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.

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

Imperfect Perfection

You know what?  I am NOT perfect. Surprise!  Yet, one of my personal struggles is with the character defect of perfectionism. I could even go so far to say that it is a sin, but I don’t know that I chose so much to act this way as it is a natural bent that has plagued my Type A, constantly pushing for the best, way of doing things.

Either way I see it as both a blessing and a curse. On the one hand I can say that this perfectionism has given me the “eye” for detail. I can generally tell with a quick glance if something is amiss, awry or off-kilter. This especially comes in handy when I am rendering a drawing or painting that is realistic. It also gives those I work for the assurance that I am going to give great attention to the accuracy and detail of a job. I am by nature highly motivated, driven to do the best I can, and determined to see a task through to the end.

So what’s the downside? I am the most critical of my own work. It was so bad when I was younger that I couldn’t keep any of my own paintings because I would look at it and see something that was a bit off or could have been done better. As a runner, I would always strive to go further, go faster. As a daughter, wife or friend I would do everything to be the “best”.  Oh, I was what some would call an overachiever, a competitor that didn’t know when to quit. Why? Because, I felt that my best was NEVER good enough.

It was in college, working for the Department of Graphic Communications Chair (he was also a perfectionist) that I learned a bit of a trick in fighting this troubling trait. He told me, “If the client likes it, it is good enough.”  Never mind that you think it would be better this way, in these colors or whatever. If my job is to produce a piece that the client likes, then the moment he says “that’s good,” it IS good. Period.

Wow!  What a revelation. Just by proclaiming something good, it IS good. There really is such a thing as “Good Enough”.  What a concept.

As I am currently struggling with some physical challenges right now, I have been forced to look at the increased frustrations and disappointment associated with the realization that I simply cannot do what “normal” people can expect to do. Nor, even, what I could do myself in years previous. I am starting to have those thoughts of not measuring up. Maybe those who used to love me will tire of me and discard me as “a problem” or “broken” and unable to be “fixed”.

However, these are feelings that I cannot trust. These feelings would have me believe that I am what I do; that it is my performance that determines my worth. You know what I am learning? (Not that I have attained a full working degree of mastery here, yet).  I am learning that these thoughts based on feeling are untrustworthy. Lies!

My value really is not based on what I can or cannot do. It is not based on quotas of projects completed, grades, money earned or invested. It is not based on if my hair is styled just so, or if I am wearing the latest clothing fashion. My value is not even determined on if my husband or child is pleased with my cooking or even if they are angry with me.

No. None of that is the real basis of my value. What I believe to be true as I study my Bible (if only my feelings would grasp that truth more) is that my value comes not from what I DO, or to what degree of perfection I perform, but from WHOSE I am.

I believe wholeheartedly in the Truth of God’s Word which declares I am a child of God. He loved me even when I was at my all time, absolute, disgustingly worst. When I came to acknowledge my absolute inability to even approach anywhere near a degree of perfection when it came to dealing with such an awesome and Holy God, I all but melted away.

It was then, at my most imperfect, that God lifted my face to look into His. He invited my broken spirit to be mended by His Holy Spirit.  He let the love of Jesus Christ do the perfecting for me. WOW!!

Right now, as I struggle related to chronic pain, fatigue and even Foreign Accent Syndrome I must face the fact that these are major hurdles that are guaranteed to keep me from normal goals of excellence. In working with these difficulties  I am finding that nasty old bent toward perfectionism rearing it’s ugly head again. This time, thanks to God’s promises which sustain me, I am learning to say, “Yes. I am a failure. Yes, I have messed up. Yes, I cannot do this under my own power.”

These very thoughts that in the past were used to try to depress me to the point of being totally ineffective are now the very same thoughts that I can accept and answer. “Though each one of those accusations is true. All those imperfections are present in me…but..’I AM doing my best. And (here is the real gem)… GOD LOVES ME ANYWAY!”

This really is too wonderful for me to understand. It is not by denying my failures, or pretending they do not exist, that I find peace. Rather, it is by embracing the fact that it is despite my imperfections that I can enjoy the bliss of perfect love and acceptance of my Blessed Savior.  SELAH.

Do you know this peace too? It really is perfect.

More Than Lip Service

This last week I have had a few more noticeable set-backs. As the clouds and wind build while we enter the Autumn season, there is more cold, dry air and pressure changes and less sunlight. All of this is the “perfect storm” of symptom exasperation when it comes to chronic pain and fatigue.

What I have also been learning is that it seems to also make my foreign accent much harder to correct. Prosody (word order) as well as pronunciation and word finding ability all suffer when I am more tired.

It is also notable that when I do not spend the day talking to myself (to the amusement of the dog and parrot, I’m sure) while my family is away most of the day, I find that my speech is MUCH worse when they get home.

I have recently made a renewed commitment to reading through my Bible over the entire year and am in Isaiah and 1 Timothy. I also use that time to read aloud and let the foreign accent show it’s full force as I read scripture. The FAS naturally adds a different feeling while reading as the emotions are different as the accent adds a unique flavor which is way different than my usual speech used to be. My speech therapist says that the reading aloud is good for helping create new neuro-pathways as well.  It’s a win/win!

The adage, “practice makes perfect,” may not really apply here, however, practicing out loud is how I actually hear the processing of the words and am then able to note it, work on it with some tricks to more closely correctly pronounce it, repeat and then move on.

Here is an example:  The word: people.  When I pronounce this word, it comes out naturally sounding like Pee–poo0.  I remember Terri Stacey actually giggled at that one.  The ‘l” sound just won’t hop into the right place at all. So I developed a trick. When I say the word “people,” I think about being behind an apartment door when someone rings the bell. I look through the PEEP-hole to see the people! By visualizing this trick, I can say PEEPhole and it more closely resembles “people”.  It seems like a lot of work, but it does work for me.

Then there is my “POOL” / “PULL”/  “POLE” –trick.  When I tried to say “pull,” it natually would come out Poo-wel.  So in order to say the sentence “Please pull the door open,”  I now FIRST say in my head pool/pole/pull… the two extremes of the vowel plus “L” sounds help me then settle into the middle sound which is the correct one I want.

Today I worked on the word “SCHOOL” which had a very similar pronunciation, but was much harder for me to develop a trick for. I finally settled on this: when I know I’m about to say “School,” I substitute “SK-wool”, while barely even touching the “w”.  I envision a sheep which has a price scanning SKU on it. SK-wool.  “Where are you going to school?” Weird huh?

Though there is a LOT of processing happening as I try to “fix” the pronunciation of words, the stress given them within the syllables of the word and within the words of a sentence, I am in affect, developing “tricks” to use on the tricky words (those that give me the most trouble). I joked with a friend at church, I sometimes feel like I’m a walking Tower of Babel.

However, that tower was built as a testament to what God could do and it was God who created the different tongues so that the people were forced to scatter. I find with this Foreign Accent Syndrome affliction of mine, people actually flock to me. People continue to ask the question “where are you from?” and make the statements “I love your accent. I could listen to you talk all day.”  The gatherings that come to me allow me to testify. This is what Foreign Accent Syndrome looks like in me. Then I sing a tiny bit, so that they hear my “real” voice. The jaws drop. Then, while their mind is open to the wonders that they just witnessed, the door is wide open for me to share with them how we are “fearfully and wonderfully made.”

More than ever before, I see how I MUST work to correct my pronunciation of the word “people,” because it is people I want to reach. I am learning, it is not so much the pronunciation that is a hinderance, it’s that I might not say anything at all to another person about the good news of the Gospel and the glorious hope that there is right now. It is not so important HOW I say it or about my fear of what the other person might think of me. What’s most important is that there is something of great value to communicate, so don’t wait. Who doesn’t want to receive an encouraging word and a smile? Or a nod and a statement like “oh, I’m sorry for your trouble,” or “I care about you. How can I help?”