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
Procrastination: What’s ‘pro’ about it?
I am developing a plan to get a task done. Or is it that I am beginning to start to plan? The prefix ‘pro’ usually means moving forward, bettering, such as in the word progress. Procrastination: what’s ‘pro’ about it?
Here is a video that someone sent me a link to. This was the inspiration for finally writing this blog. Something that I had been meaning to write for some time. LOL
WHY do I procrastinate. Why wait to do what I know NEEDS to be done? I believe there are a few things worth considering here. Perhaps the greatest deterrent to getting something done is FEAR. Fear of failure, or that I will mess things up. Maybe my bent toward perfectionism is screaming at me to “Wait! You SHOULD do it this way. This other way may be better.” It’s the dreaded “Shoulda, woulda, coulda”s of an overly creative mind that can bog me down. And, just maybe, it is that FEAR that overrides our desire to just get on with the task at hand.
Don’t get me wrong. I do believe that one shouldn’t just barge forth without any direction or preparedness. But I see that there is this (sometimes hard to define) borderline between appropriately pausing and taking careful steps to proceed versus stopped and not willing or apparently unable to proceed. A procrastination paralysis produces a productivity nightmare!
The solution? Ha! If I knew that I could be a millionaire as a result of all the motivational speaking engagements that I could do at the conventions full of the myriads of people who are searching for a way out. I would right a book and go on book signing tours. Well, maybe someday.
Seriously, as I think about it now, I believe one of the biggest solutions to my bouts of procrastination is to face the fact that I am doing it. Call it what it really is. Procrastination in my case is a sin.
Does that seem harsh to you? Well, remember, this is in dealing with my own procrastination. I am going to treat it as a sin because sin is defined as being “off the mark”. I believe that God does call me to be holy as He is holy; to strive to live a righteous and productive life. I also believe that the ONLY way for me to do that is by utilizing the grace of God given to me as a free gift when I became His child. At the moment of my salvation, I was saved. That is past tense. It’s a done deal.
Now, as I “seek first the Kingdom of God,” I am challenged to grow up into a better way of doing things. I daily “walk by faith” when I study the Bible and use God’s Word to transform my old ways of thinking and doing things into a better way. So, you see, if I am applying what I am learning, I am always growing. There is no room for procrastination there.
As I face this personal sin of procrastination I need to remember to say “STOP! This is wrong.” I must admit that I am choosing to allow my fear of the unknown future to allow me to enter into an old, prideful way of thinking that based my success on what I did and how well I performed.
So, for me, stopping procrastination is getting back on track. Stop what I am doing wrong, learn the correction, and do that. I actively choose to say, “Lord help me: remind me to place your love before my fears.” I need to remember that perfect love casts out fear and practice that. It does take practice. That perfect love is available to me (and to you too) in the redeeming work of Jesus Christ who provides a way . . . the ONLY way out of the fear and into the love.
1 John 4:18 (NASB)
There is no fear in love; but perfect love casts out fear, because fear involves punishment, and the one who fears is not perfected in love.
At this moment, I can say I am not procrastinating. How about you?
Silent Surprise says “Open Your Eyes”
DOWNTOWN INDIANAPOLIS- While I was putting coins in a parking meter on Meridian Street I glanced about the Indiana War Memorial Plaza and took in all the flags at half staff. Tomorrow is Veterans’ Day and most flags are at half staff in honor of a tragic shooting last week claiming the lives of many servicemen in Texas last week.
While taking in the serenity that was accompanying the sunshine on this fine, fall day, I noticed a peculiarity. There was a woman in white at the base of the flagpoles, all dressed in white, moving with tai chi like movements. No sooner had that registered when I realized that there was another woman several feet away mirroring these exact movements. They both were facing southward toward the World War Memorial Building on Michigan street where there were even more ladies in white making these same graceful movements. Now glancing all about, I noticed that there were about a dozen of these white clad dancers spread over the city block square area. What was going on?
Since I always have my digital camera with me, and my curiosity was peaked, I took out my notebook to collect some news. This is what I discovered.
I had stumbled upon RANDOM ACTS OF IMPROV. This was one of several surprise activities that will take place throughout the city during the ten days of the SPIRIT AND PLACE FESTIVAL taking place November 6 – 15th. (see Spiritandplace.org for more details).
This particular display, put on by Susurrus Performance Group (website click here) happened right at the noon hour, causing many city pedestrians stopping on the sidewalk and asking me what was going on. They joined me watching in wonderment momentarily before they continued on their way.
I believe that this is one of the goals of Susurrus and the many other performance groups partnering with the Spirit and Place Festival as they encourage some people to interrupt their mundane routine long enough to get involved in their surroundings; to stop and take notice of what is happening in their neighborhood. How refreshing it is to enter into a moment of wonderment and to take time to engage with other people that we would normally just walk by.
In that regard I challenge those of you in the Indianapolis area to keep your eyes open for surprise happenings and the opportunity to engage. There are going to be dozens of happenings over the next week that are unannounced. Thus, the Random Acts of Improv will surprise people. So keep your eyes open. Maybe we will learn to be not only see our community with fresh eyes, but perhaps, we might take it a step further and become actively engaged.
NOTE: not all events are surprises. There are also 40 events–nature walks and driving tours, dance and theatre performances, conversations and workshops, panel discussions and potlucks, and much more! Over 85% of these activities are FREE!
Former Indianapolis Mayor Bill Hudnut will be present at the marque event on the last day. There is simply too much to cover here… so please visit the Spirit and Place Festival web site by clicking here.
Thank you to Susurrus and the Spirit and Place Festival (and the many other partners) for being such a blessing to our community by reminding us that we all can bless one another by just taking a moment to engage with another person in creative ways.
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.
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Halloween Best
What was YOUR best Halloween costume?
I have always enjoyed creative things and that combined with the idea of doing that and going around and collecting candy or monetary awards, well, that was just icing on the cake.
One of my best costumes was my unique spin on BRIDE OF FRANKENSTEIN. You see, as a result of getting hit by a car in 1987 (see link for more info_ ) I had over thirty surgeries to my left foot, ankle leg, knee. A couple of these surgeries resulted in the application of an external fixator. Many people call it a “halo” —I’ll take a halo any way I can get it apparently. LOL.
I joked around and called it a rotisserie because it had many wires running through my leg, between muscles and bones…like a chicken. It’s purpose was to hold the surgically placed pieces in place while I healed. Since I found myself in this contraption during Halloween, I decided to find a way to creatively use it. I would be the most realistic Bride of Frankenstein that many had ever seen!
Here is a photo of me posing with my surgeon Dr. Karl Raynor as the Bride of Frankenstein! I had a real electrodes strapped to me and working with my TENS unit (used to help with pain) with it’s flashing lights on my belt (not seen in the photo).
You should have seen all the people at the Walmart and on the street trying to figure out how I got those wires to look like they were passing right through my leg. When someone was brave enough to ask, I told them that it looked real because it WAS real. Then I had to laugh as some of those same people looked like they were gonna faint.
I did get runner up at one party (held at a downtown brewery). The first place winner was an adult male wearing a diaper and a bib with a fake appendage sticking out through one of the leg holes. Give me a break!! I said “BREAK” not as in relief NOT as in another broken bone. . . thank you very much.
Please comment and let me know: What was YOUR best Halloween costume?