Note to Readers: My journaling of my battle with Dystonia-TMJ is to bring awareness to friends l loved ones in the hopes of giving more help, compassion and understanding to our deficiencies. I also hope doctors and medical personnel can understand the various areas of our lives that are restricted and inhibit by inability to administer to our former duties, responsibilities and personal creative endeavors. These journal entries and (medical personnel involved) . Our symptoms may even affect our judgement and/or mental-emotional prowess before we had our condition. The utmost patience and compassion is needed for us to be contributors to our father’s kingdom. May our prayers, not just for Dystonia, Alzheimer, Dementia ( or any other victim of a health disorder,) not just be for our immediate healing, (so we don’t have to be inconvenienced) but to teach us patience and forbearance.
Journal Entry, July 5, 2016
Just woke up to another overcast day, promising more rain. I don’t complain because many states are in a water crisis. My vegetable garden is flourishing, but the barometer and humidity has wrecked havoc with my jaw joints. When atmospheric pressure changes, my neck muscles, nerves and jaws go berserk, making it almost impossible to accomplish any thing with merit. It’s going on two weeks trying to get together two of my best story to send to Guidepost inspirational magazine. I’m also waiting to get motivated to send m art package to a greeting card company here in Paterson, NJ.
Each day is different in this season of TMJ Dystonia in regards to what I’m able to accomplish, but it’s always the same regarding my determination to receive my miracle manifestation of healing. God has still not answered my question regarding what purpose this tormenting condition persists. At times my flesh reminds me that it’s going on nine years and if God had a great plan for me, how could He be so cruel to allow it to linger and so curtail my vivaciousness and productivity. I remind myself that Abba is a good God and everything He gives is wonderful and needful to His children. One thing I know for sure ..that His ways are perfect and He does know how much I’m suffering. Satan’s plan is always to ambush our minds and barrage us with a continual spray of doubting questions, physical pain and our focus of it.
At times when I have a moment of peace, such as when I’m pulling acorn seedlings in my yard, I feel His gentle presence. Oddly, my muscles rest and my jaw is calm. My jaw and throat also seem to get calmer while I’m focusing on my fine bead work. But mostly, I’m groaning in agony as I press forward, (much like pushing through a tropical impenetrable forest), through each hour to make it to bedtime. Here is where I rely on Father’s strength each day for sanity! When the neck spasms get so bad that I fall on the floor and writhe in pain, I can’t bare to be alive. Here is where I have to take captive that demonic spirit of suicide, death and insanity. I can’t explain to anyone except someone enduring daily pain on a scale of 8 or nine every waking moment of their lives.
After these many years, I deal with the grief of losing a good chunk of my life. A dark season of nine years is a lot. I know brother Joseph, in the Bible, had to bear thirteen years of incarceration, but having a agonizing and distracting bodily condition is a whole new ball game. The most painful thing for me is deducing my relationship with Father, Jesus and Holy Spirit. I’ve always believed that valid and thriving relationship with the Lord had to be true and breath-takingly reverent. My prayer times are anything but reverential There’s a whole lot of shaking and jerking going on, hardly my idea of anything pleasing to God! My focused prayer and devotions to Him are at best , sporadic. (I’m just being transparent with you). I often go in to prayer expecting the outcome to be detached and superficial because mostly… I weep through the whole time! Whew. Imagine struggling through your talking to father God?
“Father forgive me for being this way.”
Maybe tomorrow, I will have no more spasms and I can joyfully never and praise him. This is the uncharted waters that the Bible doesn’t address, so I have to contend with disgust of my inability to give Father my best and to even give Him His proper due.
The other devastating thing i that doctors I’ve seen have no idea where to even start for a treatment program. They look at me in surprise and apologize that there is nothing they can do. I’ve been researching and GOOGLING for over six years and have found only a few doctors who specifically treated Dystonia of the mouth and.or upper cervical area. A girl freind messaged me a few weeks ago telling me she also was researching my condition and found a Dr LEE, who has a private practice in South Korea. Many of his Dystonia and TMJ patients were getting successful results with his treatments! I also found a doctor in DE who treated TMJ. Unfortunately, they are very few and far in between in NJ and to travel to other states like the doctor in Teaas would be very costly and inconvenient for my husband to take off work. I continue to ask and pray whether father wants me to wait for His divine supernatural creative miracle for my jaw or travel to a TMJ physician. Father be merciful to us who are suffering.
Dr Lee’s practice and You-Tube link.
July 4th was spent praying for a breakthrough rest with my jaw and neck spasms. The day was already almost half over and I needed to express my love for my Heavenly Father. it was so frustrating, picking up my Taylor and just jerking so wildly, I had to lay down. Uselessness and despair threatened to ruin my day, but finally picked up my guitar anyway and started to sing my favorite energetic hymns, like Onward Christian Soldiers. Anyway, I am more than a conqueror!
Fast forward today, brought my Bible, a Max Lucado devotional and Jewel’s book, Chasing The Dawn into the bedroom. I prayed that something would awaken my heart and I’d be able to move forward into my day. My eyes fell upon the subtitle of Jewel’s book, Melbourne, Australia. I’ve always dreamed of Australia even as a young girl. Down Under seemed a glorious utopia far away from the chaos and heartache of my present circumstance of my parents plan to divorce. I often dreamed in my bed at night that I would somehow end up there and live a peaceful and creative life!
So Jewel expressed the sensations of her entering the stage to perform her repertoire to her Australian fans. Her writing was so elegant and enticing, making me miss my own performing and composing tenure. I felt a profound sense of loss that I was so far and disconnected to that glorious season of my life. Words cannot describe a performance were the performer “feels” her audience and they feel her. It is an indescribable connection that infuses the artists expression of singing-performing (and doctors have no idea the profound effects that a neurological disorder as Dystonia-TMJ can have on the creativity of a talented singer-composer. This has been a major grief, few realize the extent of loss when a performing artist is unable to perform (and compose) at the high level she was used to. I feel less than human and disconnected that this condition has so disrupted the beautiful overflow of expressing my music-soul.
When I perform before an audience, it’s like I gently fall off a trapeze like a leaf I lose all sense of the present, of time and the faces that gaze at me. Father placed me in a I a divine bubble and I’m floating in His love. Everything around me fades into nothingness and all I’m aware of is the holiness (and lightness0 of His presence. This has happened several times. Twice, when I sang at dying persons’ deathbed and at a funeral service, where a seer told my husband she saw cherubim dancing joyously around me as I sang my Psalm 91 original. Another recent time, was just last month while singing two of my favorite Hymns His Eye is on the Sparrow and It Is Well at a church concert. . Despite the fact I was miserable and my neck was inflamed with pain and my mouth was moving violently, I grabbed Father’s hand and took His strength. No one could have been more surprised than me, when everyone stood up and joined me on the heart-rending chorus, It is Well With My Soul. I knew it was God and God alone who carried me through the song.
This dark season I’m immersed in is complicated, daunting and bizarre with its untold repercussions. I can’t bare to be seen in public because of the embarrassing facial grimaces and my arms and upper shoulder jerking. Even standing in line at the post office for fifteen minutes is main achievement. With these negative symptoms molding me into something no one would want to be, I’ve learned to make some adjustments. I’ve long discarded the activity of complaining and have made a lovely habit of making someone’s day a little better. If I’m at the grocery store I find something attractive about the person near me and compliment them. I so delights me to see them smile and to make their day by a compliment. The practice of being a blessing to someone is a high point of my day. I refuse to give the enemy any ground or make him think that his attacks on me will sully God’s wonderful destiny for me. I want to please my Father by serving and being a blessing no matter how hard it is! I feel sad for mean people because I know that they’ve not practiced and seen the results of kindness in spite of their physical misery, stressful relationship or mundane life. Persistent acts of kindness and serving cheerfully is evidence of a God-infused lifestyle.
All this being said, I’m reminded of President Abraham Lincoln, One of the greatest presidents who ever lived, who endured and succeeded despite countless failures and disappointments, shut doors and heart-aches. Amazingly, he grabbed the bull by the horn in all his tenacity and audacity…his faith in God almighty. He prevailed, head held high even during one of America’s most horrific times, the Civil War. Though I’m not faced with anarchy, riots and the threat of assassination, I still am facing a mountain which shall be moved by my obstinate faith in the God who restores and rewards all things.
Weathering Dystonia, (as president Lincoln faced his own giants) I know that God must have a very important job for me to do in the future and He is preparing and training me for such a time as this. Thankfully, July 5, 20016, we are still in peace here in America and life is somewhat normal. I recently watched a Christian outreach organization, Ezra International outreach who focused their relief efforts on the refugees from cities near Ukraine. Soldiers had all but demolishes the businesses, neighborhoods and banks by bombs and machine gun fire. I couldn’t believe my eyes as I gazed at the footage of such devastation. Thousands were killed, there were bodies in the streets and many holocaust survivors were starving and left on their own. America could soon be enduring the same fate and I prayed that God would be merciful to the sick, elderly and young ones. Any of us American citizens could suddenly face the terrible war atrocities as our brethren in war-torn Ukraine and any other middle eastern city!
So… it would behoove me…and everyone to thank God that our country is still somewhat intact and not facing the atrocities and hardships of war and judgment. Maybe for a short time, we are still the land of the free and though my own personal suffering is challenging, t’s nowhere near the suffering of people who’ve had their homes destroyed by bombs and have no where to go to get their next meal.
Dystonia reminds me of the need to be more compassionate, empathetic and giving of my resources to those who have less. Though I’d never wish anyone to endure a condition that robs and diminishes so much of our lives, the blessing in disguise is the awareness and empathy of others sufferings and the motivation to do something about it!
Perhaps that is the gift Father looks to glean when we face a loss or bodily suffering. May father use you and I greatly to strengthen someone who has a deformity, impediment of disability