When there are no words

“Look up.  Look waaaaaay up,” were the words of The Friendly Giant in 1986.  This American children’s television host invited the viewer into his miniature living room where he pulled out a chair just for you by the fireplace.  Then an image of his fake leather boots appeared 10x the scale of the scene on the television as he invited little Sissy or young Bobby to follow the camera up to the smiling eyes waiting to tell a story, waiting to introduce you to a host of characters.  Rusty the Rooster was a silly-looking puppet yet their banter held my attention all the same.  Even though by 1986 I was not a kiddo anymore!

We often look up to see the wonder beyond us:  gazing at the twinkling stars so visible in the crisp Fall air or maybe oooing and ahhhing at the bright ornaments adorning the department store Christmas trees already on display before Thanksgiving.  There is something magical about a beautiful sight just beyond our gaze, just above our smaller human frame.  When that object is but ordinary the wonder may be less yet the opportunity to reflect may be just as profound too.

The ceiling above my bed of sickness holds much thought these days.  On a Monday I might see a simple popcorn ceiling in the same building contractor’s white paint of every home built that very year.  A few days later it may be the seam tape of the electrical lines painted to match the composite panel lining the roof of an aluminum travel trailer.  Two months ago it was a bright blue shade sail floating softly up, gently down above my patio chair when the weather was still sunny and warm.  Such simple forms that served to give me pause from the mayhem of the hours that dragged on before . . .

shade sail patio summer 2015

Times like these are best spent dwelling in the presence of the Lord.  No words fill my mind in those kind of moments.  The tears are already spent; the energy almost completely drained away.  Such is the aftermath of uncontrollable seizure attacks that plague my weakened frame day after night after day for hours without end.  The pattern continues despite new anti-microbial treatments, tests, consultations, prayer, tears, strategies new and old.  New pains come and find a way to stay.  There is nothing left to say.  There is nothing left to do but to dwell, I guess.

Even love can be like this I suppose when it hurts so bad and you still can’t seem to shake the pain away.  All you do is focus on the form that you knew or still know that stands in front of you when only a blank slate emptied of your future together remains.  Turn to the left, turn to the right, stand up, sit down, and unlike the cheer song at the football games in 1986, there is no fight!  Fight!  FIGHT!  when love goes away for good.  Oh how I long for the familiarity of the pains I had known long ago.  It would be so much easier to handle than the emptiness of my heart this night.  Yup.  The joy is gone!  Gone!  GONE!

So what’s a middle-aged gal to do in the middle of the night and there is nothing to look up to anymore?  When I have written more words from every angle that my heart can imagine and no new inspiration comes to fill the page, gosh, what will I do?  Not much, really.  Just wait I guess.  Tomorrow is a new day and it will be here before you know it.  Maybe something good will happen, eh?

In the meantime, won’t you hang in there with me?  Here, I have pulled up a chair for you too Gentle Reader.  The Friendly Giant is now known as Immanuel and has a special story to help us end this little time together.  It’s a great read for a bedtime story at any time of the day, I promise.

I do hope you enjoy it.  JJ

Psalm 121

When I look up

From my truck I see kayak racks:  looks like it’s time for a road trip South.

From our flagstone patio I see the bluest hue of sky that comes with the chill of this season.

From my jewelry studio comes the reflections of many table lamps bouncing off the walls as I strain to create, to sew, to knot into the night.

From our bed I ponder this life as the hours pass in the dark, in the light since the popcorn ceiling never made any sense when I tried to connect the dots up there anyways.

From lying on the kitchen floor I cover my eyes and cradle my head to minimize the brightness of the nickel light fixture, the damage from the internal unrest tossing me about, and the discomfort from not making it to the bed in time.  The pup sniffing my hair is sweet indeed.

And when I look up from my heart to my mind’s eye I see my Lord who whispers His words of comfort that this strife too shall pass.  He makes all things new don’t you know and this happens whether we can see it, feel it, find it in this fleeting moment of a day.  This is where I must persevere as I never cease to look beyond today to a better tomorrow.  It must come.  It will come!  Oh yes, it does.

Psalm 121 (NIV)

A song of ascents.

I lift up my eyes to the mountains—
    where does my help come from?
My help comes from the Lord,
    the Maker of heaven and earth.

He will not let your foot slip—
    he who watches over you will not slumber;
indeed, he who watches over Israel
    will neither slumber nor sleep.

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.

puffy clouds

 

A Bedtime Rue

rue herbKnown as the “herb of grace,” the rue is traditionally known for everything from dissipating flatulence to multiplying sperm.  How fitting for a tiny word often used in common English for an energetic little ditty on a stringed instrument too!

 

But at bedtime we need something a bit more serene and I’m feeling sleepy.  When needing to slow things down a bit even silence is a better salve for the soul.  To dwell in the hushed comfort of the One who knows me so well is just where I want to be this evening after a day that seemed to test everything of late.  So I will turn to the Lord and His Word in what I have heard called the ‘bedtime Psalm.”  Dwell with me awhile before His throne of grace and let our Heavenly Father’s heart speak to yours this day, this night.  I’ll seeya on the other side . . .  JJ

Psalm 121

A song of ascents.

I lift up my eyes to the mountains—
    where does my help come from?
My help comes from the Lord,
    the Maker of heaven and earth.

He will not let your foot slip—
    he who watches over you will not slumber;
indeed, he who watches over Israel
    will neither slumber nor sleep.

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.moon and stars

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?

Sometimes the night just passes unnoticed

SLEEPING_GIRL_TS4023-550x579Psalm 121

I will lift up my eyes to the hills— From whence comes my help? My help comes from the Lord, Who made heaven and earth.

He will not allow your foot to be moved; He who keeps you will not slumber. Behold, He who keeps Israel Shall neither slumber nor sleep.

The Lord is your keeper; The Lord is your shade at your right hand. The sun shall not strike you by day, Nor the moon by night.

The Lord shall preserve you from all evil; He shall preserve your soul. The Lord shall preserve your going out and your coming in From this time forth, and even forevermore.

I’ve heard this called the bedtime psalm.  Sure beats the one I grew up with:

Now I lay me down to sleep

I pray the Lord my soul to keep.

If I die before I wake,

I pray the Lord my soul to take.

The childhood prayer above offers me no comfort during a night like last night.  If the worst outcome of 15 or so total hours of noxious symptoms last evening and overnight were to repeat itself, I would need the truth of God’s word on my mind and in my heart.  Some wishful rhyme uttered as a “prayer” has only the fleeting power of a feel-good sentiment.  It wouldn’t refresh my husband enough either to feed me or carry me to the bathroom again.  Only God’s word has the power to transform our fragile lives, and I know He will transform mine someday.  I know he sustains my beloved with supernatural strength.  Only God’s word provides sustaining grace for all who suffer, for when sleep will not come.

This afternoon I must somehow get to 2 medical appointments despite the lethargy, pain, sweats, stiffness, low grade neck headache, ringing in my ears, and so on.

Oh Lord, I do hope these trials end soon!  Maybe I can nap later this afternoon?  Yawn.