Bionic Brain by Candy Devine
Trying to open her eyes was a real challenge for Chloé. Ever so slowly she scrunched her eyebrows and willed her pounding head to relent. She opened one eye, the left; the side where she took the hit seemed to move more freely than the right for some unknown reason.
She could hear movement in the house. The family was awake; the world was awakening as she lay there willing herself to come into it.
“Moooooommmmmmmm” came a sharp voice into her morning fog. “Someone shut off the dryer last night and my uniform is soaked.”
“I can help.” She thought. “I’m coming.” So she forced her other eye open. Now the room was hazy and slightly blurred as though she was looking through someone else’s glasses. Her son walked into the room distressed about his clothes, flipped on the light and shut it off quickly as she recoiled with a whimper and snatched the covers over her head, not yet ready to face the light that burned into her brain.
“I can help,” she repeated to herself. Her son Thomas gave her a tight hug through the covers in a quiet way mourning the mother who was once able to do so much for him. As he pulled away she thought, “I can help” though this time somehow less convincing as she sought to pull the blanket from her head and move her once athletic and unstoppable body to the side of the bed in an attempt to place what felt like rigor mortis more than feet on to the floor. Pain shot up her legs as though she was walking on a combination of sharp cacti and hot needles. She attempted to propel them forward. The doctors called this something like “neuropathy,” caused by one of the many medications they’d tried that just didn’t work for her. Over and over she heard how brain damage could cause sensitivity to medication. Chloé could handle the “sensitivity” part; but it was the words “brain” and “damage” that unsettled the woman who still defined herself as an international trade commissioner, a foreign service officer with many years still left to achieve, to produce. Surely she could recover. She was resilient. She still had so many smarts some days and people were always shocked to learn of her condition, people that didn’t live with or treat her that was. Still recovery must be available, she just had to keep trying to find it. If only her head didn’t ache so much thinking about it.
She called out to Thomas, “Don’t worry about the bus honey, I can give you a ride,” very happy that one of the things her brain injury had not taken was her ability to drive. That was at times her purpose: to move from one place to another place and simply be able to do so. The better days were those where she could help someone else in those small journeys from A to B. It gave her a sense of freedom, sense of self and a sense that all was not lost.
But today as she stood up the pounding temples resurged, the blurred vision made it hard to squeak through the hallway and she barely had the energy to walk to the dryer that had been moved upstairs near her room to better suit her “disability”.
She would get relatively lost in thought trying to do the laundry before and wander down the two flights of stairs only to forget why she was there or what she was doing. When she would manage to get the clothes done, the journey to the right room, the right drawer for the right item seemed to be an impossible voyage following the injury, so her husband Josh, a contractor by trade, “fixed” it, or at least tried to in the only way he knew how, with his hands. He just wanted to fix it all for her.
Chloé managed to turn the dryer on, staying on mission and alleviating her son’s concerns: “It’s okay I’ll drive you when they’re done.” Sure she had to stumble back to bed to lie down again to recharge the battery for the next small journey downstairs for breakfast but she already had this victory today.
Josh came up from making breakfast and upon entering the bedroom, and could see this was not a good day. They had fumbled the ball with the meeting at the hospital the day before. The social worker was sick so when they arrived, there was no meeting; and in addition, they had missed a message from the brain injury therapist saying she was heading to their home to meet Chloé. Changes like this now caused Chloé considerable anxiety and she joked that it turned her into the “Rain Man,” that autistic movie character who would scream and beat his heat if he missed “Judge Wapner”. But the important difference between Chloé and the “Rain Man” was that great portions of her brain activity were still fully intact; painfully observing the pieces that were not, leaving her feeling as separated from those bits as she was from the movie character.
Her old self was somewhat of an organizational whiz-kid that could juggle international trade agreements, events, clients, appointments and never miss a thing. She had a good reputation, was a go-getter and people still told her it would be “okay” when she came back to work because her reputation still held. So yesterday sitting at the rehab center overwhelmed her and bit at her spirit, as she realized all the effort that it had taken just to get out of bed, to get dressed, to eat, to drive, and even find the place where she was supposed to have her meeting. She and her husband had parted and Chloé impulsively decided to go to sit for a coffee to find grace for her caregivers and recharge for the journey home. Interrupted by a call from the receptionist letting her know the brain injury therapist was on her doorstep, Chloé panicked and berated herself as she fled to rush home, worried she had wasted one of the limited appointments she was allocated after waiting years to get help. She missed it, just a note remained fluttering on the screen door. December is cold, too cold for people to wait.
“Accept and adapt” the hospital says. God knows she was trying. What His plan in all this was evaded her however.
“I can drive Thomas to school, babe,” Josh offered.
Chloé wanted to protest but all that came out was a relatively slurred, “Thank you.”
Her husband came to the bedside, stroked her hair, “Can I get you anything?” Can I fix it?
“Water,” she managed to say through a tongue still caught up in sleep; nausea and upset crept in.
On the cluttered bedside table sat a once stylish athletic water bottle Chloé used to drag to daily sports and classes. Now it just sat upstairs. Josh tried to hand it to her. She snapped. “No no no no, not that … that one,” protested Chloé struggling to string the right words together as her gears got going. “Not THAT water bottle. It’s old and the top … I can’t suck on it. I can’t. I can’t move my lips today… I … lying down … water.” There may have been an expletive tucked in as well. Josh had learned how to filter those things out. The hospital had taught him that these were not his wife’s words. These wisps of her frustration which short-circuited into this altered world that few would understand.
He ached for his wife. On auto-pilot himself, he headed downstairs aiming to fix just the right bottle, filled with just the right water, at just the right temperature to not throw off his beloved. By the time he got back to the bedside, the pillow was back over her head. He placed the water beside her knowing that it may be sometime again before she thought of it or even remembered to drink. Nevermind. “Sleep will be good for her,” he thought, hesitating to lean in for a kiss and stopping just in case. With his wife in this state, it could overwhelm her senses. “Flooding,” the neuro-psychologist had called it but Josh had fixed it for now.
Chloé’s first alarm of the day rang; the first of many that would resound until the lights would go off later that night (taken care of automatically an app on her smart phone). Yes, there’s even an app for that.
7:45. “Max School” the alarm read.
This alarm usually helped Chloé ensure the eldest had caught his bus and helped her to get their youngest son out the door when Josh had to leave early, sometimes simply calling out to her son from her bed, coaxing, but this allowed her a role in the morning exodus. Max had 56 “lates” this term alone, but he was going to school and Chloé was there. “Mommy, can I tell you something good about your brain injury?” said Max one morning, lightening the load while she grimaced with pain on the way downstairs. “I have you here when I leave for school; and here when I come home.” A careerist, she had not appreciated the positive aspects of this life change until then. That phrase, said only once, was a beacon. Despite her rants, her behavioural issues, somehow her child was happy to have her around and so all would be well. “Everything will be alright in the end.” She visualized a motivational poster she had seen somewhere, “If it’s not all right, it’s not the end …”
Josh grabbed the keys and hustled Thomas out the door. Max came bounding down the stairs after them. He might actually make it to school on time for a change. Another victory, a small one, but she’d take it.
At last, the house was empty and silent. Chloé gathered up her personal fortitude once more. She guided her body again to the edge of the bed and gingerly found the floor with her feet, attempting to put weight on them and work through the burning aches. With every step she could feel her neck bracing as though her body were gripping it tightly, for fear something might strike again and this time take her already aching head with it. It would be so easy to remain curled up for the day. In the beginning she had done just that, but it only accelerated the memory loss and feelings of disconnectedness.
It’s important to live when living.
“Movement is medicine,” she repeated over and over, helping her to focus on something besides the pain which Chloé knew would dissipate once she got the gears grinding again. It was mantra of sorts that helped to propel her. On days when the words alone did not motivate, she imagined herself lying in bed with her brain turning to cement, with the electrical circuits and skeletal-muscular connections grinding to a halt as premature aging accelerated and ate her up. Chloé had heard somewhere that “Sometimes you have to get knocked down lower than you’ve ever been, to stand up taller than you than you ever were.” Today this helped her to straighten her spine, pull her shoulders back and brace herself against the punch that life had thrown her. Surely it was better to move, to circulate the blood, and, always a bit competitive, she thought, “Even if this is all I have in me today, I’m lapping the couch potatoes.” Clicheés became her friends, . The ones who stuck around, withheld judgment, and simply encouraged her on days like this.
Compelled by the “helpful” albeit annoying little alarms programmed into her phone, Chloé battled sloth, inertia and confusion, common companions that waged war on behalf of a brain injury.
8:00. “Calendars,” read the alarm.
While she often forgot, ignored or missed this one, ironically today she caught it while sitting down now, forgetting that “movement is medicine” after all the effort it took to get the proverbial train moving in the first place. She gazed across the day’s agenda. Not much. Or at least nothing that couldn’t be cancelled on a day like this. Best not to push the brain when it cried out for rest – a lesson repeatedly learned the hard way. Chloé puddled around on Twitter scanning for positive quotes, or news of a new cure, a fellow TBI survivor or anything else to keep negativity at bay.
“How could an hour have passed already?” She rubbed her neck that had been tilted down looking at the screen for too long.
9:00. “Eat!! Steel cut oats”
She had been taught that minimalism would be important now, like consistently having the same breakfast which promised success in getting it eaten. She found the pre-soaked, warmed container where Josh always left it for her. “You should be looking after him now that you’re home,” her ego screamed at her as it often did. Chloé increasingly learned how to silence that nagging inner voice that did so little to heal her. “I’m eating my breakfast, I’m eating my breakfast, I’m eating my breakfast,” she sang silently to herself drowning the ego in a warbling little tune that she learned at rehab to “mindfully” focus upon and actually get food in at regular intervals. Taking another bite, she picked up her phone that “beeped” a notification, a Facebook photo update from a local TBI survivor that Chloé had met in a rehab group, a survivor that before “the fall” had been a very renowned executive leader. “Ships don’t sink because of the water AROUND them; ships sink because of the water that gets IN them. Don’t let what’s happening around you get inside you and weigh you down,” read the photo. Another lone survivor clinging to clichées where work and friendships once resided. Chloé laughed at the absurdity of life.
9:20. “Get moving.”
This was Chloé’s reminder to go for a walk, the gym, a class, physiotherapy on some days, anything. What to wear, where to go, what to take? “Eat steel cut oats” worked because it was specific. She would have to synthesize this reminder better with her therapist but that would have to wait until Monday…or Friday or the Monday or Friday after that. She was a bit confused as to when they were meeting again.
Today she tried to “get moving”, but Chloé was distracted by so much clutter everywhere that kept piling up day after day, week after week, month after month, year after year post-accident. Most days, she would pick up a paper, and find where it went, only to end up leaving it somewhere else still not putting it away because she would get caught up with a clothing item and wander off to deal with that; only to lose track of that task too, and so on.
“Already lunch? But I just ate?”
12:30. Eat big!
Chloé grabbed a banana, and let another tune take hold “I’m doing the dishes, I’m doing the dishes.” As she moved crumbs from one part of the counter to the other, soon another alarm was ringing again.
1:30. “Get pretty.”
She had originally set this one to the tune of Right Said Fred’s silly song “I’m Too Sexy” song but sometimes she would be out, unable to find the phone in her purse screaming out, making her feel as silly as the song. Chloé switched it to “Fight Song” (by Rachel Platten) and because that seemed to better motivate and encourage her, even when the alarm went off at inopportune times.
“Oh yeah. Personal hygiene,” she thought. Smelling her pits and shrugging as she went back upstairs noticing her feet had relented and were allowing her movement again. This was good in case she would decide to have a shower. It would be less of a slip hazard.
“Get pretty,” is a very subjective thing. It used to mean after “the obvious,” then blowdry and style hair, apply make-up, put on matching lingerie under a pretty outfit and find just the right heels and accessories to make it all pop! Now, it meant “the obvious,” remembering to brush her teeth, apply deodorant, check for boogers or unsightly food on her face. It meant orthotic shoes and choosing clothes from her ever-expanding “minimalist wardrobe” with selections being based on ease of use and whether or not they still fit. Chloé took heart. Minimalism was the method of other successful leaders she had read about. Obama, for instance, only had grey and blue suits, arguing that it helped him minimize the number of decisions in a day to let him concentrate on the important items. So she sought to get “minimal,” making sure nothing was sticking out that shouldn’t. Chloé looked in the mirror. “Accept and adapt.” It looked pretty much like the same person looking back but something was not the same.
“No, I’ve still got a lotta fight left in me.”
“KNOW, I’ve still got a lotta fight left in me!”
The writer pushed the phone away now, herself motivated to move and “get pretty” for the day. Having dictated her story in third person into her little microphone on a device she teasingly refers to as her “bionic brain”; then having adjusted the words and phrases on the screen, it had taken everything out of her.
So she lay back down to rest, ignoring the next series of alarms, feeling peaceful now, less desperate about the situation. Maybe I can do this, maybe I could be a “writer,” a communicator. Maybe I could help others understand what it’s like to live within the invisible injury known as a brain trauma, make it hopeful, make it entertaining, make it real, make it liveable.
So what do you think, can I?