Sunday, October 12, 2014

The loss of a good woman

On the evening of September 1st Janine passed away at home in my arms. Her breathing was labored and her limbs were cold, and I told her everyone here would be okay and that she could go. Fifteen minutes later she was gone.

The months of July and August were hard and her loving family gathered as the disease denied her body proper nourishment. Janine was always a planner, though, and we worked through a bucket list of things to do and places to see. Our attempts to give her dignity in passing by obtaining an end-of-life medication through the medical community were rebuffed by doctors who were more concerned about their malpractice riders than aiding a terminal patient. This forced us into pursing the VSED (voluntary stopping of eating and drinking) route, and this was a lingering process of eight days with increasing pain and wasting away of muscle and cognition. The pain was exacerbated by the hospice care protocol of stopping all of Janine's medications under the mistaken impression that what remained built up in her system would see her through. This assumption was a grave error and a decision made by a non-MS doctor. If you are a terminal patient please question this protocol because it will make your last days nearly intolerable for you and those around you.

Janine spent years planning her last days to ease the burden for those of us who remain. I am a writer, and three years ago I wrote a short story which I subconsciously based on how our life was changed by this illness. What follows is really her story. Bless all of you for keeping the faith with her though all these years, because you meant so very much to her. I will be closing this blog at the end of the year.


Caretaker, Caregiver
John O’Guinn

The doldrums of life held time for him to love the old house. In its day the home commanded the neighborhood; the clean lines brought to mind a picture of a boat running before the wind on the lake, in late afternoon, when the sun falls sleeping beneath the gentle hills. The eaves stretched forth like spinnakers to embrace an essence that was life and everything vital to the home’s definition in the world, and tatters stood out where unknowing moments had tested its endurance with brutal touches.
From his spot on the veranda he dug his thumbnail beneath the peeling paint on the rail and worried between the cracks until flakes spun away to land on a realtor’s sign and among the questing irises that bordered the lawn. The front door was open to cool and tranquil chambers and he had closed the dulled aluminum screen when he came out. Now an insect buzzed against the interior mesh. Delicate wings fanned out more quickly than a blink as it climbed the screen and probed the barrier for release into the limitless expanse of cloud and sky. He watched the small form meander along a flat land until he heard a cough escape from the house then he abandoned the porch and went inside.
His wife was awake in the emptied room and he pulled a table chair across the wood floor then reversed it and sat between her bed and a looming bag of medical supplies and clothing. In the empty space of the living room he was reminded of the walking times when he accompanied her into cavernous women’s stores. With impatience he waited in the husband’s chair outside of the changing rooms while the women drifted away with their small victories, and he felt buried between the racks of dresses as her rattles of fashion skittered from behind the door. 
Before today he had danced with her in this room of wainscoting and light when the hollowness was supplanted by their dreams and the trappings of family that came and left like a breeze upon the water. Children had lived flashing moments within the house to make touches on doorframes and walls and embrace a world expanding like a paper fortune teller, and in his mind each nick and scratch was a word of unbridled joy. Their son and daughter were all grown up now and lived thousands of miles away, pursuing the heart of fortune with friends who struggled to find meaning and definition under the keenly-felt disappointments.
Her husband reached over the bedspread then laced his callused fingers with her pale hand until the palm was covered like a scrap of burlap laid across a cameo. She dropped her crossword puzzle into her lap and looked past him to the street. “The movers are late.”
He curled his fingers a little as a gentle embrace. “Maybe they missed the turn. They’ll be here.”
She sat up quickly and became a fluttering bird. “Get me to my chair. We can have them take this damned bed too.” Her hands fumbled with the bed covers then the bed lowered as she pressed the buttons on the control.
“They may not have room –“ he began then halted to sidestep the old argument. The bed had cost a lot, even with government aid. Its rails and motor were her safe horizons and a bulwark against an illness whose slow trickle made so many things beyond her control. Better beds were on the market with massage features and air pads but she was adamant that this was her bed, not a patient’s bed. He always lost to the comfort of familiarity.
When the bed stopped its descent he went to the back of the house to her wheelchair then turned the machine on and waited. When the chair was ready he stood at its side and operated the control stick as escort, guiding the cumbersome vessel in a zigzag fashion to stagger past empty rooms that were vessels to the days won and milestones encountered by a family. The dancing left with the children, and the couple’s life contracted into a tight ball of unfinished sentences and desperate routines as the dreams fell away from their life like old paint. The days beside the lake transitioned from the anchor of a single cane to a lurching world of double canes and a scaffold-like walker to a sturdy power chair that could never know the intimacy of the two-step, and as he returned to the living room with the device its wheels ground ponderous in widened doorways of personal space. He heard the weight of the machine’s passing spread across the floorboards as a wake of groaning sounds on wood, and a tired fanfare to complete a poised room.
With the chair parked parallel to the mattress he lifted her across to the seat where she settled onto its custom molding. Her hair was disheveled from the pillow and his hand smoothed the long strands flat at the crown. With an abrupt motion she rolled backward and turned away to cross the floor and gaze outside at the scarlet roses on her trellis. On the day they bought the house she had planted the bush and nailed a trellis to the siding, and over the years the plant had embraced the latticework and climbed wavering above the eaves. Now some rose petals were dotted with black spots as wide as a penny, and her mouth formed a thin line at the intrusion on beauty. “We need to take care of that. Probably a virus on the leaves.” She blinked then grabbed her lower lip with anxious teeth and let go. “Somebody should fix it, anyway.”
He came behind her and draped his hands on thin shoulders as the sun lit the porch then was held hostage by scattered clouds before it broke free again in a whirl of light and shadow. His fingers kneaded the skin beneath his hands then he stepped between his wife and the window to get her attention. “Come with me.”
Her free hand was cradled in his palm as he led her past the bed and into a dining room pristine and unblemished from lack of use. “What am I supposed to see here?”
His cell phone glowed with its promise of immediacy and he squinted at the icons then punched his thick fingers against the glass surface. “Ssshhh, almost ready.” The phone fit snugly in a corner and he led her from the doorway until she rested before him in the center of the floor. He towered before her, self-satisfied and hushed, and waited.
Her face wrinkled in a familiar impatience. “Well?” Music scurried like a mouse from the corner. The melody scrabbled up the walls and rebounded from the ceiling and trembled the baseboards as he took her left hand and placed his palm over her right and the bulky controller. He shuffled his feet across the wood and coaxed her to follow forward and back and side to side as the controller clicked and clacked and the chair swiveled to mimic his steps. He held her arm high and stepped sideways while the machine rolled beneath the arch formed by their union to dance a disabled minuet. His footsteps brought him in close and he circled her in a tiny orbit then increased the speed of her chair and skittered backward while holding her hand.
His body shifted left and right while his toes moved just inches from the wheels, and when the song ended he stole gulps of the room’s rarified air until another song played. His legs were shaking but he danced on in a rhythm awkward and sincere, and in the moment he sometimes misjudged the distances so that Bam! her chair caught the wall in a pale gouge or a Screech! sang out distant and tinny as the frame left its mark on the plaster. At these intrusions he pulled her back to himself and the center; despite the exertion he felt lighthearted, so he ignored the aching in his legs and staggered forward only to be knocked down by a sweeping turn of her design.
He rolled onto his back and laughed while tears ran off and matted the gray at his temples. The boards creaked beneath the chair and he turned towards the sound and saw a wheel stop inches from his head. “Are you okay?” she said.    
He nodded and rolled onto his knees. “Are you?”
She smiled a little and rolled back to let him up. “I hit the walls a bit.”
His knee was sore and he put his hands on his thighs to stand up. “To hell with the walls.”
She bit her lip. “I don’t know, the realtor’s not going to like it.”
“To hell with the realtor, too. Stinking commission hound.” He saw that she still held her lip in a delicate capture as though it might leave her control, and he chose words of reassurance. “Those things are an easy fix, and I’ll get my own repairman if that’s what it takes.” His thumb rubbed against a mark and it came away bloodless. “See? Just a little plaster and some paint and no one will know.”
The moment was lost in an ad for car insurance and he retrieved the phone and struggled to turn it off as his wife drifted away and returned to a familiar place. He followed the receding creak of old boards into the living room and saw her paused before a man at the screen door. 
In four strides he stood protective at the entrance. “Can I help you?”
The man swung the door open and leaned into its frame. “Did you order a medical transport?”
He nodded. “I think we’re all ready here.”
His wife seemed nervous and he rested his hand on her shoulder. “It’s alright, honey. He’s driving you to our new apartment.”
“Are you coming with us?” she said.
“I’ll be right behind you in the van. I just have to lock up.”
“I want you to ride with us.”
“I can’t dear, because I have to drive.” He rubbed her neck and she pressed her cheek into his hand. “Don’t worry.”
The driver shifted on his feet. “Is that her bag?”
His hand gripped the twin handles and he slid the bag to the driver. “Here you go. Is there anything to sign?”
The driver stared at his wife, weighing her illness in a gawking appraisal of loss, and shook his head. “We can settle up when we get there.”
He moved from behind the chair and saw the strain beneath her eyes had found a home in the hollows of her face. “We’ll be there soon. It isn’t far.” To reassure her he stepped onto the porch and waited as she left the empty house and rolled outside and down the ramp to the sidewalk. His keys were a tangle of worn metal and he examined each key on the ring then double-locked the front door while the driver followed a few feet behind his wife to an imposing transport van in the driveway. The man put her bag in the front seat and lowered the lift, then he fastened her seatbelt and secured the chair with wide straps that hooked to the outer frame of the platform. The driver worked the controls and her husband turned away as the lift rose and retracted into a shadowed maw.  
He heard the grinding buzz of another insect trapped in the false refuge beneath the mesh, then he pushed the door closed before walking with measured steps and beyond the snow-flaked irises until he stood beside the trellis. The roses grew thick at his shoulder and he examined the blooms for a flower unmarred by blight or age. On uncertain feet he stretched to grasp a blossom so tall and lovely above his head then severed the stem to free its beauty from the vine. Down at the lake the wind danced along the tops of the waves and prodded the surface to rise up on the shoreline and he held the rose at his side and paused, enjoying the whispering presence upon the body of water.

Sunday, July 27, 2014

Now that I am Dying

My friends, over the past 16 months my body, mind, and soul have put up a valiant fight against MS. My soul is strong but my body and mind are failing.
Now that sounded pretty and noble, but it is all I can take of that. To put it in my own voice: I can't eat solid food-when I do I puke-so now we cadge together a gross mix of clarified butter ladened broth (bless those church ladies) and diluted fruit beverages. The official diagnosis? Who, in the MS Alice-down-the-rabbit-hole world, expects that. My GI has ruled out all common disorders so that leaves little left but MS caused neurogenic stomach, where the small muscles of the stomach and the micro nerves that control them are affected by MS-but he won't diagnose that because no definitive test exists. About 21 days ago, this syndrome traveled further up my digestive track and settled somewhere in my stomach sphincter or just below the esophagus. Now I live with the vomiting and the weight loss and the pain. Oh, did I forget to mention the pain? Whoever called this symptom an MS Hug was sadistic. I have a band about 12 inches wide around my mid section from breast to belly that grinds and twists with unrelenting fervor. And a spike of nerve pain that hits right below my breast bone with chillingly irregular regularity. Also a visceral nausea that makes drinking anything other than water a battle of mind over matter. Akin to mild car sickness all the time, that can tip to severe at any trigger.
Pain is so familiar now, I no longer remember me without it. 

  • my arms from biceps to fingertip are strangled, day and night, by a burning constricting pain that worsens as I use them. I have charlie horses and tendon pulls that curl my arms and hands into terrible shapes. Typing this will cost me heavily for the next several hours.
  • the right side of my skull leading to my eye...the track of the occipital nerve serves as a channel for a burning hot pain that finds its center in stabbing pain in my eye. Light and busyness can trigger this pain or make it worse. This pain at some level is with me, always.
  • my legs are riddled with areas that cramp up, curl into rigid shapes, and have stabbing electrical pains.
  • the joints of my ankles and toes, from years of being out of position from weakness, and now from spasming and twisting, have chronic bone, ligament, and tendon pain.
Too many others to list. But chronic plain is such a pale tea to describe the stagnant bile I sip every day.
And yet, somehow, my soul flourishes. As I come to the last weeks of my life during my 49th year, instead of anger or rage or drips of acidic futility I look with joy at photos of my boy and the years of his life he spent with me. I hold my husband's hand and our voices meld remembering so much from the past 27 years. We lived deliberately. When we learned 11 yrs ago and then it was confirmed several years later by a second neurologist, that the lifespan for my type of MS is 10 to 15 years. We didn't fold up our tent, and quit living. I worked at a beloved career for many years well past the 'norm.' Five years ago, we took our son to Hawaii, a vacation we couldn't afford to miss. To this day, as my days are winding down, I choose to have as full a life as I can.
My world is super glued together by a 30 plus year faith in God that sweetens all the darkest places.
I will write as much as I am able in the coming weeks. Hopefully, my old blog-world friends haven't left me.
I will share the plan for what is next in a future post.