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 . . .

Handling loss is a skill for living well

Some disappointments this past week have reminded me of the importance of handling “loss” well.  Change is a certainty in this life and many of us have had more than our share of both the voluntary and involuntary fare.  Change often means letting go of something or someone we cherish.  For the Christian we can view change as part of becoming more like Christ, maturing in our faith, and working out the details of our lives with the Lord.  It is necessary!  And all too often it doesn’t feel well though.

Here are 5 changes that came in rapid-fire succession for me lately:

  1. A counselor that I have been seeing to handle the grief of this serious biotoxin illness I’m dealing with, suddenly discharged me from her care.  A week ago Tuesday I had a major seizure attack episode in her office and had to leave abruptly.  The episode went on while standing outside the front door to her office then continued as I struggled to get back into my truck.  An hour and a half later I was able to leave to return home.  She checked on me multiple times during the event and even called me a few times to discuss our next appointment.  Until that day she had been opening the window in her office for me to increase air circulation before our starting time.  When she did not do so until I was about to walk into her office (on a rainy, humid afternoon), the scented “warming candle” residuals, soil aerosols from her live plant, and possible contaminants embedded in the office carpeting were too much for me.  She is now unwilling to meet me in a nearby library conference room since her driving time simply would not be reimbursable, won’t fit into her busy schedule.  So for now it’s bye bye Julie.
  2. For the third year in a row I had to miss my husband’s United States Canoe Association Nationals due to illness.  I am sad.  I love watching Steve compete in his surf ski (racing kayak) and missed both of his races including the exciting trial class event with our outrigger canoe.  It sounds like there was a photo finish as he crossed the finish line and I was not there to take it all in or take pictures.  Sigh.  We love taking road trips together.  Even if we could have afforded the expense of travelling together, I cannot tolerate the fragrances of hotel rooms, conditions of camping, or the unknowns of renting a travel trailer.  Such is life with Multiple Chemical Sensitivity and Chronic Inflammatory Response Syndrome!  I stayed home with our German shepherd pup in our “safe home.”  Parts of the two full days were actually better by the way:  I got to dig in the dirt of a new garden bed.  The second day was terrifying however with two, severe, hour-long episodes while home alone.  My Jesus saw me through when I thought I would stop breathing.  I did not.  My husband needed this time away.  Besides, having someone stay with me or check on me in the end dangerously increases risks to my health.  We made tough choices indeed.
  3. I realize that the isolation that accompanies this illness is killing my spirit.  I sense my social skills eroding.  Sitting in my truck in a cemetery adjacent to a Garden Walk event on Saturday, I nearly panicked because I was late and there were cicadas plunking my windshield as I tried to wrap up a phone call with Steve!  I had not talked to anyone but my dog for 24 hours so I was glad for his call.  However, I had felt awkward and alone getting ready.  And I know that these were just feelings.  The evening out went fine with barely a few tic zips, enjoyment of select entrees, and meeting some really nice fellow gardeners.  It’s just that the social part of my life is so unnatural, absent, and different now.  Just like when I went through a divorce, lots of people have left my life once again.  Reaching out has been tough when it’s so complicated just to get together.   I will keep trying though.  I have to . . .
  4. An occupational therapy (O.T.) recruiter for an agency for whom I used to do contract work called me TWICE this past week!  I guess they really needed someone!  Oh how I miss working.  Last night I did the equivalent of 4 hours of (free!) continuing education credits for my O.T. license, inspired perhaps by the phone call earlier.  Maybe someday there will be an equivalent at-home professional job that I can do that will utilize my skills.  Just gotta get rid of some daily seizure attack episodes first, eh?  Today they lasted most of the day.  My “job” was to take a shower and make dinner.  Done.  Don’t need an App to keep track of this kind of schedule, I tell ya!  Sish.
  5. Most of the time my worship is in isolation.  For a long time I looked to my husband to try and fix this one for me.  Why wasn’t he trying to find a church for us in a newer building that wasn’t water damaged?  My criticism of him and “our” church goes on from here; it is not good.  I have tried to fill the void with a read-the-Bible-in-a-year App, Christian radio talk shows, following various ministries via email or Facebook, interacting with other believers via the same, and continuous prayer throughout the day including praying with Steve.  But I crave real Christian fellowship.  I crave Women’s Bible Study.  There wasn’t even an outdoor baptismal service with our church this year and the annual hot dog roast will be a “no” in October due to the noxious exposures from the campfire.  (The smoke was hell for me last year.)  My heart is breaking on this one.  I know the Lord sees it too.  I trust Him.  Just today I got the sense that I may need to reach out a little more and not wait for someone else to fix it.  I contacted our “Encouragement Ministry” leader about starting something with others who are home bound and I  am waiting to hear back from her.  Hopefully it will be soon!

While we could discuss the solution to these problems the more important point here right now is that I know that each of these will bring goodness in due time.  I have realized the promise of the Lord “restoring the years the locusts had eaten” (Joel 2:25) after my life fell apart in 2003.  Joy returned and reminders of it are all around me.  I have chosen to write about these things in hopes that you will pray alongside me for the Lord’s will and redeeming grace for these recent losses.  Perhaps you, too, have loved and lost much while enduring all kinds of trials.  Please let me know about them and I will pray for you.

Gentle Reader:  we are to stand firm on the foundation of our faith in Jesus Christ who will:

  • Make all things new.  (Revelation 21:5)
  • Direct our paths.  (Proverbs 3:5-6)
  • Extend His love, compassions, and faithfulness in newness every morning.  (Lamentations 3:22-23)
  • Remember us in our low estate with love that endures forever.  (Psalm 136:23)
  • Reward us for our faithfulness.  (Matthew 6)
  • Bless those who are good stewards of time, talents, and resources.  (Luke 16 &  Matthew 25)

And so much more.  I am encouraged.  My Jesus sits on the throne of my life and the throne of grace.  He will make beauty from the ashes (Isaiah 61) which are the losses that characterize living a full life here with Him as our Lord and Savior.  I trust His Word on this and hope that you will too.  Let us rejoice with great expectation for the goodness to come!

Isaiah 61

10 I delight greatly in the Lord;
    my soul rejoices in my God.
For he has clothed me with garments of salvation
    and arrayed me in a robe of his righteousness,
as a bridegroom adorns his head like a priest,
    and as a bride adorns herself with her jewels.
11 For as the soil makes the sprout come up
    and a garden causes seeds to grow,
so the Sovereign Lord will make righteousness
    and praise spring up before all nations.

 

My Goal

 

From Bible teacher Kay Arthur on Facebook yesterday:

“I have fought the good fight, I have finished the course, I have kept the faith; in the future there is laid up for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day; and not only to me, but also to all who have loved His appearing.” – 2 Timothy 4:7–8

You are an ambassador for Christ, pointing others away from things which are seen (the temporal) to things which are not seen (the eternal). So take courage, valiant warrior. Fight the good fight of faith, for soon it will be over and you’ll be on the Victor’s side, with the King you represented.

Will you be able to say as Paul I have fought the good fight? Or will you stand ashamed in His presence?

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

Thank you Mrs. Arthur.  I will stay in the fight!  JJ

Missin’ Mike and Good News Too

There is good news to report:  my brother will be moving into a better rehabilitation facility soon!  His fiancé is now his legal guardian and has received preliminary acceptance of his admission into the rehab. unit of a skilled nursing facility close to their home in Port Huron, Michigan.  Michael’s Medicaid is now approved which makes this transfer possible.  Lord willing he will be there within a week.

My heart is breaking that I have not been able to see him since our initial visit to him at St. Johns Hospital April 15th.  St. Johns dumped him into an inner city nursing home when a place became available who would accept someone with “Medicaid pending.”  The social workers claimed that they contacted 35 facilities before St. Francis accepted him.  While we are grateful that this search for a place ended up extending his inpatient rehabilitation 10 more days, the place he got transferred to isn’t much more than “3 hots and a cot.”  Oh I guess they give him his medication too and an occasional bed bath.  Not much for a 53 year old man who has just suffered a severe stroke and needs considerably more care.

I am sad that there has been no follow up on his medical needs after the initial physician visit.  (He has a tumor on a kidney that was to be scheduled for biopsy but nothing has happened.)  The staff at St. Francis has lost or been unable to locate most of his clothing.  Michael sits in a “geri chair” for much of the day which is a large vinyl recliner chair:  completely dependent upon others to be moved out of his room, into the dining room, or possibly into the T.V. room.  I understand that the building is very old with stained walls, stench of incontinent residents, and constant sounds of demented residents or staff milling about.  Michael has gotten weaker from inactivity.  His weight continues to be down even with the meals and treats brought to him by his fiancé and our cousin, Lisa.  Lisa is an optometrist on staff with the facility but that has made little difference in meeting Michael’s care needs.  Lisa witnessed a nurse writing her requests in the nursing 24-hour care log.  Nothing happened:  1) he continues to crave cigarettes whereas a nicotine patch would ease his chemical dependency and 2) he never got the wheelchair promised upon admission and supposedly recommended by the physical therapist.  I am convinced that the poor, sack-of-potatoes positioning in the recliner chair has contributed to his worsening left shoulder pain.  Such is life post stroke with left hemiplegia and no rehabilitative care.

In the meantime Sister Bear has secured a television/DVD player, wheelchair, walker, and bedside commode for him.  However with the lack of security for his personal items and transportation issues getting the items to him from their respective locations (wheelchair and commode in Mt. Clemens, walker in Adrian, and T.V. here with me in Indiana) everything is on hold until he moves into a better place.  Lord willing everything will move forward soon as various family members have offered assistance to get these items to him and his fiancé (also named Lisa!).  Lord willing I will be able to visit him at Marwood in Port Huron in about 2 weeks.  Surely my serious respiratory infection will be resolved by then and travel arrangements will come together; the seizure attacks have lessened some as well, gratefully.  I would have never tolerated visiting Mike at St. Francis due to the extremely high potential risk of environmental triggers for seizures.  Even the outdoor patio would have been an impossible place to visit coupled with the resident smokers.  Knowing all of this contributed to my heartbreak of late.  There was nothing I could do but keep in touch with everyone, secure the equipment, pray, and wait.

So I wonder what it has been like for Mike to be so debilitated, alone except for some weekly visits, in a dumpy and dirty living environment?  I understand that he had his Bibles brought to him and pictures taped to the wall next to his bed.  His fiancé Lisa says that he was trying to do his exercises on his own as best as he could.  Without being able to get up and bear weight on his left arm or leg, however, the benefits of exercise would be limited.  The risk for complications has been elevated with some realized as ongoing pain and weakening instead of continued progress.  He was too debilitated to return home from St. Johns Hospital without 24-hour physical assistance and considerable accessibility modifications.  Hopefully he will be more mobile and independent when it’s time to leave Marwood and go home.  In the meantime he has had a lot of time to think about many things.  I hope he reached out to the Lord, the person of Jesus Christ, in his time of need.  I hope he will find some purpose, some meaning for this desolate oasis of time.

Most communication between us has been cut off since Mike arrived at St. Francis due to the sorry state of their phone system.  (No surprise that the place is rated one out of five stars.)  After getting through to talk to him on his first day there, the facility phone was always busy when I called.  Twice I happened to call when his fiancé Lisa was visiting so I could hear his voice for a few moments.  The last time there were so many loud voices and screaming in the background that the words were tough to hear.  I can picture the scene in that place very easily.  I worked in all types of care centers from the inner city to private pay life care communities as an occupational therapist.  Many times I completed those wheelchair screening assessments and crawled around dirty, stuffed storage rooms and sheds until I could find a wheelchair with matching parts for a new resident.  Oh well.  When you don’t have insurance you get what you get.  I guess that Mike was actually fortunate to not be dumped in a homeless shelter.  At least there were security fences around the building and a guard at the front door.  The boarded up homes across the street were intimidating to fiancé and cousin Lisa yet they visited anyways.  I sure wish I could have gone to see him too.  I miss my brother.

I look forward to seeing Mike and holding him for a long time when I do.  There is much sadness for all that he has lost.  There is also much anticipation for all that the Lord has in store for him and his fiancé Lisa too.  I believe that the Lord has His hand on him in that Mike’s life was spared.  Just under half of all persons who experience a cerebral vascular accident don’t survive.  Mike’s cognitive abilities and ability to communicate have been spared.  His ability to swallow foods from a regular diet was quickly restored.  In my clinical experience these rarely happen in a person with severe left hemiplegia.  We are all hopeful that his ability to function will improve over time as well.  The rule of thumb is that the most rapid recovery occurs within the first 3-6 months post stroke.  He is six weeks out from his onset date of April 13th and continues to feel new sensations in his affected arm and leg.  And now his next phase of rehabilitation is about to begin bringing new hope for more return of function.  This time I’ll bet at least a quarter that Mike will be very motivated for physical, occupational, and speech therapy!  That will be very good to see indeed.

Until then, please join me in praying for Mike and his fiancé Lisa.  Lisa has a teenage son, Alex, who loves Mike and hasn’t seen him since April.  There’s a golden retriever named Garfield who misses him too.  The new place is closer to their home so I hope all of them will get together sometime soon; even dogs are allowed to visit at Marwood!  Oh I am grateful for such blessings.  Yes, there is good news this day with the promise of even more to come.  Thank you Jesus for your enduring grace and mercy.  Go before us, strengthen our faith, bring healing to our dear Michael for your glory Lord.  In Jesus’ name.  Amen.

Michael George Lech
Michael George Lech