MOVING ALONG at a SNAIL’S PACE


Journal Entry, Tuesday,  September 6, 2011

Well, to me Summer is over. The leaves on my favorite little tree in our backyard has already changed to speckled orange and cranberry. I’m wistful as I look out the window to a grey, cool and rainy Tuesday, the day after Labor Day. Mark had to work again & I had I regretted that I got no visits or calls from friends or family.

Today marks four years and a half years since my Dystonia diagnosis,  I’ve come a long way, spiritually, but my progress in other areas have been intelligible. I read the blogs of fellow Dystonia sufferers and I just start to weep. Many shake violently. Some have given up their favorite hobbies. Most have become so dependent on their loved ones and families that they have lost their sense of  affirmation. That’s what a catastrophic illness does.

To be totally honest, watching Alex, (a 27 year-old Dystonia sufferer)  on the Montel William’s show was heart-rending.  I couldn’t  get through the first minute without crying this still-beautiful young woman shares that she had planned to be a dancer. Sharing this poignant struggle and journey, I wonder how others like her deal with Dystonia.  Regardless, she has become an inspiration to those of us suffering from movement disorders.

http://www.thedoctorstv.com/main/content/Alexs_Story

Each day, thoughts and emotions about mortality, usefulness, attractiveness and career aspirations flood my mind. It seems the quality of my life has diminished drastically since graduation from Brookdale College  in 1989.  So seeing Alex struggle through life, I ponder how she gets along each day. I feel compelled to join the an advocacy crusade to help people like her continue to live productive and fulfilling lives.

The focus of any difficult condition is living as normal a life as possible and I’ve worked very hard to do so in spite of such vicious discomfort and exhaustion.  Hiding in my house was is not the plan God has for me.  There is a purpose  and I’m determined to make the best of it so that others can look to Him to thrive and shine.

Few conditions so steal so much as Dystonia because our bodies are totally out of control. The constant movement drains the life, energy and any creative desire. All I want to do is be unconscious and right now, my teeth  has already clenched down hundreds of times. The muscles at the nape of my neck are already very tight and my tongue is sore from scabs where my teeth have bitten right through. Is there anyone out there who has a tongue swollen with bite marks?

So…what good things can I say about my battle with Dystonia?  I continue to express my sadness and hopes for the future through my blogs and journaling. They’ve helped greatly to daily assuage the anger and frustration of hating to wake up and to address my longing for  my life to return to normal again.  I’m impassioned about mentoring people in the health/nutrition advocacy and hope to  educate the public about the seriousness of our tainted air, food and water supply and how it contributes to neurological disorders like MS, PPS Alzheimer and Parkinson’s Disease.

I yearn to understand how my body works and how the immune system can break down from outside poisoning assaults.  Movement disorder victims are increasing and they will continue to increase until we health advocates demand clean food and water! Our bodies can’t work efficiently when we are constantly inundated with pollution, fluoride, heavy metals and artificial chemicals.  The liver, kidneys and gall bladder become blocked. Victims of MS and movement disorders have lost most of their Myelin  sheath because of heavy metals. I believe the key to my healing will be to purge my body of metals and accumulated toxins, not drugs.

How have I really coped the past four and half years?  Not well, because I’m such a creative and curious person who loves to produce and learn about everything wonderful. I feel as if my emotions are muffled and find it almost impossible to connect deeply with anyone. Dystonia has also affected my femininity and assessment of who I am as a child of God.  I must rely heavily on God’s promises that assure my worth through His love and grace for me. That is difficult when all my life I’ve strived to stay fit, poised, trim, focused and intuitive.  All these have fallen to the wayside. I can’t even try to look attractive. It takes too much effort.  Right now, just getting through the next hour is a challenge

I’ve also become clumsy and drop things continually. At times it’s been so unbearable, all I can do is weep until I can’t weep anymore.  The hard part sometimes, is no one wants to talk about their struggles, especially Christians. Most of them give a trite scripture verse.  Sure no one wants to hear complaining or talk all the time about how bad you feel, but dog-gone-it, tell me how you deal with  honestly!

On the plus side, I’m blessed to share every tear, angry outburst and prayer with my Savior and Lord, Jesus Christ, my dear spiritual family on Facebook and Indie heaven. My wonderful husband, Mark has been my defender and companion and  courageously bears with me in out battle together. Without the Lord,  though, I know I would have killed myself.

Thankfully Dystonia has  not affected my pure Soprano singing  voice or my fingers when I play guitar or do deft handwork on the hand-made cards I design. I take advantage of days where I’m not overly spamming.

Dystonia has ddefinitely dampened my desire to aggressively promote my music and books.  It takes tremendous amounts of energy,  time and focus and the draining and continuous movements leave me few hours of productivity.

I started my 4th original CD, Mod Prophet in 2007, shortly before the first spasms. Since then, I’ve had a severe curtailment of inspiration to write new songs. Once in a great while, during moments of  overwhelming grief, a new song will burst out of me.  “I’ve Come Here to Worship” is one such song that was borne during such a time and a dear friend has created a beautiful video which can be seen on You-tube.!

The most wonderful thing I can share about this painful  time is the reality of God’s sweet presence that has always sustained me throughout my life, but most especially these past four and a half years.  He always come in at the weakest times like a fresh, soothing rain to cool my parched and weary spirit. Perhaps that is the miracle of suffering!

My blogging/journey writing has also blossomed amazingly, allowing me the comfort and unrestricted platform to express my grief, sadness, regrets and joys.  In spite of the great and taxing weight of such a condition, God has truly  used me as His conduit,  (surprisingly) the areas of hospice, hospital visitation and at funerals.

I was told by a woman attending my husband’s best friend’s father’s funeral, that while I was singing my song, she saw giggling cherubs surrounding me. The woman was able to see into the spiritual realm. She insisted that I pay attention to my gift of healing to the sick and dying!

Expectations must be greatly lowered when you grapple with Dystonia. A neat, orderly house, beautiful trim, figure and a focused faith walk all fall apart and are often inconstant and sporadic. I often feel like I failed in my attempts to please God with my good behavior and faithful spiritual service. Since a young girl, much was expected of me by my father, my pastor, employers s and closest friends.

I try to make as much sense of it all as I can, but in the end, it is the Lord who sustains my balance and sanity.  Perhaps He is using this illness to make me dependent on Him and to show me I must learn to ignore people’s scrutiny, harsh judgments and  criticism, however well-intentioned. The Dystonia may have even be caused by years and years of conflict, hostile interactions and  too-high expectations placed on a fragile, and sensitive young woman trying to find her way in the world.

Dystonia may be just a complete break-down of my immune system and God wants to completely overhaul my whole body!

When ever I weep about the lost person I was because of this illness, God gently reminds me of His wonderful and tender promises. His grace is sufficient for me gauging my spiritual walk with others who enjoy good health is no longer an option. When I ‘m drained mentally and emotionally from trying to cope with the myriad  and mundane small tasks and chores I need to do each day, Jesus is there  to remind me, “lay your burdens upon for my burden is light. People have placed too many demands that have broken me and now I await my precious Savior to restore me.

Come quickly Lord Jesus.

WAGING the War…and WINNING it!


Journal Entry, March 30, 2011

Lance Armstrong riveted the world with his compelling journey battling and conquering cancer. Despite his devastating and dismal prognosis of testicular Cancer that spread to his brain and lungs, he managed to accomplish astounding endeavors, including winning the Tour De France from 1995 to 2005 and is the founder and chairman of the Lance Armstrong for Cancer research and support. This amazing and determined  man refused to accept Cancer’s “death” certificate.

CANCER thrusts the strongest man to his knees, the most tender and  dedicated wife and mother to the  most influential public servant. Cancer prejudices no one. We hear of battles fought across the oceans in wore-torn third world countries with tangible and energy-powered. weapons: Uzi’s, machine guns, missiles and rifles. But the most devastating foe rages within our own body.

When we hear of a friend or loved ones diagnosis, Cancer or any terminal illness, we are shaken to the core. We watch the daily struggle as body functions diminish and the body wastes away through chemo and radiation. We marvel at the courage of Cancer victims as they somehow survive their treatments and yet all around the world, there are so many others who also struggle against an unseen foe within their bodies.

Many struggle with familiar conditions such as Parkinson’s and Bells Palsy, but a new group of related “movement” disorders such as Dystonia, PSP are increasing with intensity. Not to diminish the seriousness of cancer, imagine the devastation of a condition where the body, jerks, spasms and violently thrusts your head forward, backwards and sideways? Imagine the exhaustion and expenditure of energy from such a condition where there is NO cure and doctors have no diagnostic tools to pinpoint the cause of this bizarre disorder than comes out of no where!

The neurological.system is like the netherworld of the deepest ocean. Most of it is unseen and still very little is known about it’s complex structure. This mysterious infrastructure encompasses ALL the major glands and organs of the body and even the brain.

When properly and accurately treated, Cancer survivors retain an active and productive lifestyle. Lance Armstrong is an icon for miraculously overcoming a deadly foe. I have yet to hear of recovery testimonies of movement disorder victims. From what I’ve seen, most get worse and some are completely disabled. We are looked upon as freaks when entering a social situation as we twitch and jerk our way through a conversation. Many of us eschew even going out in public so people don’t stare at us. It can be an uncomfortable or frightening thing to have a close encounter with a Parkinson’s or Dystonia victim.

I remember waking up one morning and going down to the kitchen of the home of an elderly gentleman who had Parkinson’s Disease. I stared in horror upon entering the kitchen doorway at a counter covered with Cheerios, bowls, cups and spoons. Milk and sugar made a sticky mess all over the cabinet doors and floor! I ran upstairs to Alex’s room and asked him what was going on. Then he explained to me what Parkinson’s Disease was .

“I shake so violently, everything falls. Ii can’t even pour milk into my cereal, everything splashes all over the place.

I was shocked that a condition could do that to a person. It was my first experience with a movement disorder. I asked him, “How can you live with this?”

I will never forget that day and now I’m waging a battle with a similar condition, young and vibrant as I am.

Yet, something in me bubbles like an effervescent geyser. I have something Alex didn’t possess, an undeniable power and strength that impassioned me to shine brighter than the sun and soar higher than any eagle! Like Lance Armstrong, I purpose in my heart, not to be vanquished by the assaults of my foe, but to scrutinize and study my opponent’s weakness so I can victor over him!

Amidst stressful driving through congested highway to doctors and practitioner appointments, through the daily, uncomfortably incessant vise-like invisible grip on my upper neck and spasmming jaw joins, through the myriad household chores and wifely responsibilities and through the endless required health/nutrition/exercise  routines and regimens, I groan with the effort of juggling them all. I stimulate my passion to regain complete recovery by the hope that is in God only.

What is it that sets passionate health and humanitarian advocates in motion and victory apart from those who die or became totally disabled? We refuse to acquiesce to the victim status. We have been given too much to give up. Christ Himself gave ALL of Himself, so knowing this, there is no going back. I move forward with determination, like a triathlon runner who has engaged in rigorous discipline to achieve his goal!

There are unsung local heroes all around us. Theo Vrahnos, one of my dear friends, wages his battle against Wilson’s Disease, a condition where coppers builds up in the body and causes almost irreparably damage to the neurological system. This beautiful young man refuses to allow this condition to stop him from living a social and normal life. I wrote a power  ballad  “Nobody Sees” about him. Every time I sing it in public, I remember signing to Theo while he was bedridden and now is married and a father.

Dystonia has made me a more compassionate person, concerned in bringing a hurting someone more comfort and acceptance. It has stretched me to be more tolerant of difficulties and challenges. It has pushed my mind’s endurance to it’s greatest heights as I focus on emotional, spiritual and creative strategies not only for myself, but for anyone struggling a disabling condition. Dystonia will NOT imprison me, in fact, it will usher me to even deeper spiritual realms than I’ve even imagined. I’m about to explore new frontiers in the medical and natural healing areas. I believe that God Himself is drawing me to Himself to find answers that secular minded experts refuse to ponder or accept.

God reveals great mysteries to those who search…like curious and hungry little children. No new knowledge will be given to those who think they know it all. So…here I am, Lord. Teach me more!