Torture, water-boarding and more: Part 3

[Eight hours have passed since I wrote Part 2 that chronicled the second phase of my recent hearing and vestibular testing at our local Balance Center.  Four hours of the eight were lost to persistent deep-brain convulsive episodes then passing out in exhaustion and tears for about 2 hours.  These episodes are different from those usually associated with epilepsy; I do not have epilepsy as I am awake, aware of my surroundings, sometimes able to communicate, and can often pinpoint the trigger of the living hell that follows.  (See this link for more information.)  The assessment was completed 1 1/2 days ago but its negative impact has lingered.  Here is my conclusion to this story with hopes of a little cathartic experience to follow as I use blogging to let go of the trauma that went before me.]

In Part 1 of this series I gave a brief history of the four years of illness that has precipitated the referral for testing at The Balance Center.  In Part 2, I shared the severe struggle I encountered with the first two parts of the second phase of test procedures rendering me useless on a treatment table with my own carbon mask covering my face, wretchedly seizing without end.  Eventually and by the grace of God the episodes finally stopped.  I learned that the 3rd phase of the testing would conclude in this third treatment room where I was lying and would normally take about 30 minutes to complete.  Alright, so again I rallied, sat up, got some new goggles calibrated, and got ready for battle.

The technician, “M,” had me lie back down on the treatment table for what appeared to be a simple process of keeping my eyes open in the darkened mask while she would be squirting some warm water into my ears, one at a time.  She said that the water would only be a couple of degrees warmer than my own body temperature but might feel much hotter than that.  She wrapped the left side of my head in A LOT of paper towels.  Then suddenly without any additional warning a massive blast of really hot water banged against my tender ear drum!  WTF?  (Seriously, I generally don’t swear so imagine something nasty like moldy f-ruitcake at this juncture!)  Then within seconds and before I could catch my breath CAME A SECOND BLAST of equally hot water!  Within 10 seconds I was massively dizzy, yes, the highest number on her 4-point scale, thank you very much!  How is this even possible?  What the heck could they possibly be testing through such a tortuous, water-boarding procedure?  I winced in more head and neck pain as the convulsive episodes immediately returned with a vengeance.  “Why Lord!?  Why all this suffering?” my heart cried.

I struggled as she kept telling me to keep my eyes open for two full minutes or we would have to repeat the sequence.  Oh dear not that!  All I wanted to do was close my eyes to retreat into the smallest cocoon in my mind and die.  (Someone please kill me now.)  Keeping my eyes open in a darkened room and blackened mask under these circumstances was more difficult that I can describe to you.  I was wearing my carbon mask PLUS the large black mask pictured in Part 2, much like Darth Vader in The Force Awakens!  Of course in the thick of the now-violent head banging it would be my only solace to close my eyes and hang on for a ride worse than a Mexican taxi driver racing along a dirt goat path along the side of a cliff.  (I know.  I have endured that too.)  I am not sure that I even breathed a peep for the remaining seconds.  “Please Lord.  Make it stop!” I pleaded in earnest.

“M” graciously gave me all the time that I needed to start to calm down enough to try again.  Perhaps, she said, she could allow me to skip the cold water-boarding torture test if I could only repeat everything on the right side too?  Well that almost seemed like some good news at last!  And there would only be one more test after this one.  “One more?  O.k.,” I thought to myself.  “I am not coming back to this holocaust-for-a-day ever again so I had better decide right now how much of this I can really take.”  And in the life of a believer in Jesus Christ the answer is faithfully:  all of it.  “Somehow, my Lord has seen me through so much hell in my life already,” I reasoned.  “Please Lord, help me finish so I can go home.”

The last 2 blasts of hot water were slightly less traumatic in my right ear since I now knew what to expect.  (Imagine that:  you are about to get burned in one of your most sensitive parts knowing that it will spike dizziness worse than any world-famous roller coaster ride.  You know that it is coming as the train click, click, clicks up the steep hill of the Gatekeeper at Cedar Point or some such nonsense.  Good times indeed.)  In that back room of The Balance Center I braced for impact.  Smash!  When the two minutes thereafter were done I wept from deep within my soul once again.  There no longer was anywhere safe for me, without sickness or pain, anywhere on the earth.  I am not being mellow dramatic.  I was a machetied puppy in my spirit and broken in my weary frame.  Everything hurt grievously.

In due time I was able to sit up, transfer to a chair, and finish the final light bar test.  I have no idea how I did this.  Suddenly the technician’s tempo increased and she revealed that she wanted to take me to the lobby so that she could clean the room!  I knew that I had taken longer than most patients in completing the battery of tests.  And that’s when her sweetness kind of stopped.  She re-appeared with a wheelchair as I was still deciding if I was alive or dead?  Could I move my limbs to get up or had I digressed into the neurological collapse that often follows severe convulsive episodes?  More shaking, more head-banging followed this time sitting up and it had not stopped yet when “M” returned.  (Those attacks are the worst kind, by the way.  No protection for my neck when flailing up in space.)  If my central nervous system was in collapse-mode then I would require maximum assistance to move.  Moments passed.  I breathed as best as I could.  I really needed to walk out of there under my own power . . .

And so I did.  I sat in the lobby for at least 30 minutes then another 20 minutes in my truck before even thinking about driving home.  I could barely eat a few bites of the makeshift lunch I had brought with me.  The words “shell-shocked” apply here.  By the grace of God I rallied again and was able to drive home.  Within a few minutes of arriving safely I came unglued, raced to our bedroom screaming and crying, overcome with grief, unable to speak to my beloved husband in complete sentences about all that I had endured that day.  My mind unraveled.  Somehow I completed the mold-avoidance procedures we follow when returning from any public place.  Hot tears streamed down my face, mixed with the cleansing water from the shower head washing away the horror, revealing the sinus and neck headaches, unmasking the fact that no where in my body was free of pain.  The bed received me at once with more thrashing/hell that was required to unwind all the damage that had been done.  Eventually I passed out for about four hours . . .

********************

Somewhere in this journey that the Lord has ordained for my life will be a glorious story of redemptive grace.  A miracle perhaps.  Healing?  Wisdom gleaned from the years the locusts have eaten, so to speak.  Blessings?  Those are promises that we all can count on when we walk with the Lord our God through His Son, Jesus Christ (Romans 8:28).  We will know that our trials will not be wasted.  Something good will come from them whether in this life or the next.  When I am more recovered from The Balance Center ordeal I will speak about this with more confidence that I can today.  What I want you to know is that I am not giving up.  My heart raced and I was unable to breathe during one of the most violent episodes that transpired during the test procedures but I did not die.  That being said, it is again crystal clear there must be more for me in the future.  I am still here so why not get ready to really live instead?  I can deal with that one for sure.

And so can you, Gentle Reader.  But if you are “dead” in your sins then that is a different matter.  Why not choose life in a personal relationship with Jesus Christ who will one day replace all of this suffering with fulfillment of His promises?  Please contact me if you want to discuss this further.  Please allow my suffering to bring you renewal, bring you cleansing once and for all.  We simply do not have any more time to waste!

Godspeed.  JJ

It’s just not my turn that’s all

Another day slipped into history as I pondered the gratitude I felt for a recent task accomplished.  It’s no matter that the wrapping of Christmas presents got done from about 2 to 6 in the morning on Saturday.  That’s just how I roll these days . . .

Social media is one of the ways that I employ to counter the tremendous isolation I experience while overcoming a serious illness.  I used to be shy about it.  Many folks write about their need for a sabbatical occasionally when Facebook and the like become too big of a time eraser.  My life is structured differently I guess . . .

My brother, Michael, often talked about the support he felt from fellow poker players online.  Really?  How can you experience anything valuable from an anonymous side chat in a gambling venue of penny poker through the internet?  Flash forward ten years.  Now I get it.  Mike was home all of the time caring for our mother who was struggling with lung cancer, chemotherapy, and alcoholism.  The things that he endured were very difficult.  He would say that he never knew what he would find when he returned home from running out to the store or anywhere at all, making it difficult to get things done.  Those little touch points with his fellow poker players gave him the assurance he needed to do what he had to do the rest of the day . . .

Should life return to “normal” one day for me then my time spent here with you will naturally diminish.  I’ll be sleeping in the wee hours of the morning instead of wide awake in the recovery phase of a hellish nightmare earlier that evening.  I have already grieved about it, the loss I mean.  So much time has passed with so little getting done in my own life.  Perhaps the tasks that have been completed are not measured on a calendar or my “To Do List?”  For those in Christ Jesus, we know that to be true.

Romans 8:28, encouragement, encouraging scripture, all things work together for good, hope, hang in there

Another example is how I finished reviewing a copy of a canoe and kayak paddling magazine last night for which my husband is the Editor.  I guess I can now add “Assistant Editor” to my resume for my contributions to the first four issues.  Cool beans.  I could list a bunch of crafty Christmas things that I would rather be doing yet that was not my calling for those hours.  Many will be blessed by this sacrifice including me.

Ever feel this way when sidetracked from your dreams, Gentle Reader?  In ways big and small we may struggle to discipline ourselves to do the tasks we must do when our hearts are in another room or time zone.  Know what I mean?

The bottom line for me on this subject tonight is that the sooner I rest in the promises of my Lord and Savior, Jesus Christ, the sooner I will realize that I am perfectly where I need to be.  He will provide everything I need from the breath that is not coming easily to the assembly of a Christmas gift still in boxes strewn here and there.  I know from another tumultuous time in my life that the Lord does answer our prayers in due time.  The waiting, the setbacks, the anticipation make the rewards sweeter.  How can I expect to make it to the finish line with style and grace if I give up on the last leg of the race?  I will not!

So don’t you give up on me either, k?  And please hang tough if you are going through challenging times as well.  If you need to cry out for help then please do so NOW.  Our God promises in His Word that:

The Lord will strengthen him on his bed of illness;
You will sustain him on his sickbed.

Psalm 41:3  New King James Version (NKJV)

He will see us through to our last breath if we but call upon His name.  My Heavenly Father has done so for me a thousand times.  He will do so for you too.  Tonight I am praying for us both.  JJ

Dog in bed

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

It is enough

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We had decided to pack four gallons of water just in case something went awry during our second cold weather camping trip this season.  The related online blogs recommended this among other tips such as purchasing a heated hose and waiting to un-winterize the travel trailer until we had traveled enough south to avoid freezing temperatures overnight.  And so we prepared accordingly reviewing our long “To Do” list of stuff over and over again before heading out the door.  Check!

Just before our departure, arctic temperatures plagued the entire country east of the Mississippi River from Michigan to northern Florida!  Who knew that after driving nearly 800 miles due south we would still be facing weather more characteristic of Indiana than our first destination in the deep south of Fort Rucker, Alabama?  We had run the propane heater in the Camp Lite a few times back home to minimize the out-gassing of the relatively new-used mini furnace.  We intended to fire up both heaters (propane and electric) soon after hooking up everything upon arrival so we could sleep comfortably.  Check!  After all it would be about 5:00 in the morning when we got to stop number one.

For God is not the author of confusion but of peace . . .  (1 Cor 14:33)

We did not count on the entire camper freezing over along the way!  I grabbed the hair dryer and extension cord from the cab of the truck and proceeded to thaw out both door locks.  Once inside I discovered that the four “emergency” one-gallon jugs of water were frozen solid as was the entire water system “winterized” with special RV antifreeze!  We had our two sport-sized bottles of water 1/2 filled with us in the car and that was it.  Closer investigation found some frigid water sloshing around in one of the gallon jugs so we gave it to our pup figuring she would not mind the temp.  (Sure would hate to have to choose between man and beast on such a night!)  Steve used a, er, warm water stream to punch a hole in the toilet ice seal to make it operational for the night.  Check!

Hooking up the water and electric did not go well either.  The water spicket had frozen beneath the towel that our southern/Aussie host (formerly from Indiana) had prepared before our arrival.   Hmmmmm.  When the crochety 30 amp electrical hook-up proved to be broken, Steve plugged us into the standard outlet to get us through the night, thus preventing draining our battery overnight.   Oh well, we could live without hot drinks in the microwave:  we had the warmth of each other after all . . .

But our bedding felt like it had just come off the train from Siberia!  Steve bundled up head-to-toe in Smart Wool and collapsed into bed.  I tried to join him but the nighttime unpleasantries I often face reared their ugly head first. Eventually the buzzed feeling I had from the late night excitement, convulsions and checking of Facebook yielded enough fatigue to turn everything off in my head for a few hours.  Even the sound of street noise 50 feet from our pillows drifted into the distance.  We had made it to see my hubby’s darling youngest son and his wife the next day and I was glad.  Check!

Many are the plans in a person’s heart but it is the Lord’s purpose that prevails.  (Proverbs 19:21)

Who knows why our lives are so difficult these days.  The last two times this past year we gratefully were able to camp with the conveniences of a travel trailer in colder weather we certainly prepared as best we could.  It’s not like we did not know what we were doing!  I perused and posted questions on multiple camping forums to learn from more seasoned travelers.  We purchased some special gadgets and kept snow pants, hats and gloves nearby; Steve donned his biking/paddling headlamp upon arrival like a pro to keep his hands free during the late night procedures.  I had enough food prepared in individual and meal-sized portions to keep me compliant with my special diet and the skilled driver nourished for most of our first few days away from home.  We did the best we could to avoid disaster and this is just how it goes sometimes!

The next day was a blur for me.  Yes, we said hello to Daniel and Elizabeth when they stopped by in their Honda Fit (everything is so cute about these two!) midday.  I had not eaten breakfast yet and needed some more recovery/rest time so Steve took off with them while I headed back to the tin can ranch.  What happened next can only be called a near-death experience!  That one deserved its own blog story so I won’t go into it here.

What is clear is that my writing block of late is definitely broken with some new experiences ordained by my Jesus albeit AFGE if you will (aka “another fun growth experience”)!  As in the Wizard of Oz when Dorothy turns to her dog Toto after the great tornado, I’ll say it here, “Toto, we are not in Kansas anymore” and that is good.  My social and geographical isolation enduring illness at home is now broken for a time.  What matters now is faith in the Lord and obedience for His will and I know that His goodness shall prevail.  Yeah God!

. . . keeping the commandments of God is what matters.  Let each one remain in the same calling in which he was called.  (1 Corinthians 7:19b-20)

For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.  And we know that all things work together for good to those who love God to those who are the called according to His purpose.  (Romans 8:18; 28)

Be encouraged Gentle Reader.  The two partial bottles of water were all we needed that night anyways.  It was enough and in our hearts we knew it all along.  JJ

Camper mascot Kermit the Frog here!
Camper mascot Kermit the Frog here!

The How Long Song

11 With this in mind, we constantly pray for you, that our God may make you worthy of his calling, and that by his power he may bring to fruition your every desire for goodness and your every deed prompted by faith. 12 We pray this so that the name of our Lord Jesus may be glorified in you, and you in him, according to the grace of our God and the Lord Jesus Christ.  2Thessalonians

You just never know who might be praying for you at this very moment.  If you have let your needs be known to anyone who is faithful to pray on occasion, it is very likely that at some point in time you are being lifted up before the God of the universe for His gracious care.  We might never know when that moment occurred or what was said.  We might feel a lightness in our human spirit or we just many never feel much of anything except our suffering.  But we can know this for certain:  that the God of the universe, the one Who made you and me, was listening at that moment.  His heart moved with compassion as your name came before His throne of grace that day.  And His thoughts towards you then and now outnumber the grains of sand on the earth (Psalm 139:18).  He loves you and me so much more than we can ever, ever imagine . . .

Our Heavenly Father has His hand on us.  His hand both reaches out to us and carries us through the mire in our lives.  We know that all things work together for good for His own, even the suffering.  Sometimes we get to see this in our lifetimes and sometimes we do not.  Our awareness doesn’t change the truth of the matter.  He is in charge and will use our suffering for His glory:  a greater purpose than our own lives (Romans 8:28).  Wow.  We may be relieved, blessed, redeemed, or justified too as he pours out His goodness.  We must hang in there for we cannot know what the next moment or next day may bring.  Even when the troubles continue on and on, in the words of Job to the Lord,

“I know that you can do all things;
    no purpose of yours can be thwarted.
You asked, ‘Who is this that obscures my plans without knowledge?’
    Surely I spoke of things I did not understand,
    things too wonderful for me to know.

“You said, ‘Listen now, and I will speak;
    I will question you,
    and you shall answer me.’
My ears had heard of you
    but now my eyes have seen you.
Therefore I despise myself
    and repent in dust and ashes.”

This is such an incredible witness of humility coming from a man covered in oozing boils, having lost all of his earthly possessions and children as well.  I cannot imagine such suffering even on my worst days.  Despite the episodes of wretchedness that continue to plague most of my mornings, afternoons, and evenings  I will remain faithful to my call to love Jesus and trust in His plan for my life.  Otherwise this journey of mine could be deemed meaningless.  Suffering for nothing is the alternative.  Holy cow, that would never get me out of bed in the morning!  A searing post-seizure neck headache and global pain puts the creamy taste of even the best bulletproof coffee down the drain every time.  NO WAY!  Only the promises and reassurance of my Lord and Savior are enough at these times.

The only way for me to endure the stress of my life at the moment is to let Jesus take the wheel.  Sometimes I just sit and stare for many minutes at a time.  Sometimes I am not “productive” in a day until what others would call dinnertime.  And sometimes I get a few things done then go back to bed for a long time.  Graciously there are a few other times of late when I can get up earlier while it is still morning and remain out of bed for the rest of the day.  Hey, I might be getting better after all!  I used to go to bed between 3 and 5 in the morning!  That pattern is generally broken and for that I am grateful.  Like my Grandma used to say, I’m getting there, “slow but sure.”

The How Long Song must leave my vocabulary.  Like the Ann Lander’s article quoting Robert Hasting’s article called The Station, we will “get there” when it is time.  Life is about the journey dontcha know?  Further, we will “get there” when the Lord wills it.  My job is to endure well, the journey I am called to take, seeking His will and keeping an eye out for His fingerprints along the way.  Let me not miss any measure of His sweetness in the sound of a calling bird or the bloom of a wildflower in unexpected places.  He will never lead me astray (Hebrews 13:5) and never require more of me than I can handle (1 Cor 10:12) with His grace.  He is with me now and until the end of the ages (Matthew 28:20), the end of my life.  That is reassuring indeed.

I’ll close with an unexpected blessing that has come right in the thick of all things stressful over here.  Twenty minutes of bliss.  Cool beans, eh?

Julie and Kinsey cruising along in the tandem  outrigger canoe!
Julie and Kinsey cruising along in the tandem outrigger canoe!