When the hospital comes home

We all need our spaces, our places of retreat.  Is it that corner where you curl up with a favorite magazine or book?  Maybe there’s an oasis in the backyard, coffee shop, or park down the way that brings a bit of renewal sometime during the week?  Perhaps in a busy household a mother of small children finds solace in the bathroom behind a closed door when sitting for a spell?  During a stressful transition in my life I would drive to downtown Chicago on a Sunday just to “see water” along Lake Shore Drive.  Yes, those moments are precious and necessary for sure.

For those with a special love to share one’s life, the hours alone together can bring refreshment in a whole new way.   Take a moment to enjoy the words of Christopher Marlowe who invites his lover to come hither to a far away place . . .

 Come live with me and be my love,
And we will all the pleasures prove
That valleys, groves, hills, and fields,
Woods or sleepy mountain yields.

And we will sit upon the rocks,
 Seeing the shepherds feed their flocks,
 By shallow rivers to whose falls
 Melodious birds sing madrigals.

And I will make thee beds of roses
 And a thousand fragrant posies,
 A cap of flowers, and a kirtle
 Embroidered all with leaves of myrtle;

A gown made of the finest wool
 Which from our pretty lambs we pull;
 Fair lined slippers for the cold,
 With buckles of the purest gold;

A belt of straw and ivy buds,
 With coral clasps and amber studs:
 And if these pleasures may thee move,
 Come live with me and be my love.

The shepherds' swains shall dance and sing
 For thy delight each May morning:
 If these delights thy mind may move,
 Then live with me and be my love.

The Passionate Shepherd to His Love
Christopher Marlowe

Ahhh, the delight of romance!  Is there any greater pleasure in life?  Well maybe yet perhaps we can agree that there are very few?  😉

During these years of serious illness, my refuge is largely our home.  For now what was once our retreat for romance and the stressors of life has been transformed into a place for a different kind of healing.  Indeed we have created a safe haven from noxious exposures that can make me quite ill elsewhere in the world.  I have become increasingly grateful for the work I had done a few years ago to decorate our dwelling place in pleasing colors with a lovely landscape to view out each and every window.  Little did I know when we were settling in here that I would spend most of the past 4 1/2 years housebound.  Little did I know that right when I started to get a little better, the comfort I found at home was about to drastically change.  I really don’t like it.  See what you think.

Three days per week a nurse comes dressed in medical garb to administer IV infusions.  Our living room morphs into a hospital outpatient clinic for nearly 3 hours with linens draped over the furniture to protect me, to protect her.  Packages arrive via Fed Ex at least one morning per week with bags of drugs on ice, medical supplies, and no presents, no card from mom.  The pup with the big brown eyes is sequestered in a back bedroom lest her presence or fur flying through the air risk breaking the sterile field needed to access the power port in my chest wall.  She whines and yelps for a time then drifts off to slumber as the drip, drip, drip of the IV bag empties into my body.  Gratefully my nurse is very skilled and unassuming.  She has the perfect temperament for all this stuff too.  I just wish we were out shopping instead, ya know what I mean?

I have tried very hard to pack everything up afterwards and in between home care visits.  The IV pole goes behind a door in a spare bedroom and the supplies fill a couple of bins and boxes in our office.  The laundry quickly goes into the washer after Michelle leaves to diminish the fragrance of her favorite laundry soap that lingers no matter how hard we try to avoid it.  Her shoe covers and all the used medical supplies get tossed into our makeshift trash bin and sharps containers.  Within the hour after my “visit” ends there is no trace of the intrusion that these treatments bring to our private spaces (except for the wooden sauna that rests where an entertainment center once was, that is!).

Oh well.  Thereafter with a foggy fatigue and soreness above my breast (from accessing and deaccessing the port each time) I make my way to bed for a very long nap.  The seizure attacks are coming down giving way to a time of rest.  At least I can retreat with a little more peace to the one place that remains undisturbed!

Perhaps one day I will find an internal space that refreshes when those around me can’t quite get it done.  Oh wait, yes, there it is in the shelter of the wings of my Savior, Jesus Christ.  He protects me and refreshes me from the trials, the troubles all around.  With Him I can face another day with renewed strength and courage.  You are my resting place, my hiding place, my refuge, my shield, my home.  Sigh.  This is good.  This is really good, thank you my Lord Jesus. With you I am truly home no matter where I am.  JJ

Psalm 142:5 (NIV)

I cry to you, Lord;
    I say, “You are my refuge,
    my portion in the land of the living.”

 

 

Flowers for Algernon?

Flowers for Algernon

Another temporary setback in my health tonight ended by a couple of drops of tea tree oil masking the noxious scent of perfume.  I don’t do perfume very well and am grateful for this suggestion of a friend familiar with essential oils.  Thank you Lord for Cindy and tea tree oil!

Sigh.  How am I supposed to be around people when the scent of any products they might wear with fragrances can trigger seizures?  I feel like a prisoner in my own home.  If I linger away from my cocoon then I am at risk.  And if a guest visits our home not wearing perfume but carrying a coat or wearing clothing scented from another day, BINGO.  I get sick.

I endured three major setbacks including last night and three other times this past week.  Setbacks that is, from significant improvements that came from taking high CBD hemp oil.  I was enjoying some sweet moments of near-normalcy!  At least the overall episodes are shorter.  I guess there is something else going on that is preventing the treatment from holding . . . .

Is it diet?  How can it be when consuming a strict Candida, mold-free, and low oxalate diet?  Could it be methylation or residual biotoxin illness issues?  Perhaps and I’ll be pursuing these at a new clinic next week.  Is neuro-Lyme the culprit after all and I need to get back into antibiotic therapy?  The Rife machine made me worse.  I’m not so sure about Lyme disease anymore as my genetic markers are more significant for mold illness than Lyme disease.  Still:  who knows?

In the 1966 novel Flowers for Algernon, Daniel Keyes portrays a mentally disabled man who gains intelligence after being selected for an experimental brain surgery.  The surgery was shown to be successful in a laboratory rat whose intelligence increases 3x after the procedure.  Charlie, the main character, undergoes the procedure himself as the story follows him from his menial janitorial position to falling in love with one of the teachers at the school in which he works.  Charlie quits his job about the time that the rat begins to decline.  The improvements did not last.  Charlie buries his little friend in a cheese box in the backyard near the close of the story.

I worked on the set of the stage play of Flowers for Algernon at my high school.  The sorrow of the scene pictured above when played out even by a wiry teenager was very emotional for all of us backstage.  I will never forget it.  For me it represented finding hope then moving forward in life with new skills and possibilities.  My life was already very painful at age 15.  The story touched my heart as we brought it to life for our peers and parents.  My tears had no where to go as I stood in the dark backstage, waiting to bring out props for the next scene.  When I got home the lockdown continued in the chaotic and unsafe environment of my childhood.  My sorrow was locked away for many years.  After much healing and decades of living, the Lord brought back this particular story to mind recently with the frustration of the illness that I am enduring:  I came upon a reason to have hope from seizures only to have that hope dashed against the wall.  Again.  It feels like death.

Sadness fills my eyes.  Of course I want to be well.  Every time I grasp for air, stabilize my neck for fear of my head breaking off, emit some guttural utterance from the forceful involuntary movements of every appendage in rotation or unison from a seizure attack I become very aware that I could die from them.  I stare blankly into space or hold my eyes closed to keep the room from moving.  Keeping my eyes open brings dizziness and nausea; keeping my eyes closed brings increased fear and a lost sense of time.  While still awake I sometimes can talk.  The words are strained and speaking (like trying to move) runs the risk of exacerbating the attacks further.  If the episode goes on too long then neurological collapse follows.  I either have to lie motionless until function returns or my beloved Steve transfers me out of bed and carries me to the bathroom or bed.  This more severe level of seizure occurs late at night when he needs to be getting ready for bed to be able to work the next morning.  It’s my private hell.  It’s his private hell.  It’s the private hell on earth that is our burden to endure at this time.  (See my non-epileptic seizure video for more information.)

To see a loved one losing the battle over illness, over injury is one of life’s greatest sorrows.  Even for a Christian, experiencing it yourself will challenge everything you know about grace, endurance, meaning, and more.  Flowers for Algernon is a fictional tale about a rat and a man who found answers but those answers did not last.  The story touches a cord deep within me.  Oh to taste the goodness of life and have it taken away!  I have searched for goodness for a long time.  One of the great opportunities of this life is to seize the sweetness that abounds, hold it lightly as it shines for a time, then let it go gracefully when we must either move on or the script of our lives writes it off the page.  It must be the Lord’s plan but why?  Such answers often never come.  Moving on can be the reward for grieving well.  Then there’s the fruit of living with loss that is ongoing:  when the disappointment never really goes away.  This is when you really know who you are.  This is when you really know Whose you are.  It can be the time when you are truly ALIVE.

I am a child of the King held in the shadow of His wings, His loving arms just like I quoted yesterday in Psalm 139.  This night I bring forth an invitation for my Lord to:

23 Search me, God, and know my heart; test me and know my anxious thoughts. 24 See if there is any offensive way in me, and lead me in the way everlasting.

13 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.

My Lord sees me!  Even so, this illness is one of my greatest mysteries from all of the events that have transpired in my life.  In the past my Lord has graced me with seeing some good come from the evil, some divine plans that have emerged from the chaos through which the deepest desires of my heart have come true.  I will hold onto His words that:

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.

At every turn, with each moment of sorrow I no longer ask:

Where can I go from your Spirit?
Where can I flee from your presence?
If I go up to the heavens, you are there;
if I make my bed in the depths, you are there.

Indeed you have led me through it all.  I can trust from Psalm 142 that:

When my spirit grows faint within me,
it is you who watch over my way.

And as it reads in Psalm 100 we will all:

Know that the Lord is God.   It is he who made us, and we are his; we are his people, the sheep of his pasture.

We will:

Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the Lord is good and his love endures forever; his faithfulness continues through all generations.

Rest will come for you, Gentle Reader and me too as we read in Psalm 121 that: 

The Lord watches over you—the Lord is your shade at your right hand; the sun will not harm you by day, nor the moon by night.

The Lord will keep you from all harm—he will watch over your life; the Lord will watch over your coming and going both now and forevermore.

With that I bid you good night.  I’ll be fine.  Join me in trusting the Lord that you will be too, eh?