When you find your voice again

Perhaps it is a silent presence, a type of mindfulness that can speak as loud as a mountaintop yodel in a life-changing moment.  Or maybe you must shout it out, screeching through a resistant case of laryngitis just what is on your mind.  Then there are those measured words spoken through gritted teeth; oooooh, I hated when my mother uttered those when I was a child!  A crazy person makes sense only to his or herself when the disemboweled utterance emerges from the trouble soul within.  And the most agregious is the spine-tingling barbs of an angry person that can cut to the heart every time.  Sure wish I had more of the first one and less of the others in my history!

A gentle answer turns away wrath,
    but a harsh word stirs up anger.  (Proverbs 15:1)

Yes indeed.

The seizure attacks came quickly this evening as soon as my face hit the head of the bed, elevated with folded blankets to promote sinus drainage and ease the chest compression of a recent infection.  My left arm was tucked along my left side with my head turned to the right as I lain partially face-down.  This position causes less neck and shoulder pain so it is often my go-to position when I sense the episode ramping up.  The head-banging and shoulder trauma are minimized but the wrenching of my neck is nasty.  Oh well, that’s what the chiropractor is for, right?  Sigh.

Eventually I screeched out some “help me Lord” utterances with what was left of my voice box today.  That came whilst straining to cry out to my Jesus with an acute illness on top of the mysterious seizure-like tics that plague me every morning, evening, and after exposure to noxious stimuli.  I can’t even cry right!  Then things got incredibly darker.  In defense of my sanity I won’t go into details here so let’s just say that frightful images passed through my mind.  Then in my mind’s eye I could see the images on my arms.  Just then I noticed that Steve was stooping over the side of the bed beside me in the dark.  Holy crap!  His sudden appearance in the dark scared me further.  My body writhed with seizures, now lying on my right side with Steve behind me.  My arms flailed in the air, my legs flapped together then apart, and the screeching sound of my hoarse voice screaming holy terror would exceed any scene I’ve viewed from a psycho thriller for sure.  But this was not a movie.  This was ME!

A few decades ago some really bad things happened to me when I was a kid.  I spent about 12 years as a young adult in many kinds of therapy, therapy groups, 12-step recovery groups (Al Anon Adult Children of Alcoholics), faith-based and 12-step weekend retreats, and reading tons of self-help books.  True healing came when I got saved and the person of Jesus Christ showed me his love, care for me, and plan for my life if I would follow His lead.  He was restoring the years the locusts had eaten (Joel 2:25) when I met my intended beloved and married Steve.  I felt happy and free at last.  Four years later I got very sick with viral hepatitis, Lyme disease, and Chronic Inflammatory Response Syndrome (related to mold).  I haven’t been able to work in two years largely due to the seizure attack episodes multiple times per day.  They are heartbreaking for both of us in addition to many other folks who have witnessed them too.

Over and over again I have searched for meaning, a purpose for this extended illness.  The incredible expenses of remediating our home for mold in early 2013 surely tested our marriage for sure.  We were living in a hotel while navigating a myriad of details and tough decisions as Steve travelled between work, home, and the hotel; his daughter chose to continue living in the house and help us out during the entire process.  Eventually our dog joined us in the hotel.  Eventually we completed the remediation, opted not to sell our house, and moved back home.  However, the seizure attacks never stopped!  By summer of 2013 they increased to up to 4 hours per day!  No medical professional or online research has found an answer yet.  Somehow Steve and I grew closer through it all as our hearts were breaking; the pain and suffering has been great.

Recently the Lord did show me a few tasks that needed to be completed in our marriage.  The love between Steve and I over these past 2 1/2 years has become strengthened, deepened because of this difficult journey.  We have now turned our residence into a “safe home” which restricts visitors or the conditions under which others may enter our home.  This helps prevent exposures for me that could cause a negative reaction (aka seizures!).  I love that my beloved is helping to protect me in this way so that I can get well.  I love that he has been faithful to the Lord and to me through this entire journey.  Others are watching us and I understand that we are doing some things right!  My own restoration and healing from the past may have provided a foundation for the important growth in me that has happened of late.  I am grateful to be able to recognize the good that is here along with the challenges.  There is always good along with the challenges if we look closely enough . . .

Back to the scene in the bedroom.  I asked Steve to move from where he was stooped behind me to the other side of the bed where he would be in front of me.  The uncontrollable hell that was ravaging my weakened frame was frightening enough not to have a sense that someone, even someone I dearly loved, was lingering over me from behind.  Steve knows all too well that if he touches me during an episode it can magnify the symptoms significantly.  I just couldn’t risk a casual brush of a hand; my distress was already unbearable.  Then the breakthrough began to happen.  Speaking up despite the hoarseness of my voice rose up some inner strength I had never sensed before.  I had to ride out the frightening images and thrashing about, my estimation of what weeping and gnashing of teeth might be like in a Biblical description of hell.  Tears came.  Silence followed.  I was able to ask for what I really needed when scared.

Soon my gracious and godly husband was gently sitting beside me.  I’m not sure if he was more horrified or moved to compassion!  We processed the scene.  His eyes held mind for a long time in the darkness before I was able to reach out and touch his arm.  Soon he was able to reach out with comforting touch for me as well.  Somehow we knew that my intolerance to intimate touch for the past 6 weeks was finally broken.  I was able to lie in the arms of my beloved once again.

My writing this story includes a great deal of literary and intellectual license.  I mean that I think I might know what is going on, the purpose and meaning in some of this suffering, but there is only one person who actually knows the truth:  my Heavenly Father.  I am glad that I found my voice in the darkness this evening.  I am glad that I survived a wretched scene without too much damage or lingering baggage.  I am grateful to have reconnected with Steve and that he could look beyond the ugliness to the beauty imbedded in this crazy journey together.  I trust that the Lord will go before us in the next scene and lead us in His way everlasting for His purpose and glory.  Lord willing it won’t be so bad next time.

Thank you, Jesus, for your redeeming grace.  You make all the difference in the world for me, tonight and always.  Thank you for your enduring mercy, giving me have the strength to do that to which you have called me (Philippians 4:13).  Be my voice in the darkness and in the light.  In Jesus’ name.  Amen.

 

Flowers for Algernon?

Flowers for Algernon

Another temporary setback in my health tonight ended by a couple of drops of tea tree oil masking the noxious scent of perfume.  I don’t do perfume very well and am grateful for this suggestion of a friend familiar with essential oils.  Thank you Lord for Cindy and tea tree oil!

Sigh.  How am I supposed to be around people when the scent of any products they might wear with fragrances can trigger seizures?  I feel like a prisoner in my own home.  If I linger away from my cocoon then I am at risk.  And if a guest visits our home not wearing perfume but carrying a coat or wearing clothing scented from another day, BINGO.  I get sick.

I endured three major setbacks including last night and three other times this past week.  Setbacks that is, from significant improvements that came from taking high CBD hemp oil.  I was enjoying some sweet moments of near-normalcy!  At least the overall episodes are shorter.  I guess there is something else going on that is preventing the treatment from holding . . . .

Is it diet?  How can it be when consuming a strict Candida, mold-free, and low oxalate diet?  Could it be methylation or residual biotoxin illness issues?  Perhaps and I’ll be pursuing these at a new clinic next week.  Is neuro-Lyme the culprit after all and I need to get back into antibiotic therapy?  The Rife machine made me worse.  I’m not so sure about Lyme disease anymore as my genetic markers are more significant for mold illness than Lyme disease.  Still:  who knows?

In the 1966 novel Flowers for Algernon, Daniel Keyes portrays a mentally disabled man who gains intelligence after being selected for an experimental brain surgery.  The surgery was shown to be successful in a laboratory rat whose intelligence increases 3x after the procedure.  Charlie, the main character, undergoes the procedure himself as the story follows him from his menial janitorial position to falling in love with one of the teachers at the school in which he works.  Charlie quits his job about the time that the rat begins to decline.  The improvements did not last.  Charlie buries his little friend in a cheese box in the backyard near the close of the story.

I worked on the set of the stage play of Flowers for Algernon at my high school.  The sorrow of the scene pictured above when played out even by a wiry teenager was very emotional for all of us backstage.  I will never forget it.  For me it represented finding hope then moving forward in life with new skills and possibilities.  My life was already very painful at age 15.  The story touched my heart as we brought it to life for our peers and parents.  My tears had no where to go as I stood in the dark backstage, waiting to bring out props for the next scene.  When I got home the lockdown continued in the chaotic and unsafe environment of my childhood.  My sorrow was locked away for many years.  After much healing and decades of living, the Lord brought back this particular story to mind recently with the frustration of the illness that I am enduring:  I came upon a reason to have hope from seizures only to have that hope dashed against the wall.  Again.  It feels like death.

Sadness fills my eyes.  Of course I want to be well.  Every time I grasp for air, stabilize my neck for fear of my head breaking off, emit some guttural utterance from the forceful involuntary movements of every appendage in rotation or unison from a seizure attack I become very aware that I could die from them.  I stare blankly into space or hold my eyes closed to keep the room from moving.  Keeping my eyes open brings dizziness and nausea; keeping my eyes closed brings increased fear and a lost sense of time.  While still awake I sometimes can talk.  The words are strained and speaking (like trying to move) runs the risk of exacerbating the attacks further.  If the episode goes on too long then neurological collapse follows.  I either have to lie motionless until function returns or my beloved Steve transfers me out of bed and carries me to the bathroom or bed.  This more severe level of seizure occurs late at night when he needs to be getting ready for bed to be able to work the next morning.  It’s my private hell.  It’s his private hell.  It’s the private hell on earth that is our burden to endure at this time.  (See my non-epileptic seizure video for more information.)

To see a loved one losing the battle over illness, over injury is one of life’s greatest sorrows.  Even for a Christian, experiencing it yourself will challenge everything you know about grace, endurance, meaning, and more.  Flowers for Algernon is a fictional tale about a rat and a man who found answers but those answers did not last.  The story touches a cord deep within me.  Oh to taste the goodness of life and have it taken away!  I have searched for goodness for a long time.  One of the great opportunities of this life is to seize the sweetness that abounds, hold it lightly as it shines for a time, then let it go gracefully when we must either move on or the script of our lives writes it off the page.  It must be the Lord’s plan but why?  Such answers often never come.  Moving on can be the reward for grieving well.  Then there’s the fruit of living with loss that is ongoing:  when the disappointment never really goes away.  This is when you really know who you are.  This is when you really know Whose you are.  It can be the time when you are truly ALIVE.

I am a child of the King held in the shadow of His wings, His loving arms just like I quoted yesterday in Psalm 139.  This night I bring forth an invitation for my Lord to:

23 Search me, God, and know my heart; test me and know my anxious thoughts. 24 See if there is any offensive way in me, and lead me in the way everlasting.

13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.

My Lord sees me!  Even so, this illness is one of my greatest mysteries from all of the events that have transpired in my life.  In the past my Lord has graced me with seeing some good come from the evil, some divine plans that have emerged from the chaos through which the deepest desires of my heart have come true.  I will hold onto His words that:

17 How precious to me are your thoughts, God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.

At every turn, with each moment of sorrow I no longer ask:

Where can I go from your Spirit?
Where can I flee from your presence?
If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.

Indeed you have led me through it all.  I can trust from Psalm 142 that:

When my spirit grows faint within me,
it is you who watch over my way.

And as it reads in Psalm 100 we will all:

Know that the Lord is God.   It is he who made us, and we are his; we are his people, the sheep of his pasture.

We will:

Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the Lord is good and his love endures forever; his faithfulness continues through all generations.

Rest will come for you, Gentle Reader and me too as we read in Psalm 121 that: 

The Lord watches over you—the Lord is your shade at your right hand; the sun will not harm you by day, nor the moon by night.

The Lord will keep you from all harm—he will watch over your life; the Lord will watch over your coming and going both now and forevermore.

With that I bid you good night.  I’ll be fine.  Join me in trusting the Lord that you will be too, eh?