Currently Browsing: Personal Experience

Foreign Accent Syndrome News: Ellen’s Story – Part 01

Recently, I was out of town to judge a County Fair 4-H Dog Agility Competition. While waiting for my part of the day to start, I noticed the young lady next to me snapping  a lot of photographs.  She was obviously a photographer who didn’t seem to know exactly what was going on in respect to the showmanship judging that was taking place. I struck up a casual conversation and started to explain what was happening and what the judge was looking for.

Within a few moments, I was asked the number one question that most Foreign Accented people get; “where are you from?”  I answered, “from Indianapolis.” She replied with “I mean, where are you from ORIGINALLY.”  Etc. Etc/  The same old scene played out, but I kept it brief, because she was working and I was about to. I handed her my “business card” since she asked if she might contact me about doing a possible story on Foreign Accent Syndrome.

Sure enough, she called me the next week to conduct a phone interview which was about an hour in length. I had a LOT to say about the various aspects of Foreign Accent Syndrome. I have learned a LOT in four-plus years, so I took the opportunity to share as much as I could while keeping to the most important aspects of answering her questions. How did I get it? What exactly IS FAS? What is it like to live with FAS? What, if anything can be done to help?

I was quite happy to share what I have learned and still am learning, especially since it is so rare and there are not many doctors who have even heard of it, let alone seen a case. It’s just so rare, that even some medical specialists like neurologists, or psychiatrists, or speech therapists, have not ever encountered someone with it. Unfortunately, it’s rarity also leads to a great deal of skepticism and doubt… maybe even confrontational disbelief!  That is one of the hardest parts for someone who is still trying to grasp the sudden, drastic changes with rare Foreign Accent Syndrome “WHAT’S HAPPENING TO ME?!”

I will attach both a separate image as well as the original link to the published THE PAPER OF WABASH (Indiana) news article which is not exactly accurate.  If you want to the “online edition”. It is on page 22 of this week’s http://www.thepaperofwabash.com/online.php

Page 22 of The Paper of Wabash published 2013.07.24

If only I had been sent a rough draft, I could have corrected the errors before they went to print, but since it’s out there, here are some corrections:

I was slightly misquoted which seemed to infer that I was saying something I didn’t exactly say.  For example, the part about conversion disorder and the power of the mine was a bit “off” in the way it was written.  Still, it was not a major mistake.

The date of incidence was MAY 12th, 2009. Again, not a major thing, just two months after what she said of March. That is a bit more important as far as continuity of the story in case history.

It happened when I was working at my computer at about 1p.m.  We had weeks of thunderstorms which exasperated my migraines. The first different symptoms of “the onset of my Foreign Accent Syndrome” started with yet another head pressure headache, but my chin and then my lower lip suddenly started feeling tingly and numb; but only on the right half! The numbness continued to spread up my face: the upper lip, side of the nose and cheek, outside of and around my eye, eyelids, forehead, etc… always on the right and such an intense numbness that I could not feel the breeze that I purposefully created with my hand. When I pressed the surface of my flesh, it felt so numb that it reminded me of when I receive a shot at the dentist . . . you know. . . like your lip is three inches thick!!  The numbness continued to spread up my scalp and wrapped around the back of my head and then was very painful (painful, stabbing, karate-chop type attacks to the back and right of the base of my skull). It just surged even more while I was just washing dishes.  I really thought this was a pinched nerve and kept trying various movements to try to alleviate the problem.

When my husband returned from work, I told him what was happening and he agreed that it must be a pinched nerve. However, throughout the night the numbness traveled over my right shoulder and upper arm and my right grip felt weak. Talking to my husband we decided I would call my doctor as soon as his office opened.

Long story short, they couldn’t fit me into their schedule, so I was advised to go to the ER. While there, about 24 hours after first symptoms, others noticed my speech starting to change. When talking to my husband from the ER, he asked “what did they give you?” “Nothing. Why?” I replied. “You sound like they’ve given you some drugs or something.”  “No; only saline IV,” I answered, “but I am getting really sleepy.”  It was only noon time!  Yet when I had received my CT, the neurologist held me for an MRI but after a long time of waiting they said, “Alright. We’ve decided to send you home after all. Just call your GP and tell him you need to get an MRI in the next three days.”  When I went home at 4:30 in the afternoon, I went straight to bed and didn’t wake up until 8:30 the next morning!! I didn’t wake at ALL during that entire time; not to eat supper or breakfast, nor even go to the toilet!

The next morning after the rest of the family had left for the day, so when I spoke to our dogs, I was greeted with an entirely different voice! ! !  To me, it sounded  a lot like a person who was deaf that can still speak.  I did record my voice in those first few days… however the online service I used called TalkBox has since changed ownership and those files are lost forever. What a shame!  Now, I make sure to keep a copy somewhere else. I’m not going to have that happen again if I can help it.

In any case, you can see why “Woman goes to bed with a migraine and wakes with [a foreign accent]” doesn’t quite tell the story.

Lest you think I am negative about the story . . . NOT AT ALL!  The reporter was very kind in the manner of her interviewing me. She indicated genuine concern and found the rarity fascinating. She showed empathy in how she interviewed and commented about how she imagined it would be to cope with such challenges. Then, she did something no other interviewer has done previously; she asked HOW her readership might be able to HELP! Is there a foundation set up to receive contributions or help? No. We are not officially set up with a foundation, nor official website. There IS an open support page on Facebook http://www.facebook.com/groups/FASaware/ as well as a closed one which is only for actual FAS people. My blog is another resource that is more accessible, searchable and more interractive.

– – – OKAY – – – THAT’s ^^^^ the first part of the story . . . I will add more at a later post. So you’ll just have to come back and visit another time.

I always welcome genuine questions and comments.   I am especially interested in helping others to learn about FAS.  Using my experience to help others through theirs helps make living with it more meaningful and even joyful (dispite circumstances this IS possible) as I know there is pupose in the pain <3

 

 

Foreign Accent Speech Changes with Video

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.

Sharpening the Axe

 I like this :  “If I had eight hours to chop down a tree, I’d spend six hours sharpening my axe”   —Abraham Lincoln

 

I want 2012 to be a milestone of change and it starts now… here… with me “getting my house in order.” So, I am intentionally honing at the first of 2012 in a way that I trust will lead to some serious cutting away of the unnecessary in favor of a sharper, more impactful use of my future. I want to disentangle myself of the “clutter”; simplify and streamline so that I will be more available for what the Lord would direct me to do with my life. Once I get through the tediousness of reorganization I believe I will not only be freed from the space-hogging “stuff” of things and superfluous obligations, but will also free up time which I KNOW can be better spent.

How am I doing it? First, I have gone to greater lengths to seek God’s will. I am still dedicating daily time to reading God’s Word. I have been blessed by the “read through the Bible in a year” discipline for the last three years. Every single time I come to portions where I say “I don’t remember ever having read THAT before”.  I can testify that the Word of God is “living” just as  the Scripture itself testifies. It has great power for change. So I am starting year four of reading through it cover to cover on top of my other in-depth studies. After all I cannot “hide God’s Word in my heart” if I don’t read or hear it.

I further sharpen the axe, so to speak, by prayer. This one has become ever more important to me. Almost exactly a year ago, a very dear elderly woman in our church passed away. At her funeral service I was profoundly struck by the number of people that spoke of her as a prayer warrior. It was especially gripping when children and grandchildren testified to finding list upon list in her handwriting of specific prayer requests, with dates of prayer concerns and dates answered or additional updates. This prayer warrior had gone before God’s throne with concerns and praises of hundreds of people. . . she had interceded in a very actionable way… naming them specifically (whether dear family member or stranger) . The hundreds of names that this woman left behind and her children found shook my prayer life to its core. “WHY? Why Ellen, don’t YOU pray more? What impact are YOU having through prayer?”

When it comes to praying for others, my method of praying over the years has been more of a series of darts thrown heavenward. I guess because I am visual, I rely heavily on cues to remind me to pray for a certain person. My kitchen faucet is assigned to those who I continue to pray for salvation. My refrigerator door handle reminds me to pray for provision. My bathroom ( medicine cabinets) remind me to pray for those suffering physical needs. Newstime on TV… lots of prayer cues there, but also reminds me to pray for our government and public servants. When I see an emergency vehicle, traffic accident, obvious suffering, I immediately shoot off another prayer dart. I don’t mean to belittle this method of praying, but one thing it does NOT do, is it doesn’t keep an account like a prayer journal would do.

So – – – I resolved in 2012 to start a prayer journal. But that left me with the big question of HOW exactly do I DO that?!  I mean, when I was a teenage girl I started a diary (complete with lock and key to keep out nosey siblings) just as many of my friends did. However, inevitably I’d vow to write in my diary every day, and by early February I’d miss a day or two. My life just wasn’t that noteworthy. I’d feel guilty for missing my entries, then sharpen my resolve and maybe get an addition week or two of entries in a stretch. Next thing you know, I’d not have another entry for months and that one would be some special event had happened like a family 4th of July gathering or something!

Well, I’ve decided to walk as a Christian . . . by FAITH.  That faith is not in myself. No way! I am going to trust in God to give me both the direction AND the strength to achieve what HE wants me to accomplish. I know that I might fail. uh..strike the word “might”. . . I  will fail. Maybe repeatedly. However, this is NOT all about me. It’s about Jesus Christ. It’s about my wanting to be more like Him; to truly intercede for people on behalf of what has not only current ramifications for the person(s) I am praying for, but everlasting consequences. I truly ache for those who struggle through life without a Savior. I feel that ache as I visualize Jesus outside of Lazarus’ tomb and the gates of Jerusalem crying. So prayer is too important of a privilege for me to take lightly. Not that I was in any way insincere in my “prayer without ceasing” method of praying “darts” throughout my day, but I need to add something more.

I believe I need to start journaling prayer. It is not going to be easy for me, but I think of the ebenezers that were set as memorial stones of remembrance throughout the Old Testament. These were lasting testimonies to what God had done! So I have consulted a few friends to ask for ANY suggestions on HOW they prayer journal. Any advise at all is welcome. I know it is not a one method fits all proposition. I am handicapped in not having a step by step instruction method before me on this one. However, I believe that I must purpose to do this for the benefit of being able to look back on those lists, all the names, all the prayers and answers to prayers, listing the many praiseworthy “only by God’s grace” occurrences that people explain as miracles, etc.  I think that perhaps this will be a wonderful tool to remind me of God’s active involvement in our lives.

In regard to prayer. . . the very beginning of 2012 has brought to me a new spiritual discipline as our church has encouraged people to engage in prayer in fasting during the first 40 days of 2012. Not that I have never, ever fasted before. But this time I planned ahead; I took time to prepare for the time of fasting and prayer. All the other times were more like emotionally entering a short time of fasting contemporaneously. This time; like my determination of being more intentional in all the areas of my life, I am taking the time to grab up the axe of action and not just start chopping, but to take the time to grind that axe to a very sharp edge by using the Lord’s honing stone to sharpen me “before” I can be used more effectively.  “Grind on Master . . . I know there is some shiny metal under all of this rust and if anyone can get to it, You can!” In the meantime I would much appreciate your prayers as I press myself against the grinding stone that will reshape my future. Likewise, if you have ANY comments about how you handle this area of spiritual development I would be very grateful if you shared them with me.

 

 

 

Page 4 of 20« First...23456...1020...Last »