice yet. They wanted to capture his initial shock on film. Etc. Again very well done.
The production team filmed me as the had me talk to Dr. Jack Ryalls over a speakerphone call that they prearranged. Then I was told by Dr. Jack on that call … Yeh, sure, he’d be happy to send me several contacts of FAS experts that he know so that I could seek help. Even mentioned some universities who were holding research and doing more precise fMRI and other brain scans and speech analysis than were not being found in my area. He told me on that call that he would email me those contacts As well as files/articles of others who had FAS but now regained their original voice. He told us that he was pretty sure that my original voice would return. I cried! Tears of hope! All of it was caught on film.
Then, in mid afternoon the film producer had arranged a professional accent coach to visit me at home. She drove to Indy from Chicago just to meet with me. Like my good friend, she was not given details about my FAS so that they could film her shock at hearing me speak for the first time.
Her career is helping people acquire, practice and perfect accent. She routinely teaches actors like Kevin Costner ready for a Hollywood film through coaching and speech exercises. This lovely Christian lady hit it off with me right away.
They wanted to have her tell them “where is her accent from?” then I explained FAS and what little I knew about it.
They filmed her running some short accent/deaccenting exercises with me after I sang (in my normal voice). She offered to coach me for free up in Chicago, just contact her. The producer said he would arrange that.
Finally after a very favorable and professional day of filming for 15 hours, I knew there was a crew of four guys and a professional accent coach who had erased their prior scepticism of Foreign Accent Syndrome being very real and fascinating. Not only that, but as they prepared to leave our home that day, every single one of them expressed genuine care & concern as a new-found friend.
They were on a super tight schedule or they’d like to visit more.. go out to dinner together, etc. I still am friended up with: the Asst. Producer who was in charge of the project; the main camera man (who films The Amazing Race, Pit Boss and other well known shows –He has GREAT stories!) ; another young man in the crew was “Straight-Edge” so I learned about that culture as well. Memories and friendships were made on that day.
I was told by the producer that it would take them a couple of weeks to finish the editing to produce the story for presentation to A&E and then they’d send me a copy. Ultimately the run date would be up to A&E. This series project was slated for possible fall line-up (2010) When they had a date of airing they would let me know.
Well, when all was said and done:I was left very hopeful on the actual day of filming. This story would air on a reputable station and actually demonstrate the true story of FAS to the world!! More awareness would lead to less ignorance in the public and more research and effective treatment plans!!!
Not only that, with so few reports or facts posted on web –Dr. Ryalls promised he would be hooking me up with some contacts. PLUS… with his help the producer said they want to help me by setting up and paying for those future tests and treatment !!!!
What a day it was! There was much accomplished, connections made. Most of all — there were all these promises of helping not only myself but a lot of other people with this rare disorder. So many hopes and promises; What could be better?
As time went by my elation was replaced with disappointments. Broken promises lead to broken hearts.
To start with, Dr. Ryall’s NEVER sent me ANY FAS contacts he had promised (even after I resent requests via email). Nor has he done so on the Foreign Accent Syndrome – New Facebook Group page. There has been years of opportunity, but nothing but the disappointment of broken promises.
The additional medical help that they said they would hook me up with NEVER happened.
The film producer borrowed a few of our home-movie VHS tapes to transfer into usable format. It contained footage of me and family before FAS voice change. So I looked forward to the processed digital file copies they promised when they sent back the VHS tapes back in a week or so. Although I received my precious tapes back, there were no other DVDs.
I NEVER did receive a copy of the story NOR has it ever run. Even if A&E didn’t “take up” the project… I still should have received a copy.
Originally I was told that although there was a lot of footage they’d send me DVDs or digital files for me personally.
This was all done in May 2010 (almost exactly 1 year after my onset) — it’s now twol years since the filming . . . two YEARS…. and NOTHING…not even a copy for myself. :-(
“Hope deferred makes a heart sick” — Proverbs 13:12 (NASB)
So, now you may better understand one more reason why I am so passionate about Foreign Accent Syndrome Awareness. <3 You can find a group page entitled “Foreign Accent Awareness” on FaceBook. I welcome you to join that group and post questions or links to information that you may have yourself. Here’s a direct link Foreign Accent Syndrome Awareness.
We cannot depend on others to help us when Foreign Accent Syndrome is already so rare that not many people (let alone doctors) have ever heard of it. However, by sharing what we know and being available to do whatever we can, we can; increase awareness, encourage research, foster compassion and understanding. This will be making an impact! “ACTION” !
After seeing again and again the myriads of unkind remarks made about Foreign Accent Syndrome sufferers, I’ve decided that I must get much more active about blogging again. So here are some facts for those who wish to inform themselves.
Not to say that there are not some people who are good at impersonations and mimicry. BUT to say that Foreign Accent Syndrome is a “mental” disorder instead of an actual “neurological” disorder shows that a person has not do their research. There is such a thing as “conversion disorder” which is a mental condition that can cause all kinds of body, speech and behavioral dysfunction. However, this is NOT what Foreign Accent Syndrome is.
In Foreign Accent Syndrome there has been actual neurological damage done to the speech area of the brain. The main ”speech area” of the brain is called the Broca area. In some way the neural-network has been damaged. The brain has been traumatized through accident, stroke, migraine, etc. People who wish to make fun of that should consider the people they hurt in doing so. Implying that ALL such cases of dramatic accent changes are fake is demonstrating ignorance, foolishness or worse, disregard to someone who is suffering from a REAL physical malady.
With under 100 medically diagnosed cases in the world…ever… Foreign Accent Syndrome is only just getting talked about as some of our cases are getting discovered and blasted all over the press and web. So at this point, ignorance outweighs knowledge. Sensationalism is tramping all over educational journalism. So let’s get educated!
The numerous slams and cynical remarks posted across the internet is one of the main reasons we don’t hear of more legitimate cases, no doubt. It is fearful for the general public to realize that BOOM suddenly this person started speaking with a different accent. Plus they can’t just change it back!
When you get to hear about these people’s real lives, they are no different than YOU! The fear that people feel of the unknown, and not having a way to assure it doesn’t happen to them may be one excuse why they lash out and try to deny it even exists.
Some neurologists who have studied those of us who are enduring it know that a fake accent cannot be maintained. The true patient suffering from FAS cannot maintain their “original voice” accent while they are suffering from Foreign Accent Syndrome.
An FAS person has to undergo monumental thought processes to speak, and when they do the listener detects an accent (that they were not born with, nor studied, nor were exposed to). The neural pathways that are used in speech production have been changed due to the damage to the brain. So the resulting speech sounds foreign. There is still much need for more research.
When they talk in their sleep, on the phone, to themselves . . . it still comes out sounding ‘foreign’. It is NOT a sideshow to gain attention. It is a phenomena so very rare that it is routine for even the doctors in their hospital to have never seen a case before meeting them.
So PLEASE don’t attack Foreign Accent Syndrome people this way. It is unkind. Rather, inform yourselves. I have a web page (ellen5e dot com) or look up Foreign Accent Syndrome Awareness group on FaceBook and ask questions. Talk to some of us who have had it a few years and you might actually learn something amazing.