Chicken Soup for the Soul: Recovering from Traumatic Brain Injury

The Chicken Soup for the Soul: Recovering from Traumatic Brain Injury book released today.  It contains 101 survivor stories of brain injury recovery, including Yes, I’m a Train Wreck, originally published as Jon’s Story here on this blog.  You can purchase it through www.amazon.com  

Jon Blair asked me to submit his story to the Chicken Soup books and he wasn’t the least bit surprised when his story was selected.  His determined, positive attitude makes the unimaginable happen for him.  He just doesn’t take “no” for an answer.  Congratulations, Jon!  And thank you for the nod in the author’s section.

You can read Jon’s Story on this blog.  It is the very first story on the blog roll.

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Remembering Who I am – John K’s Story.

 

For most of my adult life, I have suffered from depression, but, it wasn’t until I received shock therapy that my life went out of control. I suffered two strokes and a heart attack while receiving this therapy.  I also suffered from anoxia, died, and was brought back to life by a team of doctors.  I was in a coma for two weeks, and, when this was all said and done, I was left legally blind with memory problems and a brain injury.

I have no recollection of the event that caused my brain injury.  It compromised my memory so I often rely on others to remind me about what happened in the past and in the present. That is why, with the help of some dear friends, I put together my memoir.  It is this memoir that helped me realize something important: that regardless of some major setbacks along the way, my life is loaded with fulfilled dreams and accomplishments.  I work hard to remember these accomplishments.  Why? It is easy to be upset about the losses my traumatic brain injury caused.  It is just as easy to remember the accomplishments I’ve achieved. They help me realize that I am still the same person I always was. No brain injury can take that away.  I hope my memoir encourages you to write about yourself, too.  If you do, give yourself plenty of credit for a life well-lived.  You deserve it!

Here are some of the things I have learned from putting together my memoir:

Even in the beginning, my life was different from most. I was adopted from an orphanage by a wonderful woman who taught me to live life to its fullest. My birth name was John Sloan and I was born in Providence, Rhode Island.  I celebrate the anniversary of my adoption every year on Valentine’s Day. One day I hope to meet my biological parents and sisters.

I skipped kindergarten and first grade because I was bright.  Schoolwork came easy to me and I always had a wild sense of humor. When I was in my twenties, I worked as a steward and a medical corpsman in the United States Navy. I remember being bored one day at work so I hopped up on an examination table and put my feet in the stirrups that women use when they have pap smears.  I started singing at the top of my lungs, “back in the saddle again”.  The door opened and it was the doctor!  I was so embarrassed, but, I did anything for a laugh back then.  I am still bright and I still love to laugh.

After my naval stint,  I attended two culinary schools. I had a cheesecake business which was named Grande Finale.  I used to make wonderful cheesecakes and I have kept a photo of one in particular as a treasured memory from the past.  It was my sister’s wedding cake and it was made of white chocolate.  That cheesecake recipe won first prize at the New York State Fair recently!  I have another talent, too, that has made my life enjoyable and fulfilling. I sing opera.  I sang in Verdi’s Rigoletto with the Syracuse Opera.  I also sang in Verdi’s Un Ballo Maschera with my very dear friend, Patty.  This all reminds me that I am still a talented person.  No brain injury will ever take that away.

When I was first injured, I was a long way from believing I would ever cook or sing again. I was sent down the Hudson River to Northeast Center for Special Care.  There, I had a speech pathologist and I had to relearn how to speak, feed myself, and even how to walk.  I returned home to Syracuse after many weeks and spent much of my time at The David Clark Learning Center.  Often, I would walk home absolutely in tears because I was just so frustrated.  Trying to get back to some semblance of normal was all very hard work, but I got through it. What did I learn here?  I learned I am tough as nails when I have to be.

When I turned 50, I lost two friends that I loved dearly. Shortly after that, I was diagnosed with a severe depression that was exacerbated by the grief I carried.  If this wasn’t bad enough, as a result of my addiction to cigarettes and my brain injury related loss of vision, my house caught fire and I lost everything I owned – and nearly my life.  I continued to have problems with depression, mostly because of the way my life had been irrevocably altered.  Suicide had crossed my mind, but I realized that I had too much to live for and I would be missed by too many people.  This realization, in itself, still keeps me going today.  To be loved is a major accomplishment in life.  I hang on to that thought when times get tough.

Yes, my brain injury has been challenging, but it also provided me with a surprising benefit.  No one can really explain how this happens, but many survivors find they develop new abilities, which was the case with me. I developed a strong psychic ability when I was 50 years old, right about the time when I was diagnosed with depression. I had always been an intuitive person, but after my brain injury, my abilities were profoundly enhanced. I took lessons to learn how to control and access my gift.  It drove me nuts at first because I was picking up everything, but then I learned how to use my gift at will. I used to do psychic readings at psychic fairs, but I don’t do them anymore because they are too tiring for me.  I am now a retired “medium”. People used to ask me how I do a psychic reading.  I tune into my spirit guide.  We all have spirit guides.  I’ve actually seen mine in my mind’s eye, and my spirit guide is an angel.  This is why I collect angels and wear an angel pin all the time.  Here, I learned that a brain injury can also make us smarter!

I live alone, which I enjoy, but I have people around me all the time because I get lonely.  I don’t watch much television because I find it boring and I get bored easily.  I’m high functioning and high maintenance.  I have expensive tastes and enjoy fine dining in fine restaurants.  I like to wear nice clothes and I appreciate fine art and music.  These things about me have always been true. Even though I need help, I’m independent in many areas of my life.  I obviously don’t drive, and don’t know if I’ll ever be able to drive again.  This is OK – I have learned how to ask others for help, which was a giant step toward being happy and accepting my life as it is.

 

Jade, my great helper
Jade, my great helper

My Persian cat, Jade, who is black with green eyes, was abused as a kitten.  But, thanks to lots of patience and kindness, she is now a pistol and a lot of fun.  She helps me get through the bouts of depression that still plague me from time to time. She reminds me that I was, and still am, a person who loves life and all the pleasures it has to offer, be it singing, cooking, animals, or all the dear friends who fill my world.  She has taught me how to love again.

For the next chapter in my life, I just want peace of mind… and a box seat at an opera house called “La Scalla” in Milan, Italy.  Will I get this?  I think so!  Because I think my life is interesting, unique, and always full of surprises.  Mostly, though, I want to share my experiences with others.

I hope my story encourages other brain injury survivors to never give up.  Surviving a brain injury is an accomplishment in itself!  Just remember this!  And, always remember that you are the same person you always were.  If you review your accomplishments and review them often, you will see you are a gifted being with a joyful life ahead of you.  Creating your own memoir can help you know who you are.

Written by John K. and Paula Schmidt for The Brain Injury Association of New York State

www.bianys.org

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Advise from John K.:

To my friends: There are so many people I would like to thank. Though I can’t name you here, you know who you are!  Thank you! And thank you to those who encouraged me to write my memoir.

To my fellow survivors: Remembering uplifting cliches can help you stay positive. I post many on my wall.  They help me get through the difficult times.  Don’t give up, don’t quit. Keep on keeping on. Don’t look back – leave the past in the past. Don’t sweat the small stuff.  You get the idea.  Also, music and laughter are universal so sing your heart out and laugh til you drop.  Love to you, John

 

Amara’s Story

Amara H.  was searching for a way to fulfill her life despite her brain injury when she decided to take a class in shoe making.  Here is her story:

Last year I finished my MFA at the School of the Art Institute. I was in a three year program, and just before the start of my final year, I was in a car accident. The injuries that I sustained meant that in order to continue with, and finish, school, I would need to drastically alter my way of working and what I was working on. I took one class: shoemaking. It stuck, and I ended up focusing entirely on shoes. My thesis project was shoes (Muscle Memory). I worked extremely hard to graduate, and in mid-August of 2013, I finished my coursework.

I knew that I wanted to continue to make shoes, but in order to do that, one needs machines, tools, space and time. I thought that it would be too hard to try to wrangle up the equipment that I needed in Chicago, so I returned to Minnesota where I have family and friends.

The day before I left Chicago, I found an ad. Someone was looking to sell the contents of an entire shoe repair shop. All the machines, all the hand tools, all the tacks, shoelaces, and heels. I jumped on it, and within a week of finishing school, I had a shop. A really really nice shop.

The first month was mostly organizing and unpacking. It was slow and exhausting and dusty. I’m not very good at organizing, so it took a bit longer than I would have liked, but slowly things were taking shape. The second month, I decided to try to make a few things, and got re-inspired. Shoes, bags, shoes, and bags. I was working, and it felt so wonderful to be in my space, quiet if I need, loud if I want, and going at a pace that works for me.

I am keeping this blog because my memory is sometimes poor, and it’s nice to look back. But, more importantly, so many people have helped me so far, and reading accounts and seeing working processes of people doing something similar has been very helpful. So, here we go!

“I think of these shoes as being a document of ongoing recovery. My life and the way that I understand and identify myself has changed drastically since the accident last summer. But, beyond my own narrative, my hope is that others will be able to identify with some of the movements, shapes, and sensations that the shoes cause. We are all perfectly unique in our experiences, and also completely similar. While these shoes are born out of my own storyline, I am not unique in dealing with chronic pain, memory loss, or the healing process.”  Amara

You can view Amara’s shoes, read her blog, and learn more about Amara at her website:
story written by Amara H.

Fishing For Hope, A Daughter’s Story of Traumatic Brain Injury.

I have always been a daddy’s girl. Right from the start, I wrapped my dad around my finger. My dad was my superhero – there was nothing he couldn’t do. He was always there to take care of me and to make things better. Little did I know that I would soon become his superhero instead.

My dad, Ken, was such an outdoor’s man. He loved everything about nature. He was an avid hunter, loved to take rides through “the great outdoors” as he would say, and loved to go fishing.

It was early Friday, June 13, 2008. I was at work discussing various things with a co-worker who told me she had a lot of land and a great big pond that my dad could go fishing at. I was so excited to tell him! My dad was at my house babysitting my youngest daughter, Savannah, who was nine months old at the time, so I went to see him at lunch.  My dad and Savannah were sitting on the rocking chair together, as usual. I told him about the pond and he was so happy. My mom usually went to my house after she was done with work at 1:00 to take over the babysitting duties. That day, though, she brought the kids to her house while my dad went to check out his new fishing hole. I picked my kids up there after I finished work.

When I arrived at my mom’s house, nothing seemed different. The kids were playing and my mom was playing with them. My dad wasn’t home, but that wasn’t unlike him. Then the phone rang…

I picked up the phone, “Hello?” “Is this Mrs. Coons?” the man’s voice asked, “This is the Guilderland Police. We need to speak to Mrs. Coons.” I passed the phone to my mom, hoping in the back of my mind that my dad had been walking in the woods, as he usually did, and just ended up  trespassing on posted property. No big deal, right? But this was not the case. My mom took the phone and her face turned white. She began crying hysterically, “Daddy has been hit by car. They are sending an officer over to take us to the hospital.  They don’t’ know any more than this.” I was standing outside on the patio, and threw up. Something deep down told me things were now different because an extremely horrible event had happened. Would I ever see my dad again? Would I be able to talk to him? What would he look like? A million thoughts raced through my head.

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I called my husband at work and told him he needed to meet me at Albany Medical Center. He sent his mom and his sister to watch the kids. Suddenly, the Guilderland Police showed up at our house and drove us to the hospital.  We found out that my dad had parked his car on Western Avenue by the horse stable and crossed to look at what he thought might be a fishing pond. He was making his way back across to his car, and that is where a motor vehicle struck him. He bounced off the hood and windshield of the car before slamming hard on to the pavement. The police wouldn’t tell us what condition he was in.

We finally arrived at the hospital, a five minute car ride that seemed like five hours. The doctors and nurses told us that my dad had substantial road rash down his legs, arms and side.  He also had a large gash on his head, but they didn’t know how severe he was. Later we learned he had suffered a traumatic brain injury.

We had many mixed emotions during the next few days.  My dad was unable to communicate with us except in his own made up language. He knew what he was saying, but the words were coming out jumbled and twisted. We depended on white boards, markers, sign language, and guessing games to know what he was trying so desperately to get across to us.

Days turned into weeks and each day got harder. His language slowly started to come back, though not 100%. His temper and anger issues were out of control and he had his own vocabulary for many things. The staples they put in his head he called pistons.  He transferred to a rehabilitation facility, spending only 2 weeks there before being released much too early.

When he was home, his anger issues were a main concern. He could not be left alone because he could not do the simple things you and I take for granted. Things got to their breaking point one night after my mom, overwhelmed and exhausted from being his primary caregiver, passed out cold. Thank goodness I was there, as I was able to call 911. I called my moms’ best friend and her husband who came over to help. My dad couldn’t process the information and thought his wife had died when the EMT’s took her out on a stretcher. He then went to the kitchen, pulled out a knife and tried to commit suicide. Everything happened so fast. Luckily, my mom’s friend’s husband was able to bear hug him, wrestle the knife out of his hand, and hold him while I dialed 911. The police came and I tried desperately to explain that my dad had a brain injury. “Tara, help me, don’t let them take me away!” My heart broke into a million pieces as they took him from his house. Those words still haunt me to this day.

My mom was in the hospital at St. Peter’s and my dad was down the road at Albany Medical Center. I shuffled back and forth, taking care of the both of them. The staff admitted him to the psychiatric ward as a holding place until we were able to find someplace more permanent. We were fortunate enough to find the Northeast Center for Special Care in Kingston, NY. This would be his new home for 15 months.

He received so many services at this rehab hospital, and learned many wonderful tools and skills to help him regain his memory, function independently, control his anger and temper issues, and (as he would call it) to help “fix his brain.” He found comfort in art therapy. He covered his walls with over 300 pieces of artwork that he had done himself – drawings, paintings, colorings, etc,. He also made necklaces out of anything. His favorite item? Lobster claws. He would clean out the lobster claw (lobster thumb as he referred to it) and string them together with beads and chains to create necklaces, painting the lobster claw and adding glitter when he felt it needed a little extra bling. He made about 50 of them. My mom and I, my daughters, my husband, my brother John and his family would proudly wear them when we went to visit him. That brought him so much joy. My dad was lucky enough to have some of his art work on display at the Brain Injury Association of New York State’s annual art exhibit. He was so proud of himself and what he had accomplished.

My dad was always happy when I showed up out of the blue to visit him.  He was about an hour away from my house so I would go there as much as I could every weekend and sometimes during the week. To see the look of happiness and the tears roll down his cheek when I would come in and yell “surprise!” was precious to me.

When he was finally able to come home after 15 months, I decorated the house with “Welcome Home” signs, banners, balloons and a cake. I really tried to make him feel loved and special. Those 15 months were so long without him.

Right after my dad’s brain injury I reached out to the Brain Injury Association of New York State and Mayor Jennings. I needed reassurance for my dad and for my mom and I, and we all needed the support. I worked with Mayor Jennings to have my dad’s birthday, August 25th, proclaimed as Traumatic Brain Injury Awareness Day in Albany, NY. I have created Fishing For Hope (which is also on Facebook) in order to raise awareness about traumatic brain injury. I have told my story to other people affected by TBI and joined support groups. Thanks to a multitude of helpers, my dad made an incredible comeback. Though he had some permanent set backs with his brain injury, he discovered that there is hope and life after brain injury. And, there is love and support.

By some strange “coincidence”, in 2001, nearly seven years before my dad’s accident, I had witnessed a car accident in which an 18 year old girl was struck by a car while pushing her disabled vehicle across the street. She had internal bleeding and a brain injury, and was soon pronounce brain dead. I held her in my arms in the street while she lay dying. Afterwards, I set up a memorial at the tree where the accident took place. My dad later told me that he had visited that memorial at the tree about a year after I placed it.  The memorial was only a mile away from where he was hit by a car. I believe he had an angel on his shoulder that day and her name was Mary, the girl that died. She was there with him and saved his life.

My dad was diagnosed with leukemia in March 2011 and died 4 weeks after his diagnosis. He wasn’t able to communicate much after he was admitted to the hospital, but he was able to tell me he loved me before he died.

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I miss my dad every second of every day. I know he’s looking down on me and is proud of all that I am doing in his memory. We are constantly promoting traumatic brain injury awareness in his memory. The more we can get the word out about how to prevent brain injury, how to support survivors, and how to support the caregivers who take care of these special and amazing people, the better.

I am blessed to have had my dad for 29 years, and I will continue to honor his memory in the most positive and loving ways.

written by Tara H. for The Brain Injury Association of New York State    www.bianys.org

photo 4A message from Carol, Ken’s wife and caregiver:

My husband is 18 years older than me.  He was my best friend and always will be.  Being his caregiver after his brain injury was one of the hardest things I ever did. It was frustrating at times but it was one of the most precious times of my life. We were a team.  He depended on me for so much.  Helping him through his recovery was a journey with lots of winding roads and many hills to climb, but we did it together. It made us stronger as a couple and our love grew even more.  I was his caregiver again when he was diagnosed with leukemia until the day he passed away. Our love took a path I never expected it to take with the brain injury.  He changed, I changed, and we changed together.  Through it all we took this path hand in hand as one, and that is how I will always remember him – my partner, my love, hand in hand.   It’s so hard without him now. I would do it over again in a second. I carry him with me in my heart and everywhere I go.

Mike’s Story

Survivor Mike “Pedal Monster” Heikes, has a remarkable life.  Not only is he an accomplished cross-country cyclist who tirelessly promotes TBI awareness, he is also the founder of Helmets for Kids and a proud recipient of a 2002 Jefferson Award. 

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You have all heard the saying, “What the caterpillar calls the end of the world, the master calls the  butterfly.”  Well, for me, September 4, 1982 was the day I left my caterpillar life forever and began my wild adventure as a survivor of traumatic brain injury.

Here is my story:

I was a hard working kid with a 3.5 high school GPA, 2 jobs, a scholarship to my local college, and a great, promising future ahead of me.  On the Saturday before I was to start college, I rented my first apartment and moved away from home. I wasn’t even away from home one night, though, when I made a mistake that almost cost me my life.

My friend, Marty, and I, both just 18 and not old enough to drink in Minnesota, bought some beer at a convenience store.  We drank and celebrated in my new apartment then, hungry and restless, we drove to Perkins Restaurant to get something to eat.  I worked at that restaurant so I knew everyone on shift that night.  Before we drove away, I told one of my fellow employees that Marty and I had plans “to go flying.” Yes, we would go flying alright.

Marty, had a 1970 Mustang that had the rear end jacked up with big wide tires.  I had a 1974 Corvette that I loved to race on the curvy highway that led to my parent’s house.  My record was 80 mph, but tonight, Marty wanted to see if his Mustang could beat my Corvette.  It was 2:15 a.m. when we sped out onto that same familiar highway.  We hit the curves at over 100 miles per hour and that is when Marty lost control.  His Mustang skidded sideways, rolling over several times before coming to a stop – appropriately in front of a cemetery.  As we just found out, my Corvette handled the curves much better than his Mustang did.

Fortunately, Marty was not badly hurt, but, I couldn’t say the same.  My body was thrown through the closed passenger window and slammed onto the cold, hard pavement.  Marty climbed out of his now totaled car and ran to the nearest house to get help for me, hammering on the door until someone answered.  The couple inside had already heard the squealing of tires and a sound they described as “a tin can being crushed.”  They had immediately called an ambulance.  It arrived in record time, but, by then, I was already lying flat in the road, soaking in a large puddle of my own blood.  That bloodstain would be on the highway for several years until the road was resurfaced, an eerie reminder of how close I came to being buried in that nearby cemetery.

When the left side of my body hit the asphalt, my brain rebounded, slamming into the right side of my skull. The impact caused bleeding in my brain which caused blood clots to form so I wouldn’t bleed to death in a matter of minutes. All that was visible of my face was the very tip of my nose.  My head was one large, black watermelon.  I had subdural hematoma on three levels, with the one at the base of my brain causing the greatest concern.  I needed surgery, quickly.

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It wasn’t until four months after surgery that I finally returned home to my parent’s house.  Before I left St. Luke’s Hospital, the staff asked me what kind of problems I thought I would encounter after my discharge.  I had no idea what they were talking about!  I had planned to resume my life where it had been interrupted by starting college again.  But, as I had already found out, life throws curves. I knew as soon as I returned home that I was not the same kid who left.

That first night home, I cried myself to sleep.  Changes were now hard for me to adjust to and I missed the commotion of the hospital setting.  I knew I needed to have a better attitude about the challenges that life was presenting.  I knew I had to have the attitude that “what does not destroy me will strengthen me”, so I went to see what was left of the car.  Marty’s once powerful mustang was now a ball of tangled metal, making me realize just how fortunate I was to have survived such a horrific crash.  Sometimes, when I think about my accident, I wonder if I should consider myself lucky, blessed, or just a credit to good medical care.  I may not ever know the answer to that question, but I do know that I have been given special gifts that I will always treasure – my life and the people who loved and cared for me.  It doesn’t matter what happens to us in life, what matters is that we make the most of what we have.  And that is exactly what I planned to do.

I held a series of jobs over the next few years. I worked as a wheel chair pusher, a dishwasher, and a prep cook, to name a few.  I even tried working at my old Perkin’s job, but my short-term memory problems got in the way and I didn’t interact with people as well as I used to.  One job performance evaluation commended me for using notes and lists to insure that I completed my work, but not everyone understood that I didn’t deal with life on the same terms as they did.  Regardless of how hard I worked, I was often fired.  After being fired from Perkins, I was completely discouraged.  The neurosurgeon who had performed the surgery that saved my life asked me, “What are you going to do now?”  I told him, “I am getting a social security disability check and I live at home so I don’t have to work.”  He was upset with me because I had made it this far and now I was giving up.  The look on his face said it all, and I thought, how can I let this man, and all of the other medical professionals who had put so much time into my recovery, down by giving up?  So, I found another job and have had a job ever since.  Thank you for that push, Dr. Johnson!

I never thought that I would be scrubbing toilets as a living for 25 years, but, I also never thought that I would be a survivor of brain injury either.  Stuff happens.  I take pride in what I do, even if it is menial and repetitious work such a cleaning a toilet.  Maybe it takes me a little longer to do things because of my brain injury, but I try my hardest at any challenge I’m given.  I think that sort of attitude was beneficial in my recovery.   It also set the path for the surprising life that was still in store for me.

mike and bike

Eight years after the accident, a glitch in the system at my local DMV caused me to lose my driver’s license.  It took two weeks for the problem to be corrected, but, in the meantime, I needed to get to work so I bought a bicycle.  Growing up on a farm in Minnesota didn’t give me many opportunities to ride a bike. The only thing I really knew about bicycles was that they had two wheels so this was something new for me.  Gratefully, those few weeks and my new bicycle changed my life forever.  Before I knew it, I was riding hours a day.  I was riding so much that I grew to hate driving my car.  Besides, I did some of my most profound thinking while I was riding my bicycle.  It is proven that exercise brings more oxygen to a person’s brain, which enhances mental clarity.  I could certainly use all the oxygen I could get.

As the fall of 1992 approached, I realized by looking at my ride logs that I had ridden every day since July of that year. Even though winter was coming on, I decided to see how many more consecutive days I could ride in Minnesota.  Those of you who know what Minnesota winters are like may be inclined to call me crazy.  Well, I don’t blame you for questioning my sanity.  I, myself, questioned my sanity on world-wide television.  KXJB Television, Fargo, North Dakota did a story on my winter bicycle riding.  CBS picked up the story and the story traveled around the world.  People as far away as India heard me question my sanity as to why I ride my bicycle in Minnesota during the winter.  But, I ride anyway, covering over 20,000 miles in some years.  And to think that doctors never expected this brain injury survivor to walk again!

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When I started riding my bicycle in 1990, I could only ride a short distance before I needed to rest. I could not imagine that I would someday ride over 3000 miles in one month.  I could not imagine that I would ride 21,754.71 miles in one year and over 150,000 miles in the next 17 years, or that I would ride in all 50 states and all of the bordering Canadian Provinces, raising over $100,000 for charity.  And I certainly never imagined that I would start my own organization and raise enough money to purchase and give away over 2000 bicycle helmets to prevent brain injuries like mine. But, that is exactly what I did. Never underestimate the abilities of a brain injury survivor when they put their mind to something.

For me, the hardest part of the bicycle rides across the United States was not riding my bicycle thousands of miles.  The hardest part was not climbing up mountains or riding across deserts.  For me, the hardest part about riding was dealing with my short-term memory deficit.  Remembering when to turn, remembering which way I was going after stopping for a bathroom break, and, in general, remembering all that was required for me to remember, became problematic.  More than once, I headed off in the wrong direction and more than once, I got lost.  The obstacles that I encountered because of my short-term memory deficit, though, soon became opportunities to show people that we, survivors of TBI, can accomplish things in the world of the able-minded.

My biggest goal in life was to ride in all 50 states, and, by 2001, Alaska was the only remaining state left for me to ride in. Fortunately, I also had another goal left.  I told my girlfriend, Teresa, that I had to ride in all 50 states before I got “serious”.  In July, after I toured the great state of Alaska, I was finally ready to act on my promise. I went to Lake Alice, the place where we had our first date, and posted signs that read, TERESA, WILL YOU MARRY ME? and signs that read YES and NO. Since I had mentioned in many press interviews that I would propose to Teresa once I hit this goal, I felt it was appropriate to invite the media to the proposal.  I didn’t think the press would come, but, to my surprise, I received five messages from area media wanting to cover the proposal.  WOW! I could not back out now!  It was not until that moment that I thought, What if she picks the sign that says NO?   I would be inviting the media to see me get turned down!  Dig hole, bury head!  Gratefully, right there, on Valentine’s Day and in front of all of Minnesota, she picked the YES sign.   Our wedding was as you would expect.  Instead of dropping flower pedals down the aisle, they dropped bicycle pedals.  When we walked out of the church, there was a tandem bicycle with streamers and tin cans tied behind it and a sign that read JUST MARRIED.

Now that I had ridden in all 50 states, Washington DC, all the bordering Canadian provinces, and married the girl of my dreams, what was left?  Maybe it was time to settle down and concentrate on my growing Helmets for Kids program.  I questioned if I could raise money for Helmets for Kids without doing a bicycle ride.  The answer was yes.  People felt that Helmets for Kids was such a good program that they were willing to donate money, even if I didn’t ride across the United States to raise it.  In 2006, I raised more money for Helmets for Kids than I did in any single year for any charity.  I raised $20,000.00 to help prevent brain injuries like mine by fitting and giving away thousands of bicycle helmets, and the donations keep coming.  That’s a great feeling.  But, even this isn’t the end to my adventures!  There was one more remarkable surprise in store for me, one that I still, to this day, can hardly believe really happened to an ordinary brain injured guy like me.

mike with helmet crop

In 2002, I found out that I the proud recipient of a community Jefferson Award, an award given to “Ordinary people who do extraordinary things without expectation of reward.”  I was flattered. On this ride to Washington DC, though, I traveled was by plane.  All of the United States senators were invited to the ceremony.  I met Hillary Clinton, First Lady Laura Bush, and Condoleezza Rice, to name just a few of the people who were present.  If that wasn’t enough, the award committee was even kind enough to arrange a bicycle for me to ride while I was there so I didn’t have to interrupt my daily riding streak that, at this point, dated back 10 years.

All of this is a life I could not imagine on the day I returned home from the hospital and cried myself to sleep.  My goal was just to change my attitude and find a way to have a normal, productive life.  My attitude changed my life in wonderful ways, but, in spite of all that has happened, I still feel that my greatest accomplishment in life is being a survivor of TBI.  All you survivors out there should be proud of the fact that you survived.  What we have been through and will continue to go through every day of our lives is not easy.  If you can survive a TBI, you can do anything.

Update:

wear your helmet On August 2, 2013, I was riding my bike when I was hit by a car and thrown into the windshield, shattering it.  The driver received a citation for negligence, and, if it wasn’t for my helmet which, by the way, cracked in half from the impact, I would have sustained yet another brain injury or worse.  Instead, I only received a broken leg.  Because of my broken leg, my mission to ride my bike every day came to an end on August 2nd, after 21 years straight. I will get back on my bicycle as soon as my leg heals.

Would you like to read my entire book?  You can obtain a copy by going to my website at www.helmetsforkids.org .  I am also always available for speaking engagements.  You can contact me through my website above.

Written by Mike Heikes and Paula Schmidt for  The Brain Injury Association of New York State   http://www.bianys.org/

DuWayne’s Journey

DuWayne’s Journey

It was a day like any other day, and, like every other one, I got ready for work and headed out the door.  I climbed on my motorcycle, as usual, and drove to work, circling around the tight, hairpin turn in front of the emergency room at Saint Benedict’s Hospital where I worked as a counselor. I had arrived 15 minutes early and parked in my usual space in front of the admissions door – nothing new there.  The day was as mundane as expected.   The psych ward where I worked was filled with patients, half of them teens and young people.  I went to my shift change, learned the medical history on my patients then began to gather the supplies necessary for my group session.

One by one, my patients filed in to attend my group session.  I handed out supplies and we went to work, discussing the problems surrounding what caused them to enter the hospital in the first place. This routine had been repeated daily for eight years and every day had been identical – arriving to work at 3:00 in the afternoon and working until 11:00 at night.

This night, though, it was 11:00 p.m. and my shift relief failed to show up.  I was required by my employer and the law to stay on the job for the second shift, so that is what I did.  While I thought the first shift was long, the second shift felt longer, and, by lunch time, I really needed to get off the hospital grounds. I clocked out and drove down the road to McDonald’s to pick up a hot lunch.  My lunch needed to stay hot on the short ride back to work, so, I took off my helmet and placed the paper bag inside it.  I wish I had given my head as much consideration as my lunch; I was now driving down the road, helmetless.

As I rounded that familiar hairpin turn by the hospital’s emergency room entrance, a car pulled out right in front of me causing me to lie my motorcycle down.  The bike pinned my right leg under it then dragged me 100 feet down the road.  Without a helmet on, my head bounced just like a super ball between my shoulders and the ground. I acquired a massive amount of “road rash” on my right side.  My chaps and uniform became shredded from the grinding of the motorcycle scraping across the road.  I received a severe traumatic brain injury, had a compound fracture of my right collarbone, and shattered my right elbow.  I crushed my right cheek and almost ripped off my right ear.  I broke my right leg and my right eye was hanging out of the socket.  To control brain swelling, the doctors introduced a shunt and placed me into a prolonged coma.  My Big Mac sandwich did much better than I did.

While I was in my coma, I did not know that I was injured.  I imagined myself on a mountaintop overlooking the city that I lived in.  I kept thinking to myself, when are they going to start the fireworks?  I believed I was only in the mountains to observe the fireworks from up above for a better view of the show, instead of from down below.  The fireworks finally went off.  The next thing I knew, I was looking through hospital bed bars.  I had no idea where I was, how I got there, or when I got there.  The last thing I remembered was being in the mountains watching the fireworks go off with friends.

I was in my coma for 25 days. On the 24th day, the doctors began preparations to remove me from the life support equipment.  I wouldn’t live long.  My parents, not wanting my daughter to see me dead, had made arrangements to bring her into my hospital room to view my body before they disconnected me.  My daughter had not seen me in nine years. The doctors, nurses, my parents, and several friends watched passively as my daughter, who was 10 at the time, walked over to me and asked, “Daddy, do you want a cup of coffee?  To everyone’s amazement, I started to laugh.  I had inexplicably come out of my coma.  The doctors immediately started back peddling.  Nobody could explain how it was that I didn’t die, or how a simple question from a little girl had turned things around so abruptly. That whole experience lasted three weeks then my rehabilitation began.

The documentation on head injury is incomplete at best.  Rehabilitation therapists follow a standardized guideline on how to treat a head injury, but every article I have ever read states that all head injuries are unique from one another.  So, it stands to figure that the standardized approach did not work well for me.  The doctors did not like the fact that I was questioning my treatment.  I was transferred to three different rehabilitation hospitals over a period of five years while I relearned how to walk, talk, interact with other people, eat, cook for myself, shower, use the toilet, wash my clothes, add, subtract, and even how to use a phone.  I had to relearn all of my relationships, even my own family.

Ten years into my disability, because of my coordination problems, I slipped and fell in my own home.  I broke my neck.  It was a miracle I did not paralyze myself from the neck down.  Because I was brain injured, nobody believed that I was badly hurt.  They thought I was exaggerating my symptoms. My x-rays were not interpreted by a radiologist at first.  Instead, the emergency room staff sent me home with instructions to be careful.  The first thing the next morning, the hospital called and informed me that my neck was in fact broken.  They wanted me to return for surgery.  I was operated on for a permanent fusion of my t-1 and t-2 vertebrae.

Eighteen years into my disability, I received a second head injury.  It occurred while I was just walking across the road!  A truck driver hit me in the crosswalk and that injury gave me new neural deficits and PTSD.  At this point, I am rated by social security as 105% disabled.  Now I am totally disabled only because I walked across the street!

I am now 23 years post injury.  I have learned so much that I cannot even begin to describe what my journey has been like.  We, as survivors, need to negotiate trials that the average person may find overwhelming.  Little things, like deciding what to wear or what to eat, and even just talking to people, can be a challenge.  It sometimes feels like my own body is the enemy.  People misunderstand me all the time.  I am a loner, but not by choice.  It hurts me inside to be alone.  Being alone isn’t healthy, yet, many survivors of TBI are alone.  Relationships are hard for survivors, with many marriages ending in divorce.  As the saying goes, you don’t know what it is like until you walk a mile in another man’s shoes.

Regardless of the challenges I face every day, my favorite quotes are, “You are only as old as you feel”, “You only live once”, and “You won’t know unless you try”.  Never give up on yourself.  For if you don’t believe in yourself who will?  Time is the answer and patience is essential for a successful recovery.  There is no known correct prognosis or treatment.  It all varies and changes daily.  Take charge of your own recovery and ask that your treatment program be designed around what you think you need the most.  You will see dramatic changes if you hang in there and never give up.

DuWayne photo 2I wish you all the best,  DuWayne

Written by DuWayne H. for The Brain Injury Association of New York State

www.bianys.org

Joel’s Story: A father’s memoir of his son’s encounter with traumatic brain injury

Chapter 1: Saturday Night, December 29, 2001

Streaking down the New York State Thruway, we bantered nervously about not speeding too fast. It wouldn’t do to have an accident tonight. Twenty minutes earlier we had spoken by phone with a police lieutenant. Dayle and I comforted each other with the thought that our son, Bart, was uniquely qualified to survive a head injury. One of his family nicknames was “bowling ball.” His head was large, perfectly shaped, and remarkably sturdy. When barely a year old, he stumbled head-on into an older toddler at a local pizzeria. The other kid went down like a bowling pin, with Bart hardly seeming to notice. By age three he loved to challenge his uncle or another willing adult to headbutt with him, invariably winning. In soccer, basketball, and baseball, all of which he played in middle and high school, he was a dogged defender, never shy about taking a hit. Opposing players just careened off him. He seemed nearly indestructible.

* * *

Our first sight of Bart as an infant had been in a lounge at JFK airport’s International Arrivals Building. A frazzled escort handed him to Dayle, saying only, “Here. Here’s the strong one.” In the excitement we had no chance to ask her to expand on that cryptic remark. With eleven children arriving on the flight from Korea, the lounge was jam-packed with glowing new parents, relatives, and friends milling around in dazed, happy confusion. Arriving home that evening, we began to get a feel for what she meant. At barely five months, Bart could sit up, crawl, and even stand with someone to help keep his balance. Big for his age, he sported huge hands and feet, and an unusually large head supported by a thick neck. Apparently well fed, he looked like a miniature Buddha. We later learned that foster mothers in Korea, for whom fat is beautiful, compete over who can best “plump up” their little charges.

* * *

Earlier tonight, the police lieutenant told us that the car had wrapped around a tree on a narrow side road, a stone’s throw from Main Street. The village speed limit is 30 mph, and one could hardly go faster if one tried. Surely Bart’s solid constitution and rock-hard head would stand him in good stead. A letter from a dying uncle written later while Bart was in a coma boasted, “In a contest between a tree and your head, my money’s on your head any day.” Luckily the New Paltz Rescue Squad is one of the best in the region. Other towns around Ulster County send new recruits to train with them. The squad would take excellent care of our boy. We tried to take comfort from these and similar thoughts during the desperate ride to the hospital. Cell phone service is spotty in the mid-Hudson valley, but we managed to ascertain that Bart had been taken into surgery. That bit of news burst our fragile confidence. Brain surgery on a minor without even obtaining parental consent — it must be do-or-die. I began to exhibit an odd nervous reaction — rapidly shaking my head from side to side, much like a dog shaking water off its coat; as if trying to shake unbearable images from my mind’s eye. Oddly, it seemed to temporarily dislodge the awful visions.

The evening had begun pleasantly. With our eleven-year-old daughter, Cassidy, sweetly dozing in the back seat, Dayle and I returned home from a Christmas party around 11:30 p.m. in holiday spirits. Sixteen-year-old Bart had spent the previous night at a friend’s house and was scheduled to return home along with a couple of buddies to crash in his room. In rural upstate New York, endless rounds of sleepovers are a way of life for teens. Coming up the driveway, as we noticed every light in the house on, Dayle sighed with relief, “Good, they’re home.” But upon entering we found only the dog, and on the kitchen counter a hastily scrawled note, “Went to Gary’s.” With Bart out, I felt obliged to check the answering machine, which blinked, “1 Message.” It was from a lieutenant with the New Paltz police, asking us to call right away. Assuming what I thought was the worst, I worried that the boys had been arrested. The last couple of years Bart had led us on a very merry chase, in trouble at school and even a near run-in with the law. Lord knows what mischief the knuckleheads had gotten into. The dispatcher seemed reluctant to talk with me, saying I’d have to speak to the lieutenant, who apparently was unavailable. Finally, after a couple of agitating minutes on hold, another officer came on the line. Bart had been in an accident in the village and was on his way to Westchester Medical Center, some seventy-five miles south. Yes, he was alive. No, he couldn’t say how serious it was, but he had been medivaced. Why take him to Westchester when there were five hospitals within thirty minutes of home? And by helicopter no less?

I hung up the phone, shouting to Dayle to call friends and ask them to come by for Cassidy. The Kennedys should plan to keep her at least overnight, maybe longer. Better pack her kit, just in case it was more than overnight. I kept a bag already packed for last-minute business trips and suggested that Dayle throw in a few things. We tried calling Westchester Med’s emergency room. After several futile attempts we finally reached someone who at least tried to be helpful but was unable to find any record of a Bart Goldstein or Groudine-Goldstein. My mind was beginning to cramp a bit, and I struggled to give a detailed description. The voice confirmed that a young John Doe matching Bart’s description was already in CAT scan. It seems he had arrived without any kind of ID. The neurosurgeon on call had been summoned. I felt both relief and dread — relief that we had at least located him; dread that Bart faced neurosurgery nameless and alone in some gigantic municipal hospital. My mother and sister, both with long and distinguished careers as nurses, had filled me with a reflexive horror of hospitals. Mom had been quite blunt, saying simply, “Stay out of hospitals; they’ll kill you.” I forced myself to take deep slow breaths through the belly to stave off the cold knot growing in there, whispering that Dayle should be ready to shove off the moment the Kennedys drove up. We knew Cassidy would be fine with them. If need be she could spend the rest of Christmas break with their daughter Lauren, her best friend. Dayle made a quick call to her oldest sister, asking her to stand by ready to make more calls if needed. Then she phoned our good friend Duffy Violante, formerly a nurse in a brain-trauma unit and now a massage therapist and healer, asking him to light a candle and say a prayer for Bart.

Somehow we arrived safely around 1:30 a.m. at Westchester Med, a sprawling campus of buildings centered around the main hospital with its heliport and emergency room. Struggling to control our feelings, we ran into the building and stumbled smack into Sean Daniels and his parents, Gwenn and John. Glad to see familiar faces, even haggard, shell shocked ones, we all retreated to a deserted waiting area near the recovery room. We caught up a little, learning a bit more about the accident, and getting filled in about the condition of the other two boys who had been in the car, Sean and Kyle. Riding in the front seat, with the protection of seatbelts and airbags, they were both badly shaken up, but physically okay. Bart was riding in the back seat without a belt. There was no one from the hospital to speak with, so we killed some time by going to the registrar’s office to clear up the question of Bart’s identity. Every hour or so we’d call the recovery room to inquire about Bart. Each time was the same: no news. Each time I’d remind the nurse to please call us as soon as they learned anything, making doubly sure she had the extension number for the waiting room phone. And above all else, to please let the surgeon know we were dying to speak with him. It was a long night, but we were very lively and alert, high on adrenaline. My recollection is spotty, but I know we tried to keep things light, joking around, especially with Sean, who, though physically all right, seemed a wreck. A few scant hours earlier he had totaled his family car, dragging Bart’s apparently lifeless body from the wreckage.

Finally, around 5:30 in the morning, we discovered quite by accident that Bart was already out of surgery. On a periodic trip to stretch our legs, we looked in at the post operative acute care unit (PACU) and were astonished to find Bart inside. They hadn’t bothered to call us. It was, after all, a large hospital with many waiting rooms. The surgeon had gone home to get some sleep, and no one was willing or able to give us an assessment of Bart’s condition. Everyone seemed surprised that we hadn’t been briefed by the surgeon.

PACU is kept locked to keep out pesky relatives and their germs. As the parents of a minor, we were buzzed in, along with “Uncle” John Daniels. Nothing in my experience prepared me for what I saw. I could not for the life of me recognize Bart. His entire head and face were swathed in bandages, leaving only small slits for his eyes. There were hoses snaking out of his mouth and nose, and, unbelievably, even a couple coming right out the top of his skull. The misshapen swollen mass of his head seemed held together by clear plastic tape, the kind used to seal cardboard cartons. Beneath the tape I detected staples, the large ones used to tack plywood. I resorted to examining his hands and feet to assure myself that this grotesque, lifeless creature was my precious son. His large feet and hammertoes made the identification conclusive.

Folks in PACU were kind and sympathetic, but shed no light on Bart’s condition. Finally a doctor came in to check on Bart, examining his monitors, including the respirator, which was doing his breathing. Opening his eyes with her fingers, she shined a tiny flashlight at them. Bart did not seem to react to the light, and I thought I caught a hint of resignation in the doctor’s eyes. We couldn’t get her to divulge anything about his condition other than that he was in a coma, both natural and drug-induced. Later, passing us in the hallway and seeing our anguished expressions, she confided, “Listen, whatever happens, it’s going to be a long, long haul for your boy.” A cockeyed optimist, I took this as good news. At least she expected him to live a long time. By now we were beside ourselves, desperate to get a clear picture of the nature of his injuries, what had transpired during the nearly six-hour surgery, and, most urgently, his condition and prognosis. We asked the head of PACU as well as several hospital administrators to help us get a report from a responsible party, but with no satisfaction.

Finally around 8:00 a.m. an exhausted doctor in rumpled green approached us in the hospital lobby where we had huddled for coffee. He said Bart’s surgeon had gone home, but that he had assisted during the operation and could fill us in. Bart had suffered a massive subdural hematoma, a large blood clot between the surface of the brain and its outer covering. The lifethreatening clot had been removed, but his condition was extremely critical. There might be permanent injuries. He added almost as an afterthought, “We may lose him during the next ninety-six hours,” then turned and walked off. We had sent the Daniels home at around 6:00 a.m. to get some sleep, so were utterly alone. Dazed, we sat down in the empty lobby and began to quietly weep. I felt my whole body surrendering to a rising wave of sobs when Dayle jabbed me hard in the ribs, whispering, “Joel, keep it together; we’ve lots to do.” I snapped to it and we made a to-do list, then called our old friends Lou and Lisa Badalato who lived ten minutes from the hospital. Catching them leaving for work, we asked if we could crash at their house for a few days. Stunned by the news, they agreed to leave a key for us, giving us freedom to come and go as needed. Next I called my nephew Scott Marsel, a prominent internist in Florida. After tracking him down and giving him a quick update, I asked him to stand ready at a moment’s notice if questions, concerns, or decisions came up. He suggested that, once Bart stabilized, we might want to move him to a top New York City hospital, possibly New York–Presbyterian Columbia University Medical Center. We called the Kennedys and told them to expect to keep Cassidy for a few days and also to request prayers from friends in our Korean culture camp.

That morning Marlene Kennedy sent an e-mail to the Mujigae camp committee. Mujigae, a Korean heritage camp in Albany for adopted kids, had been an important part of our lives every summer since Bart was six. Her e-mail read, “Last night Bart Goldstein was in a serious car accident and was medivaced to Westchester Medical Center. His family has requested your prayers, whatever your denomination. Wouldn’t it be great if we could surround him in an embrace of Mujigae love and positive healing energy? The next seventy-two hours are the most important. Please don’t call the home; they are down at the hospital. Their daughter is staying with us for now. When I find out if he can receive cards I will e-mail you again.”

The following day she wrote, “Bart is in the WMC pediatric ICU. His condition is pretty serious. He is in a level six coma. Right now a ventilator is helping him breathe, but he seems to be doing more of the work now. For the next thirty-six hours the focus is on keeping the brain swelling down. At the current time he does not seem to have any other internal injuries, which is good. When he first was admitted he needed an operation to reduce the pressure on his brain. The surgery took five hours and appears to have been successful. It is now a wait-and-see time. Dayle called and said that even if he comes out of the coma relatively quickly he will need to go into rehab and it may be a long haul. They have asked friends and family to pray for a speedy and complete recovery. Feel free to pass on info to Mujigae friends. We should know more in the next few days. You can always e-mail me.” Marlene sent similar succinct messages, which became known as “Bart updates,” every day or two for the next four months. The updates relieved Dayle and me of the necessity of speaking daily with the many worried people seeking information about Bart’s condition. We received the e-mails as well, so in addition to cutting down wear and tear, it kept us abreast of what other people were hearing about Bart.

Joel

Joel’s Tip:

We’re not cheerleaders for any particular therapies, rather advocates of a persistent search for alternatives. In the future, I feel confident that improved treatments will emerge. After 10 years and counting, Bart still struggles with diminished short-term memory, visual field loss, and fine motor control. Psychologically, our bags are always packed. Today, with high school and even a semester of college under his belt, and a couple of years of cognitive therapy, Bart is a lively, charming young man, living nearly independently in his own apartment near Albany. How different the outcome had we heeded the advice of well-meaning busy bureaucrats? If there is one universal truth about TBI, it is that our loved ones who are injured need strong advocates in order to navigate mind-boggling challenges.

Joel Goldstein is the author of the book  No Stone Unturned  available through this link at Amazon.com: http://www.amazon.com/No-Stone-Unturned-Encounter-Traumatic/dp/161234464X/ref=sr_1_1?s=books&ie=UTF8&qid=1372191360&sr=1-1&keywords=no+stone+unturn

For more on Joel’s Story, click on the youtube link below:

http://www.youtube.com/watch?v=IE06p8lB4FA