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.

Turning the Page

I HAVE TURNED THE PAGE! January 2010 is a time that I can look upon as a time of new beginnings. I continued to use my contemplations of December’s poor energy from CFS and come up with some kind of plan.

First, honestly assess where I am. I am in poor health and am driving myself unrealistically to do more things which only increases stress and puts importance on achievement of activities to determine my success. WRONG! This Christmas, God gave me the gift of honestly facing the fact that I have serious physical limitations that may never go away. Rather than being mournful over the time that I’ve lost, I want to celebrate what I can do.

So, secondly, I used the current Women in the Word Bible study materials that we are using called “Seeking Him” to launch me into personal inspection for the purpose of spiritual revival. I have been searching for how I have been falling short of God’s best for me. As a result, I went to my husband and a pastoral mentor and we did a great deal of growing.

Thirdly, this friend suggested that we follow the Bible’s instruction “Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord.” –James 5:14.  On December 27th, 2009 Steve, Michelle and I went into Pastor’s office and were surrounded by the deacons of the church and I received encouragement and much prayer. Many of them had not been aware that the Chronic Fatigue has been a battle for fifteen years, the chronic pain since Sept. 1987 and now the mysteries of the Foreign Accent Syndrome posed it’s own challenges. These men blessed our family greatly at that event.

Through a series of events and with the help of FaceBook on the internet, I met a Christian lady who did network marketing of a supplement product that we believed might help me. I was given a two week sample and I tried it. It is called MaxGXL. It is a glucothione accelerator which works at the mitochonrial cellular level and has had wonderful effects! There was a period of some detox side effects like headache, but my energy increased so that I was actually able to do more.

I am experiencing more stamina now, and so have been able to actually reorganize my pantry. It may sound like a little thing to most people, but it is something I count as a blessing.

Next, I came to the understanding that I do have great mental challenges when it comes to categorization. However, I simply don’t know what to do about it. It greatly effects my inability to file papers and organize things. I do well with my artwork materials because I have those relationships ingrained, but many other things have me stumped.  I have noticed the problem over the last two tax seasons, but it has gotten increasingly worse. I have told Steve of the problem, however, whether he doesn’t understand that I have a problem or simply doesn’t know what to do about it, in either case I am still in need of help.

Therefore, I did the next hardest thing to admitting I have a problem. I asked for help!  Now, when it comes to finding that person to help me, I am not asking someone to just come in and work at cleaning my place up. No! I am more than willing to do the work, although I wouldn’t turn down the help :0) because there is so much backlog. What I really need is someone to come in and teach me methodology. I need to be taught a process which before now just came naturally. What do I do with this? It is very humbling, but I am desperately in need of that help.

I have set, what I believe to be a realistic goal for myself, to have things in order around the house before the end of March. It really needs to be straightened out yesterday, but I am trying to be sensitive to what is a reasonable goal so that I can break it down to doable tasks.

I would appreciate your prayers in this, as that certain person or persons to come meet this need that I have so earnestly prayed for has not yet arrived. And as I attempt to do it on my own, I seem to make more messes, before I make any small progress.

All in all, January has been a time to “turn the page” as I start a new chapter. I have been attempting to accurately assess where I am, address what I can reasonably change, ask for help, and make definite progress as I seek God’s best for me. Prayer and studying God’s Word have been foundational in keeping me moving forward through the trials. It is so hard, but so worthwhile when I realize that as I put forth my best God will honor my efforts by transforming me to be better than I was before.

Here’s to new beginnings . . . and the God of all grace who makes it possible!

The Reason for the Silence

You may have noticed that I haven’t been blogging regularly since the middle of December. That is because I made a conscious decision to step back from many ventures during the Christmas season to focus on the most important areas of my life. I focused more on family and the celebration of what the birth of Jesus Christ means to me.

Also, in December I had been increasingly afflicted with the extremely low energy associated with Chronic Fatigue Immune Deficiency Syndrome. As the daylight hours reduce at this time of year, the ability of my body to function decreases as well. Even the simplest of tasks takes exponentially more energy to accomplish. So I ended the year refraining from blogging.

As I increasingly pared back on what activities I attempted, I found myself discovering what I valued most. My husband and I grew closer together in our prayer and Bible study times together, as well as those that we shared with our daughter. We communicated more with one another what we really value and the dreams that we have. As a family, we didn’t worry that we didn’t have a lot of money for gifts at Christmas, but dreamed of ways to do the most with what we had.

I became a baking fool. I literally spent 2 weeks in the kitchen baking various candies and a few other baked delights to hand out to some friends. Steve’s work alone had 18 little packages of goodies which yielded smiles and happiness at his workplace. I guess one of his coworkers in particular found that she is somewhat addicted to my Buckeyes (chocolate covered peanut butter nougat balls). I did somewhat perfect the peanut brittle this year too.

We mailed off Christmas packages to relatives via Priority mail to arrive before Christmas only to find that 2 of the 3 were addressed wrong and returned the second week of January!! Argh!  However, we did spend a lovely Christmas Eve at Steve’s folks and had a wonderful lamb feast with family before returning home between bad ice storms.

As New Year’s Eve arrived, I was ready to put 2009 behind me and start a new decade.

The Christmas Gift

The manger stays empty until Christmas Eve.

As economic times are tough, I have had a real challenge of figuring out about what gifts I might be able to afford. There is just no way to be able to do the usual extended family Secret Santa gift exchange this year. The family vehicle needed repairs that cost more than our Christmas gift-giving budget would have been.

So, I have had a chance to think even harder about the really important aspects of Christmas being so much more than pretty presents under the tree.

I want to share with you a family tradition that we have had for several years. Front and center under our family Christmas tree is placed a small manger. We place raffia straw in it and it sits that way until Christmas Eve. The last thing that I do before going to bed on Christmas Eve is to take a baby doll and swaddle the doll in burlap and lay it in that manger. THAT is the greatest gift of all.  That reminder greets our family when we desend upon the tree Christmas morning.

Emmanuel, God with us…. what a wonderful gift! To know that God gave His only son so that we may be called His children forever, if only we accept Him as our Savior. We were in such great need when we were dead in our sins. And now, as we celebrate with the lights of the season, the Light of the World has come. We have received the greatest gift of all!

There is no greater gift that I could wish for you my friend than that of Jesus Christ the Savior. Do you have Him? If not, He is waiting to be invited to be your Savior and Lord. Once you have received that gift, what more could you possibly desire?

When it comes to the very real human feelings of sadness that I cannot just go out and buy some things that I know would make my friends and family happy to unwrap on Christmas morning; I just acknowledge that I am sad. But, then I think back to that wonderful traditional claymation video that used to be shown every Christmas season on television called “The Little Drummer Boy”.

The little drummer boy was extremely poor and had absolutely no gift to give to the baby Jesus. However, he was able to play his drum for Him….  par rup up pum pum…rup up pum pum…rup up pum pum.  And then, the baby Jesus smiled at him. How cool is that?  Just a fictional story, perhaps, yet it is true that Jesus doesn’t require anything from us other than our desire to have a relationship with Him. Everything else that we do from that point on will bring honor to Him as we get to know Him more and obey what He teaches.

Merry Christmas!

The Anticipation of Advent

Our family is in the middle of celebrating one of our favorite Christmastime traditions.  In 1994 I made a lovely discovery at a local discount store of 4 ceramic figurines that I used to create our family Advent Wreath.

These 4 figures sit around the perimeter of a wreath with accompanying colored candles that we light in 4 consecutive Sunday nights before Christmas.  Then on Christmas Eve we light all of them and the center white candle which is next to a babe in a manger that I also created out of clay bake and some matchsticks and straw.

Week One: Mary — an angel came to Mary and announced to her that God was going to use her to give birth to the Savior. The Virgin would give birth.

Week Two: Angel — angels were used by God to announce to Mary and Joseph  (and later to the shepherds) that Mary would give birth to a baby boy that they were to name Jesus for He would be the Savior. Angels are messengers of God.

Week Three: Shepherd — While shepherds watched their flocks by night, angels came to the lowly shepherds to invite them to come behold the baby born in the stable. The darkness of the night was penetrated by such bright light as the Glory of the Lord shone into the night to make the great announcement.

Week Four: Wise Men/Kings — Wise men sought out the promised Messiah, they had used knowledge and prophecy to seek Him. When they did finally come face to face with the Savior as a toddler, they presented Him with gifts of gold, frankincense and myrrh.

Gold was the Gift given by Melchior, a king of Arabia. He is said to have been the oldest of the Three Kings.

Frankincense was the Gift given by Balthazar, a king from Saba – present day southern Yemen. Frankincense is resin from the dried sap of the Boswellia tree – a tree that has grown on the craggy slopes of the Arabian Sea for thousand of years. In ancient times, Frankincense and Gold were equally valuable.  Frankincense is harvested by making slits in the bark of the tree and letting the resin slowly bleed out and harden into white “tears”of Frankincense  The primary use of Frankincense is the same today as it was in ancient times: it is a very strong incense with a sweet aroma that is used today in religious services.

-The Gift given by Caspar, a king from Tarsus – present day Southern Turkey. At the time of Christ, the world’s finest Myrrh came from Southern Arabia and it is generally thought that this was the origins of Caspar’s gift.  Myrrh is resin from the Commiphora tree and is harvested by cutting slits in the bark of the tree from which Myrrh resin hardens into dark red crystals. In ancient times, Myrrh was among the most valuable substances known and, at the time of the birth of Christ, it was worth seven times its weight in gold. It can be used as an incense or it can be ground into a powder and mixed with oils to make a balm or processed into an oil. In ancient times, myrrh was used in the mummification of the Pharos in Ancient Egypt and to anoint kings.

Christmas Eve: The Babe in the Manger – Emmanuel, “God with Us: …The promised Messiah was not born in a palace but in a lowly manger.

“Behold I bring you good news of great joy for all the people:
to you is born this day in the City of David a Savior, who is Christ, the Lord –[Luke 2:10,11]

So, each week before Christmas our family gets to focus on what the true meaning of Christmas is all about. It isn’t just about baking cookies, hanging lights and decorations, or buying presents. Our celebration of Christmas is a time in which we really look at the greatest gift of all. The birth of a Savior to save us from our sins, from a God who literally reached down into time to give us a way to have a relationship with Him.

Merry Christmas everyone. May you receive the greatest gift of all. And if you already have, may you relish it all the more in this season of Advent. For even when the celebration of the Advent of Christmas is over, we still have the anticipation of the return of our Savior.

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