|A Client Story|
The following story is a positive example of one client's cognitive
rehabilitation activity for his continuing education internet course.
D. - A Christmas Tale!
The warmth he felt inside was more then just the heat emitting from the roaring fireplace! He surveyed the room, noting the happy faces of the children and the contentment of the adults. His gaze enveloped his wife Susan, who was watching the children at play, a look of happiness intermingled with sadness etched upon her face. Andy’s thoughts drifted towards the unrealized expectation’s of their own, still childless after five years of marriage. Andy’s focus then shifted to the long drive back to the city, a ‘journey’ he would be making alone.
His eye-lids felt like they were being held down with fifty pound weights! In the recesses of his consciousness he heard what sounded like the off-cord chirping of a sick bird. Slowly, with what seemed like the most strength he had ever mustered, Andy opened his eyes. Bright-yellow illuminations pierced leaden eye-lids. Andy attempted to scan the foreign environment, but his retinas would not respond. An over-whelming stench of chemical cleaning fluid, assailed his nostril’s and the sick bird materialized into a brightly colored monitor.(1)
Snow blanketed his front windshield as Andy’s eye’s strained to see the road in front of him. The car skidded left, then right as he struggled to maintain control on the icy surface. Andy fought back the panic, but fear had become his constant companion as the storm intensified. Memories of the enjoyable ‘Christmas feast’ quickly forgotten as the reality of his current situation became more readily apparent.
Andy’s eyes slowly adjusted to his surroundings. A blank-wall appeared directly in front of him and to his left, he heard a constant beeping sound. He became aware of machines all around him, giving off flickering lights and gentle sounds. With horrifying clarity, Andy realized that he was lying in a bed in a hospital room! Tubes and wires seemed to sprout from every portion of his supine body, connected to every apparatus assembled in the room. His first cognizant thought was that he had become a hybrid human organic technological monstrous plant.
The storm had begun forty-five minuets into the drive back to the city. Gently falling snowflakes had quickly transformed themselves into solid waves of unrelenting white-sleet. The howling wind seemed to rip right through his car as its force slammed against the windows. Andy momentarily took his eyes from the road to check the defrost ‘setting’(2) and failed to notice the large bright lights descending upon him. The jarring momentum of the impact propelled him head-first into his windshield! In that split second, Andy’s life was indelibly changed forever.
As awareness dawned on Andy, he realized that something ‘terrible’ had happened to him. The muffled, beeping sound that had dimly permeated his consciousness was in fact emitting from the numerous machines, surrounding his bed. The tubes and wires that initially made him think of tree limbs, were also connected to the same machines. Andy’s thoughts drifted to the incident that had brought him to this place. To his horror, he could remember nothing of the circumstances, that had led to his accident, if indeed it had been a accident at all. Andy suddenly realized that a machine was helping him breath! As Andy’s stress level escalated, he heard the ventilator(3) increase it’s pace. Andy turned his head and was immediately presented with a monitor displaying a cyclical arc. The period of the ‘arc’ shortened as his stress level increased. Andy had a sudden insight, “Technology” was keeping him alive.
Andy’s attention was suddenly diverted by someone gently tapping him on the shoulder. A Middle aged women, with red hair and auburn eyes, appeared to be speaking to him, but with growing shock, Andy could not understand what was being said. Andy then attempted to push himself into a sitting position, but his body would not respond, and he suddenly realized that he could not feel anything below his waist. Andy opened his mouth to speak, but no words came out.
The last year had passed for Andy quite quickly, despite the fact that he had not ‘left’ the hospital. He had remained in a prone position for the first three months as his body and mind began to heal. Andy’s accident had nearly ended his life! He had suffered paralysis from the waist down and would never walk again. Andy was unable to use either hand with any efficiency due to permanent ‘flexion’ of his fingers as a result of his ‘ Traumatic Brain Injury’(TBI), the CT scan(4), indicated he had received. Andy was now classified as being fully disabled with little hope of ever leaving an institutional environment. His ability to speak and understand others had increased slowly, as the swelling of his brain had diminished. However, he still suffered from seizures, incoherence, and short term memory loss.
Andy’s life now consisted of a daily regime to facilitate his recovery. Physiotherapy for one hour or until the pain forced him to stop. Speak Language Pathology to assist him with learning how to swallow and improve his communication skills, was a daily scheduled event. It was during one such session that Andy had first been introduced to a ‘technology’ entitled Dragondiction(5). Electronic Communication Devices(ECD) or Integrated Technology Services(ITS) utilize computers to assist people maximize their potential. Andy could still remember his therapist Janney, explaining this statement to him as she introduced the technology. A technology that was to have a profound and positive impact on his quality of life as he recovered from his accident. Saying life had changed dramatically for Andy following his accident would be an understatement. His wife Susan had attempted to remain strong, but as the reality of the predicament they now faced sunk in, she had broken into uncontrollable sobbing. Andy would never walk again and the children they had dreamed about would remain just that, a dream. He would be unable to feed himself, wash himself, cloth himself and would require constant support and supervision. The same doctor, Dr. Sloan, whom Andy remember from when he first awoke, informed them that Andy was ‘lucky’ to be alive. He faced at least eighteen moths of intensive rehabilitation and that returning to their home was highly unlikely. Career goals and family aspirations were for all intents and purposes, extinct. Andy watching his wife’s reaction to this news, realized that this would be another journey he would be making alone.
Andy’s initial experience with Dragondiction had presented him with varied challenges. The cordless system allowed him the freedom of mobility when integrated with his wheelchair. He was able to roam the corridors of his hospital ward and speak to people whom he recognized by sight, but had never spoken with. Andy felt exhilarated as he said hello to the staff gathered around the nursing station. However, he quickly noticed some inherent flaws with the system.
Hospitals are loud environments and Andy quickly learned that his voice recognition system was noise sensitive, which led to difficulties when the system was exposed to an especially noisy environment. Andy also noticed that he could hear himself when talking, almost like an echo. He also learned that if he had to take time to process a question or could not start a conversation his system would continually repeat his word list over and over again. Still, Andy felt real happiness for the first time since his accident.
Staff whom Andy now recognized, but were still strangers to him, washed him, fed him and provided for his daily needs. Privacy was a word that no longer held any meaning for him. Susan, Andy’s wife, had gradually withdrawn from his life and although she still visited, he felt that he had become an intrusion in her life. Friends whom Andy had known for years visited once or twice and were then never heard from again. Andy’s family managed to visit and maintain regular contact, but his new identity seemed to confuse and sadden them. His angry outbursts and inability to control his emotions seemed to widen the divide that already existed. Andy truly believed that his condition was improving, but he sensed that to those from his former life, he had already died.
‘Traumatic Brain Injury’(TBI) occurs along a continuum of severity from very mild concussions to catastrophic injuries, resulting in death or severe disability(6). Andy’s accident was diagnosed as catastrophic and severely impacted on his ability to effectively communicate, as well as presenting him with intrusive physical limitations. He was now confined to a wheelchair and his world consisted of the hospital and those who lives intersected with it. TBI unleashes a host of behavioral issues for those afflicted, as Andy quickly learned. Impulsive behavior, lack of anger control, short term memory loss, cognitive and physical fatigue, inhibition, loss of executive functioning were some of the issues that Andy now had to contend with. He attempted to remain positive and upbeat, but sometimes Andy felt that life had dealt him a ‘bad hand’. Andy was sitting in his therapist Janney’s office when he had his first introduction to the ‘Internet’(7).
Janney explained that the Internet was a new technology that allowed the user instant access to unlimited information. Andy dimly remembered having heard of this information highway prior to his accident, but could not recall any specifics. Janney continued to elaborate further on how the process worked, first one required a computer(8). The computer required would be different from the one that he used for his dragondiction and was called a desktop. Inside the computer was a hardware device referred to as a modem(9). Janney explained the difference to Andy between hardware, which comprised the different components that made the computer function and software, which were operating systems like his Dragondiction. Janney then went on to explain that the hospital connected to the Internet through a phone line that connected to the modem, but their was also rumors of a newer technology called high Speed Internet(10) that used cable fibre optics and processed information at a faster speed. Andy.s brain tried to comprehend the scope of what he had just heard, but it all seemed very confusing to him. Janney also informed Andy that the Internet would allow him to communicate with other people who also were connected. She then suggested that they schedule an upcoming a session in the Occupational Therapy computer room. Andy could not stop thinking about the Internet for the remainder of that day. A form of communication that would allow him to access and explore the world outside the hospital, all from a computer. Andy stopped thinking about the Internet to figure out his accident time span, his accident had occurred in 1993 and it was now almost 1996. Andy seemed to remember reading about the Internet, but his memory could not recall any specific data.
Technology was now available that allowed him to speak with others in person as well as across great distances, this is truly amazing Andy thought. He could hardly wait to experience the Internet and all that this entailed. Andy and Janney sat in front of the computer monitor in the large room that housed all the Occupational Therapy computers. The room comprised numerous individual work stations, some modified so that people in wheelchairs could also access the computer stations. Janney turned on the computer and then turned to Andy, telling him that if he had his own computer it could be voice activated through his Dragondiction and that this program would also serve as a keyboard function. Numbers and letters quickly disappeared from the screen as the computer activated. Eventually a small box appeared with the heading name and password inside. Janney typed in Andy’s name and then asked him for a password, Andy dwelled on this a moment and uttered the word ‘Christmas’. A solid screen appeared with the word Windows 95(11) in big bold letters and many small shapes with tiny letters underneath. Andy activated his word program and asked what all these shapes were? Janney explained that they were icons or software applications that connected to different programs such as, games, typing programs and the Internet. Janney then clicked on the icon with the word Sympatico(12) written underneath and once again the screen changed. Andy also thought he could hear a faint noise, similar to static, as he first accessed the Internet. Andy sat in front of the monitor, the only other light in the room was the dull flickering of the TV, unwatched. His twisted fingers wrapped around the Logitech cordless mouse(13). Andy scrolled from page to page, his eyes eating up the words written there, like a starving man at a food laden Christmas table. Bleary eyes starring at the unmoving images A dream or a portent of things to come.
Andy’s discharge from the hospital occurred three years and eight months after his accident. A long stay, but by no means out of the ordinary, on the critical care ward he had called home for so long. Tears flowed from his eyes as he said goodbye to the staff, that had become almost like his new family. Andy was moving from the hospital to a supported living environment, where he would be living with other head injured people, and have his own room. Andy was also very excited that he would now have his own computer and unlimited access to the Internet. Andy’s wife had filled divorce papers earlier that year, an event that Andy did not surprise him. He was unsure how he felt about Susan, but could understand that her need for a family including children, did not include him. Andy’s family had been unwilling or unable to care for him, thus his new living arrangements. He did not blame his family, they had their own lives to live. Against all odds Andy had also regained partial use of his fingers, an occurrence that allowed him easier access to his favorite pursuit, ‘Surfing The Net’. Andy’s new computer was a top of the line machine, featuring a new technology called Pentium(14).
Andy quickly settled into his new environment and the regime that went along with it. He would wake up at 7 A.M. and have breakfast in bed, and then be transferred to a gurney for a shower. Andy would then join the other residents for groups and meetings in the morning to talk about issues relating to their lives living with brain injuries. Andy articipated in these activities, but his mind was thinking ahead to his upcoming daily time on the computer. Andy continued to rely on his Dragondiction to communicate with breathing people as he now called them, but his true passion was sitting in front of his computer for hours and exploring the cyber-world. Andy had new friends on almost every continent on earth, except perhaps for Antarctica, where he figured technology was slow in coming to the Eskimos. Andy chuckled to himself as he thought of an igloo with a high speed Internet connection. Andy had began writing a chronicle of his life since his accident, but had yet to figure out a name for his story.
Andy’s life now had a consistent and meaningful structure that gave him unexpected happiness. He had created a web-site(15) that addressed the issue of “Traumatic Brain Injury” which had led to an unexpected purpose for him. He was amazed at the number of people who accessed his web-site and e-mailed(16) him to share their stories with him. Some were tragic with no happy endings, but others were uplifting and a tribute to the strength of the human spirit. Andy responded to all the correspondence he received, typing away with his twisted and gnarled fingers at a pace that was beyond slow. However, in Andy’s mind being able to type was a major accomplishment in itself and an activity in which he took great pride. He had also decided that he was going to host a weekly chat room(17) that allowed people to talk with others who had experienced a similar situation. Andy believed that his web-site and chat room, could and was, making a difference in peoples lives. Andy turned off the monitor with a voice command and wheeled away from his work station. He was getting ready to join his house mates for a trip to the local movie theater. Andy was excited to be going out yet again, a fairly regular occurrence for him these days.
Andy thought of the twist and turns that his life had taken since his accident. He wondered what his old life would have been like, a time that now seemed so long ago and in a different world. He thought about his current life and the satisfaction that he now derived from helping others through the use of his computer. Andy acknowledged to himself that the computer had improved his quality of life and allowed him to communicate with others, as someone without a disability, unless he told them. The computer was the great equalizer for Andy in his communicating with the real world and expanding his horizons. A phrase popped into Andy’s head as he wheeled out of his room, “A Christmas Tale”, finally a name for his story. Life could be worse Andy thought and he smiled to himself as he left his room.
Technology Foot Notes
1. Monitor, a personal computer monitor is the system’s primary output device. Monitors Come in two basic types: CRTs and flat panel displays. The performance rates of monitors are Measured by dot pitch, refresh rates and resolution. The size of a monitor is expressed as a diagonal measurement of the entire screen. Graphics cards control the images displayed on the monitor. Waters, pg. 88.
2. Car Defroster, run by a computer chip through The Body Control Module system of the engine.
3. BronchoscopyVentilator, The flexible fiberoptic bronchoscope consists of fiberoptic light Bundles for light transmission and auxiliary channels for passing instruments. The flexible video-chip bronchoscopy has a small number of glass fibers to deliver light distally, but the image is recorded directly by a video-chip at the distal end of the bronchoscopy. Busick.
4. CT Scan, X-ray machine that rotates around the head and passes thin beams of radiation through the body, while the detectors are arrayed to detect nonabsorbed X-rays on the opposite side. A computer then applies a athematical algorithm to create slices from multiple linear X-ray projections. Images of brain slices between 2 and 12 millimeters in thickness are generated, and a computer then reconstructs a three dimensional image representing structures within the plane. CT scan allows direct visualization of inter-cranial soft tissues, as well as bone entricles, cisterns and subarachnoid spaces, orbits sinuses, and vessels. It has become the preferred methods of investigation to diagnosis congenital abnormalities of the brain. Mateer, pg. 50.
5. Dragondiction, speech and language voice recognition system that is applicable for computers, Automobiles, telecommunications, embedded products, consumer good and the Internet. System uses computers, augmentative communication devices and adapted technology peripherals to maximize the potential of people with disabilities.
6. Direct quote from, COGNITIVE REHABILITATION, Sohlberg. M.M., Mateer C.A. pg. 33.
7. Internet, a massive worldwide network of millions of connected computers. The Internet is sometimes called a Network of Networks’ because its really made up of many smaller local networks, all connected through telephone lines and other telecommunication devices. Waters, pg. 196.
8. Computer, a computer is a set of hardware and software components that work together as a system to run programs and store data. all computers whatever their size, manipulate information by adding, comparing, and storing numbers or digits. Waters, pg. 4.
9. Modem, a communication device that your personal computer uses to connect to the Internet. Modems are needed to go “online”, to surf the World Wide Web, to send e-mail and download files from remote sights. Waters, pg. 112.
10. High Speed Internet, Internet connection that runs from network card as opposed to a phone line.
11. Windows 95, an operating system that runs programs on your computer. Windows 95 is Manufactured by Microsoft. Waters, pg. 158.
12. Sympatico, a Internet connection offered by Bell Canada as the service provider.
13. Logitech cordless mouse, The invention of the computer mouse was one of the single most important innovations in personal computers. Rolling your mouse around on a flat surface controls the movement of an onscreen pointer that is present in virtually any program you can name. Logitech is the company that manufactures a moose that does not require a cord to connect to your computer, but instead runs from a battery. Waters, pg. 104.
14. Pentium, Intel’s Pentium is the current standard for personal computer Microprocessors. A Microprocessor is where all the computing takes place in your personal computer. All other Components in your system turn their data over to the processor to be well processed. Waters, pg. 60.
15. Web-Site, a collection of web pages. A web page is a document displayed by your web browser. Waters, pg. 225.
16. E-Mail, short for electronic mail. E-mail is the exchange of written messages between computers over telephone lines. Waters, pg. 210.
17. Chatroom, in chatrooms users have real-time
conversations with real people. All you need To participate is an Internet
connection and a chat program. Waters, pg. 290.
1. Computer Gaming World Issue 137. December 1995. Ziff-Davis Publishing Co., New York, New York.
2. MacLachlan, James. Children Of Prometheus. Wall and Emerson. Toronto Ontario, 1988.
3. Net Guide, Volume 1. December 1994. CMP media, Manhasset New York.
4. Sohlberg, Mckay Moore & Mateer, Catherine A. Cognitive Rehabilitation. The Guilford Press. New York New York, 2001.
5. Waters, John K. The Everything Computer Book. Adams Media Corporation. Holbrook Mass, 2000.