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 1, Not Forgotten

For those of us around when the iconic movie of the 1985, The Breakfast Club, came out, we probably asked ourselves which character we liked the best.  Was it the one called Sporto, the jock?  Carl, the criminal?  Brian, the brain?  Molly Ringwald’s character, the princess?  Or maybe it was the outcast gal in black?  (what was her name?)  Here’s a little refresher with the song that still gets my heart rate going, my feet tapping!  How about you?

This is one of those songs that once you hear it, you won’t be able to get it out of your head for about a day!  Sorry.  I really like this song!  I really liked the movie too.  The character that resonates with me these days is Allison Reynolds played by Ally Sheedy.  If you don’t want to watch all of the clip below, kindly forward to the scene in progress around the 5:00 to 6:15-minute mark.  It’s where she confesses her deepest sorrow:

Yes, I get this type of sorrow.  Try being sick with a serious illness for coming up on 4 years and see who remembers your name?  See who identifies with your struggles?  See who bothers to ask, who bothers to call?  The numbers have dwindled for me for sure.  I have kept in touch with my closest friends from Illinois and made new friends in the recovery-from-this-or-that communities online.  My beloved husband (whom I met then married here in Indiana), Steve, has hung in there through with me the worst of the torment, the lifestyle changes, the failed treatments, and the thousand-plus nights with disrupted sleep.  (Watch these videos if you want to know what I am talking about.)  Some folks I know have graciously followed this blog through it all.  Thank you!  I am always delighted when I hear from one or two of them now and then.  Nice.  Well sort of.  It’s just not the same . . .

There is a place where I am known very well and keep in close contact.  There is a place where I have not been abandoned, ignored, discounted.  The place where I matter most and my closest companion is always there, always here with me.  That place is in the arms of my Heavenly Father through my personal relationship with his Son, Jesus Christ.  He never forgets about me!  I savor His words He speaks of me (and you too, Gentle Reader) from Psalm 139:

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.
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.

Oh how I wish I knew these words as a young woman when I first saw The Breakfast Club!  What matters now is that I get to lean on these words all of the time now in the quiet, dark places I have visited when alone with my Lord.  He has never forgotten about me.  I have always felt His presence even in my greatest hours of suffering.  He has spoken through the Holy Spirit often.  I have never felt “lonely.”  The Creator of the universe loves me!  I am so grateful.

But how well does he really know me?

To be continued in Part 2 . . .

He really cares: Part 1

The initial blog title rattling around in my brain for the last 24+ hours was, “You are THE ONE who really cares.”  After all, when each of us is alone in the midst of a trial (particularly when it is medical), it is only you that bears the greatest burden of the suffering.  Others offer comfort, prayer, helps of various levels, and if you are lucky will actually stick around for more than a few moments.  But it is you, one and only, who must bear the pain . . .  And that can be frightening to say the least!

Rather than rant about what to do with fear, give platitudes and verses with which to train your mind, and otherwise avoid ministering to the weeping heart, I will simply offer this:

Just lay your head on the lap of Jesus.

More than anyone, Jesus Christ knows what it is like to be killed, pained, abandoned, betrayed, falsely accused.  He is the only one Who can be with you as the Holy Spirit, in your time of sorrow from its beginning until its end.  He will never leave us or forsake us and always be there if we but call upon His name.  He is worthy of our

praise

tears

anger

weakness

alms

thanksgiving.  I was reminded of all of this just yesterday!

About 3:30 p.m. in the afternoon I was abandoned in a treatment room of my doctor’s office.  The nurse practitioner (NP) had left the room after writing an order for me to get IV fluids and after “catching” me collapse during a short convulsive episode during the appointment.  After all, that’s why I was there:  to document the crisis, get the orders, and head over to the hospital for treatment thereafter.  I was sitting there kind of dazed.  Soon after she left the room (and after another nurse came into the room to revise the scheduling of some other appointments), I began to list to one side.  There was a chair next to me with my purse and water bottle resting on it.  The weakness increased and a few inches at a time, I began falling to my right side, coming closer to the purse on the chair.  I could not speak.  I could not brace myself.  I could not do anything but be glad there was a chair next to the one upon which I was sitting so as to break my fall.

The next 20-30 minutes were very ugly.  My body collapsed fully onto the chair next to me.  My face smashed into the zipper of the purse while my glasses and cover-style sunglasses pressed into my face.  I looked straight ahead with my head rotated completely to my left, straining my neck most uncomfortably.   The front of my right ear was crushed underneath me on the purse whilst the back was free-falling unsupported; the back of my head pressed into the vinyl backrest of the metal chair.  Not exactly pillow material!  My right hip was twisted and pushed into the thinly padded, vinyl seat of the chair upon which I was sitting.  The ringing in my ears had already increased with the headache that had been working its way into action over the past hour.  Legs cramping, toe tips burning as much as my finger tips, and feet struggling to keep contact with the floor to stabilize my position . . . herein I would remain for the next 90 minutes.

I thought about many things.  First, I prayed.  I prayed again and again and talked to God about many things.  Will they be coming soon?  Do I hear them coming?  Was I expected to go out to the nurse’s desk after the NP left the room or was she coming back with more instructions?  I really could not remember since I was already in the brain fog of recovering from the earlier episode that she had witnessed before she left the room.  Surely the staff would notice that I had not left the room yet?  Or maybe not.  I waited in that same treatment room (#4) TWO HOURS the last time I saw the NP before I stepped out to mention that I was in there waiting.  “I didn’t know you were in there waiting for me,” she explained with her soft, sweet voice that I would learn never changes even in the midst of an emergency . . .

Time passed.  It was hard to ignore the searing pain of the two pairs of glasses being pressed with my full upper body weight into the side of my nose.  I could not move to get more comfortable.  I still couldn’t speak.  I tested this out and nothing happened.  In a while when I tested it again, my arm would start shaking; if I tried my leg, my leg would start shaking.  This is what I call, “neurological collapse” at it’s finest.  I learned on in a Catamenial Epilepsy Facebook page that in true epilepsy (which I do not have) has a name for this phenomenon called, “Todd’s paralysis.”  It can go on for up to 48 hours and mimic the signs/symptoms of a stroke.  Todd’s paresis usually resolves on its own without any residual effects.  I have experienced this complication at least once per week for the last 3 years.  Gratefully, most of the time the residual effects for me resolve within 2 hours, at home, in the evening, and within reach of my beloved husband!

There is nothing I can do to quicken the process of recovery from an episode.  It takes what it takes.  Knowing this I tried to calm myself down and focus on my breathing despite my twisted posture.  My rib cage was constricted so I did what I could to at least slow down each inhale, each exhale.  I did what I could to keep my neck and shoulder muscles tensed a bit so as not to twist my upper torso any more extremely than it already was.  I tried to relax the crushed tissues on my face so the pain would subside.  This worked poorly.  Suddenly the voices beyond the closed door seemed louder.  Then I heard the doctor’s voice.  This would be the time to try and vocalize something for help.  My voice was weak.  help.  Help.  I tried many times.  Probably no one in the same room with me would have heard those first cries.

I redoubled my efforts.  I took a deeper breath and vocalized a little louder, “Help!”  Then I rested and made more attempts, “HELP!”  Surely the door cannot be that thick!  I can see a crack at the bottom between the wood of the door and the low pile carpeting.  “HEEEEEEELP!!!”  I cried again.  My nose was running from the first time I had started to cry, dripping onto my purse.  Fortunately it is made of an outdoorsy, washable fabric.  Your mind thinks of all kinds of things when you are trapped.

To be continued in Part 2

The moments that matter

child with umbrella, boy, boy in the rain, blog about sorrow, overcoming sorrow, rainy day, hope beyoneWhen things are not right or even worse

We cry out to the air and wonder, “who is there?”

“Can anyone hear me on my bed of sorrow?”

“How long will this go on, how long?”

Oh the angst for enduring what simply should not be . . .

I could bemoan much pain in my heart this day:

From my spirit through my tender frame.

But why?  What will I gain by wallowing here?

As I listen to a friend who sounds like me over the waves,

I hear wisdom that comes with her years.

She doth declare that in her own time of prayer

The Lord spoke to her so gently.

In all of those times of suffering,

When surely no one cared He said,

“I was there with you.”

And her heart was full, no place untouched.

So today let’s heed this wisdom

Should we, too seek and hear His voice.

Don’t just want for the pain to end.

Reach into the moment to His love so grand.

Find people with mercy for the darkness of our lives

For we all have a burden to carry, each one.

And let us come together in prayer, in fellowship, in praise.

But most importantly

Kneel at the throne of grace often

In adoration of the Person who sees you always.

For Jesus loves you always.

And turn these into moments that matter for all time.

They will be sweet, and soften the burdens we will endure.

We can go on when held by His hand.

Yes, we can indeed.

JJ

It depends on . . .

Don’t you just “love” when you ask what appears to you to be a focused question and the person to whom you are speaking starts his or her answer with, “It depends on . . .”  Yeah, I have heard that a lot lately as I discuss product specs for my new company, Two Step Solutions.  My husband is a brilliant mechanical engineer and a bit more focused than me, I guess.  There is so much to consider so it depends on this or that parameter, application, material, use, and so on.  Yet this reply can be a bit maddening too, ya know?  :}]

Enter here a somewhat unusual perspective on the somber topic of suffering.  I would have never wanted to hear a blanket answer as to how to handle my own private hell.  I understand that Ravi Zacharias and Vince Vitale gently take an “it depends on”  approach in their new book, Why Suffering.  They recognize that for Christians, suffering poses both intellectual and emotional challenges:  God loves and cares about all of our needs yet desires to meet us amidst the unique circumstances in which we find ourselves in as well.  Here are some further insights from Vince Vitale in the Fall 2014 Issue of RZIM:  Quarterly News, Views, and Insights.

But while pain can be a great obstacle (to belief in Christ), it is also one of the greatest reasons to turn to God.  The more seriously we take the problem of suffering — indeed, the more seriously we take the people who suffer — the more we will be led to trust the God who can do something about it.

The challenge, I find, is that what each person needs when suffering is very personal.  There is no one-size-fits-all . . .  Ultimately, what we need is the presence of a loved one.  And when we have the chance to be that loved one for another, our temporary presence can act as an invitation to a life with the One who is always present.  One of the greatest gifts of the Christian life is that you never need to wonder if a loved one is near; you never need to wonder if a loved one understands.  That Person is always with you even within you.

While suffering can be traced back to humanity’s fall into sin, Jesus is clear that we cannot assume from the fact that a person is suffering that it is their fault or that they are being punished.  A second distinctive of the Christian response to suffering is this:  God promises that one day He will wipe away every tear.  What an amazing claim, that God himself will wipe away our tears.

And perhaps most unique is that the Christian God chose to suffer with us.  Suffering’s greatest cruelty is its isolation.  The Christian never suffers alone.  (We point) emphatically to the Cross of Jesus Christ, to the Cross of the only God loving enough to suffer with us and for us.  (p. 7)

May these words encourage you or your loved ones who are suffering.  While the experience of suffering is unique to each of us, we are not alone in our time of need.  God takes our angst seriously, suffers with us, and will deliver us one day.  My prayer is that you will seek comfort in the person of Jesus Christ who loves you more than anyone, more than you can ever imagine.  His Scripture reassures us this fact in Psalm 139:17-18:

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.

And that’s way more than my words can say.  Take care Gentle Reader and do let me know how I may pray for you, k?  JJ

Psalm 139 17 18