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 Proper Blend

Like a fine wine that melds flavors as it seasons in an oak barrel over time

Everything I do is a mixture of good and the other from meals to enduring “it” all.

My beloved likes his hot sauce, his cheesy toppings and bold flavors along the way

Mine’s gotta be subdued, seasoned with salt from the sea and little else but with ghee.

In the area of health my River Bear gets on the water even on a late wintry day

Where I rejoice if I can wander outside with the pup or try the more mundane of little things inside.

Steve puts up with so much:  dashed plans, travels alone, a romantic night turned into caregiving

Wifey-poo’s illness cancels plans, sours the embrace, changes everything we once held dear, I sigh.

There is no proper blend when dark symptoms fend off many moments of goodness again and again

We just Cape Diem my love, for we know not how long we have anyways as we pray and pray and pray.

Tis a lesson learned to live in the moment, capturing each breath expanded with gentle care

For we never know what may come before the movie credits roll . . . beyond the edge of what we once held so near.

Will deliverance come tomorrow or much later than that with this new thingy again to try?

Like the windows that saw the sun shine on them today, I will wait expectantly on my Lord with my Gentle Hero at my side.

Vampire Diaries 2

hebrews, Hebrews 13:5, abandonment, promises of God, alone, loneliness, scripture, depression, sorrow, loss, illness, sickness, hope

Tears going up and down a lot this day

On the roller coaster of emotion I find myself on:

Help cometh x2 but test results won’t satisfy

As here I sit with my neck aching all through my brain.

I tried.  I really tried to figure it out and failed.

The symptoms that remain still taunt my peace

Leaving scars, leaving woes, leaving loss behind the hope

And yet my breath prevails so in and out I will also go today

To match the pull of the vampire’s teeth left in my chest wall.

The infusions continue instead of a long-desired break

The bank will love us less, the medical folk perhaps more

Whilst someone’s Mercedes payment will be made

And my saga continues on Big Box Store hamburger.

Hope always seems just one more day out there somewheres

Leaving me here beat up from this morning’s episode of torment

A snuggle with my husband got transformed into caregiving

And more hours were lost in the aftermath once again.

At least my dog seems to understand as she nudges her nose at the leash.  “Can’t we go now?” her soft brown eyes contend.

Relief might come in the mail soon

Or maybe not; it’s hard to tell

So I’ll keep calling on my Jesus for now

His calling card never leaves and never fails any of us anyways. JJ