Two of My Foreign Accent Syndrome Sisters

This morning I received word on my Facebook wall that the NBC Today show

Kay Russell and Sarah Colwill

had a story about Foreign Accent Syndrome on it. This reminded this acquaintance of me and he told me about the broadcast as well as sent a “God Bless You”. I love that! He remembers that I have had it since May 12, 2009 after a major migraine makes my midwest farmer’s daughter accent turn into Dutch/Swedish/German “Eastern European” sounding speech. I just praise God I can still sing regularly.

I regularly monitor the topic Foreign Accent Syndrome on the internet and web trying to get latest scientific news. That’s how I found out about Sarah Colwill last Spring. I reached out to her on FaceBook and am happy to have another FAS friend.

So I went to NBC Today online and there I found this video article about my British friend Sarah Colwill and Kay Russell who both have Foreign Accent Syndrome. We have been Facebook talking since Sarah came down with it also as a result of migraine back in the spring of this year.

It turns out that Kay Russell lives only about an hour away from Sarah so they got to meet each other with all the excitement that I had in meeting Fisher Fran last year. To find someone else who suffers from the same rare malady helps a person feel less alone. Even if there isn’t a cure. There is just something blessed about being able to share in the depth of understanding that comes from such a thing.

I am grateful to the NBC Today show for doing the story to help bring more awareness to the fact that Foreign Accent Syndrome does exist and that it does so greatly impact peoples lives. Yet, even when science doesn’t have the answers to the “why” or “what do we do about it” questions, people can carry on with hope. That’s a message that everyone needs to hear!

Well, here is the embedded link to watch the story, enjoy. FAS Women Bond on Today Show

And if you would be kind enough to comment to NBC for doing the story or here, it would be an encouragement.

Video Greeting from Eastside Ellen

Just a quick heavily accented video greeting for you… THANKS FOR VISITING MY SITE.

What can we do?

I see it happening again. I have a column on my Tweetdeck where I keep my ear out for people talking about Foreign Accent Syndrome. Since local doctors don’t have a protocol for how to help me, I am forced to do anything I can to help myself.

What I am seeing now is another wave of people learning of Foreign Accent Syndrome for the first time. It has been over sixteen months since my adventures into the world of a foreign sounding person started. I had so hoped that my speech would have returned as quickly and magically as it had changed. But No! I’m still having to think very hard when I speak to correct such things as “what you are looking for?” when I ask my husband what he is searching for. I make myself “fix” things, because I don’t won’t to have them get worse.

The word “people” still wants to come out “Pee-pools” and lately I’ve had a very difficult time saying “wolf”. The long “A” sound is always a tough one especially at the beginning of a word.  The word “yes-ter-day” was one of the very first words to give me repeated trouble in pronunciation as it sounds like I am slamming a stop in between each syllable…but I don’t seem to be able to smooth it out. Grr!  Then there’s probably one of the kid’s favorites… “Dar”….. as in “their dog” or “it’s over there” … only it comes out dahr.

Sorry for the side note of frustration, but as I see the Autumn leaves preparing for winter and hard times ahead, I am also in dread. My husband has been out of work from a job he had for 16 years and our income and benefits are drastically changing because of it. That means that I am even more likely to have to continue suffering on my own without any help to try and make things better.

You see it’s not just accented speech. It’s all the effort that goes into trying to correct the sounds and place the words in the proper order and put the stress and rhythm in the right place on TOP of the scrutiny I receive for sounding so profoundly different.

Here is  a link to a current article making the internet buz with comment on FAS   http://pagingdrgupta.blogs.cnn.com/2010/09/20/when-brain-damage-makes-you-sound-foreign/?hpt=T2

As I see these people commenting on articles that they’ve just seen about Foreign Accent Syndrome, some people are genuinely shocked or intrigued. However, there are so very many who comment cruelly on the misfortune of others, saying it’s fake or a ploy for attention, or they wish they could sound a certain way like that. Oh my!

I want so very much to connect with other scientists, sufferers, speech pathologists, but I am out of resources. I am relying on my writing, the internets reach, networking and the power of prayer to try to get something positive done before a long, cold, depressing winter sets in.

I invite you to look around on this website for other articles with the tag “fas”. In particular I posted one called “WHAT IT WAS VS. WHAT IT IS“.  Many of these posts have links In which you will hear for yourself what a profound change took place in my voice within two days time.

So the question remains; what can we do? I am one who would gladly subject myself to testing for the benefit of scientific understanding, but have no insurance, research or other monies to do so… even if a doctor or university jumped on the chance to study the phenomena. Being a formerly pre-medical and now freelance graphic artist communicator, I am a trained observer so I have tons of useful data, but what authority will gather and effectively use it for the greatest benefit?  What CAN we do?

World Getting Smaller

Recently I have been amazed at just how small the world seems as I am now able to make more friends who want to learn more about foreign accent syndrome almost daily via the power of the world wide web.

If you have been following me for any amount of time, you know how frustrated I am by the limited amount of information about Foreign Accent Syndrome. I had a bit of a breakthrough last week as friends and Tweets pointed me to a newer case that has been widely publicized regarding a lady in the UK suddenly speaking with a Chinese accented voice after suffering a migraine.

The BBC did a story, CNN and other news articles suddenly popped up all over the place. I really believe I know how she feels as she is tired of the novelty of the fact that she sounds different. I know what she means when she says that she want her “real” or “old” voice back. As a result, I sought to contact Sarah and have since connected. I look forward to speaking with her by phone sometime soon, but in the meantime we are in touch across the ocean and time zones via internet.

Then, there was a television program that aired on the Science Channel, but which we don’t have that broadcasting channel. The title of the episode is called “Secret Life of the Brain: Losing Myself.” (If you discover a link or another broadcasting please let me know in the comments).  Though I have not seen it, apparently, it touched on Foreign Accent Syndrome and raised a lot of interest from people who had never heard of it before. Twitter was alive with people who couldn’t believe what they were hearing.

Through those Tweets I discovered some new contacts, one of which is a French speaking writer of medical papers who writes “The Brain From Top to Bottom” (here is a link).  Those writings helped me learn even more about the brain and how it functions or dysfunctions.

With this sudden influx of interest maybe there will be some advances in the study and dissemination of scientific research. We can share in the hope of knowing that people are taking the matter seriously. We can share our struggles and insights to encourage one another. That would be an answer to the prayers of the few who are having to endure living with such a rare disorder that so profoundly affects their identity, that is  not easily explained and to which there is no accepted treatment or cure.

Since we have used the internet to shrink the world, maybe now it is time to use that same mode to make awareness larger in the world.

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!