Into the Night

I am finally awake, stable, and coherent all at the same time!  It is now 12:48 a.m.  Such is life.

First snow dec 2009 007

On a good note, I was able to march around outside this evening in my snowshoes for about 30 minutes this evening.  The night air felt bitterly cold yet the sky was clear with all of the stars visible in our Midwestern corner of the world.  I love seeing our German Shepherd, Elle, jump from one snow drift to the other as she chases after my husband and me.  But perhaps my most favorite moment was seeing her waiting for me as she looked into the house from outside on our covered porch.  Steve had taken off cross country skiing in the backyard and pond area.  She usually follows him closely, often pouncing behind him in his tracks when the snow is deep.  Today she knew that I would be headed out with him shortly after he left and there she was:  waiting with her big expectant brown eyes.  Ah the love of one’s pup!

First snow dec 2009 010

Sometimes when I am alone it is hard to feel the love that I know exists in my life.  When I am the sickest each morning this is especially true.  For me it seems that so much of the success of recovering from this time of illness will lie in what I do with the grief of the trauma I have experienced.  For over two years now, I have felt traumatized by the wretched seizure attack episodes that wrench my body with pain, headaches, cognitive changes, ringing in my ears, crying, spontaneous vocalizations, and violent seizing.  For over two months, the episodes last around four hours total per day with the worst ones occurring in the evening.  The sadness can be overwhelming; the disappointment each time they return can be heavily discouraging.  Both can lead to a sense of emptiness that is devoid of love, hope, and meaning.  At some point I recover enough from an attack to get something to eat or drink.  Even eye contact with the lone pet left behind with me when everyone else in my life has gone off to work or some other noble activity can be a mixed blessing:  comforting and protective (yes) yet a pittance for more meaningful human contact.  By the way, where is God?

Yes, I often long for Jesus with skin on at these times.  I am grateful that most recently I have found Him in the caring voice of a friend on the phone and always in the loving embrace of my beloved Steve.  Sometimes I miss picking up the phone and calling my mom.  This desire to connect with her seems stronger the more the years go by since she passed away nearly seven years ago.  I guess it is normal when a person goes through a time of testing or sorrow to desire the comfort and wisdom of a parent no matter what your current age might be.  If my mom were still alive today I think she would want me to keep moving, keep going, keep trying despite the setbacks.  O.K. mom:  will do.  For tonight I’m going to call on the One who sees me whether or not my husband is around, the dog is awake, a friend is home to answer the phone, or my self-soothing words in my heart to my deceased mother means anything.  I’m going to the throne of grace.

My dear friend mentioned Psalm 91 yesterday.  Here are some gems from the Psalm to which those with an anxious heart often turn:

Psalm 91

Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty.I will say of the Lord, “He is my refuge and my fortress,     my God, in whom I trust.”

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14 “Because he loves me,” says the Lord, “I will rescue him;
I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life I will satisfy him
and show him my salvation.”

From Bibleclassics.com I found this little gem of insight into Psalm 91 that spoke to my heart this night:  “Whatever happens, nothing shall hurt the believer; though trouble and affliction  befal, it shall come, not for his hurt, but for good, though for the present it  be not joyous but grievous. Those who rightly know God, will set their love upon  him. They by prayer constantly call upon him. His promise is, that he will in  due time deliver the believer out of trouble, and in the mean time be with him  in trouble. The Lord will manage all his worldly concerns, and preserve his life  on earth, so long as it shall be good for him. For encouragement in this he  looks unto Jesus.”

Yes, thank you Matthew Henry.  I will hold onto the psalmist’s words of comfort inspired by my Lord who sees me on my bed of sickness, who promises He will never leave me or forsake me.  And if it be His will, He will deliver me from my suffering.  Into this night and for the rest of my nights I will ultimately rest in the loving arms of the one who is showing me His goodness despite the darkness.  No matter what the next day might bring I will trust You.  No matter what the next hour may bring I will wait on You. 

No matter what you too may endure Gentle Reader, I hope that you will be encouraged that your sadness or disappointment does not go unnoticed by the Lord who loves you too.  He is worthy of our faith.  And I know if we both but believe in Him, we will be blessed in some special way that will transcend our nights, our days.  In the meantime He will not frustrate us beyond our ability to cope and will provide a way out when overwrought with temptation.  These are promises in His Word and truths by which we can endure all things.  We will never be alone.  His eyes will always be smiling towards us through the looking glass of life.  JJ

I’m stuck to my chair!

Again it seems that my greatest clarity of thought arrives after 3:00 a.m.!  Such a strange phenomenon.  I am always amazed at all of us web crawlers on Facebook at this tender hour.  So I’m not alone after all.  So it’s o.k. then, right?

Sometimes I’m not so sure I’m doing this thing right:  trying to recover from a serious illness that is.  The findings, colorful cords, and beading wonders of Trinity Jewelry by Design sit right behind me, untouched for almost 2 months.  The creative juices appear to be flowing more through the keyboard than the macramé knotting board these days.  Who can think in color when just three  hours earlier I was nearly wretching from the noxious seizing of my once functional central nervous system?  Tics of organic origin.  Non-epileptic seizures.  Whatever.  I miss the once creative and functional Julie!

My beloved Steve is so gracious with me at these low times.  All I could do tonight was yelp and squeak a bit as he sat within earshot in our nightly arrangement of sorts.  I muttered a “help” and he came near, warming my frigid hands and feet with his comforting frame.  The episode continued, alas, for another hour or more.  Frankly, I lost track of time.  All I know is that I did not make dinner this evening; I’ve got another shot at making his lunch for work tomorrow after we part ways tonight Gentle Reader.  Looks like I’ll be able to pull some good eats together this evening after all.

In the song by Casting Crowns, Mark Hall sings of praising the Lord in the heartache of life’s storms.  Perhaps you remember this moving Lifesong ballad from 2006?

Praise you in the Storm

Yes, and perhaps you remember me posting it in a previous blog last year as well.  No big deal.  No matter how many times it takes, no matter how many tears may fall, and no matter how many blog posts you may endure the message will still be the same:  my face is towards my Immanuel through the storm to the rainbow waiting for me at it’s end.  Period.  There is nothing else for me to do.  My Lord has seen fit to keep me here with lightening bolts running through my mind each day.  Seizures can kill people.  I am still here.  For me the seizure attacks are a bit of a right of passage.  The more I have, the more my angst turns into breaths of anticipation.  What will come with the next breath?  No worries about tomorrow.  The moment here and now!  If my mind wanders to anything stressful, the symptoms worsen.  So I am learning to live in the length of one breath at a time.  One s-i-n-g-l-e b-r-e-a-t-h at a time.rainbow and storm clouds

No wonder it is difficult to leave my chair most evenings!  I am weak and tooling around on the computer is certainly a step up from lying there, writhing in bed.  Nausea and sweats can increase if I do too much unless there is some sort of a clearing phenomenon first.  When that happens I do as much as I possibly can before the freedom ends.  Sometimes I’m  not quite finished with a task when sickness returns; it’s always a bit tricky when that happens.  And that’s when the Lord adds His incredible increase, endurance, grace.  I cling to the God-breathed promises of His Holy Word and He delivers me without fail.  This is where my spiritual gift of faith comes from:  witnessing His faithfulness in my times of need.  Faith brings hope as well.

He is worthy of your cries my friend.  No matter how big or how small, the God of infinite mercy and love is ready, willing, and able to receive the desires of your heart.  If you don’t believe me then your definition of God is not big enough.  ‘Nuff said.

I guess it’s time to get up now.   Will it be leftover barbeque meatloaf or smoked turkey sandwiches for lunch tomorrow?  Gee, maybe I can even melt some cheese on the bread for a tasty treat.  I love spoiling my Stevers.  He is so good to me.  :J

The Writing is Divine

Magazines have always held my interest more than novels, textbooks, or even the subtitles of an award-winning foreign film.  I just don’t have the attention span for more than a couple of thousand words in a row!  I guess that perfectly places me in the realm of the lone blogger, hacking out short articles of inspiration (or perspiration?) well into the dead of night.

And not everyone’s rants hold my fancy for the five to twenty minute allotment I’m willing to spend.  Take the Editor’s column in a popular automobile magazine that graces my husband’s setting at the kitchen table every month.  This car guy’s language is so thick with adjectives, metaphors, and strained attempts to make an inanimate, mechanical object organic that I grit my teeth to get from the beginning to the end.  Just say it plainly Sir Editor!  He probably has a journalism degree.  I suppose that gives him license to use more words, write longer sentences.  Not me.

I am moved by the languid composition of words that flows like butter running off a freshly boiled ear of corn.  Gotcha, didn’t I?  Just couldn’t resist!  Perhaps the best example of the terse and poetic, the impactful and inspired comes from God’s Holy Bible.  The Word of God is an amazing work that tells of the physical and supernatural, good and evil, things infinite and small, and everything in between.  Where else can reading a single verse change a person’s destiny forever?

1 In the beginning was the Word, and the Word was with God, and the Word was God. He was with God in the beginning. Through him all things were made; without him nothing was made that has been made.  (John 1)

In the wonderful mystery that is God, we find power in His Word and receive His indwelling Spirit when we come to know Him as Lord and Savior.  I do not claim to understand how this works by reading and meditating on a few chapters in the Bible.  Mentioning it here simply illustrates the finding that the power of a written word comes from the author’s mastery of the subject matter and his ability to communicate it to the reader.  For the Bible, the God of the universe brings us Himself and everything we need for life in His handbook for living as communicated to faithful men of God who wrote it down for us to read.  His Holy Spirit stirs within us as we dwell in the presence of the King’s scrolls.  Moreover, we come to understand who He is, His plan for our lives, and are drawn into fellowship with Him.  This fellowship can last forever if we but believe what He has written for us, summed up nicely in John 3:16:

16 For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.

Now these are words that draw my heart and mind in a meaningful embrace:  the promise of living forever with my Lord and Savior, Jesus Christ.  Such a simple message really and yet one that changes everything.  Let’s see it in action in a little longer passage from the Old Testament, often called the bedtime Psalm:

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; (italics added)

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.

Now I can sure wrap my mind around these timeless and comforting images written long ago.  I started a Bible-reading plan through “The Bible App” on my Android phone at the end of last year.  I love it!  (There’s even a narration option for listening to the verses spoken aloud.)  Reading 3 to 4 chapters per day beginning in the book of Genesis goes quickly in this plan for reading the entire Bible in a year.  While I do not understand all of the ancient culture, I am amazed at the Lord’s attention to every detail in the lives of His people.  His love and care translates to you and I as well in the present day, when we spend a little time reading His Divine Word.  I am so glad to have found the best writer of all time and hope that my own words will honor Him too.

Well, there it is.  Simply stated and inspired by the One who wrote this special message on my heart for me to share with you today.  No words are more important than His.  Will you join me in spending a little time reading the Bible each day?  I promise you that it will be worth any amount of time you devote to dwell in His presence.

Connect with Just Julie

Hi Gentle Reader:

Just updated my interview page at Smashwords where you can find my eBook entitled, Hope Beyond Lyme:  The First Year.  View the interview at:  https://www.smashwords.com/profile/view/justjuliewrites

Would love to connect with you via your comments on this blog or try one of the venues below.  Take care and “talk at ya soon!”  JJ

Facebook: https://www.facebook.com/NewHopeBeyondLyme
Twitter: https://twitter.com/TrinitybyDesign
Blog: http://justjuliewrites.com
Smashwords Interview: https://www.smashwords.com/interview/justjuliewrites
Smashwords profile page:
https://www.smashwords.com/profile/view/justjuliewrites

Hope Beyond Lyme:  The First Year eBook now available on Smashwords and Amazon.com
Hope Beyond Lyme: The First Year eBook now available on Smashwords and Amazon.com

Taming the Savage Beast

“Don’t cry.  Don’t raise your eye.  It’s only teenage wasteland,” sung by Roger Daltry and Pete Townsend of The Who in Baba O’Riley, 1971.  (Decca Label)

The first rock concert I ever attended was “The Who” at the Pontiac Silverdome in Michigan.  The venue doesn’t exist anymore and neither does the band!  I will never forget the experience of seeing so many drunk, stoned, and wasted young people in one place before:  the place probably held 80,000 of them that night!

I got to go to the concert for free as a member of the Warren Jayteens.  The Warren Jaycees had a hot dog booth at the newly constructed Silverdome and we earned money for both of our community service organizations by working in their booth during Detroit Lions football games.  The Who concert was to be the first rock concert scheduled at the Silverdome.  When our Advisors in the Jaycees asked us if we wanted to work at the concert of course we said YES!!!  Gratefully we ran out of our supply of hot dogs that we sold as Hawkers in the stands just as the concert was about to begin.  We walked along the first level searching for the best view of the stage from the back of the seating area.  It didn’t matter that we did not have seats.  We were there!

I was there for the music.  It appeared that virtually everyone else was there to get “wasted!”  Sure is funny how my use of the term “wasted” has changed over the few decades since then.  Flash forward and it appears that my hope these days is that my life and what happens to me will NOT be wasted!  Time and experience are precious gifts to me:  a blessing from the Lord to spend reveling in His glory, His plan for my time on this earth.  We can’t take back either one after they are spent nor can we do them over again.  So I want to be fully present in the gift of, well, the present and rest in its purpose or meaning.

Therein the challenge lies.  How does one make sense of the savage beast that has become a part of my daily life?  Shall I accept this thorn in my flesh or fight for the cure with every resource available to me?  Do I drag my beloved husband through the details and horrors of every experience or escape alone:  just my Heavenly Husband and me?  These are the questions with which I grapple these days.  And more often than not, my quest for meaningfulness falls short in a pile of wasted time, lying on a bed, seizing from head to toe.  Then there’s the recovery phase.  Such a raw deal at many levels.  Wasted indeed, or so it seems.

There is no taming the savage beast at this point in time.  Oh sure there are things I have learned to avoid that make the seizure attack episodes worse like consumption of simple carbohydrates, new treatments, exposure to mold and noxious sensory stimuli, and travelling away from home into unknown environments.  But to make them go away:  not a chance so far.  I haven’t had an episode-free day in many months.  Two years have gone by in this personal hell.  This past week landed a night with a total of 6 hours of seizure and convulsive episodes with a 4-hour break in the middle somewhere in which I think I either passed out or slept.  Yeah, that night was supposed to be part of a special visit with family at their newer home out of State.  By the grace of God we had a few fun moments despite all of the suffering and post-seizure noxious symptom load thereafter.  Guess you could call those minutes His redeeming grace.  The scene captured below with my adoptive grandson, Jackson Rees, is a treasure to me.  Treasures sometimes come at a price.  Price paid.  Moment not wasted.

Jackson and Julie looking out the window

And so it goes.  Treatment continues for a systemic Candida infection.  Treatment is on hold for Lyme disease and the mold-related illness called Chronic Inflammatory Response Syndrome.  In this moment in time I just hope that the food I ate an hour ago didn’t have too much starch to turn on a yeast rock and roll concert in my brain.  As I close here, I guess I’ll just look out of the window of my mind and note the wonder that lies beyond.  This too shall pass and with it will come an amazing story of the Lord’s sustaining grace through the firestorm of illness.  (Philippians 1:12)

I am so very grateful for my Lord and Savior:  Jesus Christ.  I just couldn’t make it without you!  And if it is Your will precious Lord, please end this nightmare.  I am ready to live again.

Philippians 1:21 (NIV)

21 For to me, to live is Christ and to die is gain.

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For more on non-epileptic seizures of biological origin, see the You Tube video in a previous blog:  Hell on Earth