Visit Your Local PBS Station PBS Home PBS Home Programs A-Z TV Schedules Watch Video Donate Shop PBS Search PBS
NOVA scienceNOWNOVA scienceNOWNOVA scienceNOWComing up
arrow Brain Trauma
Share Your Story

Ask the Expert

Here we offer personal stories that viewers of the NOVA scienceNOW segment on traumatic brain injury sent in the week following the original broadcast on July 30, 2008. For those whose stories appear below, please note our policy forbids us from including viewer e-mails or other contact information here, but if you have questions to which you cannot find answers below or on our Ask the Expert page, we encourage you to ask your question on our Discussion Board. Please note we are no longer accepting stories for this page.

I thought I was fine until I received my second and third concussions within two days of one another. Memories are slowly returning, with the most recent being the recollection of sustaining my first concussion of the year as a result of a nearby lightning strike. I had a test that indicated I had nystagmus and a weak inner ear on one side. Although I have worked in the medical field for over 13 years, I am surprised how long it is taking to recover (two months and still going). I have returned to work full-time but still struggle with memory, focusing, and vision with frustration. I was informed by a coworker of the show, but I missed the original program. Will it rerun? Thank you.
Anonymous

Editor's note: You can watch the "Brain Trauma" segment online anytime.

My 24-year-old son has both TBI and ABI. He originally had a stroke at birth and later had sustained some head traumas from seizures and falls. Because of his types of head insults, he has resulting mental illness-mood disorders. It took us a long time to get him properly diagnosed, and I am very grateful to the neurosciences and the great doctors who finally gave us the proper diagnosis.

With it taking so long to become properly diagnosed, he never had the proper help, and with his impulse-control issues, cognitive deficits, and aggression, services were difficult. To be honest, they were not difficult to find; they were impossible to find. We heard the neverending story of "how he slipped through the cracks of services," which only seems like a reason to not help.

My son often said that he wanted to live in a lighthouse, because if the world saw him welcoming light, no one would be afraid of him. He has a very gentle spirit, but sometimes his impulses get the best of him.

I have decided to start my own support group for families who have a loved one with a brain injury, because I want to help create that welcoming light of hope and have our voices be heard on the importance of brain injury education and resources.

He just started living in a facility a week ago, and although it is not a faciity for brain-injured adults, I hope one day he will be able to access such services and get the help he needs. We keep a replica of a lighthouse in our house and in our hearts that one day he can be that welcoming light of hope.
Patricia Johnstone, Hanover Park, Illinois

My brother was in a small-plane crash eight months ago and suffered traumatic brain injuries, multiple broken bones, broken ribs, collapsed lungs, a few broken vertebrae, and facial damage, including to one eye. He went from a comatose state to a vegetative one and at four and a half months woke up. We started therapy, and a month later the trache was out and the feeding tube too. Doctors said he was not going to make it and he did. He is still on therapy and walking with assistance, and his short-term memory is improving. He did not have any type of insurance, so between Medicaid, which is not much, and some donations, we are paying for his recuperation, which I personally think is a miracle. He has the will to live!
Liza, Davie, Florida

My friend Vern and I were riding our bicycles one summer's afternoon and decided to explore one of the old warehouses of the lumber mill. It was a shell of a place with most of the machinery gone, except for these large hand-crank pulleys that were attached to large pillars, the gears still wrapped in the hoist chaines. It was a place we had been repeatedly warned to stay out of!

Because we were curious—and brainless—we rode around inside this cavernous building checking out the remains of the old lumber mill's machinery, including the old pulley systems. I leaned up against one of the pillars, still seated on my bike, and started poking at the latches/pulley components, unwittingly releasing the safety pin, which caused the three-foot handle to swing full circle, which in turn hit me aside the head and knocked me about 10 feet—off my bike and against a pile of old wood.

I do not think I lost consciousness for long... and I remember trying to struggle to my feet (more afraid of getting in trouble than being hurt) while my friend Vern tried to help me. He was covered in blood and I kept asking him what happened to him, not focusing on the fact that I had just been slung across a stack of boards and the blood was actually mine.

He half carried me, half dragged me about four blocks to the nurse's station. (We had no doctor's in the town, no hospital, etc., only a nurse's station down by the railroad tracks.) Vern propped me against the door of the station, knocked and yelled for Mrs. Jones, and then took off running, leaving me standing there, apparently a bloody mess. Oddly enough, I can remember no pain, no fear (except getting a spanking for being in the forbidden warehouse).

My last memory for two months was Mrs. Jones opening the door and the horrified look on her face. I blacked out and collapsed there in the doorway (I was told later by Mrs. Jones). Two months later I came to in my bedroom, my mother by my side. The time span is all a blank. I never did go to a hospital, nor a doctor. My parents did not own a car, nor did they drive. Our town was remote and money was scarce for my family.

To this day I have horrendous "lightning bolt" headaches in the area of the wound, and the dent in my skull is still tender. From what I have learned later in life, going to physicians for the lightning-bolt pains, is that there is little that can be done for the situation now. I was lucky—plain and simple, it seems.

I have read that head injuries are often the site of later aneurysms. So who knows? What didn't get me then may finally in the end.
Anonymous

When I was six years old, I was literally "run over" by a horse. The left side of my skull was crushed into my brain. (I still have a horseshoe shaped scar you can easily see if my hair is moved.) When I reached the hospital, my brain was severely swollen, and I couldn't talk or use the right side of my body (per my mother's memory). After several hours of surgery (and 48 stitches), I was able to speak and use all of my extremities within normal range, etc.

At around age 8-10, I had some X-rays done to see if the bones had knitted together properly. The neurosurgeon—Dr. Butts, Norfolk, Virginia—was concerned that a significant hole may remain that would need a metal "plate." The bones apparently grew back properly because I never needed another surgery. I am now 37 years old and live a very active life. I have three children, I am a full-time RN, I own/operate a poultry farm with my husband, and I wear many other "hats" that moms/career women must wear!

Over the past few years, however, I have experienced some of the symptoms that my mother heard about while watching the NOVA program about brain trauma that recently aired (i.e., inability to continue a train of thought, racing from one task to another without completing the initial task, feel disconnected from the moment or present thought). There were many symptoms, but I cannot remember them all, and my mom called me while at work and I couldn't talk long at the hospital where I work.

She had seen these symptoms in me lately that she hadn't seen before. They appeared approximately six months after purchasing our farm (the responsibility and labor on the farm is tremendous!). I was diagnosed with adult ADD last year, due to some of my disorganized thinking and various tests I was given. (After trying Strattera and Concerta, I was put on Adderall 10mg BID and have seen an improvement.) I also started taking Cymbalta (started one month ago), and although the combination has really helped my ADD symptoms and anxiety, I still feel (when I am stressed) that I can't continue a train of thought.

I've never thought about the head trauma I experienced 31 years ago to have any relationship to the symptoms I have now, but since my mom has been so concerned, I thought I would write about my "story"! I'm really thinking about getting an MRI done but don't want to appear silly requesting such a test if there isn't a true problem. Silly coming from a nurse, right?
Brandie, Smithdale, Mississippi

In July 2003, I was in a sponsored bicycle race. The last thing I remember was being approximately 3-5 miles from the finish line. From witness accounts, I had crossed the finish line, turned around, and was heading back to the rest of the group at the finish line when a truck pulling a trailer came up alongside me. I went down, somehow, and the trailer ran over my head, resulting in a Traumatic Brain Injury. My bicycle helmet saved my life. I received a "Saved By The Bell" certificate from Bell Helmet after I wrote to them to tell them their helmet saved my life.

My left side was paralyzed for some time. I fell out of my hospital bed three times and suffered a 3" cut on top of my head. I didn't know I couldn't walk. I had to learn how to walk. While I was in the hospital, I was told the only way I could go to my son's wedding was if I learned how to stand on one leg—a real challenge. (I went to my son's wedding.) I had to re-learn how to speak. I still have some occassional stuttering and slurring of words. I lost my sense of smell from my accident, so eating is more of a chore than enjoyment. I work at a power plant, so fellow employees have to warn me about gas leaks, sulphuric acid fumes, etc.

My entire life has changed dramatically because of my accident. My wife and family realize and accept that I am a different person now. Through their support and acceptance, I have regained much of my self-respect and confidence. Depression is a continuous threat. I am taking medication for depression but, at times the medication is ineffective.

I am riding my bicycle... again. Along with my medication, it helps keep the depression at bay. I do not race anymore. That adrenaline rush from racing is now absent. I have joined a brain injury support group. I have some serious injuries, but membership in this group makes me realize there are others in this world who are much less fortunate than I am.

My family is my source of strength. I cannot thank them enough. I am a very fortunate individual. Thank you.
Bob Harding, Williamsburg, Iowa

Our son sustained a significant concussion five years ago in a snowboarding accident. (He wasn't wearing a helmet and the back of his head and back hit metal rails.) Since then he has suffered with 24/7 headaches, neck pain, back pain, shoulder pain, memory loss, inability to focus, tingling in his arms/hands, significant fatigue. No CT scans or MRIs showed anything significant until recently a DMX (digital motion X-ray) showed ligament damage to his C1 vertebrae. We've been told there is no way to repair this damage, but that the future may hold hope in terms of stem cell research. His life has taken an entirely different turn as a result of this accident, including a reduced ability to cope with post-secondary studies and now a full-time job. His most effective means of coping with his daily pain and headaches is to compartmentalize his brain and try to live in a different "zone" to where the pain lives. This takes great effort.
Anonymous

I am a diesel mechanic, and early this spring I was working on a large truck. I was standing on the front tire (about three feet tall) to work on the engine and went to step down onto a step stool and lost my footing. I fell backwards and my head hit the concrete floor very hard. My boss helped me up, and I continued to work.

A short while later I drove two miles to my house, and after I got in the house I realized I couldn't remember driving home. I also couldn't remember that a few days earlier I had signed the lease on a house and moved in with my girlfriend. I called my mom and she drove me to the doctor's. The doctor told me I had a grade three concussion, but a CT scan showed no swelling of the brain. I was released from work for one week and no dangerous activity for one month.
Courtney Cauble, Mount Hope, Kansas

After suffering a severe blow to my head, with closed head injury then post concussion syndrome, I developed many expected symptoms from the kind of injury I had, and I have never recovered. The most unusual symptom is being dissociative. Then, instead of treatment by a brain injury expert, I was referred to a Mental Health Clinic that did not treat organic problems. I could not function properly and received little to no real help. I ended up homeless for years, suffering from malnutrition due to not having any money for food, getting permanent organic damage from this as well. Becoming nothing but prey of drug addicts and criminals.

It is better to let people die after a head injury than to have them live like this. It is the cruelest thing I could ever imagine. Support euthanasia for the disabled. The SPCA wouldn't let a dog live like this!
Anonymous

I'm a screenwriter who was assaulted on the head by two to three students while substitute teaching in a Physical Education class. After watching NOVA, I now realize that I have possible brain injury—I can't remember details, names, places, and I have headaches and suffer amnesia. This injury has not been properly diagnosed by the worker's compensation doctor to whom I've been sent. I would like to discuss this further and I'm compelled to write and talk about what happened. I've published an article and written many unanswered letters to the Los Angeles Unified School District. Please help me figure this one out.
Migdia Chinea, Glendale, California

A car hit me in 2000. My brain bled for two hours. At first I couldn't speak properly. I thought that I was speaking right, but no one really understood. I can't understand as I used to.

Why is there a sport that lets people suffer what I suffered? That is barbarian. We should give them a civilized way of living, i.e., sports that give them money and not injuries.
Anonymous

On 12.23.1964, I was seen in a hospital as an emergency. Discharge summary said I was in extremes. On painful stimulation, I would try to move my left arm; there was no movement in right side. Due to increasing respiratory difficulty, limited X-ray could be done, and on being placed in operating room for craniotomy with Temporal Bilateral Decompression, I stopped. Anesthesiologist inserted endotracheotomy tube and started artificial respiration while craniotomy was performed.
John D. Craft, West Palm Beach, Florida

Back in 2001, I experienced what my neurologist at the time described as a virus that attacked my brain. I have an enlarged 3rd ventricle. I was told that this was probably caused by a blockage of the 3rd ventricle, which allowed CSF to build up and enlarge the ventricle. The "blockage" disappeared or resolved by itself. During this process I had MRIs, among other tests. It was the MRIs that showed the enlarged 3rd ventricle.

My symptoms at the time started as what I called diplopia or double vision; actually the vision of my left eye was turned 90 degrees inward. The right eye was normal. This resolved. Additional symptoms, i.e., balance and speech difficulties, came and went. About every two weeks I would have a new symptom or disorder, which would resolve on its own.

Prior to and about six months after all this happening, I would drive. I remember now that on one or maybe two occasions I hit my head on top against the door opening of my vehicle (where the weather strip is). I was wandering if this action could have caused a concussion or at least similar damage and if this damage could be giving me problems today combined with what I first described. Now I have balance problems and occasionally vision and speech difficulties when I'm tired or use my "brain" a lot.
Anonymous

I experienced a motorcycle crash in October 2005. After the impact, I was projected over the car I hit, flipped in mid air, and landed on my back and head. My Snell-approved helmet was cracked on impact. A few hours later, I hobbled out of the ER.

In the three years since the crash, I have noticed that I seem to forget a lot more, have much difficulty concentrating, and my vocabulary seems to get smaller every week. I have been thinking I'm just getting older and it is to be expected. After seeing the NOVA scienceNOW segment, I'm wondering if there is hope for regainig what I've lost.

I'm curious as to how to learn more about this subject.
Alan, Winston-Salem, North Carolina

After visiting your site, I found the mild-brain-injury transcript a little bit disappointing. Yet again, scientists are wanting to "see" a brain injury instantaneously or at least shortly afterwards.

This mind-set still gives and perpetuates the stigmas that people with mild-to-moderate brain injuries face. These are experiencing people who cannot get services, do not "know what is wrong in their minds," struggle with everyday life, and eventually fall through the cracks of care.

I appreciate the science very much. But the tried-and-true neuropsychology of brain damage is where it is all at. Regardless of what we "see within the brain" or not, what the damage actually is and how it affects us (cognitively, behaviorally, motor skills, etc.) is the most significant factor in this disability called brain injury.

By continuing programs like this, without the counterbalance of how the damage actually affects one's "being", the stigmas, explaining or understanding the confusion, and the difficulties accessing services and understanding the experiencing person will continue.

I am a peer advocate who sustained a "moderate" brain injury almost 18 years ago. I now work voluntarily to advocate for experiencing people and their families living with brain injury, to bring about awareness, help seek services, deal with the behavioral health side (long-term issues), and lobby for adequate prevention, services, education, etc.
Glenn Ford, Albuquerque, New Mexico

I have a friend who went to an electronic music concert and had an accident. He had been doing E (Ecstasy) and was sitting on an outdoor chair when he fell backwards and hit his head on concrete. I wasn't there myself, but from what I've heard he doesn't remember falling or whether he was unconscious or for how long. A day later he went to see the doctor and the doctor told him he had suffered a concussion. My friend stayed home for a couple of days in bed not feeling very well. Even though my friend has since "recovered" and is back working, he hasn't been the same since the incident. I'd hate to think he's had permanent damage from a simple spill, but proof otherwise has been slow in coming.
Anonymous

I was 5 years old when I fell down a flight of cellar stairs because my sister failed to lock the door. I needed emergency surgery on the back of my head. I have a huge scar across the back of my head, and also many learning disabilities, which I believe may have been caused by my severe brain trauma. I also get lost driving places within the same city I grew up in. I am not sure if that was caused by the brain trauma or not, but I do know that I cannot do even the most basic math due to an LD called dyscalclia. Can you tell me if it could have been caused by the brain trauma?
Anonymous

Two years ago, I suffered a serious injury. I received 187 stitches and a fracture to the right front of my skull. The stitches ran from the outer corner of my right eye to the midpoint of my skull, three inches over the right ear.

Three things that I've noticed since the injury:

1. I now reach, pick up, and drink with my left hand—something I had never done previously, since I'm right-handed. Everything else is still done right-handed.

2. Immediately after the injury I felt hairs popping out of the corner of my right eyebrow, despite the fact that this entire area was otherwise numb. In fact, two-thirds of the eyebrow had been torn off.

I'm thinking this was due to stimulation and triggering of an active phase of stem cells, migrating to the wound site. I'm wondering if this could provide insights into hair regrowth?

3. I tend to talk more.
Anonymous

This show made so much sense to me and explained some questions I've had, having experienced many brain traumas throuhout my life. I had often wondered what the electrical pops in my head were being caused by. The pops, usually while resting, are like sparks that will sometimes make my head jerk. I've also experienced some of the other symptoms described on this NOVA program, but luckily they are only occassional. Obviously, the white matter connections in my brain have never completely reconnected.

My memorable concussion history started at six years old, when I was trying to see the bathroom mirror to comb my hair. Cleverly, I stood on the edge of the tub to see the mirror. Unfortunately, I slipped backwards, with my head landing on the ceramic soap dish. I remember not going to school that day, probably because of the bleeding, but it stopped and I survived.

Then, at the age of eight, while cousins and I were wresling with my uncle on the backyard lawn, I was tossed in the air, and my head came down on a concrete slab patio, a couple feet from where we were wrestling. I was out for a couple of minutes that time. At the age of 12, I fell out of a 25-foot tree, causing the longest brain outage (10-15 minutes). I had a slight neck fracture, but totally recovered.

At 27 I ran into the back of a stalled 18-wheeler. Returning home one night, going 60mph on the highway, the car in front of me swerved to barely miss the stalled vehicle, but although I tried to stop, I didn't quite make it. The engine was almost in my front seat with me, and the windshield showed where my head had gone through, and back. That was before air bags, and the steering wheel kept me from flying out of the windshield.

The ambulance that brought me to the hospital had also brought someone in from a different incident, and that person saw me after my head had been sutured and I was sitting up in a wheelchair. They made the comment to me that they couldn't believe that I was the guy they had brought in an hour earlier.

Nothing that bad has happened since, except one minor slip on wet concrete, where my feet went up and my head went back to come down on the wet concrete, hard enough to see stars (figuratively). It's actually more of a sound thing, like a high-pitch hum between both ears. I definitely have an angel, or I'm awfully lucky, or more than likely, both.
Joe Burton, Houston, Texas

In 1990 I was involved in a head-on car collision, with an uninsured driver, which resulted in a Traumatic Brain Injury (TBI). After a short coma, I was in a Rehabilitation Center (CasaColina) for about nine months, then outpatient for a time. It resulted in a permanent seizure disorder. I am very fortunate that my recovery has allowed me to return to the workforce in another care facility, and I have a family whose patience and support has continued to be my strength. My memory is not great, but I have learned to keep a calendar and am not too embarrassed to ask for help.

I tell people who ask me about my challenges and life that when I read my life story, I skipped this chapter.... I feel there was a reason for the injury; if nothing else it has taught me to be more patient with myself and others. And I can't help but feel that with my personal experiences I am a support for the patients and their families.
Anita, Los Angeles, California

It was a rainy day in October of 2005. I was a sophomore at the University of Georgia and living in a dorm. Some of my friends and I decided it would be fun to play football in the rain that evening. The game was indeed a lot of fun—until I took a knee from a 6'4", 250lb friend straight to the right side of my forehead. I immediately felt a very distinct and sharp line of pain extending from my right eye to the back of my head (optic nerve perhaps).

Over the next few days, the pain became more severe and global. I also started to develop blackouts. It seemed like everything would stop for a moment, a complete darkness for a second or two, like the instant one wakes up from deep sleep and the overwhelming sense of "Who am I? Where am I? What is going on?" takes over. Then things would start to make sense again little by little. I had an MRI, and it showed brain hemorrhage and some brusing. The doctor informed me it was severe TBI, which had the potential of paralysis and even death.

For the next six months, I was always out of it. Things were out of sync, and I could not seem to focus on school or retain information for long. At one point, I could not even remember my friends' names. My short-term memory was severely affected. In addition, nothing seemed ... real. I know this sounds strange, but it always felt like everything was staged (like Jim Carey in The Truman Show). In other words, I would go through the daily "motions" without realizing I was doing them. I would hold deep conversations with my friends, but without realizing or later remembering that I had them.

I have recovered almost fully from my injury, with the exception of my memory and some speech problems. I don't feel as sharp in retaining information as I used to, and with medical school coming up, it is a bit worrisome. Another minor issue is speech. I was averagely aritculate prior to the injury, but now I find myself at a loss for simple words more often than I would like.

There are some things that still trigger a full comeback of all the symptoms of the head injury just after it happened. Alcohol consumption is the main one. Even if I drink a moderate amount, the "hangover" feeling lasts for days, if not weeks. The loss of attention, cordination, speech, and the feeling of being completely "out of it" return fully. I have given up alcohol for good. A few other things that can trigger these symptoms (to a lesser degree) are sleep and blood sugar. I have to get at least six hours of sleep every night or else I feel out of it the next week. This is unusual for someone who was used to pulling all-nighters back to back. Also, my meals have to be on time, especially breakfast. If my blood sugar drops too low, you guessed it. Now I monitor these "triggers" religiously. I also try to keep my blood pressure on the lower end of the spectrum in hopes of reducing my risk of a brain aneurysm later on in life.
Anonymous

On January 21, 2005, I was hit by a 10ft. free-standing flagpole at an elementary school as a first-grade teacher on-the-job injury. I was diagnosed with post-concussion syndrome early in the injury, so I was receiving worker's comp and thus getting part of my salary. When I was not getting better, the school let me go, and I no longer had a job, then after one year worker's comp, they said that I was fine and they stopped giving me my salary.

It's been three, almost four years, and I am still not able to work because of the syndrome. I have had every test done and nothing shows, so even with a lawyer I am losing my case against the worker's comp. I don't know what to do, because I have headaches, dizziness, and lack of concentration, and they come and go constantly. Only with lots of rest do they go away for a while, until I begin to do things like read, talk a lot in a loud voice, or use the computer or TV. I begin with the headaches and lack of concentration.

My sleeping pattern is terrible since the accident, and I also started needing glasses to see since the accident. My eyes are worse now even with glasses; I can't read small print and the letters look doubled. If I see a lot of things on a page, I get mixed up and get frustrated with the writing on the page or pages. The less I sleep the worse the post-concussion syndrome is.

Please contact me with hope or information. I am so depressed, and I feel like there is no hope. I am losing my case, and the lawyer said I have no test or evidence that supports my problems and so in court I have nothing. Doctors I have seen can't help me and some say it's not possible to still have post-concussion syndrome for three years.
Cynthia Harrison, Laplace, Louisiana

I was riding a scooter, street-legal. I was stopped and waiting to turn left when I was hit from behind by a Chevy Silverado going 45+ mph. I was hit, thrown, hit ground, and dragged a little. I should have been killed instantly by the initial impact. I have experienced a complete sea change in my personality, including PTSD symptoms, obsessive issues, extreme paranoia, not to mention constant pain and very little sleep. I am dependent on the county hospital system, and they can do nothing for me.
Anonymous

At 7 my brother was knocked to the ground by a slow-moving auto. He was hit from his left side, and I believe he hit his forehead on his left side (impact with the auto), and forehead on his right side (impact with the concrete street). He was treated and released with no broken bones or other diagnosed injuries by a local family doctor.

BUT—being just less than one year different in age, my brother and I attended the same classes at school, and I noticed his loss of attention and change in ability to focus and learn subjects (unless he was intensely interested in them).

My brother is now 60 and is considered very intelligent but also very unfocused. He rarely finishes anything he starts, fails in both relationships and jobs that require structure and routine. He has been diagnosed with minor dyslexia and ADD.

While watching this program, I found myself wishing that my brother could be tested with all this great equipment to determine if he has suffered brain trama.

Another interesting thing that came to mind is the fact that my brother experienced his greatest change for the better related to his inability to focus on things routine or of disinterest to him during and after he went through computer-aided biofeedback training. Naturally I wondered of bifeedback training had been considered by those working on the various technologies shown in this program, and if some of these technologies could be used in combination with biofeedback to improve the results for not only brain-trauma patients but also people with dyslexia and ADD?

Cheers,
DB

I feel that I have had a mild brain trauma, which seems remarkably similar to a concussion. My injury came from a mold exposure in my home and workplace (simultaneously). I had extreme difficulty with cognitive function (I could not remember my phone number, address, etc.). I was confused while driving and could not find my way home. I could not read articles, because I would have no idea what I'd read. And I'd have people speak to me in which I watched their mouths moving but I was not processing any of the information they were trying to tell me.

I think this could have come from neurological damage from the mycotoxins in mold spores, as much research I have read says. It has been five years, and I have improved a lot, but I still have difficulty concentrating, processing some information, and finding words. However, I can remember my phone number and address and basic information now. Is any of the research on concussions similar to "environmental/toxic" damage to the brain? Thanks.
Cathy, Newburgh, Indiana

I had a stroke (a hemorrhagic stroke) when I was only 37. I had a saving surgery on the 29th of July, 2003, and I was in a coma for 10 days. They finally found out why I had a stroke—I had a condition called an AVM. I was born with this and for some reason it just blew that day. It's basically happened because one part of my brain had veins and arteries but no capillaries. I still go for therapy even after five years. I live at home with my mom. And I really want to be working as a nurse again.
Anonymous

I was in an auto accident just over a year ago. Someone pulled out in front of me and I basically T-boned him at 45mph. After that and ever since, it seems as though I have been a little "out of it." My memory seems to be worse than it has ever been. And for the longest time, I just felt weird. It's hard to explain. After seeing your episode, I wonder if may have suffered a concussion. I would love to know more, and how I can test this?
Chris Ramey, Madison Heights, Michigan

During our daughter Kayla's 9th-grade year, she was thrown from her sister's car. Kayla had not been wearing her seatbelt and fell back against the door. Kayla fell from the car onto the ground and had a general seizure on scene. She was transported to the ED, where the ED physician released Kayla to us with a referral to a neurologist. The very next day Kayla was acting different, and showing memory loss and trouble with her speech slurring at times. She suffers from terrible mood swings and headaches. She currently takes medications for seizures, memory loss, and depression. Kayla is now 17 and still having problems dealing with concepts. We as parents struggle with Kayla's TBI and hope she can lead a normal life.
Anonymous

I played college football in the early '90s. During my last two seasons, I had five confirmed concussions; in fact, three were in three successive weeks in my senior year. I also had countless blows that created the affect of a "light bulb" going off in my head but were not "confirmed" concussions. The week or so after the concussion episodes, I definitely had a hard time concentrating on my studies.

More concerning to me is that I still feel like my memory is very poor. In fact, I can forget what I am talking about right in the middle of a sentence. I also have a hard time concentrating on one thing for very long. For example, I cannot make it through one newspaper article from start to finish without stopping and doing something else. And I probably started six to eight books over the last year, each of which I did not get past a quarter of the way through before I set it down, never to pick it back up.

It has not affected my work too much; I have moved up the corporate ladder at a solid pace since graduating college. However, I feel that as I attempt to move higher, my inability to concentrate on a task to completion and to keep my attention long enough to completely organize work will become evident and may hold me back.
Anonymous

I was hit by a door: A coworker swung the door too hard as I was walking out of a room and she was entering the room, and the door hit me very hard on the right frontal part of my head. I suffered post-concussion syndrome, with intense symptoms that keep lingering. It has been seven weeks, but I am still not fully recovered. I suffered very much from headache, nausea, dizziness, vertigo, and most frustratingly the LOUD and constant ringing in my head (same as said in the program, my CAT scan shows nothing).

In the past five days, my neurologist put me on 1000mg/day Nabumetone for anti-inflammation. The pain in my head seemed to lessen, and the ringing in my head is less loud but still ringing constantly around the clock. Please help me understand these symptoms and tell me that I will fully recover? I am scared, frightened not knowing the prospect of a full recovery. If anyone has any idea, please kindly help me. Thank you very much!
Anonymous

What It Is Like To Be Me:
Life with multiple undiagnosed traumatic brain injuries
by Bob Westbrook
(a victim of Traumatic Brain Injury)

PART ONE
I think it started with the unhappy and sometimes violent marriage I was born into. When it was discovered that my mother had placed me in a 24-hour day care, my grandmother "bought" me from her, gaining legal custody. There were great concerns because my right side didn't seem to work well and I didn't communicate or socialize well either. Yet I was highly intelligent, learning to read in a matter of weeks when told the balloons on the comic books told what the figures said and able to solve complex puzzles at six years old. There is a strong possibility I had or have Asberger's Syndrome. Regardless, I never got along, never had friends, was physically awkward, and was the kid everyone picked on. I had serious emotional-control issues, with an anger that would rage in a heartbeat.

At 14, tired of being beat by my father, who took custody of me when I was five years old, I ran away. When found I was sent to my maternal grandmother, who took on the challenge of raising a very rebellious boy. I found acceptance in the drug culture of high school and, for the first time feeling like I belonged, jumped in with both feet. I was still socially inept and never dated or had a girlfriend. I was also the kid who was most gullible, easily talked into doing anything.

At 16 I ran into the side of a car at 40 miles an hour on the off-road motorcycle I commonly drove illegally all over the small West Texas town I lived in. Unbeknownst to me, I broke my neck; that would be discovered years later. Whether this caused additional injury to my brain I'll never know, but my behavior escalated to include greater illegal activity. On my 17th birthday I was placed on a bus for basic training by a judge after stealing a car. Despite having only completed the ninth grade I passed my GED and scored so high on my military entrance exams that I was scheduled to be trained as a crew chief on B-52s. My tested IQ was 136, putting me in the top 98 percent of this country.

Military life didn't work well with me, and I continued being a social outcast. With the Vietnam War just ending, I was strongly encouraged to take an honorable discharge after serving only one year of the four-year enlistment. With that I returned to the drug culture I was familiar with, and at 19 was sentenced to prison for drug possession. Texas prison was a shock, to say the least. Upon my release two and a half years later, I enrolled in a Bible college to pursue becoming a pastor, definitely determined to avoid the previous mistakes of my life.

There I met the first woman I fell in love with and shortly after we got married. Graduating, I was ordained and moved to Toledo, Ohio, where my wife was from. Then I fell out of a tree. I broke my neck and back and received a concussion. This was when it was discovered I had broken my neck before. The doctor came in with the X-rays and asked when I had broken it before, showing me where the vertebra had healed after being splintered.

The recovery process was long and painful but the hardest part was the drastic personality change. There was no explanation for this from any of the doctors; no one seemed to have a clue what was going on or why. Here I was, a pastor, flying off in anger and calling waitresses "Honey" in a flirty manner with my wife next to me. This scared her and her family so much that they encouraged her to file for divorce. What a wrenching, heart-breaking time this was. Just tore us both up.

I remarried, too quickly, a woman who was unfaithful to her husband, divorcing him to marry me. Poor judgment would be an understatement. It was the beginning of a rough 17 years, but I became a successful businessman, founding two companies that at one time had 127 employees. The first one was a marketing company that provided services to area corporations, and I also was a consultant teaching them how to find and sell to customers as well as develop their corporate image. Not bad for someone with no business college education at all.

Then I fell 20 feet from the pallet racking in my warehouse. This brought another drastic personality change. My secretary later told me I became an instant assxxxx. It was the start of everything unraveling. I began making poor business decisions, my already shaky marriage really fell apart with me catching her with another man, deep depression set in, and I returned to drugs and drinking, which just made everything worse. I got in trouble with the law again and was placed on probation.

The day after I signed my divorce from my second wife, I loaded what I could in my car and headed back to Texas. I made it as far as Oklahoma, where I fell asleep at the wheel. It was a horrible wreck, and I was pronounced dead at the scene. In fact, I am still listed as a fatality on Oklahoma's computer. This was November 11, 2001.

I began to wake up from the coma just before Christmas of that year. It was a slow process, like coming out of a fog. Gradually things became clearer, and I was a little bit more aware during these periods of consciousness. I was in a hospital bed with something wrapped around my neck that prevented me from moving it. My hands were strapped down to the sides of the bed. The bed had a netting surrounding it to keep me from falling out. I saw a nurse come in and tried to talk to her. When that happened, there was a commotion. I heard someone say he's awake, and then others came running in. A doctor asked me if I knew my name. As I tried to answer the voice I heard was high-pitched like a child's. It added to my confusion as I wondered whose voice it was.

I knew my first name, and after some effort I think I recalled my last name. Then I was left alone and laid there trying to comprehend what was going on. Where was I? How did I get here? What was wrong with me? Why am I tied down? I knew I was in a hospital, but that was it. Nurses would come in to change my diapers or check the I.V.'s that seemed to be stuck in every vein I had. They told me I was in Oklahoma City and that I had been in a car wreck. I was later told that while in a coma I was cussing and would tear out the tubes and I.V.'s requiring the restraints.

There was a TV in the room and I was given a remote control to it, which I could sometimes operate when it didn't fall or disappear where I couldn't find or reach it. Sometimes I wouldn't remember I had a remote and would ask a nurse to turn on the TV. I would just watch it for hours and wonder about what I saw. Much of it was new, and there was this sweet lady named Oprah. I admired how much she would help people. What I saw stirred me in strange ways, and I would cry often. Then some of my memories began to return.

They weren't good, a confusing patchwork of bits and pieces that I couldn't put together. None of them seemed to be pleasant. There was an intense sadness attached to most of them, along with anger. I knew that I had been running away to Texas, I had been in trouble with the law, and I had been using drugs. I remembered owning three companies. I remembered a wife.

I could remember my home phone number but not my home address. It was one of the first of the strange gaps in my memory that I began to be aware of. One of the nurses helped me to call home to my wife and her two kids, whom I had raised and who called me dad. When her boyfriend answered the phone, a flood of memories rushed in. I remembered catching her having sex with him and knew we had been in the process of a divorce. For a while I had said the divorce had been finalized while I was in a coma, but I now know that it had been settled prior to the accident. That night after the call, as grief overcame me, I began crying so hard that everyone could hear me down the hall. It was almost like the wailing cry of an injured animal.

I was soon allowed to eat real food but seemed to be full after only a few bites. My taste and smell no longer seem to work very well. There is nothing like having your diapers changed when you are 46 to teach you humility. I began to insist that I be allowed to walk so I could use the bathroom. At one point two nurses came in and pretty much carried me into the bathroom and even had to help lower me down onto the toilet. This is when I began to understand just how weak I was. I found out that my weight was only 160 lbs, a far cry from the 240 I had once weighed.

Now that I was awake and slowly becoming cognizant, the hospital began the therapy. There was a speech therapist, who would help me learn how to talk so others could understand what I said. She would also bring up puzzles and things to test my comprehension.

Without insurance the hospital was in a hurry to get me functional enough to justify my release. Now began the process of learning how to walk. I learned that I was partially paralyzed, which would explain why my right leg was always numb and had that tingling feeling you get when your leg falls asleep. It was strange that, as I was being supported, my left leg would move when my brain told it to but not my right leg. I was told that this was due to brain damage and that with time and hard work my brain would rewire itself. I had at first thought that my paralysis was due to my neck being broken, and this was the first I heard of brain damage, which it turns out is my real problem.

The hospital was going to simply escort me out the door with nothing but a hospital gown and have me taken to the Salvation Army, but they located my brother, who agreed to take me. I was released to my brother's care, and he took me to St. Louis where he lived. The hospital gave him clear instructions on the care I needed, including rehabilitation, but he was an alcoholic and had no interest in doing any of it. Instead he put me in a dilapidated building with broken windows and gave me $20 a week to live on.

When I wandered into a hospital months later they were shocked. Upon learning of my condition and situation I was taken to the social worker, who got me enrolled for food stamps and also put me in contact with the Brain Injury Institute. They began working with me, teaching me how to compensate for the effects of my brain injury. Things were starting to look up.

Unfortunately, I had violated the terms of my probation by leaving the state of Ohio. I was extradited back to Toledo. The judge took one look at me and sent me out for medical evaluation. They decided to reinstate my probation instead of revoking it, I suspect to avoid the high medical cost of caring for me. So I ended up on the street wandering homeless. The streets I had driven for over 20 years were all strange and unrecognizable to me. I would walk for hours looking for anything familiar. I found the warehouse where my businesses were housed and after five days of searching found my former secretary's house. I came to find out I use to live next door. She had heard I died in the accident, so it was quite a shock when she answered my knock on her door.

I would spend many hours at the library downtown where, after being taught how to use the computers, I would research who I was. There were articles in the paper about my companies, along with my picture. I knew I had friends but couldn't remember who they were, so I e-mailed the local television stations. One of them (Channel 13, ABC) picked up the story and ran a piece on me called "Toledo's John Doe." When it aired, lots of people called in who knew me and offered to help. Thus it was I got off the streets and was able to greatly reduce the stress that debilitated me. When highly stressed, my brain would freeze up, making it hard for me to even talk.

One of the callers was my first wife, Cherie. It was a shock for her to see me on television, her former husband a disheveled homeless man with amnesia. We hadn't seen or spoken to each other since the divorce over 17 years earlier. Cherie immediately picked up the phone to offer help, for she knew a lot about my past. I even had my age wrong on the program.

When we finally met again we realized we had never stopped loving each other and soon remarried. It's been seven years since the wreck now, and I am doing much better. I inherited my grandmother's farm in Texas, where we work to build a life on my disability check. It's nice because things move slow here, with much less stress. I still have problems socially but found a group that is understanding of my issues and that helps a lot. Cherie is patient and has learned how to help me get things done.

Hope this is helpful.

PART TWO
Every morning I wake up and I don't know what to expect. There is nothing resembling stability, nothing I can rely on regarding my perception and cognizance. Much of the time I do not know what day it is till I look at the calendar or ask my wife Cherie. Then I often forget and need to check the calendar several times during the day. I sometimes wake early with my mind racing and lucid. At those times, which I call prime time, I try to write what is on my mind because I can always go back and read, thereby recovering those thoughts.

You see, my biggest drawback or what has been labeled as my disability is my memory. As much as I despise the label of being disabled, I must resign myself to the reality of it. My mind wanders between something resembling my former above-average intelligence to being confused and unable to make a decision. There seems to be no predictability in this, which drives me crazy.

What is reliable is that when under pressure and stress my mind will degrade, and I will have a greatly reduced ability to process information. Trying to apply humor in this uncomfortable and awkward condition my joke has been, "I am either the dumbest smart person or the smartest dumb person you will ever meet; it just depends on the moment you meet me." Everyone I talk to says they have the same memory problems I do, so it is not so unusual or they understand. I know as we age this is a common problem and that they are trying to relate or be nice or something, but I dearly hope they are not as bad as I am.

Let me describe what it is like for me with the hope of understanding.

When I shower, I often can't remember if I washed my hair so I do it again. I require a written list of things I need to do or they will not happen. If I get distracted while in the middle of a task, I move on to the distraction and the task is forgotten. My life is full of started projects that have never been completed. Some of them are simple tasks that need to be done to enable agencies to help me, such as filling out requests for medical records. I forget where I am going as I go there.

I also lost the ability to time-sequence. What that means is I can be visiting a friend and be there 20 minutes and think it has been hours or be there hours and think I have only been there 20 minutes. In addition, what I remember I have a hard time placing in a time line—whether the event happened last week or six months ago.

I must keep a journal to remember what I did yesterday, last week, and last year. With the journal I can sometimes go back and unlock the memories. The little reminders are like keys that allow me to access the recesses of my mind. It doesn't always work and some memories just vanish. Again it is the unpredictability that drives me crazy. Sometimes I remember things clearly, sometimes not. I suspect this is a factor in people shying away from me or their being uncomfortable, but I don't know.

Despite having been an avid reader who devoured books, it is a great regret that I can now only do so with great difficulty. Every time I pick a book back up I have to start over, for I can't remember what I read before. I have several books I have gotten over the last year or so that remain unfinished. I have just not picked them back up out of frustration. I do occasionally read them with the hope that the information received will come to mind when needed. A vain hope but it occasionally works. I can retain information when I work hard at it. Bible study is one of the few areas in which retention works, for I transcribe it and write thoughts as I study on the computer. I then go back and reread it. Thus it is one area I can speak comfortably on without the freeze-up I go through when stressed and having to process information.

Preseveration is a word I found as I researched brain injury, for it describes a common behavior with TBI (Traumatic Brain Injury) patients. We repeat statements over and over. The main cause of this is simply we forget having made the statement before, so when we repeat it we think it is the first time. Another underlying reason I have this issue is I tend to mentally focus tightly on things, and when I do all else fades. Regardless of the reasons it occurs, it appears to be one of the factors in others avoiding me. Unfortunately, what I tend to remember is the things that bother me, because I mull them over in my mind and with the repetition those things become ingrained in my memory banks. It is hard to have a positive mental attitude when most of what you recall is the bad things.

Because of the memory problem I am always unsure of myself. There have been times in the past, as I worked on rebuilding this mind, that I have said and done things that were not appropriate. As I look back over the early writings that I made shortly after waking from the coma I see a scary disconnection from reality. It is comforting to know that as time passed this came into balance. But this past experience has been a great contributor to my insecurity. In those first two years, control of my emotions was a big problem. Consequently, I now always watch those around me, wondering as I study their reactions if I said or did something to offend them.

Without clear memories of even yesterday, every day is like walking into a new and strange world. I constantly have people who obviously know me say hi, and I don't have a clue who they are. As I walk through a crowd, many faces seem familiar to me, but I don't know if I know them. I have introduced myself to a few to learn I did not know them, and then on occasion I do. When I first came back to Toledo, there were several who would approach me. It became a standard question for me to ask. "Do you know me?" This would surprise them, as few are aware I had the accident.

Here is another aspect of this few will consider. When most think of memory loss, they think only of the recollections of events and places, but there is much more to it than that. Consider that your ability to judge and interact in social situations comes from the sum total of your life experience. Thus you know when to laugh because you can recognize a joke is being told. You know how to read those around you because of the memories of past experiences.

Imagine then that slate being wiped clean. When I woke up, all the world was strange to me. My first experience in this new world was watching TV from the hospital bed and interacting with the nurses. Then I went through many terrible experiences as I began to learn how to act in what was to me a strange new world. These experiences gave me the only background I could tap into, to kind of guess what was to come and what to expect of those I met. It was a strange mix of my unstable alcoholic brother, gangbangers, drug addicts, church people who were both good and some not so good, bureaucrats, bar people, corrupt representatives of the court, and medical professionals. It has been a time of much confusion for me as I tried to understand and function as my mind and body repaired itself.

With only those first experiences since waking up and broken memory fragments of life prior to the accident, it is no wonder I am lost in social situations. Add to that my inability to catch "hints" or understand nuances. I remember one guy who, when I told him my perception of an earlier conversation, looked at me incredulously and stated he was just kidding and could not believe I took what he said literally. This is a problem I will find hard to correct. I do normally take what is said literally, and I try to listen carefully so I don't make mistakes. I often have to ask for simple instructions on how to accomplish a task set before me after having gotten lost trying to process the instructions just given, during which the person giving the instructions assumed I could fill in the blanks.

In my desperate search for something I could rely on, a solid rock I could stand on, a measuring rod I could use to help me understand others and know the correct way to think, I turned to the Bible I had once known so well. I figured that in the Christian realm I could find an atmosphere in which everyone was on the same page. Here I thought I could find friends who could understand and at least hold out their hand for me to grab on the bad days. Here I hoped I would be in a realm where I understood the rules.

But this was not to be. I tried to explain what it is like to be me and was told I talk about it too much. When I asked for help it felt like everywhere I walked many of those I had hoped would bring moral support would distance themselves from me. I could go through a crowd at church and watch some duck away as they saw me approach. I thought it was my imagination and asked Cherie about it to double-check myself as I so often do now. She also noticed this, so I had a sad confirmation that I was not mistaken. I would have rather been wrong. I asked some about this, if I had in some way offended them, and was told by one of the church leaders I made her uncomfortable and she would not talk now. She thought I was mad, so I explained I was just confused.

Part of the problem I have is I no longer possess many of the communication skills most take for granted and seldom recognize because they have had them their whole life. I have a difficult time reading expressions and do not recognize hints and subtleties. I need things explained in simple, clear terms like a child. A child is a good analogy, for children too are developing their social skills and learning to communicate. Another problem I have is my face is usually not very expressive, which some have interpreted as being serious or angry. Guile is an art I lost and have no desire to recover. Unfortunately, it appears in this culture that not having those skills, not pretending to think or act in a way that makes you more acceptable, regardless of the truth, makes one an outcast. Honesty and telling others exactly what I think has caused much discomfort, so I try not to say anything. I'm just not good at putting on a false face, and I don't care to be.

Here are some of the positive parts of the short-term memory loss. I can watch a movie for the first time several times before I recall enough to not be surprised. An old friend has a satellite dish and gets many movies that we watch together. I will go visit and a movie will come on and I will say "Wow, I wanted to see this one," and Allen will tell me I had just watched it a week or so ago with him. So I watch it again, and it still has all the impact and surprises it did the first time.

For me, many moments are like the very first time in my life. I made a list of the "firsts" I have experienced since the awakening. With some of those firsts often come an unlocking of memories long buried or inaccessible because of the TBI. This sometimes comes in a flood of recollection that includes vivid tangible smells, sounds, and emotions. Imagine falling in love for the first time again, with all the overwhelming feelings and emotions. Now add to that a flood of returning memories from a door just unlocked in my mind. Memories of falling in love with the same woman 25 years earlier. My first love ever, our hopes, our dreams, and then our sadness. Now you have a glimpse of what it was like for me to meet my first wife after 20 years of separation, whom I recently remarried.

Unfortunately, as I explore my past and enjoy the floods of returning memories they often fade away into obscurity as fast as they returned, which is why I purchased a recording device to document these memories. I have been interviewing those I can find from my past with this recorder.

Now that we've covered some of the mental aspects, what are the physical issues? I get tired easily and usually have to take a couple of naps during the day. With my neck being broken three times and my back once and a body that has experienced multiple traumas, I live with pain daily, pain that is as unpredictable as everything else. My paralysis is evident during times of slowed mental function, for then I limp badly. I have migraines that vary in intensity; sometimes they are so bad I must darken the room and turn everything off because of increased sensitivity to light and sounds.

My senses also come and go at a whim, so much of the time I have a greatly reduced sense of taste or smell. But then it is so enhanced I feel like a German shepherd able to detect nuances normally lost to most. The smells and flavors I used to take for granted are now at times wondrously intense and bright. Of course, there are times when these moments of enhanced senses are not so wondrous. Things don't always smell good.

Because I rarely experience the sensation of being hungry and can't remember if I ate, I must schedule meals, and Cherie has learned to make sure I have eaten. I can go for days without food and not know it.

I have seizures, which I take medication for now. I experience what I call fading in and out. At these times I mentally slow down, in some cases dramatically. An outward sign of this is found in my speech. I begin to stutter badly and have to search for words. Stress coupled with having to make decisions or answer questions are big factors in bringing this on, but there are times I wake up like this. This I can often hide but not always. What is frustrating is that I have periods of lucidity in which my mind operates at something resembling my former intellect. I am sure this throws others off who see me when I am doing well and then don't understand the change. It is not uncommon for those with TBI to be suspected of using drugs because of this instability. During the slow periods I can get so bad I must be led as a child. Fortunately, I don't get this bad often.

Most of us have filters that allow our minds to weed out all the distracting sights and sounds and allows us to focus on what is before us. These filters are damaged in me, and at times I am overwhelmed by a flood of sensory input. In order for me to accomplish a task I must turn off all distractions. There are times when I'm in a public place I must leave because I am being overwhelmed with this flood of sound and activity. Even the sounds of ventilation, the hum of lights, my computer hard drive, the things you normally can filter, are right at the forefront during these times. When I am going through a slow phase, I tend to brighten up when around others, for stimulus helps activate my mind.

Like all people I want to belong and feel accepted, but this seems difficult for me. Hopefully with understanding will come acceptance. I face a staggering task of rebuilding a shattered life, while at the same time learning how to overcome this injury. I often feel alone, isolated, shunned, and that I am incapable of accomplishing anything. Depression is a big obstacle and is fed by these feelings. Imagine what it would be like to have been on top of the world, running three companies you built from scratch, being able to juggle multiple tasks and issues in your mind, and having friends and respect. Then waking up to what I have described above, to being lost and confused. I would gladly trade off this body and be confined to a wheelchair in exchange for a reliable mind. It is frustrating to experience the lucidity and intelligence I once had and then to slow down and get confused with little warning.

While I can't recall the thoughts and motivation I had when I started writing this, I do know it is a cry for understanding and some simple emotional support. I think the lady I work with at the Bureau of Vocational Rehabilitation suggested I write this, but I can't remember. As I look at the e-mails I have sent over the last two years, I see me apologizing a lot. If this is redundant or not appropriate I apologize in advance but ask that you talk to me about it, which will help me figure things out and not feel isolated.

My blog is walkedwithangels.blogspot.com
Bob Westbrook, Stanton, Texas






arrow Brain Trauma

Support provided by

For new content
visit the redesigned
NOVA site