Here is Chapter 16 of Dreaming Out Loud, the book about my mother’s stroke.
Each morning around 9:00 a.m., Shirley slips into mom’s apartment. On the days when she has not stopped at McDonald’s to buy pancakes and sausage, our new caregiver scrounges around for pots and pans tucked inside cabinets beneath the kitchen sink. On those fast-food-free mornings, Shirley fires up the oven and cooks a hearty breakfast of bacon, toast, and — mom’s favorite — microwavable Quaker cheese grits. If mom has not awakened during those movements around the kitchen, Shirley lurches into the bedroom and uses her booming voice to good effect.
“Okay, now, Miss Laura. It’s time to get up and get ready for your day.”
A bleary-eyed Miss Laura leans up from the covers, searching for her eyeglasses deposited on the night stand. “Get ready for your day.”
“We got us some bacon fryin’ up in the pan, Miss Laura. I know you like your bacon.”
“You like your bacon.”
Shirley cackles. “That’s right. I like my bacon, too. I’m gonna eat with you, now, darlin.’”
“I’m gonna eat with you, too.” She wags her finger toward the wheelchair parked next to the television set. “Darlin.’”
“I’m gettin’ it. I’m gettin’ it.” Shirley scurries over to the chair, unlocks the brake, and rolls it close to the bed. “You gotta give me time to get things movin,’ Miss Laura.”
Mom’s nostrils flare. “Get things movin,’ all right!”
“Now, don’t you get upset. We got us a good breakfast.”
Miss Laura struggles up from the bed and, with Shirley’s arm wrapped around her waist to lend support, climbs uncertainly to her feet. Next, she shuffles forward, turns, and aims her behind toward the chair. Shirley gently guides her ward toward the seat until, impatiently, mom jerks loose and collapses into the wheelchair. The movements constitute an ugly half-pirouette, horrifying to watch. It is a delicate maneuver performed by indelicate participants.
“Now, then, Miss Laura. I’ll roll you into the bafroom.”
Mom nods her head vigorously and, using her left leg, propels herself away from her caregiver. Invariably, she collides with the door jamb. Sometimes the reverberations shake the pictures on the wall.
“Watch out, Miss Laura.”
“You watch out, Miss Laura!”
“Okay. You the boss.”
Mom nods her head. Oh, yeah, I’m the boss all right! Using her good foot, she navigates past the bedroom, into the hallway, and through the bathroom door. Sometimes she closes the door; sometimes, she does not.
Shirley uses the respite to start the Mr. Coffee brewing French Vanilla beans. While the java percolates, she limps over to the refrigerator, removes a container, pours a glass of orange juice, and brings it to the table. She also rifles through mom’s chest of drawers searching for a bib to catch the inevitable spillage that occurs in the post-stroke world.
“You all right in there, Miss Laura?”
“Yes, I all right in there, Miss Laura.”
Most of the time, Miss Laura is all right in there. About once a week, however, an accident happens. Mom has misjudged the timing and fails to make it from the wheelchair to the three-in-one high chair/toilet seat. Perhaps her aim is off as she sits crooked on the toilet, which inevitably results in a scene that is best left to the imagination. Sometimes she has already used the bathroom in the night without realizing it, and the resultant mess must be cleaned. (She wears adult diapers to protect against some misfortunes.)
Unlike Karola, who complained incessantly about these admittedly unpleasant episodes, Shirley says not a disparaging word. When she realizes that something is amiss, she tries to soothe mom’s feelings of anger, frustration, and humiliation. Among her many acts of kindness toward my mother, perhaps her quiet reaction to toilet mishaps is the kindest.
“Uh-oh, Miss Laura. It looks like we done made a mess.”
“You done made a mess. I mean, you done made a mess. I mean....”
“Now, you just simmer down, Miss Laura. I’ll get you a wash cloth and some clean drawers and we gonna be a-okay.”
“Gonna be a-okay.”
Twenty minutes later, they sit down to their hardy breakfast.
Sometimes I walk downstairs and join them. On other days, I listen to their conversation through the floorboards. They are like a feuding couple tied together in a symbiotic relationship that appears antagonistic to someone outside looking in, but somehow it works for those people existing inside the relationship. The participants seem the better for it.
They have a typical exchange that begins when mom grows furious at Shirley. A fiercely proud, formerly independent woman, my mother resents this new, hovering, controlling presence in her life. When Shirley cooks, mom supervises. When Shirley cleans up, mom advises her on the appropriate method of vacuuming. When Shirley bathes her, mom explains how Shirley missed a spot among the many folds of flesh.
Despite the unrelenting scorn my mother heaps on her, Shirley remains undaunted. She responds with good cheer. “Now Miss Laura. You need to calm down or you gonna get another stroke.”
“You need to calm down. You not my boss.”
“Oh, you got that right, Miss Laura. Ain’t nobody your boss. I been knowin’ that for some time now.”
“You scootch to me.”
“What you sayin’ now, Miss Laura? I can’t understand you when you get like that.”
“I begin sayin’ what you been sayin.’”
“And what I been sayin’?”
“You been sayin’ what I been sayin.’”
“Oh, Miss Laura. You ain’t makin’ no sense.”
“I’ll sense your sense.”
“Don’t get yourself too upset now.”
“You not my boss. Scootch for you!”
"Be sweet, now."
"You be sweet, now! You be sweet, now!"
And on it goes.
Per our discharge instructions, I monitor mom’s progress each day. The right side of her body has been affected by the stroke while the left side is more or less normal. We must work to overcome these deficiencies during the next year of intensive therapy.
The best way to describe her right leg is to say it is droopy. Even with assistance from her walker, she must take care to focus on her gait as she steps with her right foot. When she puts weight on her weakened right leg she might collapse, folding downward like a roof collapsing on an imploding building. It is as though her Achilles tendon does not work. She lifts her right leg and the foot dangles loosely.
As badly impaired as her right leg is, her right arm is even worse. It has become a misshapen claw. Her hand reminds me of a G.I. Joe action figure I had as a child. I especially liked the one with the kung fu grip. Mom’s fingers are locked in that same kung fu stance. It was cool and desirable with my G.I. Joe, but with my mother, well, it drives a stake into my heart.
She may be home from the rehab center, but rehabilitation is still an integral part of her new life. A parade of therapists comes to our house. On some days, the physical therapist arrives to help mom stand and practice walking up and down the basement staircase. On alternate days, the occupational therapist works with her to extend her range of motion and learn to pick up items without assistance. As much as she detests these visits, though, it is the speech therapist that earns a special place in her pantheon of demons.
Ryan is a thin, wispy fellow. His effeminate mannerisms and high-pitched tone of voice peg him as a gay young man. He seems to be in his middle twenties, but with his prematurely gray, balding hair and fish-belly white coloring, it is difficult to tell. He reminds me of figure-skating champion Scott Hamilton. My mother is hardly homophobic, but she does not like Ryan, mostly because he does not let her get away with anything. In her second childhood, getting away with something is a favorite pastime.
His initial visit sets the stage for what is to come. “Now, Ms. Martinez, I am Ryan Mason, your speech therapist. I will be coming here twice a week for the next eight weeks. We are going to spend our time together practicing our word association and pronunciation skills. How does that sound?”
“That sounds scootch.” She rolls her eyes.
I have elected to sit in on their first session to see what happens. Also, Ryan has told me that he may assign homework for mom to complete between his visits. Her recovery will occur more rapidly if she practices her speaking as much as possible.
We sit at mom’s kitchen table. Ryan and I are seated in chairs and mom has rolled her wheelchair to the head of the table. Ryan turns to me. “It is fairly common to see this kind of word substitution in stroke patients. The ‘scootch’ pattern of speech becomes a gap-filler when the patient cannot think of the correct word. Gradually, as healing occurs in the brain, the instances of word substitution should decrease.”
“We’ve noticed that already.”
He nods. “The problem is that it is easy to fall back into old, familiar patterns. Patients become lazy and don’t want to take the trouble to search for the right word.”
“Yes. We’ve noticed that as well.”
Turning, he addresses mom. “Ms. Martinez, do you know what Mark Twain once said about the nearly right word?”
She frowns. “The nearly right word?”
“Yes. The nearly right word.” He speaks to both of us. “Mark Twain said the difference between the right word and the nearly right word is the difference between lightning and the lightning bug.”
Mom rolls her eyes. “Scootch is trite.”
Ryan and I laugh.
“Yes, I suppose that’s true. It may be trite.” He turns to me. “It’s encouraging to see she has a good bit of preserved cognitive function.”
“She has cognitive function galore. Expressing herself is the frustrating part.”
“Well, that’s why I’m here.”
Mom frowns. “That’s why I’m here?”
Ryan turns to my mom. “It’s good to see you know what’s going on around you, Ms. Martinez. Now, let’s see if we can work on improving your ability to communicate verbally with the world around you.”
He holds up a colorful flash card decorated with the drawing of a bird. “Do you know what this is?”
Ryan smiles. “I need a verbal response, please Ms. Martinez. If we are going to improve your verbal skills, we need to respond verbally. Do you know what this is?”
“Okay. Good. What is it?”
She points to me. “Scootch for me?”
Ryan taps the kitchen table. “Look at me, Ms. Martinez. Don’t look at your son.”
She looks at him. I recognize the initial signs of anger in her furrowed brow.
“Now, you need to answer. Your son can’t help you. This is a conversation between you and me. This is an exercise for the two of us. Okay? Fair enough?”
Ryan plows ahead. “Now, Ms. Martinez. Let’s do it again.” He holds up the flash card. “Can you tell me what this is?”
He smiles. “Okay. Good. Then tell me what it is.”
“It is a.” She pauses and starts to look at me.
“Ms. Martinez, please. Don’t look at your son. Look at me. Eyes here. Eyes here.”
She mock him. “Eyes here. Eyes here. Eyes here.”
Ryan gently places the flash card face down on the table. “Miss Martinez. This exercise doesn’t work if you don’t participate. You have to participate. It’s for your own good.” He retrieves the card and holds it up. “Again.”
“Now, Ms. Martinez, what is this?”
“It’s a turd!”
Ryan grins. “Close. It rhymes with that word.”
“You’re a turd.”
Ryan is still grinning. “Ms. Martinez, if I didn’t know better, I would think you were saying something unkind to me.”
“You should know better then!”
Like all of mom’s caregivers, Ryan is patient. He does not take offense at mom’s barbs, coming as they do, at least in part, because of her affliction. She is frustrated at the snail’s pace of her recovery. She is irked at the loss of independence. She is angry at the cruel hand of fate.
Welcome to the world of the recovering stroke patient.