Do you, or do you know anyone with a brain injury? How has it changed your life?

[Saul Raisin]

I would like everyone to share their stories about brain injury. Tell me if you know anyone that has one, how they acquired it, and how it has affected you life. If you have a brain injury please share with me how it has changed you life.

Thank you,

-Saul

[Katherine]

I had a fall at work. It is unknown what came first, the seizure or the fall, but I ended up having 2 seizures, a fractured skull, swelling and bleeding. I am still off work. At first I could not walk and was in tremendous pain in my back, hips and head. At first I did not understand what had happened, I took my meds because my husband told me to. Every time I woke up I had to be reoriented. I still can not keep track of seasons, dates, time. I see a speech therapist 2 times each week. I was very lucky as I am an RN and the accident occurred at work. I immediately had hospital staff helping me. My husband is also an RN at the same hospital in the emergency room, so I was among friends the whole way. I work in the labor and delivery area and because of high security my accident/fall/seizures and all of their responses were on security camera video. My husband took me to view that and eventually it helped me to accept what had happened. My life and the lives of my family have been turned upside down. I also have non-hodgkin's lymphoma and receive maintenance chemo, this had to be delayed a month during my healing. Sometime after my accident my mom died. We were very close. I do not exactly know the date...I think I don't want to and that is why I haven't written it down or pursued the activity of working to remember it. It is enough to know she is gone. Financially we have been hit hard. I know receive what equals the amount of one 8 hour shift for a two week period. My husband works hard, he is working 2 jobs to try and keep up. I desperately would like to return to work. I probably will never return to the status of being able to manage a patient care situation. I no longer drive. I attempted today, but it was clear I was not safe as I was unaware of movements to my left and right. I thought it would be okay as I could turn my head, but without peripheral vision I am unaware of movements and do not turn to observe them. I am able to ride my bike. I use public transit and I am very happy to get about this way. My oldest son now has his driver's permit and we get around if needed that way. My daughter and her new husband help out where they are needed and without my family's support, I don't think I would have made it as far as I have. My youngest son is very protective and often he will see me leave on my bike for some alone time and he will follow at a safe distance and call out to me for cars approaching or any dangers. That has really improved also, I really can now get about on bike rides on my own and I enjoy that time immensely. I do display ocd tendencies (obsessive-compulsive disorder) and respond to things in a very literal way. My speech at times is slow and hesitant although that is improving. The difficulty there is when you do not appear to have any problems, people assume you do not and they seem to get frustrated with me much quicker than when it is obvious that something is not right. One of my biggest frustrations is when I say "I don't understand your question, or I don't understand what you want or are asking." People tend to then yell their request at me...I am not deaf, I can not process all the time. I have learned when flying to preboard as all of the commotion and noise during boarding slows my processing way down. My life has completely changed, I do get frustrated and sometimes angry at my predicament but really...at least I am alive and around to enjoy my children, my family and friends, and my marriage. My best advice...take it slow, realize you are different...not bad, just different, and try to find others in the same boat so you don't feel alone.

[Brent Oxley]

My name is Brent Oxley. I grew up as a cyclist and like most have had my share of wrecks. As a young cyclist, around the age of 15, I had my most serious falls. Soon after I had a couple more. Little did I know at the time but I had severely damaged my brain, primarily due to the fact that it was still developing at my young age. When I was 16 years old my life changed forever. I had my first seizure and was hence diagnosed with epilepsy forever. For several years I suffered from seizures and had to learn to live with them. I was determined to live a normal life and not let them stop me. I graduated high school and then went on to graduate from Clemson University twice. Some of the hardest times were waking up a particular morning after having a seizure and making myself go on to class even though all my energy had been drained from the seizure. It was a sense of sheer determination. I never looked at myself as having a disability. To me seizures were nothing more than a neusience. Throughout all this time I never lost my love for cycling. I continued to ride despite the fact that cycling was the reason I had to live with epilepsy.
Like most after college I got my first real job teaching high school. Even then I had to make myself go into work after having a seizure. I was lucky in that I rarely if ever had them during the day. But anyone who lives with seizures can tell you how horrible they make you feel afterwards.
When I was 25 years old I had my first brain surgery. A company called Neuropace out of California implanted a device into my brain which sends electrical impulses to the area of the brain that generates a seizure when it feels one coming on. It was the most painful thing I've ever gone through. I was the 5th person in the world to have this experimental surgery which has not yet been approved by the FDA. But my family was desperate to try anything. The seizures continued for some time but by that point in my life I had learned how to live with them. Then when I was 27 my doctors decided to change my medicine. Since then I have been seizure free. I am now 29 and have a wonderful life. Overcoming something like epilepsy makes one very appreciate of life and see it in a different light. I still live with this thing in my head and know that I will have to have additional brain surgeries in the future, primarily to replace the battery in it. I feel that God has truly blessed me and has great plans for my life. For the longest time I used to ask "Why me?". But now I know. God gave me epilepsy to make me a stronger, more determined, appreciative individual and one who is grateful to finally live a normal life.

[Ted Denning]

My recovery from my TBI has been a blessing for me. On August 7 2007 I was riding my bike on a weekly route with the cycling community I was a part of. I am told I was pushing my limits trying to keep up with riders who's skill levels were far superior to my own. I headed into a bend in the 2 lane road, traveling too fast to make the turn. I started to cross the center line and saw a pick up truck headed for me from the opposite direction. I tried to swerve out of the lane to miss the truck, but I was traveling too fast. I was sideways when I collided with the truck. The impact threw me down in front of the truck. The truck came to stopping with me under one of the rear wheels. The driver pulled the jack out of the truck and jacked the truck up to lift the weight off of me. I have no memory of the accident itself. The experience has also left me with no memory of the 9 days prior and 7 weeks after the accident. I spent 11 days in a coma and 3 weeks in the ICU/Neuro-Trauma. I was transferred to the shepherd center where I spent 1 month inpatient and 4 months outpatient rehabilitation.

Prior to my cycling accident, I was driving my life into the ground in college. I was neglecting my grades and emptying my bank account whenever I had something in it to empty, driving myself into debt in every meaning of the word. Since the accident, I have been lucky enough to recover back to riding bicycles and returning to college. My course of study has changed from Sport Management to Recreation Therapy in hopes to work with brain injury survivors in their own recoveries.

In addition my outlook on life has greatly improved. Experiencing my TBI has guided me to become the type of person I am very proud to be. I look forward to helping other brain injury survivors and their families with advice as only a brain injury survivor can.There are still many many things I have yet to learn about brain injuries apart from my own, but I am eager to inspire hope and be a diplomat of encouragement as someone who has been extremely lucky to recover more than anyone had hoped I might be able to.

[DAVID DEMERY]

I am David Demery and in 1978 I was run over by a truck after going to a friend birthday part because they dropped me off on the wrong side of the road and I crossed or didn't cross the street to my parents house because the truck ran over me. I have a trache because of the accident and one functiong eye. I had a concussion and brain injury and they cut a small hole in my head to reliev the pressure. I later dropped out of high school and that didn't feel right so I got my GED and then went to technical school I went to ITT technical Institute and recieved a associate degree in computer aided drafting and then got a bachelors degree in computer visualization technonogy. I have been working a a survey office but have only been able to earn minimum wage after 7 years there. So the head injury has affected me. I am a big cycling fan and hope to someday take a bike ride with Saul. I got in contact with Saul because I met Dave Shields at the Tour de Georgia and he wrote Sauls book. Also because Saul went through something sort of like me. I just put a picture out of Bicycling magazine on my wall that has Saul riding and it says Sometimes Survival is a victory and that gives me strength. I still live with my parents and I am now 38 but this accident has taken alot away from me but cycling has saved me mentally at least.

[Timmy Duggan]

Like Saul, I was involved in a serious cycling crash in a professional bike race. I was riding in the Tour de Georgia, preparing for my first Grand Tour, the Giro d’Italia, only weeks later. While descending down a steep hill, a rider in front of me crashed into a deep crack in the road, and I ran into him, sending me flying onto my head at 50 mph. I was unconscious and convulsing. I was rushed to the hospital and diagnosed with a subarachnoid hemhorrage, a dangerous collection of blood on the brain surface, leading to a subdural hematoma, or critical bruising of my brain. I also broke my scapula and clavicle. I spent a week at Athens Regional Medical Center with the support of my wife and parents and my Garmin-Chipotle Cycling Team. I don’t remember the race that day or anything for three days after my crash. It was really scary the first couple days as I was still very much out of it, complaining of very bad pains, and the pressure on my brain increasing almost to the point of requiring surgery. Luckily, suddenly on the fourth day I started feeling a lot better. I could walk around, talk, and remember most things, although I still slept an enormous amount. Things improved quickly and I was able to travel back to my home of Boulder, CO soon thereafter. I began testing and therapy at Craig Hospital in Denver, an institution well known for their expertise in brain trauma and also their work with athletes. At this point I was feeling pretty well, just tired a lot, but I felt my brain was working pretty normally. I excelled amazingly at the physical tests of balance and coordination. On cognitive tests I scored with in the normal range on most things but was pretty impaired in reaction time, even though I couldn’t tell myself in my everyday life. This is when a brain injury becomes tough, when you think you are a certain way, but tests or doctors or family can tell you that you simply aren’t the way you think you are. I came to realize the seriousness of my injury. I missed out on the scary serious part, back in the hospital, because I couldn’t remember anything. That affected my family and friends more than it did me. My wife has had a really hard time because I have been a different person the last several months, and we have really had to work a lot on our relationship. It took a lot of education and testing and talking to realize the severity of my situation. I also realized it was hard to trust anyone, even myself. And when I tried to learn more about my injury and recovery, I found that really nobody, not even the doctors, could tell you anything concrete about what things will be like a few weeks from now, months from now, or even years from now. So I really learned that the one person I should listen to is myself. If I felt I was ready to move on to the next step in my recovery, I did it. I took what the doctors said into account, but I didn’t let their diagnosis tell me permanently what I could or could not do. It gave me much more ownership over my own recovery.
My ongoing symptoms throughout my recovery have been typical of TBI. Deep fatigue, especially if I do too much mentally or physically, is one factor. Even bigger is a change in the way I process emotions. Through my work with a psychologist, I really have had to re learn over the course of several months a lot about my mental processes and my ways of dealing with things that I had perfected in my head over the last several years. It took, is still taking, a lot of work to get that last 10% of mental capacity and reasoning back, and that’s critical, because those few percents are what make me who I am! Saul really imprinted on me that the recovery process is a real rollercoaster, and when I accepted this and all the ups and downs it made it easier to understand. Some days I feel really good, happy and confident and strong, and other days I just want to stare at the wall and cry. You have to just accept what you feel and where you are, and move on from there. You can’t dwell in the past or in what you hope to have in the future. You have to take baby steps from where you are now, and approach those little goals as if they were the biggest and most important things in the world.
Probably the best therapy for me has been the bike. I even started riding outside again a few months before my doctors wanted, but that is where I can really let me mind relax and be empty and that’s where I found the most healing. Also, I have really rested as hard as I can the past 6 months. The biggest thing is time and rest, and not pushing myself too hard too soon. I am even taking a college class this fall to stimulate the brain a little more! I am really excited to begin training again this winter to prepare to come back to racing full time next Spring. Having this injury has made me pay more attention the rest of my life outside of competitive cycling, and I can find more pleasure in the little everyday things. Also, I really can't imagine any moment in a bike race that will hurt more than the last 6 months, so I think cycling will feel a lot easier after this!
I also just want to let everyone know that I am more than available as a resource to anybody who may have questions about TBI and recovery. One difficult thing I found in the process was the lack of people like Saul to talk to and get advice from. Listening to someone who had been through it and knows what goes through your head in that situation is really therapeutic.
Thanks
-Timmy Duggan