In the Blink of an Eye

By Catherine Borden

When my brain injury happened

My name is Cathy Borden. I am your average mother of two and have been happily married for the past 28 years. I am a 55-year-old woman whose life was shattered on Christmas Eve, 1998, ironically just a short time after I had begun to get a grip on my 23-year battle with agoraphobia.

It all happened on my way to work, or so they tell me. I have no memory of what occurred the year before the accident or what happened after the accident, until I woke up five days later in the ICU with a nurse yelling in my ear, “Wake up, Cathy, you’ve been in a terrible car accident.” I closed my eyes and wondered to myself why Peter, my husband was still awake watching television. There are flashes of memory of those two months in the ICU. Most of my memories of that time remain a blur.

What they DID tell me is that I skidded on a patch of ice, on the same street where I live, less than a mile away from home. According to what I’ve been told, I slid so badly I must have panicked and hit the accelerator pedal, pounding into a telephone pole at 60 mph. I broke the steering wheel with my face and sustained several injuries: A severe concussion (a TBI or Traumatic Brain Injury – closed head trauma to the brain with swelling and bleeding), almost lost my left eye, broke the tip of my nose from my face, shattered every bone in my face against the windshield, destroyed my sinuses on impact, broke my jaw in sixteen places, broke my palate (actually had what is known as a facial fold), lost almost all my upper teeth, broke my clavicle and punctured and collapsed both lungs. I was rushed to our nearby hospital, which fortunately happens to be a Level-One trauma hospital. I was brought in on what they call a Code 40 (a code used for an incoming trauma patient). In my case, I was unrecognizable, unresponsive and bleeding profusely.

When I arrived in the ER, the staff worked on me feverishly to ensure that I was stable. I had lost 2 pints of blood and they inserted an intracranial monitor because the pressure in my skull was erratic. I was given medication through the opening they drilled in my head. I underwent an 8 1/2 hour operation by 12 surgeons. They didn’t even bother to x-ray to check for internal bleeding. They merely cut me open. I had been intubated (placing a tube down a patient’s windpipe that brings oxygen to the lungs, often the first step in saving a person’s life) on my way to the hospital. Chest tube linings and feeding tubes were inserted. The problems arose when they wanted to insert the tracheotomy. They were certain I had crushed my esophagus, but actually what happened was the esophagus broke away from the bone on impact and an ENT (an ear, nose and throat doctor or an otolarynologist) had to be called in to ensure the anesthesiologist that he would cause no further damage by inserting the tracheotomy. Each surgeon informed my husband to expect the worst … the surgeons were certain I would die.

That morning at the hospital when my family learned I had a brain injury

My daughter Stephanie told me that morning had started like any other morning; my husband Peter had left for an appointment. My son Peter (or Petee as we call him) was home on winter break from college and was recovering from major surgery, which he had undergone one week before. He was in so much pain; I was reluctant to leave him. His shoulder had been separated and he was in a full shoulder and arm cast. Immobile and unable to care for himself, he was sleeping in a recliner.

Stephanie was also home, preparing for work; during that time two of my closest co-workers had called our home. Ironically, they were aware of the condition of the roads, and given that it was 9:20 a.m. and I hadn’t yet arrived at work, they were afraid something might have happened. Shortly after they made that call, the police arrived at my door. Stephanie accepted the news that I had been in an accident without a great amount of concern; I had always been the responsible one, so in her mind she felt it was a “fender-bender”. She kissed her brother good-bye, and headed off to pick me up at the hospital.

Upon her arrival at the hospital, Stephanie immediately realized that this was a very different situation than what she had envisioned. When she went to the front desk and told them she was there to pick me up, a social worker called her into his office to tell her that her Mom might not make it. Stephanie felt a surge of panic and immediately called her brother. At first, all she could relay was, “Find Daddy immediately.” She then told her brother the truth. Shortly thereafter, my brother, Albert, called the house to check on my son and to see if he needed anything (after all, it was Christmas Eve). That’s when my son told my brother about the accident. In disbelief, my brother headed for the hospital just to be sure. When my husband arrived at the hospital, he found Stephanie wandering aimlessly in the street. The shock was too much for Stephanie to comprehend.

I became the woman with no face

To everyone who knew me, I was unrecognizable. The ER personnel were not sure if I was a male or female, nor what my age was — only that I had a pair of black slacks on and camel colored winter coat. I was tagged as Nancy Doe because the EMS had not seen my purse in the car, but the police did. When my husband arrived, he couldn’t imagine what had happened. I had no face and did not respond…. I was comatose. He had been told I probably wouldn’t make it, but with all that was going on, he was probably in shock and unaware of what they were really telling him.

After I was taken to the OR, my husband returned home briefly to soothe our kids. His mind racing, he called his mother. Due to my father-in-law’s declining health, she was unable to be with her son, but she telephoned my sister-in-law Pattie who headed to the hospital to stay with my husband. I was brought into recovery at about 10:30 PM, after 8 1/2 hours of surgery. The surgeons came in and out of the “private OR” area to reassure my husband that I was still alive. The reconstructive surgeon, a very kind man, excused himself while he spoke to my husband saying he had to go “put Humpty-Dumpty back together.” Peter was so very concerned, not only for me, but also for our children. He went to the chapel to say a few prayers, with hopes that I would survive. In a nearby hallway, Peter ran into his father’s cardiac surgeon who asked Peter what he was doing at the hospital. When Peter told him, the cardiologist, perhaps not making the connection at first, said, “Oh, the woman with no face, she was in the OR next to mine. Very sad.”

Waking up from my coma

When I awoke from the coma, I felt so dazed I couldn’t comprehend what anyone said to me. The morphine helped to ease the pain in my body. All I could do was sleep. I was in the ICU for five days, and then transferred to another section of the ICU known as a “cluster” room; 4 patients and 4 ICU nurses … all patients in this area are critical. I had passed the 72-hour wait-and-see period. One week later, I underwent a 3-hour surgery to insert 3 more titanium plates in my jaw and to wire my jaw. I awoke after this surgery with a fever of 107 caused by a severe blood, lung and sinus infection. Again CT and Body Scans were performed. All pain medication was withdrawn. For some reason, I have a very vague memory of someone asking me to hold my breath as they removed the chest tube linings. I do remember how painful that was, but all obvious openings to the body had to be closed. With so many lacerations to my face, the trauma surgeon was sure that they had contributed to the fever.

No one ever told me about my altered appearance. Peter had brought in pictures of me to help the reconstructive surgeons with visual aids and to see what I looked like. So many nurses asked who that pretty woman was in the photo. Because I did not comprehend the full extent of my injuries, I was wondering if lack of make-up and this sticky hair made me unrecognizable. I realize now that the staff was trying to shield me from understanding the true extent of my altered appearance. The first time I was allowed to see my face was the evening before I was released. On that particular evening, I was taken to another room for my first physical therapy session. I was told to walk, with the help of a walker, about twenty feet towards a wall. I saw an extremely unattractive woman approaching me. I thought to myself, that I should smile and nod to her. To me this lady was grotesque. As I became closer to her, I realized it was not another woman; I was walking towards a mirrored wall.

My hospital stay had been extended because the trauma surgeon was waiting for the fever to drop. I was finally released as they were worried I would contract more infection. I was sent home on January 10, 1999, by ambulance. The trachea stoma had been removed, but the J-feeding tube and catheter were in place. I had with me several prescriptions and many doctors’ visits already scheduled. In a daze, my husband and I headed home “somewhere”; nothing felt familiar.

Coming home and livinig with the consequences of my brain injury

Once home, my activities were greatly restricted. My privileges included permission to use the commode in our bedroom and with a walker, walk once a day from the bedroom to the living room and back. I thought it would be a matter of healing and in a few weeks, and I would feel like myself again. Boy, was I wrong! In the ambulance, I had felt very strange. I can recall that my stay at the hospital was filled with delirium and confusion. Home now, I looked at the familiar streets in my town; I knew them well, traveled them frequently, but they still didn’t FEEL familiar. Neither did my house, my dog, and most of all, neither did my husband and children. I felt so detached and weak. This feeling of detachment is still with me.

My sister-in-law Pattie stayed with us for one month so that she and Peter could be my caregivers. They were not thrilled about having me home; in fact they were terrified. They had to feed pureed foods to me through a feeding tube, make my bed, bring me basins in which to wash, and help me dress for doctors’ appointments. I vaguely recall that my terror of the car was unbearable and all motion made me so dizzy. For the first six months, I had to sit in the back seat of the car. I was too terrified of the front. I lived as in a dream walking state.

After my sister-in-law left and my son returned to school, I had to turn to my husband for my sole support. In mid February I began to experience crying spells. I found myself in an uncontrollable situation; I would cry for weeks nonstop. I also awoke several times at night with palpitations and tremors. I don’t know what I dreamt; I remembered nothing of the accident. It was then that I learned, through my doctors, of post-traumatic stress disorder or PTSD. Therapy has helped, but I continue to have nightmares and difficulty sleeping to this day, over five years later.

Recovery after brain injury is is slow…physically and emotionally

Since the accident, recovery has been an uphill battle. I have many deficits, both physical and emotional. I have worked very hard to overcome them. I went for physical therapy twice a week because of balance problems and to build my endurance. I am trained to look left and right, up and down, quickly, then close my eyes and stand on one foot. This is to induce vertigo, to teach me how to deal with this unwanted sensation. When the vertigo starts, I am told to focus on something large and stationary. Sound like fun? Well, it is when you are no longer afraid of being dizzy. I hated PT at first, but I must say it does work. In my home, I am able to walk without my cane. After one year, I was dismissed because no progress was being made. I never spent time in a rehabilitation hospital because of the massive infections. Speech therapy was prescribed by my neurologist at Kessler Institute, on an outpatient basis. To this day my speech remains impaired, in part because of the brain injury and because of the physical damage done to my mouth and jaw.

Learning about brain injury…and how to live with it

Although my family members knew of the brain injury, I was unaware. For almost ten months I thought I had daily headaches and chronic dizziness from being in bed for a very long time. The past seldom entered my thoughts, so memory deficits were unbeknownst to me. Speech problems, I thought, were due to the jaw injuries only; the word “aphasia” (impaired ability to communicate through words or speech). As for intelligence, I’d lacked confidence most of my life. Inability to concentrate while watching a movie or television was a mystery. Since I did very little, focusing, sticking to task and comprehending instructions seldom were an issue. After having my first neuro-psychology test, I learnt of these so-called “deficits”. Yet I still did not realize I had a brain injury. Only after a courtesy visit from the Brain Injury Association did I know that I had been affected by this traumatic brain injury.

I had my third surgery on 7/20/99 to reconstruct my nose. Reconstructive surgery is an ongoing process to repair a face that looked like Silly Putty thrown against a brick wall. I have had numerous surgeries on my face and jaw. I have undergone three oral surgeries. Bone grafting has been done by a procedure known as an “Alveolar Distraction Osteogenesis”, performed by my highly skilled oral surgeon. In all, I have had a total of 10 dental implants and permanent crowns. The surgeries have been bothersome, yet somehow I’ve survived. I’ve asked the reconstructive surgeon how he thinks I will look after all these surgeries and he said he’s never had a patient who had sustained such extensive facial trauma and survived. Well, I can tell you that really made me real special. I want more than survival; I want my life back.

I have worked very hard to try to be the person I once was. With the surgeries and rehabilitation for short-term memory loss and other deficits behind me, I recovered over one-half of what I have lost. I still have balance problems, permanent loss of my peripheral vision, speech and chewing issues, as well as problems with comprehension, coordination and organization. I lived in the kitchen before my accident. Mentally I have not forgotten what needs to be done to prepare a special meal; the first two years after I could not seem to get it all together. I would love the depression and anxiety to end without the need to take antidepressants. I would also like my feelings to be more grounded. It would be so nice to connect with my surroundings.

Nowhere feels comfortable; at times I feel like my skin doesn’t fit. In the past, one of my favorite things to do was to go to the mall with my daughter. For the first three years after my accident, shopping was unbearable because of the lighting and the crowds. It was as though there were 100 conversations going on at once — sensory overload, I’ve been told; a phenomena suffered by most traumatic brain injury survivors. Slowly I ventured out, and most of those feelings have dissipated. I would like to be able to eat out at restaurants during normal dining times, not at 4 PM when no one is there. And most of all, I hope I can go back to where I was with conquering my agoraphobia. I had worked so hard to regain my independence and drive alone within 15 miles of my home. I don’t know if I’ll ever drive again, but if I do, I assure you it won’t be after a snowfall. Permanent loss of my peripheral vision has made driving again impossible.

Hanging on to Hope…

In April 25, 2003, I underwent my 13th surgery, which was supposed to be my final facial reconstructive surgery. Unfortunately, it was a complete failure. I looked almost like the “same old me” for about 48 hours, then swelling, infection and rejection turned my world upside down again. Yet, I have not given up hope. Since that time, I have been searching for a reconstructive surgeon, who is proficient in repairing and rebreaking already broken bones. With prayer and luck, I hope the day will come when I will be able to look in the mirror, and recognize the woman staring back at me. I have learned to be thankful for what I have. Somehow I have become a stronger and accepting person. Most of all, I have realized that my accident didn’t just happen to me, it happened to everyone in my entire family. I have to thank my wonderful husband, my two devoted children and my loving sister-in-law Pattie for all the tender and unquestionable care they have given me.

I would also like to thank Brian Moore, the Webmaster of TBI Chat; a wonderful man who also experienced a traumatic brain injury and created a chat room for persons with TBIs and their caregivers and families. I am so grateful to all the friends I have made with the members of TBI Chat. Without their acceptance and understanding, I do not think I could have gone through the past 5 years. This chat room can be found at the web site www.tbichat.org. It was through this site, that I discovered I wasn’t the only person who experienced a severe brain injury. I would also like to thank The Brain Injury Association.

Copyright by Catherine Borden. Please do not copy without permission from the author.

A Perspective on Mild Brain Injury Recovery from Seven Years Out

By Anne Forrest

I don’t look like I have a brain injury

If you saw me, you might say to yourself that I don’t look like I have an injury. So you probably would not know I have a brain injury unless I told you so. Despite appearances, my brain injury has changed my life completely. I have not been able to work in my previous career – or even at McDonalds. After 7 years of a lot of hard work in rehab, and home exercises and life style changes, I am able to volunteer about 12 hours a week.

For many years, I had difficulty performing minimum requirements of daily living. Simple activities like dressing and feeding myself were very complex. The energy that it took for my brain to do these tasks was so great that seemingly minor activities could wear me out. Now, on an average day, I can accomplish advanced requirements of daily living with rest in between tasks and compensation strategies.

Although I am clearly getting better, my disability is there in every aspect of my life. I cannot drive, but ride the bus or get rides. I am accustomed to listening to the radio and books on tape, since absorbing what I read is not yet a strength. Simple mathematics are getting easier with re-memorization and practice. I do not remember things and can still “hide my own Easter eggs” as my husband says. In other words, many things I have done are still a surprise to me later.

Getting better

Recently, I have seen some dramatic improvements in my memory and am able to think ahead to remember things that I used to have to use my cognitive strategies book to do. So something is really changing. I once faced tremendous limitations with getting overstimulated in normal environments like stores and public places. Now I can tolerate these environments in limited doses.

I could not watch a movie for the first two years. Now I can watch most mainstream films and recently went to Spiderman II with my husband. I had to close my eyes while he swung, but I enjoyed the movie. I could not use the computer for about the first three years, but now I can use basic functions. My exercise was limited to walking until about year five, but now I do some aerobics and practice with the soccer ball in addition to 2 mile walks.

My life before my accident: Where I came from brain-wise

Prior to my injury, I functioned at a high level. I am a Yale graduate and have a PhD in economics. I worked as a senior research economist at a nonprofit institute in Washington, DC. I loved to drive. I played competitive volleyball and coached youth soccer. I sailed. I was very computer literate. I had an active social life.

In my old job, writing and speaking about my research was a routine part of my day. Since the accident, I have had to relearn how to write—how to organize my thoughts in a cohesive way, how to develop topic sentences, and how to outline. I have required tremendous amounts of coaching and organizational help from my therapist and others. It has taken lots of trial and error, lots of revisions, and lots of persistence on my part. With each time I write or speak, it is easier – but this process still takes much more patience, time and effort than before the accident.

The process of recovering from a brain injury is the hardest thing I have ever done — tougher, by light years, than any other undertaking. It has been a “24 – 7″ job which hasn’t allowed me time or energy to do much else. I expected to spend my late 30s/early 40s advancing in my career and raising a family. Instead, I am trying to get back to the levels of skills I had attained in elementary school, high school and college. I am trying to get my endurance back to tolerate all the mental activity required in a normal day.

What happened to my brain?

My injury occurred when an SUV hit me from behind while I was trying to merge onto the parkway near the Lincoln Memorial in DC. The impact caused my head to swing from side to side and forward to back. My brain hit against the sides of my skull like an egg yolk against the shell. Neurons in all areas of my brain were either stretched or broken. The old pathways my brain used to think and function were no longer connected. As a result, I was left with visual problems, balance problems, and a range of cognitive deficits affecting my short term memory, attention and concentration.

I was not taken to the emergency room by ambulance after the accident. While shaken, I appeared fine. The next night, I woke up with tell-tale signs of head injury – nausea, a really really bad headache, and chills. My colleagues at work advised me to see a doctor. When my symptoms worsened, my doctor sent me to a neurologist who diagnosed it as a traumatic brain injury. More precisely, I have a “mild” traumatic brain injury. My symptoms have been anything but mild.

I have had to learn how to be a different person. Who we are as human beings has a lot to do with how our brain functions. We are our brains. After the accident, my brain was different. I could not do most of the things that I enjoyed and/or those which gave me my sense of identity and self-esteem. So I have had to do a lot of growing to find a new me.

My very difficult path to finding appropriate rehabilitation

Living with such a debilitating injury is difficult enough. It was more difficult because there was no certain path, no roadmap, to recovery as one might expect with an injured arm or leg. I have had to find my own treatment and be my own advocate. The irony of this injury has been that the very organ I needed most to help me get the treatment I needed was my brain, the part of me that was injured.

I was lucky in that I was correctly diagnosed by my neurologist. However, as is typical for many, the diagnosis did not directly lead to appropriate treatment. My neurologist was hopeful that I would recover in the first six months, since 50% of persons with my injury recover in that period, supposedly. The instructions I received with my diagnosis were to try to get my life back.

Looking back, I can see that I was exhausting myself trying to return to work and my normal life. My brain thought I was the old me, and I did not know I could not succeed at my old life with my now-injured brain. I was told that what brain functioning I did not get back in two years, I would never get back. This was like a death sentence. I wanted my brain back.

For years, I cycled between barely staying afloat and devastatingly downward spiraling cycles. Looking back, I can see the pattern. I would get over-tired doing normal things and then wouldn’t be able to sleep because my brain was too wired to sleep. Then I would be more fatigued and experience worse memory, concentration, and thinking problems because of the sleep deprivation. I would eventually be too exhausted to get out of bed, which would lead to extreme boredom and/or depression. Then I would eventually get back on my feet for a while – until some unforeseen disruption in my schedule would set off this cycle again. It wasn’t much of a life.

Help and no help from brain injury professionals

After two years, I got to a well-known neuropsychologist in New York City who specialized in mild brain injury. He told me I needed to find someone who could teach me about my deficits and teach me better compensation strategies. It took almost another year to find the therapy he suggested because my deficits made it difficult for me to follow through. The system did not seem to be designed for someone with my deficits to get the help I needed.

When I found it, speech and language therapy helped me understand my deficits and develop awareness. I learned new compensation strategies, and learned how to pull out of the downward cycles before I went into a nosedive. I was 4 years out, and it was finally the beginning of my slow but consistently upward trend towards recovery.

During those first three years, I had to face a myriad of financial and disability insurance problems. This took significant time and energy away from finding treatment and getting well. It added tremendous confusion, stress, worry and pain. I went through my entire savings and hit rock bottom financially twice before things stabilized.

What it felt like to be me with a brain injury

Let me tell you what it feels like from the inside to be me. I talk about my relationship to my brain (post-accident) as that of a pilot looking at the gas gauge, oil lights and warning lights in a plane. Pre-accident, I did not have to read these gauges. My brain did it automatically. I had my breakfast, went to work, sat down at the computer and worked. I got in the car and drove.

Post accident, my life is being constantly aware of my brain functioning and knowing that I am very dependant on figuring out what is going on with all these gauges for my very survival. I am also aware that I get very different feedback from my senses than what I previously did. For example, the oil lights are constantly flashing “warning” and many of the other levels of the gauges don’t “look” or “feel” right. This is sort of a permanent state. When I go out to do my daily life, the signals in some of the gauges change. I may be aware that something is different or wrong but not know which of these functioning or mal-functioning signals can help diagnose what is actually wrong.

How I learned to cope

For me, I have learned not to rely as much on information from my eyes, because it is often wrong. I have to pay more attention to touch and smell because they are correct. Hearing is better than sight for comprehending a news report, but not trouble free.

Part of my recovery is learning not to be concerned if I get dizzy, because it will not create too many problems as long as I am not walking in a busy intersection. It is figuring out what situations to avoid, what not to avoid, and what is safe.

Three years later: A second round of helpful therapies at the rehabilitation hospital
When we moved back to DC, my doctors did another neuropsych test and I got 5 more months of Occupational Therapy and Speech and Language Therapy. During this time, I made tremendous progress on cognitive skills, advanced living skills, and endurance. I was also able to pass a driving screening test. My head to foot reaction time is now “within the normal range.”

Two years ago, it was in the bottom 10th percentile of drivers, and hence too slow to drive. Passing this test is measurable evidence that I am continuing to make progress, even after seven years. My progress was also so palpable that my friends and family could see it, and I was getting constant positive feedback, which makes the struggle to recover much easier and rewarding.

Rehabilitation (even for “mild” injury) has helped my functioning and quality of life

Having recovered as much as I have, I can tell you that the rewards are worth the struggle. My life is much easier as I have learned to tolerate and cope around my symptoms. It has been very painful to live in a world I hardly understood, could not express myself well in, and where I had to work so hard to get basic needs met.

Although I still cannot do much of what I used to be able to do, I know that with practice, I will get more back and I have hope for the future. I also have new interests and my life is meaningful. I have recovered the feeling of what my old athletic self used to be like. This feels great.

Recovering from brain injury is not an experience that I feel I could go through and not be profoundly changed by. I hope that I can use my experience to help improve the system and remove some of the obstacles to recovery for others.

Recommended reading:

The Mild Traumatic Brain Injury Workbook

Workbook for adults, veterans and families on mild traumatic brain injury and concussion symptoms with strategies and exercises for improving attention, memory and executive functions.
 

By Kimberly Carnevale

There’s a lot of “stuff.” 

We as humans, have a thing about “stuff”. Think about everything that you have…in your car, your basement, attic, storage facility, office, bedroom closet; how much of this “stuff” do you really need? Be honest. If you are like many people, most of your stuff is collected and hung onto with the small possibility that it may be needed someday.

Why do we do this to ourselves, when inevitably, it only complicates our lives? We end up getting bigger boxes, build bigger closets, rent a bigger storage space, or even move into a bigger house to accommodate all this “stuff.”

I think our stuff is sort of like a security blanket that we hold onto to get through life. “Stuff” in many ways signifies the past. We hold onto it with the belief that if we hold onto that stuff, we can live forever in the comfort of the past, never branching out to new horizons, which would bring about the uncomfortable winds of change.

I think if we are brave enough to confront our challenges without the security of what we’ve always known and open ourselves to the possibilities of the embracing the unknown, we would find great opportunities which often are well hidden with, yup, you guessed it – stuff.

Facing a new and uncertain life

I’m a single Mom to a wonderful daughter and a traumatic brain injury survivor. Prior to my accident, I was living my little girl dream, competing professionally in the prestigious sport of equestrian show jumping. I had my sights set on the United States Equestrian team until the accident ended my dream, and life, as I’d known it.

I was scared—terrified in fact, of the new and uncertain life that loomed in front of me, and I mourned for the loss of my old life. I wasn’t ready to let go of my dreams, or face the daunting challenges that traumatic brain injury subjected me to. There was still so much to do, so many goals to chase and dreams to achieve; but I learned the hard way, that even the best dreams are not immune to disaster, and I was forced to revamp my goals and dreams in order to fit my new circumstances.

Shortly after my accident, I was partnered with a service dog who made my life more independent and provided the fortitude I needed to move forward in my life. Together, we created what has become an award winning, service dog education program that also gave me a new and much-needed career. Canine and Abled, Inc. became my new dream, and educating and motivating others became my new life’s passion.

Losing everything frees me

In October of 2006, my daughter, service dogs and myself lost our home in a tragic chain of events. Losing my home and the majority of my possessions was, at first, a very traumatic experience. But once I got past the shock and feelings of loss, I got to a very unexpected place—clarity. Being stripped bare of all my “stuff”, all those things that I once found to be important, I gained a certain clarity in my life. I laugh at what I once thought I needed, knowing that those possessions were mere trappings of a cluttered existence.

I sustained my traumatic brain injury in 1998. I learned very quickly that clutter is a brain-injured person’s worst enemy! It clogs up what limited focus you have, overwhelms you with the inability to see past it, and distracts you from your goals.

When I lost all the extra clothes that I knew I’d never wear, but hung onto anyway, thinking there would come a day where I might wear them, I felt a sense of lightening. I had boxes of stuff stored from the house I lived in before my accident, sure that I would have use for it “someday.” I still don’t know what was in those boxes! Knick knacks that once cluttered my shelves, begging for dusting and rotation for the seasons no longer had power over me. All at once, I was free!

Knowing that I could not only make do, but do very well without all that extra “stuff” gave me a sense of empowerment. I started seeing possibilities that the blinders of my trappings had blocked out before. I didn’t have to work so hard to take stock in my surroundings; cause there was less “stuff” to process. I realized that living clutter-free in a literal sense cleared up the feelings of being overwhelmed and distracted.

Clearing my mind

I got to think that if only I could clear up my mind as my circumstances had cleared up my physical trappings, that I’d find great possibilities there. I was right, and by applying the stripping bare strategies to my thinking mind, I was able to create new and exciting opportunities for myself using this new perspective…. opportunities that I never would have found without stepping out of the comfort and security of what I’d always known.

What we view as important and necessary throughout our lives becomes so insignificant when we are stripped bare. While I don’t recommend sustaining a brain injury, becoming homeless, or literally getting rid of all your stuff, I do recommend that you make a conscious effort to get rid of all the clutter in your mind. Eradicate the false beliefs that try to convince you that you have to do things a certain way, that there are only certain paths available to achieve success, or any other limiting thoughts that dissuade you from moving forward towards attaining your goals.

After my accident I had to relearn a whole new way of doing things. My “new” brain did not process automatically, and I was forced to retrain myself to work in a manual mode. Was it hard? You bet it was! There were days I wanted to hide in bed to avoid the grueling rehabilitation that I knew awaited for me. But I also knew that I had to learn new ways to overcome my new challenges and fight for a new future, and so I endured.

Keeping life clutter free

Living with a traumatic brain injury is different – difficult sometimes, but more different than anything. I don’t have running movies in my head of memories or thought processes the way I once did; I have no conception of time, and often have difficulty processing my environment. Cognitive difficulties often cause me to become completely overwhelmed, resulting in paralyzing anxiety. It is imperative that I try to maintain a clutter-free environment to cut down on the amount of “stuff” my brain must process.

Memories are fleeting, and therefore more precious than ever. Where I once automatically retrieved time-related memories with ease, I now have to think about those memories in a different way to manually retrieve them. I have to ask myself questions such as, “Was I wearing long sleeves, or short sleeves? Were the leaves green or turning colors? What did the air smell like?” I depend on the rest of my senses to fill in the blanks where my injured brain leaves off.

Simplifying my environment, and memorizing differently was for me, seeking out a new path that led me to my own personal success. When the way I used to do things didn’t work for my injured brain, I had to readjust and head down a different path to get me to the same destination. Sometimes that path was longer, and sometimes there were some obstacles to overcome on this new path; but I found that by doing things differently, I was blessed with challenges that enabled me to see things I’d never noticed before. Using my other senses heightened my awareness. This new awareness brought new thought processes, and these thought processes brought me to discovering new methodology that I was able to successfully apply to all challenges that confronted me.

Clear your path

Whether you are a brain injury survivor, caretaker, or friend of a TBI patient, I challenge you to clear your own path! Make your own way! Create new and innovative roads to success using alternative thinking. Strip bare what you think you know and look for new possibilities born out of a different methodology.

For some, road blocks exist in others telling them, “There is only one way to do things”, or that “So and so didn’t do it like that, so you can’t either”, or my personal favorite when asking someone why something is done a particular way, “Well, that’s just the way it’s always been done; you have to do it that way.” Baloney! I’m here to tell you that if I listened to all that garbage, I never would have made it to the level of competition that I did when I was a professional equestrian, and there would be no Canine and Abled, Inc. either. (I was told that a person with disabilities with no prior experience could not build such a program!)

Challenge yourself to throw out all the old preconceived notions that clutter your mind; strip it bare. Don’t be afraid to follow your instincts and have faith in your own abilities, regardless of what others say. You are in the driver’s seat of your life…don’t ever let anyone else reach over to take the wheel! Forget what you know and try to use that insight to see viable opportunities that exist, but can’t be seen but for the clutter.

Build a new vision

When we use this new vision to pick up things that flew below the radar in the past, we can effectively combat stress, enhance productiveness, and produce new and innovative solutions to whatever life, or the business world throws out way. This new perception leaves us open to explore the road to success, secure in the knowledge that we have the ability to pave our own way, and steer clear of inevitable hazards that will come to pass. We are then able to remain calm throughout the storms in our lives, maintaining focus on confronting challenges head-on and learning from them in order to embrace the journey that we have primed for triumph!

I wish you well on your journey. Let life strip you bare. Keep focused on the prize, but don’t be so rigid that you miss an opportunity to take the long way once in a while.

–Kimberly Carnevale
Copyright 2007 by Sarah Lynn Communications, L.L.C

About the Author

Kimberly Carnevale is the founder of Canine and Abled, Inc., and is an accomplished writer and motivational speaker. Her thought-provoking messages inspire the corporate world, politics and day-to-day living. She is available for nationwide bookings.

The Canine and Abled, Inc. program is an award-winning program founded by Kimberly in 1999. The program is dedicated to promoting awareness and acceptance of service dog teams everywhere as a means to battle the widespread problem of illegal access denial.

Access denial stems from lack of education and sensitivity training in places of business. Many teams face embarrassing, degrading, and illegal access barriers on a daily basis. Canine and Abled, Inc. is committed to ending illegal access denial and opening doors for service dog teams everywhere…one door at a time. www.canineandabled.com

The Walking Wounded after Concussion

By Rula Mufti

A scar would help

I sometimes wish I had a scar.  One that hugged the right side of my face, pink and ghoulish, screaming out that something tragic had happened to me.  It would serve as an emblem of pain so that others could hesitate when looking at me, might possibly feel for what I had been through.

Since my fall in April 2004 when the back of my head was introduced to the edge of a marble-like table, nothing has been the same.  The iron rail that faltered under the weight of my hand came crashing behind me adding to my injury. Carrying the burden of this pain in silence, I’ve come to realize that empathy is the least characteristic a traumatic brain injury (TBI) victim is given.

Others don’t see me

Dubbed as an “invisible” injury it is hard for medical doctors – let alone friends and family – to understand the severe side effects of a mild concussion.  The term “mild” is a fallacy that has robbed me of the right to heal adequately because I was unaware of the frightening decay of my brain that would come.  That, combined with constant denial and cruel comments like, “everyone falls” when I explained the accident, made it agonizing to accept rehabilitation. The signs of decline did not show themselves immediately other than forceful headaches.  It was days, then weeks and months later, when fatigue and muddled words became my new persona.

Finally diagnosed

Once diagnosed with “post concussion syndrome” by my primary physician, the fatigue, imploding headaches, bouts of confusion and flashes of irritation made more sense.  The first few months, I was suspicious of inevitable insanity.  I was able to taste the horror of what Alzheimer’s must feel like when leaving crowded malls left me unable to trace my car, let alone know my whereabouts. Sometimes in hysteria, I would look for a friendly face to guide me to safety and tell me where I was. Help me retrieve my car.

Words that once flew effortlessly became steel knots tied into the crevices of my brain. Faces I’d once known intimately became distorted. Coordination was impaired – lopsided and uneven. Somewhere a fuse inside the machine of life had been disconnected.

A lonely journey

The journey to recovery for brain injury victims can be a lonely one. Most of us do not mirror the expectation that others have of a person that is impaired – limping, babbling, drooling – thus we are left without proper supervision and guidance. Family members, helpless and suspicious of the extreme changes of behavior, are not sure what to make of the lack of focus, the short-term memory loss and the personality changes. There are colorful bursts of unexplainable anger, resentment and withdrawal. I was introduced to the depression that became my new partner in bed and often becomes the eager companion of TBI victims.

Not normal for me

Fall 2005, one year later, I was led to the right doctors after probing and insisting there was something “wrong” with me.  My neurologist had wanted to wait for six months, assuring me that 50% of TBI patients overcome their injuries and their symptoms typically subside.  It has never been difficult for professionals to diagnose me and shake their heads acknowledging the odd number of hours of sleep, the mincing of words and the lack of focus, but that was just the problem.  They related to my injury as if it were cold empty words in science journals.  Doctors assured me the two to four hours of sleep was all normal for a TBI patient, even after small errands.

In the end, I advocated that I needed speech therapy, throwing my fragile brain to the hands of a woman who taught me how to organize thoughts, calendars, train my brain slowly to make decisive decisions, and flag notes all over the house and car as a means to remember.  Sometimes I used warnings like: TURN OFF GAS APPLIANCES, or LOOK BEFORE YOU REVERSE!

The first time I went to the hospital for therapy, I felt ill at ease. Surrounded by TBI patients, I cringed and became judgmental.  I was not- restrained in a wheelchair, or slurring words like some of the patients coming for rehabilitation.  I was embarrassed that I looked fine.  Other than dramatic sunglasses I purchased in an attempt to shield the fluorescent lights of the hospitals and malls and a bit of a wobbly walk, you could never guess I was inured. I even thanked God silently that I was not like “them”.

It was not long, however, before I accepted that the injury had made me invisibly like them.  My natural instinct as a mother and my fighting spirit had been the instruments for my first year of survival.  Now it was time for professional intervention.

It has been four years and counting since the last time I was able to enjoy the sunlight that pours into my bedroom window.  My long narrow closet had once served as solace because its darkness kept the slapping force of the migraines at bay.  I had never had a migraine before this fall, never had mundane noises affect me as if they were sharp piercing cries.  The flashes of light on the right side of my face became warning signs of an impeding headache. The comfort of my pale hands wrapped around a toilet vomiting became routine.  Time meant nothing as days became intertwined with months, days into night and I continued sleep walking through life.

Family fallout

Mechanically, I took care of my children and my husband.  He became the victim of my injury as I screamed and tore at our relationship.  My children, then the tender age of five and three, asked why mommy slept, why they didn’t have play dates or other activities.  Guilt set in.  Silently my family and friends watched, helpless, as I stumbled with words, retreated from family gatherings and ultimately harbored the pains of living in my own cocoon of doom.

I learned through my team of medical doctors, all familiar with the crises of TBI patients, to cope with the side effects. I was given a cocktail of drugs to ease the pain, attain alertness and combat the depression.  Finally, with the right drugs and the help of brain injury services – things started to fall into place.  It was only then – with help – that I was able to map out a path to recovery with my case manager and my speech therapist and dedicated doctors.

Sometimes, when the cool air tickles the back of my nape, or when the sun sets peacefully along the horizon against the backdrop of my plush lawn, I wonder who that monster inside me is.  I rejoice that I can let tears of joy fall when I see my daughters laughing or cheering when mommy is riding a bike with them…although clumsy, I’m trying. I’m blessed to have reached a point of awareness of this devastating injury where I can muster the courage to talk about my disability and no longer linger in the domains of paralysis.

Becoming aware and helping others

Today, brain injury services, brief documentaries and brain awareness month, help to educate people about the different degrees of brain trauma.  I’m reaching out to those who stood by me and probed me to find my old self again.  Although I have buried the woman I was, I am emerging with a new sense of life and its precious gifts: time, rational, and most of all, love.

I also understand that the journey of becoming aware and helping others grasp the gravity of what I’ve been through is a long one.  I’ve learned to live with the disability, but at times it’s hard to tell your daughter why you constantly forget her at school, or rush back to grocery stores to pick up groceries purchased but left at the curb, or barely remembering how to drive home.

I shake my head thinking back on how I was allowed to drive in the early stages of my disorientation.  I was a potential hazard to myself and others.  My car had to be traded in after minor bumps and dings because I couldn’t align my parking or reversed instead of going into drive.  I had lost the connection for reasonable actions.

Every day is a new journey.  I have chosen to make my rehabilitation and the progress I’m achieving a testimony to others and a chance at hope for recovery, so others will not be alone during their walk of life.

By JR Pietrowski

I am a 44 year-old male who was paralyzed in 1974 at the age of ten. I was diagnosed with a brain abscess after months of my doctor not being able to find what was causing me to be so ill all summer. A neurosurgeon was called in while I was in coma and he discovered a mass in the left side of my brain. Surgery was performed and I went into cardiac arrest. I was resuscitated before major brain trauma occurred. I came out of the coma a few weeks before my 11th birthday which I had in the hospital. The abscess left me paralyzed on my right side of my body. I went through years of physical, speech, and occupational therapy.

In 1983 I was diagnosed at the MCV hospital with more abscesses which were removed the night I entered the hospital. After weeks of tests the doctors there diagnosed me with HHT, a rare genetic disease where a person’s blood does not get filtered properly. Symptoms of HHT include nose bleeds (I have), shortness of breath (I have) brain abscesses (I had), stroke, and death.

The disability caused many of my friends to withdraw from me. They did not understand a handicapped boy. I compensate by working at The Denbigh House where we all have some sort of head trauma. I keep track of appointments myself on a calendar as I live alone since 1988. I feel as though I have made some good major changes in my life since becoming paralyzed. I live on my own, drive, and volunteer here, which I enjoy. Still have a long way to go what with diabetes also, but I am proceeding.

Denbigh House, located in Virginia, is a clubhouse for people with brain injuries.
denbighhouse@gmail.com
www.communityfuturesva.org