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?”

Take My Life

I have chronic pain and chronic fatigue which means I quite often am not allowed by my body to do what “normal” people can do. I understand what the apostle Paul said about buffeting his body, as I regularly must force myself to keep moving when my body literally wants to shut down. Lately, the fatigue has really brought my daily functioning to a prolonged low.

I’m reminded that God uses even me as a “weaker vessel”. Not that I would chose to be weak and unable to be more productive by man’s standards. No way! Like the Apostle Paul asking to have his “thorn in the flesh” removed, God has chosen to not miraculously remove my affliction. Maybe it is to protect me from the sin of pride through accomplishment in my own power. Whatever the reason, I have seen how God can use me this way; flaws and all.  For I KNOW it is nothing that I am bringing to the table. It is truly ALL God.

As it says in the Bible: 2 Corinthians 12:9-10 (NASB)  ⁹And He has said to me, “My grace is sufficient for you, for power is perfected in weakness ” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me.¹⁰Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.”

One of my all-time favorite attitude adjuster verses is Phil.4:8-9.
“Whatever things a true, honorable, righteous, pure, lovely, of good repute, excellent or worthy of praise, let your mind dwell on these things.”
I do hope I quoted that correctly, I have memorized it by using the memory minder “THoRP L GREWP”.

So, when I get discouraged by a situation, or set of circumstances, I purpose in my heart to look for the good. It IS there somewhere. I run through the list and go treasure hunting.

I want to end today’s post with some words from a favorite hymn called Take My Life and Let It Be “Take my life and let it be; consecrated, Lord, t0 Thee. Take my moments and my days, let them flow in ceaseless praise, let them flow in ceaseless praise.

I may not have much, but what I do have is all yours, Lord!

Crashed and Turned

Some of you will have already heard about this, but since today is the anniversary date of a major life-altering event, I decided to reblog it.
September 17, 1987 is a special date on the calendar for me. You see, it was 22 years ago today that my life took a major hit. While driving our Kawasaki 550 motorcycle I was broadsided by the car of a young lady performing an illegal U-turn. My life as I had known it (had planned) would never be the same.

It was just before the impact and I was waiting for morning rush hour traffic to clear from one of the two major one-way streets located at the end of my commute to work in beautiful Santa Barbara, California. I knew that I had to wait a few moments more before the traffic cleared. So I took the opportunity to shoot up a praise to God. “What a gorgeous morning it is Father. There is not a single cloud in the sky.” Additionally I am going to be early for work, and I am excelling at my job.

Looking back on that moment now, I realize that was the last minute in which I had no chronic pain in my life. I really do forget what that felt like. Perhaps God answered me with ” Oh sure, you think it’s beautiful and hunky dory now, but let’s just see what you think in a minute.” I believe that in Heaven, God was gathering the angels to watch what was going to happen next.

After crossing the intersection, I noticed that a car traveling in the opposite direction quickly pulled along the opposite curb as it going to park. But then it happened. The sudden impact broadsided me full force as the black bumper of the Civic instantly crushed my Left Ankle. I found myself startled (WHAT just happened), in great pain as my foot was hit by the car then pushed off the peg, and dragging along the pavement. On top of all that, my head was wizzing by the bumpers of cars parked on my side of the street as I was still moving forward although at an angle of a track bike (like the GT racers we just saw here in Indy).

I jerked with all my might to keep from going down. All the while it occurred to me that I am now driving on the wrong side of the street (from jerking up), my foots dragging, and I must stop in just a few yards BEFORE I enter the intersection with the other major one-way street. AAAAAAH!

This is where I testify to the miracle on my motorcycle. God was at work greatly in my life. He got me to stop the motorcycle before getting hit again. I did NOT go down even though broadsided. I think part of the credit for that goes to the fact that I raced bicycles at Major Taylor Velodrome and in racing class and training we would purposefully jam our bicycles into each other to learn how to avoid wrecks and react to unexpected pedal in your spokes.

Once I had managed to stop the forward movement of the cycle, I was standing there with both hand squeezing the calipers on the handlebar (clutch and brake). I was managing to stay balanced on my one right leg, but it was heavy and my other foot was mangled. What was worse is that I couldn’t shift the cycle into neutral because it would have been done by my useless left foot. I was stuck there!!

Just then, a VERY pregnant woman came up the sidewalk to help me. I remember thinking that the gutteral screams that came out of me were not very feminine (surprised that I sounded like a guy) and that I could even scare her away if I didn’t quiet them.

She came up to me and saw that I had a problem, but couldn’t hear me very well through the running of the motorcycle and due to the fact that the visor of my full face helmet was down. So she was fumbling around trying to undo my helmet. I swallowed all screams of pain and yelled, “PUT… the KICKSTAND…. DOWN!” Once she did that, I killed the bike by turning off the key with the assurance of the kickstand there to keep me from falling over.

I took off my helmet and looked down at my foot. It looked like the ends of two of my toes were missing and I knew that my ankle foot was broken. The lady had called the police and ambulance and wanted to help me to the sidewalk. I initially declined since she looked like she would deliver her baby if she lifted half of my weight. However the incessant throbbing convinced me that I should accept her offer.

We managed to get me to the sidewalk, a couple of very painful steps, and then I was down. Only then did I see that the only damage to the motorcycle was to the left case guard that helps protect the engine… a $50 part!! Another miracle.

Yes, God saw to it that I did not go down, that I had NO other damage to my body other than my left knee, leg, ankle and foot. Do you realize that if I had gone down I wouldn’t have been able to even use crutches?

May I just say something about crutches. When I am using them I get the “oh, you poor thing” look from everyone. Others using crutches say, ‘don’t you just HATE having to use crutches?” My answer is a resounding “NO.” I love these crutches. This is the original pair and if they had an odometer on them it would have tripped over the 100,000 mile mark about three times. I don’t know what I would have done without them.

When I am on crutches I can really move!! Just ask my friends. Unfortunately, right now I am recovering from a shoulder injury and can’t use them yet. So I appreciate them all the more, because without their use I am much more limited. Still I do have the famous “black boot” that I can throw on when I am expecting to be “slammin’” (on my feet or walking a lot). Again, I get the looks and the questions “what happened, did you have another surgery?”

I know that people are generally caring and tend to think that injuries are supposed to get better. But the sad fact is that some of us are never going to recover from our injuries. Not in this lifetime anyway. These appliances (crutches, canes, boots, funny shoes) are just our ways to cope in the meantime. To try to live a productive life in spite of the physical challenges.
I now joke that I have been through probably about a dozen sets of guardian angels. They draw lots up there to NOT have to get me as a client.

Almost half of my life has now been in constant pain.
As a competitive long distance runner I used to just push through the pain. No pain, no gain, right? Maybe so, but you will notice that I don’t run anymore. I can’t. If it’s an emergency or something I can lope along with the understanding that I will have to pay a physical price. I’ll be “lame” for a few days, and have to go back to using my crutches.

Worse than that, I often don’t realize that I’m overdoing until after it is too late. Again because my way of dealing with pain was to mentally ‘shove it aside’, I use a kind of self-hypnosis that worked well for me as an athlete, but that can do damage to me now.

Since I am allergic to almost all pain medicines, I can take none. So I really am in constant pain every moment I am awake. But there are a couple of coping skills that I have learned that work for me. Music is the biggest one. When I sing or play, it is a painkiller for me. It helps that I like to sing praises to God with our church worship team and jam on mandolin and guitar with friends. That’s why you’ll hear me turn almost any sentence into the lyric and break out into song.

Another painkiller is laughter. My friends help me with this one. Laughter is the best medicine is tried and true. I know that depression is just a natural outcome when someone is dealing with chronic anything. There are chemical things happening in the brain with seratonin and endorphins and such. Since I am unable to be as physically active as I was as an athlete it’s even more important that I laugh. Like exercise, laughter increases the endorphins; the body’s natural pain killers.

So that is why when you first meet me you may think that I am very silly. I am learning to roll with the punches and not take things too seriously. I realize that things could ALWAYS be worse. And, in many people’s cases, they are. However, I also realize that no matter what happens it is all under God’s control.

Let God be God: get out of the way.
So my plans to be a nurse practitioner were trashed, as were the ability to participate in a lot of the exercises and sports competitions that I enjoyed. Now I have a permanent disability that prevents me from enjoying the life I wanted to live. Besides the walking, standing, foot down time and distance limitations, I have the physical drain of the constant pain. Think about it, when you are in pain you get tired more easily, don’t you. I think part of that is from swallowing down the pain, not expressing it through some means. The other problem is the emotional drain. Frustration of not being able to do what I once did, it’s never going to get better than this, the extra time that adaptability methods require. It just takes more time to do things.

For me, with my bent toward perfectionism, I need to get rid of the “would have,” “could have,” “should have” statements. It just is what it is. I am not God. I am learning more and more the importance of the Serenity Prayer:
“God, grant me the Serenity to accept the things that I cannot change [past, not in my control], Courage to change the things I can [focus on what I CAN do, and learn new ways to adapt], and the Wisdom to know the difference.”

Over the last 21 years, I have learned a lot. I would not have chosen these events. But I now see where God was in control the entire time. “I know the plans I have for you…. plans for hope and a future,” is what God tells me in Isaiah. It is not the path that I would have willingly chosen for myself… motorcycle crash, crushed leg, 31 surgeries, pain and disappointments…. “sure, sign me up.” Nonetheless, I am blessed beyond measure. I have become a stronger person who is learning to take my value less from what I do and more for Who’s I am.

I joke about the fact that with so many surgeries and stuff, the guardian angels have to draw lots in hopes of not getting me as an assignment. I’m sure I have worn out at least a dozen sets. I know that like Paul, God has allowed me to be molded through trials. That if I hadn’t had all this happen TO me, because He cares FOR me, I would probably have been a prideful, arrogant, competitive jerk. So when the trumpet sounds, get ready to eat my dust… cause I’m going to be running into glory!

==== Today I am celebrating the fact that though this event was traumatic, it began a new direction in my life. A major turn for what I Biblically believe is guananteed to be for the better.