And there he was

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My husband, Steve, and I recently attended Dr. David Jeremiah’s A Life Beyond Amazing event in our town.  I enjoyed Dr. Jeremiah’s presentations:  first to get acquainted with his family life then his message on enduring life’s challenges as unto the Lord.  However I must say that the fundraising prayer by one of his staff was tacky!  The music was loud, motivating, and moving.  Overall I must say that it felt good to be worshiping and learning in the company of fellow believers in Jesus Christ again.

I really wanted to meet Dr. Jeremiah after the event.  No problemmo as just one of about 10,000 people in attendance, right?  Very carefully we made our way to show center from the nosebleed section of the Allen County War Memorial Coliseum.  My balance was a bit off from the sensory overload from many directions as I still battle Chronic Inflammatory Response Syndrome.  Nonetheless, I was a woman on a mission and soon found ourselves in front of the stage talking to the gifted musicians still lingering around.  I complimented Dr. Jeremiah’s granddaughter who sang in the worship team and asked where I might find her grandfather?  “He had to leave for a fundraising dinner,” was all she said.  I was disappointed but understood.  Fort Wayne, Indiana was the starting place for Dr. Jeremiah’s ministry and many members of the church he had founded here were in attendance; surely there were special activities going on to which Steve and I were not invited!

We tried to find some restrooms that were not swamped by the crowds still leaving the arena.  Having been there for shows many times before, when we headed down an open hallway where some smaller meeting rooms were located.  We encountered the vocalists again and saw a meeting room bustling with people just before we found our destination.  The hallways were virtually empty except for a few late-comers headed to what looked like a reception.  Then just before I turned to go into the lady’s room, I saw him!  Dr. Jeremiah was walking with his wife headed for that same room and it was becoming clear that we had just passed the room where his post-event activities were to take place.

This was my moment and I stepped up to it.  I walked up to Dr. David Jeremiah with my arm outstretched to shake his hand.  He accepted it and looked into my eyes briefly as I said what I had rehearsed in my mind ever since I had expressed a desire to go to the event days beforehand.  It went something like this:

Hi.  My name is Julie ____.  Several years ago you gave a message that included the teaching that God’s man in the middle of God’s will, will not perish until the Lord God ordains it.  I wanted to tell you how much that message has meant to me as I have battled a serious illness with seizures every day for the past 5 years.  Thank you.  Keep doing what you are doing!

His spoke words that followed mine as I finished the sentence from his audio tape, as if he had just given the message yesterday and not over 10 years ago!  He thanked me and quickly continued to his destination with his wife.  I continued to my own destination with a sense of wonder and amazement.  That moment was ordained by God for sure, just for me, just for him.

My spirit was calm and full as I thought about all that had transpired over the past 2 1/2 hours.  Steve and I drove home lightly chatting along the way, mostly quietly in our own thoughts.  I would be very sick with convulsive episodes within the hour of returning home and showering.  My senses were completely overloaded from the loud music, close proximity to other people, and the effects of some new treatment ramping up.  For the first time I did not feel traumatized by the serious illness that I have been selected to endure.  My own words provided the comfort I needed to get through the darkness of the night.

God’s woman, in the middle of God’s will, will not perish until the Lord God ordains it.  He has a plan and purpose for our lives even in the midst of suffering.  And should I finish well, the tasks before me no matter how difficult, there may be reward someday but first there certainly will be a closeness to my Lord and Savior Jesus Christ, that transcends my understanding.  I want that.  And touch points in life like these will help me to craft my own life beyond amazing.

I’m up for that.

JJ

 

The Long and Winding Road

Paul McCartney wrote the famous ballad entitled The Long and Winding Road when inspired by the farmlands around his Scottish home.  He wrote it during a time of tension between band members of the Beatles and then it was published in 1970, just after the break up of the band.  I remember being very upset that they were no longer together after changing the popular music scene forever.

This is a sad song.  Tonight I understand the many sentiments expressed within the lyrics that go with this sweet melody:  melancholy to a sense of unmet longing:

When the road goes on too long before you reach your destination or you never really reach the destination you set out to find . . .

Where the twists and turns push you beyond the roadways onto the rough gravel, shaking you up quite a bit . . .

Who comes along with you sometimes wishes they were not there at all then comes around to being alright in your company after all the weary miles together . . .

What you find dashes the dreams you once had, leaving you with emptiness before the Throne of Grace where all roads eventually will arrive anyways . . .

And you shed deeper tears than you ever knew before in your pain and anguish . . .

Such is the song in my broken heart tonight.  All I can say to the God above or beyond is, “I need you now more than ever.  Please lead me back to your door . . . let me know the way.” JJ

Smaller Moments Mean More

When the mist on the pond lifts up to the air

The morning hath come and I give witness to life once again.

For I am up through the night, my old haunts hath returned

A way of coping, of living:  just what I gotta do for right now.

So I edit a magazine, make charts of treatments, plan for when I will be well,

Most folks would not notice the shifts ever so small

The wretched episodes continue albeit with shaking, less overall.

I had to gain courage to take more meds/more remedies than ever before

Go rogue to kill the monsters within with faith and every tool from this road.

“Parasites in the brain” sounds pretty scary might you agree?

Yet that is exactly where I have arrived so be that as it may

Find me spacey perchance to dream when restorative sleep comes that way.

The smaller treats of life mean more to me now in my softened state

I get to see them in slow motion and savior their texture, their smell even when awful like glue.

What is before me fills every moment in much more detail

Healing comes small before big so intentionally I walk through most of the day.

Don’t get me wrong, the chores fill more hours than they used to years ago

That ‘s just one part of the plan so is rest and in times of rest I believe answers we have found.

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One does feel ever so small next to God’s majesty revealed in the big sky over Wyoming . . .

The Dog Behind the Curtain

Dimly lit, like the medical equipment stored all around me, I sat in the vinyl seat of that cold wheelchair.  My head was unsupported as I writhed this way and that, right leg then left leg shaking uncontrollably.  Breathing was irregular and challenging as I pushed the air out of my chest to start the cycle again then again, gasping every few intervals.  Just my legs were visible from behind the curtain drawn along my right side and lit from light in the hallway.  A passerby might see my exposed knee bouncing up and down from underneath my torn jeans or maybe not.  Who would expect to see a middle-aged woman seizing just beyond a dark veil anyways?

Most likely a dog in a kennel could be positioned in such a fashion!  Perhaps to put her to sleep, to stow her away out of sight, to deal with her later?  Only a mean caregiver would treat an animal in such a way.  Or perhaps a nurse in the outpatient lab of a local hospital?  The latter was my lot this afternoon.  And hours later I grieved the insensitive treatment that I had received (rather had not received).  She never even responded earlier to my light chatter or attempts at humor as she withdrew 10 vials of blood from my scarred veins.  I had to ask her with strained breaths not to wheel me into the waiting room where others would gawk at my strife.  Holy cow.  Aren’t you paid to care for your patients?  You don’t have to care about me personally but HAVE YOU NO HEART?

Most of them have seen me react many times before to medical procedures that trigger anywhere from a couple of moments of shaking to over 2 hours of convulsive episodes and long after the procedure in their outpatient clinic was completed for infusions, injections, blood draws, and port flushes.  Several times other nurses have had to find coverage for their stations or stay late to take me to the bathroom in a wheelchair while my body writhed, gasping for air like a child with cerebral palsy.  Eventually the episode would resolve minutes after voiding in the toilet.

Once I was in the clinic having an infusion of fluids on my birthday and ended up spending the entire evening in the Emergency Room when the seizure attacks would not stop.  That was 2 1/2 years ago.  Twice they have had to call my husband to come and get me or bring me a medication to try and make it stop.  Dozens of times they have just allowed me to sit in a treatment room recovering, long after they had gone home for the night.  A p.m. shift nurse would come in and check on me every 30-60 minutes as I stared at the walls or the mobile T.V. screen in front of my face.  When I could walk again I would move to the lobby for another interval of time until I was stable enough to go home.  No one even noticed I was there.  By the way, they always play my fav HGTV in the Surgical Waiting lobby dontcha know?

This time the aftermath felt like being banished to the broom closet by an abusive grandmother.  I could not reach the call light and no effort was made to make it possible.  I heard the same phlebotomy nurse chatting lightly with the next patient after me who was there for an EEG.  And again with the lady having a blood test.  I guess they were less “complicated” than me.  They probably didn’t remind said nurse of her own seizure episode many years ago that had disrupted her life for 6 months.  (She had told me about that earlier this year while I was sitting in the clinic recovering from an episode triggered by the pain of the needle stick and extraction.)  Yeah maybe that’s it.  Or did she just want to get back to the break area this afternoon and not be bothered by me anymore?

These episodes and experiences create additional trauma for the person enduring a serious, long-term illness.  You come face-to-face with the reality that people just don’t care as much as they should or get tired of caring, even as professional care-givers.  Take more of their time, their effort, their expertise, their personal comfort than they are willing to give and you will struggle making up the difference.  You are pretty close to being on your own.  It is not your fault yet it is your fault.  Suck it up and figure out a way to get home and not kick the dog when you get there.  Almost 3 hours later I felt as beaten down as I could possibly be as I walked out of that place.

A warm fuzzy friend with big brown eyes and wagging tail greeted me at the door when I got home.  She loves me.  I love our Elle.  So at least for me, I will be caring for our dog in a well-lit room with all the comfort measures she needs within a reasonable time of her letting me know that need.  She may not even need to ask me.  I know what she needs.  I care about her and know how to take care of her.  She will not be shunned to a dark corner behind a curtain as others are walking by.  At least unless she is barking wildly at the UPS or FedEx driver, that is.  Into the laundry room alone you will go . . . but just for a moment or two.  She would bite a chunk out of them if I didn’t!

Well Elle, I must say that I know how you feel. Grrrrrrrrrrrrrr.  JJ

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