Purpose Thru The Pain

Here is a link to the documentary which aired in the UK last Tuesday night on their national BBC-1 network. It is called “The Woman Who Wake Up Chinese” and stars my friend Sarah and a bit of Kay as well, some doctors and specialists and is EXCELLENT at describing the rarity of Foreign Accent Syndrome and how profound an affect it has on a person and those that love them.

Although the original episode cannot be viewed from the BBC site unless you live in the UK… there is a place to watch it free via YouTube. On YouTube you just search “The Woman Who Woke Up Chinese BBC Full) and you will see about a 43 minute video that you can watch from there. The entire video was closer to a full hour, so there is probably a few more minutes which we cannot see, however, the documentary is incredibly well done and is already having a profound effect on the WORLD! YES! More and more people are being exposed to Foreign Accent Syndrome’s existence which will help those not yet properly diagnosed, families and friends of the sufferers and especially the scientific community where so much of the doctor’s ignorance regarding FAS has actually done some harm to the people who don’t understand what is happening to them.

Since this videos airing, there has been a HUGE influx to the public Facebook Group called Foreign Accent Syndrome Awareness Group which I administrate as well as this Ellen5e.com site. This is very good for getting people informed. I cannot tell you how many people I have talked to in the last four and a half years who have been misunderstood, treated poorly and suffered greatly because of ignorance of so many people in regard to Foreign Accent Syndrome. It IS REAL!  It is VERY rare! And it needs more study by the medical community because of all that may be learned about the human brain and our ability to communicate.

Please take the time to watch this, and I would REALLY love to hear from you as to what your reaction is.

http://www.youtube.com/watch?v=Q_XZLbrrfRg

It is exciting for those of us who work together on the only known group for people who have Foreign Accent Syndrome (via a PRIVATE Facebook group) to be able to see the way in which those who are new to this journey will have better understanding and support than those who came before. God is really at work in the lives of people all over the world… right NOW… and I tear up with thankfulness that God is using some of us to offer comfort to others as only we can.

Here is a verse from the Bible that I feel explains how I am able to embrace the challenges in my life as a way of God preparing me to be of greater use to others.

2 Corinthians 1:3-7
New American Standard Bible (NASB)
 Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God.   For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ. But if we are afflicted, it is for your comfort and salvation; or if we are comforted, it is for your comfort, which is effective in the patient enduring of the same sufferings which we also suffer; and our hope for you is firmly grounded, knowing that as you are sharers of our sufferings, so also you are sharers of our comfort.

I hope that this verse will become an anchor of steadiness to you as you go through various trials in your life. Yours may not be FAS, but ALL of us have troubles in this life. We cannot control their coming many times, BUT, we can control how we will respond.

“ACTION” . . . or not

Ellen’s A&E Filming Tale       By Ellen Spencer on 2012.03.04

It's time for ACTION !

~~A Day of Hope & Promises~~

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?

~~~~~~DISAPPOINTMENTS~~~~~~

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)

~~~~~PURSUING WITH PASSION ~~~~~~~~~~~~~~~

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” !

Some Recent News FAS videos

One of the most important things that we who suffer from Foreign Accent Syndrome wish to do is to find out not only why we are having the problems that we do, but also to help grow the collective understanding of not only of the disorder but most especially the PEOPLE who are currently suffering, their care, their care-givers and loved ones and those who have yet to step into those positions.

Therefore, I am very happy to add to my blog these links to these news stories which were done by JAX TV station in Florida. It is exciting to see some media attention being given to the disorder. Let some people who believe that this is not a “real” problem become less ignorant by getting a little exposure and also help those who are currently dealing with similar stories to take heart.

Here are recent videoes done with fellow Foreign Accent Syndrome friends of mine done by local Florida news TV stations.

This first one is a longer raw interview with Dr. Jack Ryalls from University of Central Florida. He is well known for his expertise in this field of study of the very rare disorder. So it is especially good to hear his insights in this more lengthy piece on what is involved in Foreign Accent Syndrome from his perspective.
Interview with Dr. Jack Ryalls Fox30

Pattie Yakaboski,
Pattie: Finding Her Voice

Video of Paula Westberry
Paula on JAX 2011.11