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

woman with dog, German shepherd, travelling, pet, Nissan Frontier, trip, jump seat

Being married to me

Must be tough being married to me

A kiss can turn into a nightmare, intimacy much worse

When the beast of illness rears its ugly head

And convulsive episodes ensue and last and last . . .

You never really know when

Some sweetness will turn to black

Your affections will turn to caretaking

Yielding another failed remedy instead of a back rub . . .

No partner by your side

Others asking about the phantom wife

Does she really exist out there somewhere

Or is it just on paper and within her cage of the home?

She cooks alright and keeps the house afloat

But complains every time you call

Of this dire affliction or that when he’s at work

Helpless, other-directed, and burdened under the strain . . .

Months turned into years

As life tried to move on so we

Try to celebrate this or that, have a nice meal

Only to have her collapse at the kitchen table again . . .

He has gotten stronger

From carrying her burdened frame

To the toilet, the bed, the couch, off the floor

Rolling her over in bed, lifting her up to drink . . .

He has had to adjust to this abnormalcy of life

Never mentioning it unless another asks

For the pain of the story isn’t worth the awkward moment

A thousand times told, untold a bit later . . .

Tis the Lord’s will

The believer in Christ must contend

Yet are we not commanded to fight

For good, for answers, for more faith when tears flow?

Altogether lovely

He remains strong

Goes to work and play

To cope with the madness . . .

She waits at home

What choice does she have?

Her calling different from his

Or is it when bound by love?

There is no right way

To navigate a life gone off the rails

Except to breathe daily in prayer

When being married to me.  JJ

The Boomerang Effect

The wooden angle sitting on the mantle was a souvenir/gift from the Land Down Under.

To toss it into the air and have it return in-flight to you is a skill few master.  We didn’t!

Instead we dust if off because it looks nice:  forming a paradox in design and practice with which I can relate tonight.

Here’s why.

boomerang, wooden, life, metaphor, like, things come back, return to you

A trip to our local hospital began after much preparation and somewhat tense spirit too.

Would the appointments go alright such that I could return home and rest before a party this evening?

I brought with me several “rescue remedies,” food, water, favorite medical supplies, etc.

Having my port flushed last month went reasonably well so this one today should too.

Not.

I’d been battling Small Intestinal Bacterial Overgrowth when some labs indicated liver stuff too.  My Doc was willing to order a test over the phone and both would be today.

The liver/gall bladder/pancreas ultrasound could irritate a tender tummy for awhile.

Worse came a “tic attack” with the realization that there are several tender spots.

Gratefully, recovery came quickly and I was off to the outpatient clinic for the flush.

The nurse completed everything slowly as I’d requested; my preparation was flawless too.

Can you ice your chest wall while having an ultrasound, apply numbing cream before leaving home, and finish your breakfast/morning supplements in the waiting room between appointments running only 8 minutes late too?  Sure you can!

But 8 minutes past the hour was too late.  With everything that went wrong, the process would take OVER SIX HOURS!

The nurses there are saints as they let me sit in that treatment chair forever if needed.

Something about that 1 1/2 inch needle plunging into my port never has bode well with me.  Or was it a slight change in tissue gradient from fluids and a blood thinner going in?

The procedure was completed and I thought I was going to be o.k.  Then I started shaking.

The shaking continued for over THREE HOURS!  Several convulsive spikes joined the mess.

Gratefully my beloved Stevers was able to leave work early, go home, and bring me an emergency dose of steroid medication at the hospital.  He was my hero once again.

Within 15 minutes, the episode stopped.  I lain in that recliner chair in shock for a long while.  I wept some too.

We moved to the lobby where I devoured my last bit o’ snack and began to revive.

Once home, I rallied to help Steve get out the door to the party with gifts, dish-to-pass, yada, yada, yada hoping to join him later.  Another FIVE HOURS LATER, I did.

Last year I was too sick to attend a gathering with these friends from out of town.  My beloved sent me a video back then of the kids opening their gifts.  Bittersweet.

This year I got to see most of the kids for a few minutes and all of the adults.  Twas sweet.

Another victory was being able to visit in a home with a history of mold damage.  Huge!

The First Defense Nasal Screens (See Julie’s Favorites), open windows on a cool Spring evening, and progress in reduced reactivity all appeared to help.  Thank you Lord.

My plan was to stay in the moment, just enjoying the light banter and updates from all.

No matter that no one asked me much about things.  I love them in Christ just the same.

So I live a Boomerang life, moving from wretchedness to sweetness often within hours.

I could brood the day long or keep my pretty tops sitting in a closet like that dusted toy.

Instead if my Lord grants the where-with-all to get back into life, moving ahead, slightly forward,

I will trust in His strength.  I will do it.  I will get there.  And like the boomerang thing, the trip back will cancel the trip out that maybe wasn’t so good.

For we will face trials in this life, those of us who believe in Christ Jesus. The real question remains:

Will we stay on the shelf when the flippin’ craziness is done?  Nope.  Not me.

I will get out and try to have some fun!

We Will be Fine

The plot thickens, my angst flares

Why more nasties when hope came near?

I thought we had it, the Doc and I

But my body freaked out putting me in arrears.

Three infections at once

With more at bay for now

Is much to address

Each in it’s own particular way.

Many calls at night

Hubby running here and there

He is so tired as I

Writhing on the sectional in despair.

Call it die-off

Whatever you may

Take this binder and that

With another remedy in the fray.

I have no idea

If I will ever catch up

The beasts within me win

Or do they?  It is not yet clear.

My eyes are burning

My tummy aching with nausea

The pain is less, hoo-rah!

Unbelievable at a time like this.

So what will I do

To get through another day?

Cancel everything again

Sit tight and hold on as we go this way.

Rougher than most healing

The prize won’t be for wimps,

We elite patients stand strong

In the arms of our Lord holding us up.

Keep your eye on the prize

Solve the problems that arise

One day all will be gone

For in heaven we will be fine!

Rev 21:4, Revelation, no more tears, no more weeping, little girl, hope, trials, scripture, coping, help, suffering

 

The Life of a Kayaking Widow

No, he didn’t die.  He just goes away for large swaths of time as soon as the forsythias start their yellow bloom season up north here until the crimson leaves begin to fall into the local waterways.  Then he “comes back to life” again when I need him to keep me warm when the snow flies, that’s all.  Such is the life of a kayaking widow!

For those of you who have taken a break from reading your cereal box and picked up your beloved’s issue of Canoe News* instead, this one’s for you!  You may or may not be a paddler and that is o.k.  If you are not a RACER, however, and HE IS then you are invited to join me in this paper support group!  We are not alone!  (He does eventually come home to sleep and eat, right?)  I mean, I understand girlfriend.

So we must stick together, you and me, and figure out alternatives to dreamy picnics in the park with our men.  It probably won’t happen.  Our guys are either out fulfilling the requirements of their United States Canoe Association (USCA) membership or too tired and sore from the workout the day before to take a walk on the local Prairie Path on a Sunday afternoon.   “Would you massage my back?” is more likely heard than, “the moonlight sure is lovely reflected in your hair tonight.”  But I digress.  Just focus on the other scenic benefits of being married to an athlete if ya know what I mean?  J

And try these tips to get past the USCA Nationals in August at least!

  • Go shopping.  Spend wisely and no more than the amount he has invested in paddling gear.
  • Try a recreational race if you can paddle some; offer to take pictures of the event or help out if you prefer not.  Kids can come too if desired.  He will love you for taking an interest in his sport.
  • Leave a note of encouragement in plain view for your man to find as he makes his way out the door on race day before the rooster crows.  Add food.  Lots of food.
  • Plan regular events of your own either alone or with like-minded “widows.”  There a lot of us out there, left behind from various endeavors requiring testosterone.  Pick ones that require lots of estrogen to enjoy.
  • Eat chocolate and don’t share with anyone.
  • Look busy when he comes home yet be sure to greet him from upwind.

Surely there are a virtual bevvy of strategies for us land-lovers as I am only getting started here.  Actually I was a fan of boating under power when I met my River Bear.  What happened?  Who knows but her name might be “Stella(r)” or something like that!  I would love to hear from you ladies (and possibly widowers?) with your best tips on making the most of the paddling season.

Until then, gardening anyone?  JJ

*Published in the Summer 2017 issue of Canoe News

Fort Wayne, canoe, wife, husband, paddling, high knee, marriage, partners

This wifey-poo gets it right at an Indiana race on the St. Joe River in 2012!