Known in the Gates: Part 2, The Inside Story

One of the movies that has really resonated deeply with me is, The Breakfast Club.  Please see my previous post for the catchy theme song that underscored the film and one of the most poignant scenes that is also pertinent to Part 2 of this 3-part blog.

In Part 1, I described the isolation that I have felt when enduring a serious illness and how the Lord still gets me through the toughest of days.  His Word is my greatest comfort; the leading of the Holy Spirit and His presence are my greatest companions.  I ended with a question,

But how well does he really know me?

Sure, my Lord crafted me before I was born and set forth all that I would be, all that I would endure and accomplish.  His Words in Psalm 139 declare that He knows my “innermost being.” Does this include the longing of my heart as well?  If it does, why has He allowed me to become so dreadfully isolated?

Maybe someday I will get to see why so many family and friends have chosen to “walk on by” me as it says in the theme song of The Breakfast Club.  Have I not been a good friend?  Maybe I was not.  I remember about two years into this ordeal someone contacted me and asked me about getting together for coffee.  I replied “yes” and then I never heard from her again.  My spirits had soared then crashed and burned.  For believers in Jesus Christ, the answer to the “why” question is usually left for eternity.  We simply may never know “why” this side of heaven.

Those of you not living in isolation may not have any idea how much Satan uses this experience to tear a person down.  He can prey upon all of our negative emotions and be allowed to create havoc in our lives.  (Yes, ultimately God is still in charge!)  Yet I know that it’s really not about resisting Satan or about losing the people in my life.  I resist the devil and his demons with the sword of the spirit:  the Word of God as described in Ephesians 6:10-17.  People come and go in our lives and that is the normal ebb and flow of life.  It really is about my response to the taunting, the loss of these relationships.

My challenge has been particularly great due to the effect that this chronic illness has had on my brain.  Responding to Satan’s lies and the loss of relationships has been affected by the change in brain chemistry that came with chronic illness.  My ability claim victory in the name of Jesus Christ and fully embody the companionship of my Lord have been affected.  Satan’s lies have been magnified.  My social skills have eroded.  My ability to think clearly has been altered.  And I struggled to override these skill deficits but could not, even if I tried.  Allow me to explain.

Only recently did we discover that excessive neurotransmitters called catecholamines (epinephrine, norephinephrine, and dopamine) are likely contributing to my mood changes, thinking and communication skills in addition to possibly causing the convulsive episodes.  This is happening due to the expression or “turning on” of polymorphisms (SNPs) or breaks in several enzymes that help form my DNA code.  The DNA code is the instruction manual or blueprint from which the body functions.  Everyone has a unique combination of broken SNPs that get turned on by illness or significant stressors in the environment (such as exposure to mold).  For me the factors included everything that I have written about in this blog:  biotoxin illness/hepatitis, latent Lyme disease, Candida toxicity, mold illness, infected root-canaled teeth, and mercury toxicity.  That’s a lot of stressors!  These illness and environmental challenges became a trigger for disaster.  I even have the data to prove it, all of it!

methylation cycle, Dr. Amy Yasko, SNPs, Lyme disease, mold illness, mitochondrial, mito disease, methylation, B6 deficiency, CIRS, mold illness,
One version of a methylation cycle from http://ihateticks.me/2014/10/06/methylation-for-dummies/

For some people this process manifests as a Mitochondrial Disease or a disruption in the methylation cycle inside the nucleus of the cells of our bodies.  My thought life was affected.  My mood was affected too.  I had waking and nightly nightmares not based in any reality past or present.  Those were internal things that my beloved husband, Steve, and the healthcare community could not see very often.  Several healthcare practitioners labeled me as having a mental illness of sorts, often without even completing a mental status exam or workup!  Gratefully, Steve believed me.  They all saw the wretched convulsive episodes that have plagued me for hours every day for 3 1/2 years.  And Satan was allowed to enter into the whole dynamic with lies and attacks that I will definitely write about at another time.  Absolute mental and physical wretchedness.

But now the gig is up!  Two days ago I woke up from a lovely nap after starting to treat this condition.  I had my first 16 hours seizure-free!  It’s as if someone turned on the lights in my brain!  Not only do I have a formula for correcting the brain-part of the process but the prayers of deliverance against the spiritual warfare are taking hold.  The cascade of negative mental, physical, social, emotional, and spiritual suffering is beginning to turn around. Lord willing, I am going to get well!

My Jesus knows all about every aspect of what I have described here.  He also knows the desires of my heart.  How do I know this?  My prayers long before this illness began was to become whole.  I had been broken by the consequences of a hard life:  events out of my control.  Many times during trauma the Holy Spirit would bring encouraging scripture to me that kept me moving forward.  Yeah, finding hope and finding myself has come through horrible, ongoing isolation and trauma.  I have worked hard to recover from so much suffering in my heart, my mind, my body.  Each step of the way has been both painful and meaningful.  Yet I tell you, Gentle Reader that nothing has been wasted!  I have learned to trust the process in EVERY CIRCUMSTANCE under the protection of my Lord and Savior, Jesus Christ.  And now the desires of my heart are being realized.  Cool beans.

So how does one rebirth the desires of one’s heart?

Jer 29.11b

To be continued in Part 3 . . .

Known in the Gates: Part 3, The Man Next to Me

https://www.facebook.com/227446947339836/photos/a.323357667748763.75624.227446947339836/823076851110173/?type=1&theater
From Facebook, June 4, 2015

When I was blessed in marrying Steve nearly 8 years ago, I often sought out Proverbs 31 in the Bible as a guidebook, a different kind of blueprint for how to love him in a manner that would honor the Lord and Steve the best.  Flash forward nearly eight years and enter the challenges of serious illness.  How do you “strengthen your arms,” “not let your lamp go out at night,” “watch over the ways of our household,” and support your man in the ways a Christian wife is called to when you simply cannot do much of anything?  By the Lord’s grace, that’s how!

Steve has become my whole world due to the isolation that came with a serious illness these past 4 years.  He is also the only one to whom I am called to serve during this season of my life second to the Lord himself.  I am no longer able to work in healthcare or serve others at my church.  At first this did not seem like enough.  Later on I stressed beyond belief to serve either one of them.  Now looking back I can say that each day I was given enough energy and clarity of thought to serve both as best as I could even in my times of greatest weakness.  These tasks are critical to fulfill the outcome cast in Proverbs 31:

23 Her husband is respected at the city gate,
    where he takes his seat among the elders of the land.

I just hope I did my part as best that I could . . .

The Lord through His Word in Proverbs 31 and other places (in addition to the leading of the Holy Spirit) showed me how to function in these roles through the most serious illness that I could ever imagine.  In turn for Steve the Lord through His Word, leading of the Holy Spirit, and fellowship of select believers, gave my beloved the strength to care for me during a season of our marriage that was incredibly challenging for him as well.  For example lost or broken sleep virtually every night!  Steve has fulfilled his calling:  there is much fruitfulness in our marriage as a result.  I will write more about this in the future for sure.  I am so proud of Steve!

The part of Proverbs 31 that has helped me to feel less alone, to feel that there is a “Jesus with skin on” who remembers me and loves me too is in the verse that captures the Christian husband’s response to her faithfulness:

11 Her husband has full confidence in her
    and lacks nothing of value.

Yes.  Throughout these 4 years of significant challenges in every area of our lives together, Steve has trusted me.  He trusted me when he married me and he trusts me now.  His confidence is such a precious gift when my spirits were so low and my self-doubt so high.  My husband has heeded his own call to love me as Christ loves the church in the most loving way imaginable.  My beloved husband believed me that I was truly sick and believed in me no matter what that looked like.  (For example, when I said that I would be o.k. though still seizing for the five-hundredth day this occurred when he is late leaving for work after caring for me that morning.  O.k.?  Really?)  Steve has championed my attempts to keep going, to search for clues as to how to get well, to get up after yet another defeat.  Steve is my hero on this earth.  Period!

One of the greatest challenges of life in general is the quest for significance.  Now let us return to the theme of this 3-part blog.  For a Christian husband to be “known in the city gates” as it says in Proverbs 31 is one reason why a Christian wife should serve her husband well.  We must respect our husbands in private and in public so that they in turn may be respected in the workplace.  We want this!  To make this effort to respect our husbands is important no matter the circumstances in which each of the partners find themselves.  Yes, the wife may be sick at home; be home raising the children; have her own career, tasks and accomplishments yet all of these are to be in concert with supporting the spiritual leader of their household.  This is a tall order handled to be with prayer for sure!

For me it has been very hard to be second:  to support Steve while remaining in the shadows of life when I am also number 112 or so by so many people that used to be a vibrant part of my life.  I had to bring this identity crisis to my Heavenly Husband over and over again.  It was the precious relationships with my Heavenly Husband first and my earthly husband second, where I have found the ability to keep them in the right order!  Jesus was my perfect companion at all times.  Steve needed to be away for work, spiritual feedings at church, and some recreation too.  I had to let go of the temptation to pull on Steve too much.

I simply could not have as much time with Steve as in our first years of marriage since I could no longer participate in activities that we liked to pursue together.  My Heavenly Husband filled my needs.  He gave me this blog, new friends, and an online jewelry business.  My Lord revealed Himself to me in ways I had never experienced before.  And when Steve came home, our reunions were always sweet.  I had endured a thousand wretched times alone.  It’s just the way it had to be for us.  In due time that would not create trauma for me.  I realized just how tangible having Christ with you can really be . . .

In Christ and in love with my beloved Stevers, I have found who I truly am, who my Lord has created me to be.  I have found love beyond measure.  I am never alone regardless of the circumstances.  In completing the tasks to which I am now called, our household works well and is peaceful overall.  I get to live Shaunti Feldhaun’s wise words as noted above.  And no matter what the circumstances, whether I return to work in my profession as an occupational therapist or whether I am home recovering from a setback of sorts, my call will be to stand alongside and possibly behind my husband.  My heart is full.  Both are lovely places to be!

And that my Gentle Reader is a great discovery indeed.  This is God’s design for marriage.  In the end the only “gates” where it is truly important to be known will be the open door where I will someday meet my Lord, Jesus Christ and He calls my name.  So sweet.

Will I meet you there too?  JJ

The Tale, The Test

Once upon a time in a land of giants, lived a woman searching for a dream.  The tall buildings and tall tales of love had left her scorned . . . what now to believe in?  “Who can I trust with the tender desires of my heart? she pondered.  And what would she do to make some sense of this story of hers that has not turned out like anyone had planned really?

Once upon a time in a land of lakes and rivers, backyards that you can really afford, and the modest building of boxes, lived a noble man.  He too had been scorned but by a shrewy one, shrinking his honorable stature in society and beyond.  And what will he do to calm the distant tempests of this life, to live in peace no matter what may come?

As fate would have it, the two dreamers met over the wires one cold Wintry day.  He warmed her with his intellect and she him with her remaining spark.  The love between them grew with passion, with promise of a happy ending together one day maybe soon.  So they married.  And life was good in the land not far away.

She learned to love the countryside, the bearded natives, the giant heart of her Sterjoy.  For in his arms she found love like no other.  “Jesus with skin on,” she would say.  Her night in shining aluminum for sure was now here.

He learned to love the green of the earth, the richness of organic life, the sweet spirit of his Jaboo.  For in her keeping he found respect as the man, the leader within that would emerge over time.  His delight he spoke of often; her delight to receive.

They found things in common:  to write, the open water, a furry Pupster too.  Road trips were a perfect match for his love to drive through the night with her lunchbox that was filled with all of their favorite things in tow.  Their families said, “at last!” and even the kids eventually came around as well.  Theirs was something unique crafted just for these years as all could see.  Their heartache had melted into a life that was lovely to the praise of the Lord who brought them together indeed.

Their biggest moment came four years later; no one saw it coming that fateful night.  ‘Twas a mystery at first as to why she was so sick and then why it would last so long.  They struggled and prayed, they searched and laid hands, they cried and they celebrated when hope would come for a little while at a rest stop in their lengthening journey.

Then things got uglier and she seized relentlessly day after night!  She reached for her Sterjoy with angst and often no words would come but the love between them would endure nonetheless.  He continued to slay dragons then try to minister to his wife late into the darkness without fail.  The toll was palpable yet they lived on, trying and hoping only to have their hearts thrown against the wall time and time again.  Herein was THEIR TEST.

Some tests take 2 hours, some longer, up to the duration of your life.  How will you respond when the buttons in the fabric of your character are pushed into your soul?  Most of us won’t know until it happens to us.  And if we make it to the other side who will care when it’s even worse at the next one waiting beyond:  oh no, it’s here again, the next trial?  When all you know matters not with the tears that collect on your worn sneakers that you are sure can take you no further, no further, I said no further, you are done!

They pondered and prayed some more.  They searched the Scriptures of Life.  Fellows held them up then held them out for a blessing, for respite, and neither seemed to come as the sunrise cast into its fall.  Then they realized that there were wounds in their hearts that their love had blinded them to . . . placing them on the chopping block or maybe for ransom and neither was able to make it different: oh my, just how?  They had done all they knew to do, that which prayer and inspiration had taught.  But it was their woundedness that needed to go first you see.  It had to leave whether she would realize her last breath or not.  To go on would require this.  How to keep the music playing in their hearts for each other was the real test right now!

So being the faithful man of God, Sterjoy separated the shrewy from his Jaboo.  He placed both on the throne of grace and turned his face to Jesus Christ for Thy will to be done.  He waited again.  He trusted in the Lord over all then waited and waited once again.

She being the receiver of the Spirit’s voice, obeyed in a way like never before.  She trusted even in the time when crisis came around again:  like a weak muscle that got worked but had only brought forth a crawl thus far.  And as she would trust and trust some more until her mind won over her heart, until both of them became strong.

Their story has yet to end while one thing they now know for sure.  The trials of this life are never wasted when the Lord carries you through in his chariot of grace, of love, and His promise for so much more.  Those two lovers hold out for the hope of heaven and know there they both will find rest.  Their love will be perfected by the Giver whose thoughts exceed the sands of the beaches where their lives have taken hold.

This day she has learned to believe her beloved and he, the heart of his dear one.

couple at sunset, couple by the shore, kissing, sunrise, couple at sunrise, Christian marriage, Christian couple

Gentle Reader, this story is a perfect image of the Groom as He envelopes His bride of Christ, His holy church.  How fitting a tale.  How fitting a test for us all. Sterjoy and Jaboo will live happily ever after one day without tears for trusting in the One due our complete respect:  our Lord in shining honor! He is here for these precious ones in their time of need. He is there for you my dear friend too.

Oh yeah. JJ

 

It’s more than a delicate balance

As anyone who likes to (or needs to) cook knows, it can be a tough balance to make a recipe taste just right.  The host of your fav cable cooking show says to add a pinch of salt and pepper as you watch her grab easily a fistful of seasonings.  Ah ha!  So that is why version mine comes out differently than yours!  Just ditch the online recipe on her website and fly by the seat of your pants!  Taste, taste, taste and make the dish all your own, eh?

I don’t tend to make meals using recipes anyways.  With a limited diet and having to make a wacky version for me and a “normal” one for my beloved, I would become too frustrated trying to follow the masterpiece designed by someone else’s reality!  I just start with what I CAN eat, add more salt with my eyes closed then put one of my go-to seasoning mixes on Steve’s version.  It works for us.  Well most of the time, that is!  And when it doesn’t, that is what salsa is for right?  (O.k.  I know I have offended someone out there now!)

My health situation of late is kinda like the same delicate balance.  Add too much zinc for too many days in a row or take a new supplement or med for more than 3 doses and whammo (!) I get burned at the “steak.”  There’s little more than dog food left of me afterwards.  Gratefully my Doc does exhaustive lab testing to try to coach me in the right direction.  But now even labs cannot predict the outcome anymore.  I seem to react to everything.  It’s worse when the pharmacist of an independent lab starts making suggestions too.  So I try this and that.  Oh how I want things to work out well!  So far, it has not.

I am my own worst enemy in these scenarios.  The results aren’t even back yet for the female hormones that are at a mystery level since going through menopause.  I went through menopause during the almost 4 years of this illness and these tests for me are way out of date.  The significance of the hormones is that a goodly number of women (who have true epilepsy) have worsened seizures during menopause and others have reported a new onset of what is called “catamenial epilepsy.”  While I do not think that I have epilepsy per se and all the fancy labs have supported this, I do find this course of study intriguing.  I joined a couple of Facebook groups on the subject and have hunkered down into some new online research.  Then of course I re-started a tiny bit of progesterone on my own to see what would happen.  Yeah, I know that I should wait until the lab results are back in a total of 6 weeks.  But heck, at the rate I have been going, 6 weeks means up to 210 more hours of convulsive episodes!  Why wait?  I am going to go through hell anyways . . . .

Dr. Erwin Leutzer of Moody Bible Institute teaches that, “when you are going through hell . . . DON’T STOP!!!”  Oh yeah.  That fits for me.  Not sure what to do with some of the symptoms that are emerging though.  Clearly this will need professional tweaking at some point!  Do ya blame me for trying?  What if I finally stumble upon the resolution to this nightmare?  There are so many labs that are off now and the convulsive episodes have escalated to 4 hours or more most days, I just figured that it’s worth a shot . . . worth disrupting the status quo.

The decisions of life can be a delicate balance over here sometimes.  Do we continue with travel plans when I am in the throes of chronic illness?  For us, the answer is yes.  We just adapt things a bit and get on down the road.  Life goes on.  In due time, if it is the Lord’s will, I am going to be well.  In the meantime we will use the portable heater in the Tin Can Ranch (aka travel trailer) instead of the noxious propane mini-furnace so I can be with my beloved overnight at his kayaking competitions out of town.  In the meantime I’ll freeze portions of meals to ease food prep when Steve needs to pitch in for me.  In the meantime I will fold laundry when my brain stabilizes in the wee hours of the morning and scratch the ears of our pup who gets more fractionated sleep than I do.  In the meantime Steve will head into work later to make up lost time and we will be grateful for his flexible employment.  And so it goes, a balancing act on steroids that we have come to master, one ingredient at a time!

Gentle Reader, I’ll bet you understand the need for balance with the stuff of life. Let’s look together with gratitude that we do have some choices even in the worst of situations.  For those who believe in the Lord, Jesus Christ, we know that all things, delicate and less so, will work together for those who love the Lord and are called according to His purpose.  It’s His promise from His word in Romans 8:28.  That is because He knows us and loved us before we were even born.  He knows and cares for all of the details of our lives!  (Psalm 139)  And He knows what choices we will make.  As for me, I will aim to make choices that keep me moving forward, aiming to win.  Sometimes things will be out of balance for a time.  Yet with my eyes fixed on Christ, leaning on His Word and the leading of the Holy Spirit I will run my race of life with endurance:  endurance the produces hope (Romans 5:4) and endurance to finish well too!  (Hebrews 12:1)

surf ski, surf ski racing, river racing, USCA, kayak racing, unlimited class, competition, drafting, Epic kayaks
My River Bear leading in a United States Canoe Association event last year. Gooooo Steeeeve!

Never sacrifice sweet victory for a need to stay comfortably in balance though.  Attend to the tasks at hand with wisdom then get out there and LIVE!  Do not stop!  May we both finish well my fellow sojourner.  The crown of glory awaits!

That is all.  JJ

The One Who Leads

outrigger canoe, tandem canoe, padding with your spouse, OC-2, tandem outrigger canoe, Hawaiin boat, HUKI, learning to paddle, learning to lead, learning to submit, follow the leader
Steve and Julie, the 4th of July on Blue Lake

Sometimes the person out front is the leader of the pack, charting a course for others to follow.

Other times, the one in back of you controls the rudder of your life and you have no other choice than to give into his lead.

The paddler beyond the stern of your boat may be drafting off your lead, riding your wake, resting to overtake the lead at any moment thus determining your fate.

But when matched up together in the same tandem kayak or outrigger canoe, it’s tough to see who is really steering the craft.  Is it the gal in front?  The guy in the back?  The force of the wind shifting them about?  The unseen forces of nature?

I submit to you that on the water, the average bloke cannot really tell what is going on unless you know a bit about the sport of paddling, the features of the watercraft, the paddlers therein, and the goal of the voyage.

Here we have dual controls on our tandem outrigger (OC-2), controlled by the pair of foot pedals in either the cockpit of the front or the back of the hull.  We decided a long time ago that Steve would be situated in the back of the boat and control the rudder to steer us from there.  My role would be to alert him to hidden rocks or logs and only change the arrangement in the event of an imminent crash!  Even if he took a different line down a river or around a lake than I would, it would be his responsibility to guide the boat.  And so it was for our first outing in the OC-2 since last year  . . .

Blue Lake is one of the cleaner yet smaller lakes in Northeastern Indiana:  about the same distance from our home as the 3 rivers that intersect downtown and south of us.  It’s about a mile long and a few miles to paddle around, inside the shoreline.  We decided that this would be the best place to go for a brief outing on Saturday.  The water was cool, the air was warm, and the sun was setting a fiery glow in the distance.  Fireworks spouted off all around us with smoke from these and summer cookouts that characterize the celebration of Independence Day in America.  The haze reminded us of the battles fought for the freedom of our nation in 1776!  This time the declaration on shore included everything cooked on the BBQ; the boaters under power and paddle on the water were friendly too.  Even the dad of the family that lived across the street from the boat launch who has befriended my hubby during prior outings, stopped by to say “hello.”  The best of our freedoms was all around us.  No one cared who was out front, in control, or taking charge of anything.  Everyone seemed out to have some good summer fun and that was all, including us!

I really enjoyed our 60 minutes canoeing yesterday.  Both Steve and I prayed in thanksgiving for the chance we had to be together sharing an activity that has characterized much of our marriage these past 7 1/2 years.  I joke that every summer I become a “kayaking widow” as Steve practices then races his surf ski in the northern Indiana circuit of the United States Canoe Association competitions.  But I didn’t use to be so alone.  Until the Fall of 2011, I usually went out with him in my own kayak and the Fort Wayne kayaking group on Tuesday nights.  On the weekends I loved cheering for Steve from the side of the river for as many Saturday events as I could get out myself out of bed in wee hours of the morning to attend.  He has continued to race all of our married life together, and race well.  I wouldn’t have it any other way.  And yesterday we were together again; last month I got to attend one of his races.  Lord willing both will happen again next weekend at a new event-with-festival.  Lord willing indeed.

The price to pay for participating in these events is very high.  I go to them when there is a break in the convulsive episodes and usually pay my dues with bed rest and intermittent episodes the following day.  This has been my routine for over 3 years.  This past weekend was no different.  And yet we still praised the Lord.  Jesus Christ was the One who once walked on water, carried the apostles to safety in raging seas from shore to shore, preached from the beach to the multitudes, and created the beauty we all enjoy.  He also led the two of us to a wonderful moment of recreation:  just me and my beloved River Bear.  I am grateful for this gift.  Period.

I am also grateful for the man the Lord has designed in Steve.  My Stevers waited all day long until I could leave the house after 6:00 p.m. to pack up the boat on the car racks and load up all of our supplies.  He had cleaned his car for me earlier, “just in case” I would be able to make it.  He changed up his usual workout once we were on the water to make the day meaningful for both of us.  And he led us through the entire experience as if the day was just like any other:  a warm summer afternoon on the water together in July.  Oh how I love you my River Bear!  I really don’t mind letting you steer us from behind.  It really doesn’t matter who is in the lead all as long as we can be together again like this.

Place me like a seal over your heart,
    like a seal on your arm;
for love is as strong as death,
    its jealousy unyielding as the grave.
It burns like blazing fire,
    like a mighty flame.
Many waters cannot quench love;
    rivers cannot sweep it away.
If one were to give
    all the wealth of one’s house for love,
    it would be utterly scorned.  [Song of Songs 8:6-7]

So whether you are waiting for inspiration, the man in your life to make a decision, the Lord to whisper His voice into your darkness, or for the rushing waves of illness to calm down in your tender vessel:  take heart.  The one, the One who leads will take you through the right waters at just the right time in just the right way to get you exactly where you know you really want to be anyways.  I don’t know if there will be fireworks to celebrate that moment in time like there was for me?  I do know that there will be a celebration in heaven for the faithful who have waited upon the Lord who loves you more than you know.

And He will bring you to that special place, Gentle Reader, where the sailing will be Divine.  Just look at how cool it can be!  JJ