FAS Friends
I met with a new friend tonight who I call “Fishers Fran.” We both have Foreign Accent Syndrome, (an extremely rare
Eastside Ellen and Fishers Fran shake up a local Steak 'n' Shake. ---Photo by waitress Cloe.
medical condition that causes a person to speak with a foreign accent that is not their own) and live in the Indy area.
Fran had some friends tell her about hearing me on the WIBC 93.1 FM radio spots I’ve been doing over the last couple Tuesday mornings by invitation of the Morning Show personalities Terri Stacy and Big Joe Stayzniak. Her friends told her that she must listen. Then Fran took the initiative to call the radio station and they passed along my name and told her I was on FaceBook where she sent me a message.
Last Tuesday evening when we first spoke by phone, Fran had her normal voice. Her foreign accent came on suddenly for her along with left side neuromuscular symptoms back in 2005. Unlike me, her regular voice has returned, but she does have episodes where the accent returns for a few days. In fact she recently was interviewed about her Foreign Accent Syndrome story in an article for the April Issue of a magazine that is popular with the Catholic faith. I am sorry that I do not have the publications name right now, but I will edit this post when I have it.
Today she called to say that her voice has “flipped” so that she has the accent again. Her voice does have strong similarities to my own, but is definitely different. She can say some long “A” sounds that I cannot, and I can pronounce the “SK” sound that she cannot. So it was very enlightening as we met at a northeast side Steak and Shake for a friendly supper. Many patrons stared as we spoke and laughed together. Our waitress asked the inevitable “where are you from” question. To which we both smiled and replied “where do you think?” “Think” was pronounced “Sink” by Fran and more like “Tink” by me. Our waitress took a while to understand the fact that we are not FROM Europe and now living in the Indiana. Rather, we are both Midwestern Americans who are speaking with very strong foreign accents. She guessed Fran as more Eastern European and me she placed as Irish. LOL. Anyway our waitress Cloe was kind enough to snap our photo with my camera.
Given that there have been reportedly less than one hundred cases of Foreign Accent Syndrome ever reported worldwide and that so very few people, including medical professionals, have even heard of the affliction, I believe our budding friendship is an answer to prayer! It was encouraging to talk to someone who understands what it feels like to not have the voice/accent you have had your whole life. I feel greatly blessed by meeting her, and especially since she is within short driving distance.
We may have discovered a new comedy team in the making as well. We thoroughly entertained Fran’s daughters and husband with our silliness as we each corrected the others accent. Though our accents have some similar qualities, Fran sounds more Eastern block European (more Russian), whereas my accent sounds more French mixed with Norwegian. Her husband said that we sound like we are from different parts of Europe, but European all the same. I think it was an encouragement to her family as well as we were able to lightheartedly share our stories. Her family was able to see another person with the same thing happening so that they could feel less alone in the peculiarity of it.
Below is the link to a video that her daughter Celia shot of us. Please be kind to us as this was totally impromptu shooting so I am not wearing any make up and am looking more unkempt than I would have liked. However, the spontaneity of the shoot makes it too good not to post.
Foreign Accent Syndrome Friends
Now, I really would like to hear what you think about this post so please leave a comment. Thanks.
Weekly Check-In At WIBC 93.1 FM
Tuesday mornings at 7:45 a.m. has become a time to report in to the local Indianapolis radio station on what is happening with me and the Foreign Accent Syndrome. This is a time when I pray that God will use me to reach out to the community with what I am learning through this trial. It is a time to reflect and communicate on how people talk to one another. Since communication is one of my greatest passions, I see this as an opportunity and am thankful for the chance to bring some insight as I am going through it.
I do get a lot of compliments on my good attitude as I go through the frustration and predictable concerns of any person going through an unpredictable dilemma. Again, opportunity through the trial, as I am allowed to come back to the fact that even though I do know what is happening . . . God does!!! And there is the source of my peace. Not once is God surprised by what is happening.
Here are the two audiio files for you that can listen to them… the first one in particular is quite small as it is just a teaser.
Then Terri and Jaimie do the actual segment with me at the link below.
The general contents of this weeks report were about
What accent would you like to speak with if you could choose? How long has it been and what have they done for you? How do you react when people keep asking where you are from? What about speech therapy? It is very rare and research and hard to learn about. Will your original voice come back? How people can think or do to people with FAS that are so cruel. Are there any good things as a result of talking with an accent? Do people treat you differently? Mentioning of teaching 4-H dog club. Terri announced my website (this one) Ellen5e.com so that people can keep up and comment themselves.
Just before signing off of this broadcast the producer Dan recorded me saying the following sentence: “The rain in Spain falls mainly on the plain.” They are going to compare me saying this sentence from week to week to see if the accent starts to change back.
They ended the broadcast by playing the Swedish national anthem saying that they may use that in future when I am coming on. However, I do not think that is such a good idea. I do NOT want true Swedes to be offended and as I said in today’s broadcast… though much of my word pronunciations take on a Swedish strong “oo”s and “u”s; it is NOT a true Swedish dialect. So I will be thinking of a different theme song for the segment… do YOU have any good ideas?
As always I appreciate your reading this and sharing any information that YOU may have about this incredibly rare and troubling medical condition called Foreign Accent Syndrome.
Let’s Get Serious
We are fast approaching a month since I first had this strange accented voice coming out of me during normal speaking times. And yet, there has been very little “medical diagnostic” progress. Since being discharged from the hospital I have been to one appointment with a speech therapist, and another appointment with a new neurologist. Both of these professionals had never even heard of Foreign Accent Syndrome before. Likewise, both of these occasions had people believing that I was simply a foreigner speaking English with a foreign accent? “Where are you from?”
But it was when the new neurologist asked me, “so why are you here?” that I became the most frustrated. These new doctors who had not known me before the affliction, do not truly grasp the severity of my problem. At least the new neurologist entertained my theory on the matter and took the material I had printed off about F.A.S. He almost seemed to dismiss it though in statements that were similar to “but you did not suffer severe head trama,” as a precursor to the malady. I pointed out that there was one case in particular where a woman had IDENTICAL symptoms in regard to right facial numbness and even down her right arm and hand prior to her diagnosis with F.A.S..
Upon leaving the neurologists office, he had provided me with some links to such organizations as N.I.H. (National Institute of Health) and also set me up for an E.E.G. to be conducted on Friday June 12th. Otherwise, I’m not coming back to see him until 4 to 6 more weeks.
In the meantime, I try to remain upbeat and humorous. However, it IS difficult as I struggle to say some words that don’t get along with this heavy accent. Also I notice that the speech pattern and order (way in which words are put together: nouns, verbs, adverbs etc.) and unexpected inflections and stresses are placed in the words or sentences as I speak. If I think about catching all the “errors” I get a headache!! So, a lot of times I just allow myself to “sound funny”.
I’m getting the feeling that many doctors are not getting seriously proactive about getting to the bottom of what is going on because they don’t appreciate the profound difference it has made in my life. Many of the newer doctors and nurses were basically strangers to me before now and so do not know the “real me”.
So, I made an appointment with our family doctor Dr. Patterson. The medical office manager noticed my accent right away. Nicole was also the first person I called when I first woke up with the numbness spreading down my right arm almost a month ago. She is the one who talked to Dr. Patterson and then told me that he wouldn’t be able to see me in the office that day and would not be able to diagnose me over the phone so to “go to the Emergency room if you want to.” It’s a good thing I did. Although, that CT scan did not show a stroke, the ER dept. did notate some of the early symptoms and timeline right as it was happening to me. That was the Methodist ER on Tuesday, May 12th.
It was the delay of not going to be able to see anyone before Friday along with my new speech difficulties that prompted my Chronic Pain Group friends to assist me in getting to the Clarion West Hospital ER on Wednesday and then I was admitted for two days. Final diagnosis after a second CT and an MRI, “slurred speech of unknown origin”. Dismissed with instructions to follow up with a new neurologist and outpatient speech therapist.
Back to the more recent past: last Friday Dr. Patterson talked with me and was shaking his head in disbelief as well as all of my friends. It is profound! This strong accent just isn’t ‘me’. Yet everyone says, “at least you have a charming accent. I rather like it. I wish I had such a lovely accent.” I know they mean well, and it is something that I am grateful for, however, I want to know ‘why’ and for ‘how long’ and these kind of things.
In the meantime, I am scouring the internet and growing my research file of articles and names. Names of fellow sufferers and the details of their stories, names of doctors, neurologists, speech pathologists, specialists of all kinds and areas of expertise. Above all, I am looking for contact information. I very much believe that what is going on within my brain is a benefit for research into brain function or malfunction as it may be.
Above all else, I am fighting to endure the voice that isn’t really me. To make it pronounce the words more correctly, or leave out all the ‘ah’s” that sneak in between words of a sentence. To shorten those incredibly strong and long “U”s that make so much of the sentence sound Swedish. This week I have managed to finally be able to say “yesterday” without flat-0ut stopping between each and every syllable. I simply have to swallow back the “er” sound that wants to be so pronounced with stress. For you it may look like “yes-sird-aey”. You would not believe the effort it took me a week to get this down, and I still sometimes get hung on it a bit. At this point I am not scheduled for any other speech therapy. I am making these corrections with the help of my very patient 19 year-old daughter and saintly husband.
So far my trying to contact others via email or linking to this website in an attempt to aggregate the information into one place, have failed to produce a connection to constructive help. I do see that the once a week segment that I’ve been doing with WIBC 93.1 FM on Tuesday mornings at 7:45 a.m. ET have been impacting others.
That is an answer to prayer! If I must go through this. AND I or any of my doctors know “why” . . . then at least, I can marvel at the peculiarity of the situation… and laugh at the funny accent that is not my own… right along with them I will laugh and marvel. Because, when I am doing this, I am not alone and there is not sorrow. There is fellowship in suffering, in facing the unknown with the faith and hope that comes from knowing that God is and always has been in control.
I believe that none of this time is wasted. However, I do want to get movin’ here. It’s time!! Let’s get serious about gleaning what information we can medically obtain from this event. Can there be some therapy to help ease the strain of trying to correct the speech so much of the time? Would we learn some valuable information from a functional MRI and PET scan. I am certain that there is something profound happening within my brain in different places, because my singing voice is MY voice, not the accented speaking one.
In any case…finally, this week… I am seeing a glimmer of hope that at least one, maybe two doctors are taking my problem seriously and are actually going to help “light a fire” of some kind of action to help me do something productive in regard to this thing.
“Hello It’s Me”
Tuesday was another interview time with WIBC 93.1 FM radio friends Terri Stacey and Big Joe Stayzniak. I’m in a regular spot on Tuesdays at 7:45 a.m. for now. I am attaching the mp3 so that you may here the interview.
For those friends who do not have the bandwidth to listen to the interview (and you know who you are) here is a brief outline.
In the previous week’s time:
I saw a brand new doctor/neurologist who said “why are you here?” and who had never heard of Foreign Accent Syndrome before. Having never heard my unaccented voice, he didn’t notice the significance of such a drastic voice change.
I have been scheduled for an EEG test for the 12th.
We talked in the interview about how very many people hear me and ask “Where are you from?” and my standard answer is “Where do you THINK I am from? We are taking a vote and I’d really like to know what you think?”
Then I gave Terri and Joe the real wonderful news: my singing voice IS my voice. In other words, after having talked for a while in my accent voice I am getting a bit depressed about this not being MY voice. However, God has given me a gift; He has left me a bit of comfort. When I cannot stand it anymore all I need to do is SING. I then gave a sample of my singing “You are my Sunshine”…. Terri noticed it right away. “Wait a minute Ellen!! That is YOUR singing voice!!” I replied “Yes, that IS my voice… my real voice”, So God has given me the ability to sing in my REAL voice. : )
The interviewers made some kind comments about my singing voice. “Maybe God wants you to sing more.” They also commented on my positive attitude and said we’d talk again next week at the same time if it’s okay.
My answer? “Yah Shuuuure”
Laughter is the Best Medicine, Right?
This morning I was interviewed by our local Indianapolis radio station WIBC. Big Joe and Terri Stacey have both seen and talked with me at radio events in the past, so they know that this new voice is not my regular voice. They are as facinated by this strange occurence as I am.
This foreign accent syndrome is so quite an interesting phenomena!! There are many different videos about it on YouTube even tho it is so rare as to have only 100 people in the world with it. Apparently, it is so rare that not many regular doctors have heard about it before either.
They asked if I would come on the morning show with them to discuss this recent verbal U-turn in my life and I was more than happy to. I can think of nothing better than to share this rare occurance with my friends and neighbors over the 50,000 watts (or however big an area it is now), so that more people are made aware.
Also, as it is happening to me, I totally trust these dear radio personalities, because I have seen the love in their hearts for the community expressed over and over again. So I trust them to ask me whatever they want and I will answer it! They both are witty as well, so we can also have fun and laugh a bit, so as not to get bogged down with some kind of gravity of the situation. It is out of my control. I do NOT know if I will get my regular voice back, or if I will be continuing to sound like a world traveler that has never really gone anywhere.
This interview was a very good one — balancing out the bizareness with the scientific wonder as well as keeping it light with humor. Way to go Terri and Joe click this link to listen>> .wibcinterview090526
WHAT IT WAS VS. WHAT IT IS
I have had quite a few brand new friends who I have met via newmedia and on the internet who have never heard me talk before the “ATTACK” so when they hear me speaking on the recent video clips they do not think anything about my heavy weird accent.
ASIDE: By the way the votes for “What kind of accent do you think it is?” is leaning very heavily toward French and Swedish/Norwegian. One good friend has accused me of being a Russian spy. And one of my 4H dog club kids thinks I sound British like Victoria Stillwell of dog training fame.
BEFORE: To help those people who have never heard my “regular talking voice” here is a clip of me conducting an interview of an intercity ministry. http://www.youtube.com/watch?v=1JQjncoi9jc You will notice some hesitation in my speech as I am thinking of the questions off the cuff, but even a very untrained ear can tell I do not sound like the same person.
AFTER: Now… compare this to my most recent little clip from last night
http://www.tokbox.com/vm/b6ae3opqguin
You hear a very noticeable difference don’t you??
Friends, students and family are helping me to laugh about it, because if I don’t stay light-hearted enough it will make me want to cry.
THIS IS NOT ME!!
My regular voice is gone! Instead I am having to hear these weird accents coming out of my mouth. STILL, I am extremely thankful to have any voice at all. Can you imagine it?
I have had friends call me on the phone, and then just about hang up as they say “I’m sorry, I have gotten the wrong number.” I go into a quick “wait a minute! it is me, Ellen, don’t hang up!” Then I must give them some kind of fact that a stranger wouldn’t know, to convince them it is ME!! It IS me!!
It has now been a week and a half since the first numbness showed up, and almost as long that I have been speaking with a foreign accent. I sometimes get a bit down about the situation. No doctor has an answer about what is going on — we just don’t see any obvious signs of stroke or any bad tumor or anything on CT or MRI.
The speech therapist I saw on Wednesday was thinking maybe Bells Palsy, but some of the symptoms do not jive. I have just started finding something called “Foreign Accent Syndrome” mentioned on the web. So I will continue to research as I await my neurologist appt. on the 29th.
I praise God that He never gives us more than we can handle. I am being forced to
(1) speak funny OR (2) shut-up. Those of you who know my passion for communication (talking with people and about the Gospel) know which option of those two that I am taking.
Here are some things running through my head a lot lately:
“Be still — and KNOW — that I AM GOD!” –
We are fearfully and wonderfully made; tho’ this is scarey it IS facinating!
I must laugh because if I take it too seriously I will cry.
How much faith do I really have?
I choose to believe that God IS in control of even this.
What do you think about this? I REALLY want to know.
I am seeking any advice, ideas or answers anyone might have.
