Billie’s Story

Written by Billie W. for Brain Injury Stories

Hello.
My name is Billie.
I’m 38 years old.
I have survived multiple brain injuries and surgeries.
I am tired .
My story is long and I often feel as if I’m boring others’ with my woes.
I hate that I am trapped in this body.
Trapped in a mind that seems to run on magic.
My story is as follows and is not yet over.

From a very young age I can remember headaches.
Terrible nauseating ones. The first real migraine I can remember was at the age of 4.
My parents had high school educations.
We were poor and health insurance was not really the greatest.
I was a happy kid though.
We had enough.
When I was 10 years old my siblings and I were playing in the backyard.
We were wrestling.
My sister did a perfect dive and landed on the back of my head.
I remember this strange feeling of vibration no pain.
We played as normal and went to bed that night.
As I lay there my left arm picked up of its own accord and grabbed my right shoulder.
You have to imagine this was very shocking for a kid.
I rolled off of my bed and onto the floor.
That’s where my Mama found me.
I was already completely paralyzed on my left side.
I can remember my Dad praying as he attempted to push start our truck.
My parents got me to the local hospital.
I remember voices and some horrible orange drink.
Then nothing.
I woke up almost one month later, terribly thirsty and scared.
I looked to my right and saw a cup, I tried to get to it.
That is the very moment I realized I couldn’t move.
It didn’t seem real, a nurse confirmed it was.
I was completely paralyzed on my left side.
I didn’t understand.
I soon learned what they all knew.
A blood clot had ruptured on my brain.
That blood clot was a direct result of a condition called AVM.
I spent months in a wheelchair and in therapy.
I was saddled with a left-sided defect and pretty low self-esteem.
I was alive.
My Dad always said it was for some, “Greater Purpose.”
We will see Pop.
We will see.
After learning to walk and talk again, life could have and should of been cake.
But, life, it is what you make it.
I spent my teens fighting one person or cause, or just plain fighting for my life.
I was kind of this weak wanna-be warrior.
What I wanted, I did.
Consequences be dammed!
I suffered blackouts.
I kept silent.
I have always been the champion of the underdog.
I had to be.
My role as champion was mostly silent and covert tactics…mostly.
I often landed in trouble.
That is what your teenage years are for, trouble.
I walked with a limp.
I had a lisp, freckles and ginger hair.
I also had wee little feelings.
I always did.
They thought I was dramatic.
That’s what I have always been told.
I spent my formative years feeling apart from most people.
Sometimes missing minutes, even days in my head.
I’d wake up places and not know how I got there.
I couldn’t tell anyone.
When I tried I was dismissed.
Billie is dramatic.
My family loves me.
They had no real education or resources about brain injury.
Things could have been different.
They would have known about my brain injury and my epilepsy when I was a child. My parents did the best they could with the resources they had.
I grew up.
I married a great boy.
Jason.
We had one child.
Noah.
I’m one of those Mother’s that can actually say she almost died giving birth to her child.
Boy, he is worth it all.
He sure is my savior. He is worth the struggle, he is my Sun.
I started having tonic-colonic seizures when I was 8 months pregnant, they were terrifying.
If I’m not getting oxygen, my baby isn’t either.
I lived in fear for 20 minutes after I awoke from my first tonic-colonic seizure.
They couldn’t find Noah’s heartbeat.
Up until that moment I wasn’t even sure I wanted to be a mother.
I was 19 and had spent most of my life running and serving myself.
Hearing his heart beating strong changed my mind forever.
Someone to protect that needs me.
I was told I didn’t have epilepsy but a seizure disorder.
I was never referred to any neurologists.
Multiple ER physicians prescribed anti-convulsion medications.
I declined them.
Why would an otherwise healthy woman take a poisonous drug?
For a condition she doesn’t have?
That didn’t make much sense to me either.
So I didn’t.
I continued to raise my son, my husband and myself.
I didn’t do the greatest job.
The blackouts still happened.
Telling people at this juncture seemed pointless.
I’d had grand-Mal seizures on and off my whole life.
That is what we were all used to.
Any other episodes were just that, some weird episode.
I was confused and irritated.
Things happen.
My marriage deteriorated.
Our friendship did not.
Jason was everything I needed when I needed him.
He suffered my bull and I suffered his.
We both deserved a shot at happiness elsewhere.
Enter my dwarf.
My champion.
My Jeff.
He was my friend for years and had been diagnosed with Testicular Cancer at the age of 27.
He knew what sickness felt like.
I secretly had a crush on him from the day I met him.
He was a cabdriver, my little brother’s friend and interesting.
He was also a jerk.
He was kind-of perfect for me.
I loved him on sight.
He saved my life.
In January of 2013, I was in a car accident.
I know.
I shouldn’t have been driving.
A girl must do what she must.
I made poor choices.
I ended up with two broken ankles AND an undiagnosed DAVF.
I spent the next 3 years in a mind of extreme chaos, my own.
Neglect from the local medical facilities was criminal.
I presented myself to the ER several times.
Only to be sent away with little help and no referrals.
I used to work for the hospital, damn hard.
I gave them the remainder of my strength for youthful work.
This place that was now turning me away to die, was once an establishment I took pride in working for and with.
I still feel pride.
There are many excellent doctors and medical staff there.
There is however, one who deserves a little blast.
Just a little acknowledgement.
Dr. Schwab.
On September 5th, 2016, I was at an exercise class.
I wasn’t doing anything too strenuous.
I felt weak and tired.
I excused myself to go to the bathroom.
What happened afterwards is a blur.
I remember sitting down to relieve myself when this shooting, throbbing pain came.
It radiated from the top of my head down through my spine.
It felt like a hose had un-kinked.
I told the doctor exactly this.
My family had given the emergency room the impression that I had a seizure.
I knew I hadn’t.
My boyfriend had told the nurse I had taken a Tramadol.
I had a prescription.
I took one after the bathroom episode.
I took it because it alleviated some of my family members worry.
They had read that stopping taking Tramadol can cause seizures.
I acquiesced and took one.
I had previously weaned off of ALL pharmaceutical medications.
My admitting taking a narcotic changed the rooms overall vibe.
My boyfriend stating this fact quickly changed the nurse’s opinion of me, her judgement of me was palpable.
The doctor had a head CT ordered and done.
My brain is very scarred.
MRI imagining is needed to see the intricate workings of my vein network.
I told the doctor and the nurse this.
The doctor felt one was not necessary.
After my family was assured I was fine.
They left to get the car.
I was left with a doctor who no longer believed, if he ever had, he had a physically ill patient.
This man of medicine waited until we were alone to tell me he didn’t think I had a seizure.
I was excited.
I thought that someone was finally going to listen.
I know the difference between my grand-Mal seizures and my different types of “episodes.”
This was none of those.
My excitement turned to dismay and humiliation.
As soon as the curtain was closed he informed me that he believed I was a drug addict.
Faking seizures.
Where he got this idea from, I have no idea.
Doctors do become jaded, they have their reasons.
With what my family had stated, what I was stating, AND my extensive medical history with
seizures and head injury;
I was shocked.
I didn’t quite understand at first.
I soon accepted what he was saying.
He mocked me and stated, “I would refer you to a neurologist, but…” he trailed off there.
I started crying.
He responded with a shrug and a callous stare.
He made me apologize for wasting his time.
He discharged me.
I went home and gave up. I did nothing for a week but fear the toilet and another episode and cry from my bed. My dear cousin Johnny and Jeff both were unwilling to let me suffer any longer.
They knew me, they knew I was no drug seeking hypochondriac.
Johnny encouraged me to call the clinic he uses for a follow-up.
I have never been more thankful to any cousin in my life.
There was a physicians assistant Chris working who saved my life.
He took the time to listen to me and all of my symptoms.
He ran tests, scheduled follow-ups and got me my MRI.
What was found on those imaging films still shocks me.
I had an AVM.
My parents and myself were told that those do not grow back and they had gotten it all.
They had almost gotten it all, I had residual.
When I was in the car accident in 2013 causing a DAVF.
It began to fuse with the residual AVM.
This was just the oxygen rich source my little hanger-on has been craving.
A life force to feed from.
Over almost 3 years they fused together, weakening my blood vessels, taking oxygen rich blood from other organs, causing damage. Towards the end of my little leaches reign, my systems started to be affected. Infections all the time. My spine had even started moving completely to the left side of my body. The AVM monster was attempting to connect with my spine, what sort of crazy Cthulhu is this? There were strange diagnosis that made no sense, blanket treatments. I was weak and tired and ready to die by this point. No one knew.
Not really.
I had to wait over a month for an appointment with a neurosurgeon.
I lived in total fear.
I was afraid to move.
I was terrified to go to the bathroom.
Terrified to do anything .
I met with the surgeon, Dr. Lawton. He was top in his field, the head even. He assured me he would have me fixed up, happy in no time.
Again, it was another wait.
My surgery was scheduled for October 27, 2016.
I had back to back surgeries scheduled.
One procedure was done through my groin. A tube was inserted and several aneurysms were glued for the craniotomy and AVM removal
the next day. I was informed that without this procedure I would more than likely bleed to death before
removal could happen.
So, yeah, let’s do this!
I woke up from surgery feeling relieved to be alive.
I couldn’t wait to feel again.
The doctor had assured me not only had he successfully removed my AVM, I would now be able to fully recover. Someday, with therapy, I could have back my long lost left side coordination.
That is simply not to be.
For reasons unknown to me, or any medical professional I have spoken to about this; after my craniotomy there was no drainage tube placed. Nothing to draw the excess fluid from my brain.
As a result, over two weeks after my surgery, I developed an acute subdural hematoma. I had no pain, no real warning other than the fluid that shot from the top of my head when I sat up.
The pressure had finally become too much.
I presented to the local hospital after a 30 minute phone call with the on call doctor for my surgeons office. The local facility was ill equipped and at least had the good sense to say it outright.
I was sent back to the big city and my “saviors.”
When I got to my room the on call doctor shook my hand and thanked me for saving my own life.
I had to have another brain surgery.
This time a Bur hole procedure is needed to save me.
I had far too much fluid on my brain, it had pushed my brain as far to the right as it could. The section pushed against my skull had died.
It had to be removed.
I now have some screws and a plate.
My left side is weaker.
My seizures are worse.
My quality of life is not as promised.
I’m currently working on trying to stay positive.
To not play the role of victim is hard sometimes.
I have conditions caused by conditions.
I have suffered neglect at the hands of medical professionals.
My family and myself.
I, with the help of those who truly care, saved my life.
It is a struggle and I fail to see my purpose sometimes.
But,
Dammit!
I’m here!
I’m not giving up on me.
How can I when so many people still care that I’m in this crazy world.
I hope you made it all the way through this and found some peace.
I’m thankful.
Life will be harder.
Things worth fighting for are.
You’re not alone.
Everyone has a story.
I love you Stranger.
My fellow Warriors.
My friends in the fight.

Patricia’s Story

Written by Patricia I. for Brain Injury Stories

 

It’s been a difficult, yet enlightening journey recovering from a brain injury.

 

It began with a concussion sustained in a fall on October 10, 2016. I tripped as I walked down my attic stairs. My head hit a hardwood floor 7-feet from the bottom of the staircase. I blacked out. I must admit the fall was frightening as I was propelled into the air for a moment. I was sure my hand would break on impact as I landed on my fist. Blood was everywhere; on my shoulder, along my arm, on my hand, and on my hardwood floor. The source was a puncture wound in my left palm from screws I held. There was no fracture fortunately, only badly bruised knuckles.

 

patricia

Patricia

I developed typical post concussion symptoms such as headaches, sensitivity to light and noise, dizziness, vertigo, vision problems, insomnia and sleep disturbances. The persistent headaches were the most debilitating symptom. NSAIDs weren’t an option for treatment due to an allergy, and no prescribed medication or injection alleviated my pain. The only relief was when I slept, so sleep is what I did. Mostly, I lived in bed.

In February 2017, I sustained a second concussion before healing from the first. So, in addition to the original symptoms, I developed new symptoms which brought more challenges into my life. I slowly began to develop cognitive impairment. I had difficulty thinking clearly, processing information, and retaining new information. I talked slowly and sometimes moved slowly. I struggled to form words. I had difficulty with reading comprehension and simple math calculation.

It reached a point where the severity of my symptoms made it difficult for me to live my life. It’s when my older sister stepped in and became my lifeline. She not only provided moral support, she came by my house every day to check on me. She brought me food and groceries, managed my bills, filled out documents, scheduled appointments, and drove me to and sat in on every medical appointment.

I never knew the day of the week upon waking. I often put a plate of food in the refrigerator thinking it was the microwave. It wasn’t unusual for me to leave the oven or burners on after cooking, forget to lock the doors at night, or lock myself out of the house. I didn’t know what I ate on any given day, and some days I didn’t eat at all because I didn’t remember to eat.

There were other challenges, as well. I experienced hearing loss in my right ear and tinnitus in both ears. I developed problems with balance. I became more emotional and grew irritable quickly. I lost the ability to write well which was a particularly difficult blow as I had been a news reporter and writer for a substantial part of my career.

I initially thought there was nothing worst than living with excruciating headaches, but I was wrong. I was living with a brain that constantly failed me. This was far worse. I felt completely and utterly broken. I felt dumb. I wasn’t me anymore. So, I shut myself off from the world. I stopped talking to and seeing relatives and friends. I may have looked the same, but inside I definitely was different; and it was noticeable.

I created a self-induced terribly lonely existence. My only companion was my 4-pound chihuahua, that is if I don’t count the despair that tormented me. Antidepressants rescued me from depression. A counselor helped me deal with this new reality.

patricia 3

Patricia’s sister, June

There were moments of “why me?” which I’m not proud to admit. It didn’t last long, however, as my headaches were too intolerable to focus on anything else. No one really understood the intensity of my pain. I’d ask people if they ever had a really bad headache that never went away. The answer was always no. Perhaps to some it appeared as if I were exaggerating. I was not. That unrelenting pain dragged on for a year before I began to show marked improvement.

By spring 2017, the mental fog that consumed me lifted. I began to experience clarity. The ability to write returned. I was able to express myself effectively. However, my short-term memory was still poor. I tired easily as I began to venture out more into the world. I was physically and mentally drained if I did too much. My body and brain seemed to shut down. I needed naps and quiet time to recharge. It sounds like preschool, but a typical nap for me lasted six to eight hours. There were times I needed an entire day to recover.

My world continued to change for the better as I continued to improve, but the progress didn’t last. There were more accidents as a result of dizziness, vertigo and unsteadiness, and more blows to my head. My clarity waned. A neuropsychologist suggested my recovery may have been impacted by a bad concussion sustained in a head on collision with a truck in 2004. I was in and out of consciousness following the collision. I experienced temporary memory loss. PTSD may be impeding recovery, as well.

A Christian counselor offered sage counsel. She told me I could view this experience as something devastating or as an opportunity. I choose to view it as an opportunity. I have experienced difficult life challenges in the past and came back from each one. I am convinced I will beat this, too. But, in late summer I regressed. It devastated me. Frustrations with recovery overwhelm me. Staying hopeful is a challenge at times.

I’m not as far along in my journey as I’d like, but I have come a very long way. I am thankful for that. I now live my life as is, which means embracing the good days and managing the bad. My focus continues to be on recovery. I rest my brain to further healing. I stimulate my mind to improve cognitive function. I write every day. I play the piano. I work on projects that nurture my creativity. I keep a memory journal and place post it notes around the house as memory aids. My alarm clock displays the day of the week and date. I am disciplined and very organized.

It’s been difficult, but I have learned to take the bad with the good which has brought me peace. I view the good days as gifts. I am grateful to wake up each morning. I’ve discovered I am stronger than I ever imagined. I realize I can take whatever life throws at me and keep moving forward. I believe each day brings me closer to recovery. I trust God will see me through.

I wouldn’t be able to navigate this difficult journey if it weren’t for my older sister and my daughter. Although I am demanding at times, not always fun to be around, and totally stress them out, I know I can count on them for love and support. They continue to encourage me and push me. I am blessed to have them in my life. It’s impossible to put into words the deep gratitude I feel.

patricia 2

Patricia and her daughter

There’s an expression that time heals all wounds. I really am counting on it. However, I realize with life there are no guarantees. This may be as good as it gets. But, it’s okay. I will be fine. I will make the necessary adjustments and keep living and enjoying my life.

 

 

 

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. 

mike on bike book cover crop

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.

speed limit sign crop

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!

bike sign 2

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

DuWayne’s Story

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

http://www.bianys.org

Andy’s Story

You can also read Andy’s Story on Brainline:  http://www.brainline.org/content/2012/06/andys-story.html

It was well before dawn on a typically hot and steamy June night in New York City when my life changed in ways I could never have imagined.  Most people sleep through the ungodly hours between midnight and morning, safely locked in their homes and oblivious to the underworld that exists outside their windows.  For me, though, this was the time of night when I did my best undercover work. Yes, I knew my job was dangerous, which is why I endured weeks of intense training, learning all I could about how to keep myself alive.  But all the training in the world didn’t prepare me for the dire situation that awaited me on that fateful night in 2001.  Twelve years later, I am still baffled how a single event can spin a person’s life so profoundly out of control.  It is hard to understand, and even harder to explain, but my hope is that by sharing my story with you, I can pull together a few more fragmented pieces of what has become the puzzle of my current day existence.

People often ask me, “Have you seen the HBO show The Wire, Andy?”  Then they talk about the characters, the details of last week’s show, the difference between real narcotics undercover work and the fiction they see on TV.   Television characters engulfed in a world of greedy violence, undercovers trying to break up the scummy underbelly of a city gone awry…. “Is that what your job was really like?” friends ask.  I stare at them with a blank look on my face while I try to go about the impossible task of recalling what last week’s episode was about.  I’m sure I saw it and I probably liked it – I am guessing anyway.  But, no matter how hard I wrack my brain, I just can’t remember.  See, I can only retain memories for about 5 days before they drift away, lost in a fog of jumbled, irretrievable events that I somehow participated in – if only I could remember how.  I mumble something unintelligible back at them then change the subject fast. I want to talk about now, about today, before this day’s memories disappear along with the rest of them – into the vast sea of thoughts and impressions that I can no longer discern.

Yes, I have a pretty severe case of memory loss.  For reasons no one can explain, my brain’s electrical system is no longer able to imprint permanent memories.   It sounds like the work of science fiction – the fact that all of our memories, our joys, our sorrows, are nothing more than a fleeting bit of electrical impulses.  But that’s the way it is. Fortunately for me, my memories of the past are still intact, so I am able to tell you my story without relying too much on input from others. So, here’s what happened:

There were about 35,000 police officers in the NYPD when I started working as a patrolman. I remember patrolling the streets of Bronx, breaking up domestic incidents and chasing down petty thieves.  I just assumed it would be my life for a very long time, but, when my friend, Pete, asked me, “Andy, do you want to try something new?”  I responded, “Hell, yeah!”  Back then, I loved a new adventure.  A career with the elite undercover NYPD narcotics force would suit me just fine.

Undercover was totally different from anything I’d ever done before. I spent months in training before I could even begin, learning how to be less like me and more like the people I usually arrested. I was taught how to walk and talk in ways that didn’t give away that I was a cop. Ironically, I was even taught how to forget my name so I didn’t startle and fall out of character if someone recognized me on the street. It wasn’t easy – forgetting who I was and becoming completely immersed in a different identity, a character I would portray for weeks, if not months at a time.   I had to learn how to live two different lives, how to be unrecognizable, even to myself.  Little did I know that this new skill would save my sanity all these years later.  For then, though, I was just having a really good time.

Much to my amazement, I was a pretty good performer.  I remember working Harlem and Washington Heights, not an easy place for a 6’1” white guy to work undercover – but I pulled it off. Through the years, I created many different personalities.  I was a homeless guy, a mechanic and a junkie to name a few.  When I worked lower Manhattan, my job was to create the persona of a drug addict who hung out at after hour clubs.  I grew my hair long, dyed it black, and became a greasy and disheveled street level guy named Mike.  I wore black everything – pants, jacket, t-shirt and shoes.  I changed my voice and my gate and even my attitude.

I must have been pretty convincing, because one time, when I was jogging near my house, trying to lose weight so I could look more like a junkie, a man from the neighborhood drove by in a car with his wife.  I saw him look at me with disgust as I ran past him, my waist long hair dripping down my back, my beard unshaven and unshaped. He turned to his wife and just shook his head.  A few months later, I was in a meeting at work, when in walked that same guy from the car.  We stared at each other for a minute then broke out laughing.  He was a fellow undercover.  Neither of us knew what the other one did for a living.  He said when he saw me jogging that day all he could think was, “What the hell has happened to my neighborhood?”  We became great friends and co-workers from that day forward.

Being an undercover was a lot like being an actor, but with higher stakes. I knew I had to put on a great performance every day.  Bad acting might get someone bad reviews.  But a bad undercover performance would definitely get me killed.  Yeah, it was dangerous, but I loved every minute of my job.  It fit me well.

The downside of the job was my home life.  I would disappear, sometimes in the middle of the night, not able to tell my family where I was going or when I would return.  I’d be gone for days at a time, leaving my wife with the task of managing the entire household alone.   She was raising our two small children single-handedly.   She didn’t like my job – the erratic schedule, the difficulty arranging childcare, the fearful and sleepless nights. But she knew I loved it, so she hung in there for my sake, doing what she needed to do, doing her part to get along.

That night in June wasn’t dramatically different from any other. I was doing the clubs with my partner, a female master of disguise who could effortlessly transform her naturally sweet self into a loud, crass, tough girl junkie with the change of a hair-do and a skirt.  We were sitting in our little red Honda, parked in lower Manhattan, the last in a line-up of parked cars strung along the dark side of Broadway, waiting for the right time to go into a certain club.  Like most nights, our job was to open a case for drugs and weapons.  We both had our guns ready if something went terribly wrong.  This was typical of the job.  Everyone carried a gun, be it cop, drug dealer, or club owner – there were always guns involved when buying drugs.  Most nights, I tried not to think about it because, if I did, it would be too much to handle.  On this night, though, I was thinking more about the perfect hamburger I had just eaten from my favorite late night diner.  I fiddled with the car’s radio, but it didn’t work.  To kill time, my partner and I reclined our front seats toward the back and started telling knock knock jokes.

And that’s it.  A hamburger, a broken car radio, a knock knock joke. Those are the last things I remember before my life flipped upside down.

I was told that a car flew around the corner at a high-speed and hit us, the driver claiming he lost his breaks.  When the ambulance came, the EMT’s strapped me to a board then brought me to the hospital, afraid that I broke my back. My wife was called by my great friend, co-worker, and neighbor – the one I told you about earlier.  He was a saving grace for my wife and myself in the early days after my accident, and without him and his family, I’m not sure we could have held up through all that was to follow.

X-rays showed I didn’t break my back, and I walked out of the hospital that day, a bit dazed and asking the same questions over and over. By Sunday, my wife said I was acting dopey.  By Monday it hit me hard – I couldn’t remember anything at all.  By the end of the week, my wife said I had developed a stutter so bad that I couldn’t communicate with anyone. I cried a lot, had vestibular issues and balance problems.  The force’s doctor said I had post-concussion syndrome and recommended I see a neurologist.  I went to therapies 2 days a week and hoped it would all blow over soon.

Recovery was slow, but it was coming along, until weeks later, I was driving home from the store with my wife when my head felt strange and large, like it was too big for itself.  I pulled into the driveway, got out, and fell, face first, on the ground.  I tried to stand up, but I couldn’t stop from shaking all over.  Soon, I couldn’t walk, and for the next six months to follow, I lived out my days in a wheelchair.  I spent a month in a rehab hospital, but no one could figure out what was wrong with me.  “Just one of those weird neurological anomalies”, the doctors would say.  One sent me to a psychiatrist who decided I had conversion disorder, all because he couldn’t find an answer that fit into his narrow little diagnostic framework. I tried hypnotherapy, physical therapy, psychotherapy – you name it, I tried it.  I did learn to walk again, but shortly after I got out of my wheelchair my left hand closed up.  It hasn’t been the same since. What caused all this?  No one knows to this day.  I have no choice but to add this experience to the list of bizarre TBI things that have happened to me (and other people, I’m sure) without reason.  Post-concussion syndrome… a strange thing that does the unthinkable, making you feel like you’ve lost your mind, your sanity, and, worst of all, the life that you once took for granted.

As you can tell by my story, I never did regain my memory. I will be disabled for the rest of my life, but learning to adapt to the changes, learning to take life a day at a time, has saved me from the grips of depression.  For all the therapies, doctors, and treatments that I went through, there is one piece of advice that stands out in my mind.  My wife once said to me, “When you go to the top of the mountain and meet the guru who is going to tell you the secret to life, he is probably going to say, ‘Andy, don’t let things bother you so much”.  There is a lot of truth in that statement, and now, all these years later, I try to live by those words to the highest degree that I can.

My wife says I am quirky now, since the injury.  For example, clutter makes me edgy and I feel the constant need to clean. I keep post-it notes everywhere so I can remember what to do next.  I keep a journal that I read when I feel like I need a reminder that last week really did happen, a way to keep up with the memories I can no longer hold onto.

I think it was quite an adjustment for my wife to have me home constantly after being away for days at a stretch, but we’ve worked out a system and we’re happy.  My family is my driving force now, and I am proud to say that, for once, I am part of it.  My kids, their sports games, their homework, the grocery shopping – I can finally give my wife some relief from all the daily chores that she carried alone for so many years.  I am extremely grateful for the family time that most people are cheated out of.  My kids are my rock, my reason to get up in the morning.  I have a great set of friends, too – all my buddies from high school.  When the chips were down, they were there for me.  We get together every Thursday night and we go fishing on the weekends when we can.  They are my extended family now.

I wish I could say that everyone stuck it out with us through all the crazy hard times.  Unfortunately and to our surprise, many people weren’t there when we needed the help the most.  I’m not bitter for myself, but my wife really needed them and they didn’t come through. On the other hand, though, there were the others who deserve to be praised, even knighted. My wife’s sister went so far as to buy the house next door so she could be there for us, which brings me to another great lesson that I’ve learned because of my ordeal. Hang on to those people who come through for you, and hang on to them tight.  They are your true friends, the ones whose love is unconditional, and the ones who give you a place to plant your heart.  For the others?  Well, it is a shocking thing, realizing that people you counted on may not hold you in as high of regard as you once held them.  It hurts all over at first.  Just realize they are who they are.  Some people just can’t handle the changes they see.  They are easily frightened, controlled by their own fears and issues, caught up in their own existence.  This is not where you need to be after a brain injury!  You need the strength of those who keep a positive attitude, who love you regardless of the fact that you may not be the exact person they remember.  You can’t take it personally.  It is their baggage, not yours.  Just let it go.

Sadly, I lost my close friend, the neighbor and colleague that I told you about earlier on in my story.  He was electrocuted while helping another neighbor pump out his basement after a flood.  I’m not surprised that he died while helping a neighbor. That is exactly who he was.  He was truly someone whose life had purpose, a man who many others, not just I, felt they could hang onto.  I will miss my great friend.  So, what is my lesson here?  To be more like him.  It is as simple as that. I keep his prayer card hanging in my armoire so I can see it when I get dressed in the morning.  It is a something I have to do so I won’t forget that he has died and embarrass myself by going to his house for a visit.  That is how bad my memory is.  I would never want to hurt his wife in such a thoughtless way, so I endure the painful, daily ritual of remembering that he is gone.

So there you have it.  That’s my story.  You were probably expecting that it would be more dramatic, maybe ending in a machine gun clad shoot out where we nabbed the bad guy after a tense car chase complete with wild stunts and death-defying feats.  It is ironic, given my job, that a simple hit from an out-of-control car inflicted such havoc on my life.  But, that is exactly what happened.   Do I regret it?  Sometimes, yeah – of course.  Mostly, though, I am pretty content with how things have worked out.  I have a new life now, one where my family and friends fill my time, my heart, and my soul.  I am proud of the life I led as a NYPD narcotics detective. And I am just as proud of the life I lead now.  The puzzle of my life has a thousand pieces to it, and I am learning how to fit them all together.

Thanks for listening,

Andy

Andy and Patty

Andy’s Story, written by Andy W, Patty W., and Paula Schmidt for braininjurystories.org

 

Harry’s Story

Harry has an attitude so optimistic and positive that it is fun to be around him. You ask yourself, “How in the world can that guy be so happy all the time? Well this is his story of hope.

Harry was a very talented guy who had it made. A great career started, a new car, a great skier and tons of friends. He was extremely intelligent, had plenty of girlfriends, but things were never good enough – he never really felt good enough. He had started doing drugs at a very early age, trying to fill a hole that he didn’t even know was there. By the time he had finished eighth grade, he already smoked weed regularly, took uppers, downers, and even LSD. The guy smoked cigarettes and he drank whenever he had the chance. In high school he did PCP then, in college, he was still doing drugs only now he discovered cocaine. But something was missing inside. He thought it was cool being with all the pretty girls but that just made him lonely. What was he looking for?  Just how big was that hole?

On March 2, 1985, he was out with a good friend drinking and using cocaine. He was driving home to the condo he lived in with his aerobics instructor girlfriend. Her sister and brother-in-law had come for the weekend. What was he even doing out? How big was that hole? While driving through the intersection at Armstrong and Olive, a pick-up hit the right side of his of S-10 Blazer. The impact threw him out through the right rear window. Nobody was sure how long he was on the road. What they do know is that a man stopped and went to phone for help.  When he had returned, Harry had been run over by another car! He spent thirty-one days in a coma. He was on a heart and lung machine, being fed through his nose and breathing by a machine with a tube through his neck. The guy had a massive head injury.  His brain had been damaged and was unable to keep his body alive, leaving him dependent on machines. His mom never left the hospital and his friends, who he could never pay back, didn’t either. VMC (Valley Medical Center now University Medical) emptied the waiting room and then lined the floor with mattresses so his friends could sleep.

People in comas can hear. Hearing is the last sense to leave us. They ask people not to speak of bad things when visiting because of this. His brother said that he would come in and talk about things he did when he was young that really upset Harry.  His family knew that his brother could hear him because Harry’s heart rate on the monitor would skyrocket!

He says he had some powerful dreams and one dream in which he believes he was given a choice. He was lying on an operating table surrounded by doctors and nurses. A doctor was explaining to everyone what had happened and how he was hurt. The last thing the doctor said was, “It is all up to him.” Then, he said he was walking down a dirt road with wheat for as far as you could see on all sides. He came upon a handsome man leaning on a rake or shovel or something, waving for him to cross over with him. He has played that scene through his mind a million times, and that man was leaning on a sickle. He had been given a choice. Life was going to be hard. He was hurt very badly and he knew it. He could have given up, but he says he kept going and didn’t even look back. He says that was because he wasn’t alone! He never felt alone the whole time!
He spent month at Club VMC on a heart and lung machine to teach his brain to regulate. Next, he was transferred to Community Hospital where he began rehabilitation. He had to re-learn absolutely everything, like how to walk, talk, eat, care for himself, where he lived, who people were in his life – everything you could think of. After the hospital, he was in rehabilitation five days a week, 8:30 – 4:00, for ten months of neurological retraining. He had already learned in the hospital how to take care of himself.  This part of his recovery dealt with his being able to think, reason, and compute things with enough speed to use in real life. He had to learn how to feel and express emotions again, and to interact with others. He had speech therapy, physical therapy, cognitive retraining, and vocational therapy. He says these were his options: give 100 percent every day or be handicapped. It really wasn’t a choice at all. The guy gave his absolute best every day. Now that he was out in the real world, he said there was no reason in the world not to give life his very best! You’ll see that he does just that.
When he left CSUF in 1983, his grade point average was 1.9. Big deal! He didn’t think he needed good grades. He was good, but in his heart he didn‘t feel like he was worth anything. His ego made him so proud and nothing he did could satisfy the need is his heart. After rehab, he told his therapists that he was going back to CSUF to finish his degree. His therapists all said, “People that hurt their heads like you did don’t do things like go to school.” His grade point average to finish his degree was a hard fought 3.3! He has finished his master’s degree in cross-cultural teaching as well with a GPA of 3.6 and began looking for a job teaching in Kindergarten or 1st grade.
Before he hurt his brain, he had an I.Q. of 168. He was extremely gifted but really had no idea of how absolutely gifted he was. After rehab, he applied to an organization named MENSA, an organization you get into if your I.Q. is in the top 2% of the people in the world. He needed an I.Q. score of 158. He didn’t make it; he now had an I.Q. of 130. His psychologist in rehab said that the test that he had taken was a screening test.  After contacting Mensa about his circumstances and further testing, he was told that tests given by psychologists could be accepted.  He took the tests given by his psychologist that qualified him to be a Mensan!  He says that he struggles to fit in and he says the people here (his co-workers and the guests including the kids) at Wild Water have helped him a great deal. People think that because he walks and talks differently there is something wrong with him…NOT! He tells us that the world wants to tell him he’s disabled and he says that’s fine, he gets the best parking spaces!

harry2
To celebrate his accident every year, he runs the Los Angeles Marathon! 2010 was his ninth time! The marathon is a great time. He met and ran with Garret Morris of Saturday Night Live, he met John Tesh, he met and corresponds with Dr. Bill Burke, the president of the marathon. He’s met Danelle Folda, Tylyn John, Charlotte Kemp, and Pamela Bryant, Playboy centerfolds of the Playboy Running Team. He met Pat Connelly, coach of the USC cross-country team. He rode his bicycle to Sequoia/Kings Canyon National Parks, through Yosemite a couple of times, and from Cambria to Solvang five times. He does biathlons, step classes, and has even learned to Rollerblade. He says triathlons are the final frontier! He says that the most amazing thing he does is sing in the choir at Northwest Church, where he sings praises to Jesus Christ, his savior, guide and friend.

harry4
He says that a career for him has been a struggle. He didn’t know where he was supposed to be until he started substitute teaching. He says that he gets to help kids to become the best they can be, and can’t believe he gets paid for that. Right now, after finishing his master’s degree, he is now looking for a permanent teaching position.
His brain goes like the speed of light but the part of his brain that modulates how fast he thinks and how fast he talks has been damaged. He has had to relearn a sense of rhythm at a metered pace.  This enables him speak at an understandable pace until he gets tired. Life is still difficult for him and moving his body to walk, run and to speak is a conscience effort. That it’s not a ‘natural’ function any longer. Even after all this time, he just keeps trying. He doesn’t care for any other option!
He clings to Jesus as his only real hope and reason for having been given this life.  Like in his coma, he doesn’t see Him, but he knows he’s not alone. He was dead, but now he is more alive than he ever could have imagined.  The love he was looking for he found nowhere else but in Jesus. And, after what he has seen and experienced, he believes that there is something the Lord wants him here for. He says that all that has happened to him wasn’t for his benefit, but for God’s Glory to be seen by his family/friends.

He now functions on a level far above average, even though parts of his brain are dead. If you see him smiling all the time, too joyful to just be happy, know that he has joy.  He says that every runner wants to run a marathon, every bachelor wants to meet a Playboy Bunny (the girls he met now have this story), and everyone on earth wants to be able to sing. El habla Espanol tambien! Que Espanol es una lingua muy romantica! El dices que gente en el mundo piensen Frances es la lingua de amore. El dices lo es Espanol! He speaks some Hungarian and Romanian as well!

Chapter 2

Now, thirty years later, he has had a good life being active in church and around town.  Running, speaking, and moving correctly are still a conscience effort. He fell at times when he was training for marathons because he lost concentration.  When riding his bicycle with the clipless pedals, he sometimes stopped and fell after having trouble getting out of the pedals.  After injuring his back at work and falling many times, he has destroyed a few vertebrae in his spine.  He had a surgery to put in a brace to secure his spine and make up for the missing vertebrae.   After surgery he was limited by his walking using a wheelchair and then a walker.  He had to give up running and walking to stay fit, but he stayed active.  After his first surgery, his back was still bothering him and he found out that his spine did not heal properly.   He had to have another surgery, this time in San Francisco at UCSF.
The surgery was done using a rod to hold his spine together.  He had to rehab again sort of like before only now he couldn‘t lift bend or twist.  He had to learn to walk, get dressed like putting on his pants, shoes and socks, and his balance with the rod on his spine.  He was told before the surgery, “You will be sitting on the couch for a year.” to recover.  His life had been changed again.  In his mind, he’d ask what is the Lord doing now?  He had a difficult time just hanging around his house, playing Jungle Jewels on Facebook and solitaire on his computer.  He went to choir rehearsals but was unable to walk up on the platform due to his balance.
He had physical therapy for a few months after his release and worked on walking and strengthening his core.  After 6 month check-up with the surgeon, he asked about going to the gym.  He was still using a walker but he had a goal to get rid of it.  He got on the stationary bicycle to begin working his way back in shape, lifted light weights to gain some strength and finally getting in the pool to walk.  In the pool, he could walk without his walker.  Now after a few months of walking in the pool, he was hoping to run in the pool!   Now he is back at the gym and singing in the choir.  In the first week of February 2015, he had his one year check up with his surgeon and was told that all was good and to try running in the pool and lift heavier weights!  So he is running and getting in good shape again!

He can sing at church again and is able to stand solid.  He started singing in another choir called Hearts on Fire. What a fun group.  They sing some 60’s, 70’s and 80’s pop/rock and they just recorded their first CD!

Life is different now because living and moving without using his back has been a big change.  Getting dressed, how he moves, and other simple tasks are more difficult, but he continues to press on.  Life is a marathon and he just keeps going on praising the Lord with his life!

harry3
WILD HARRY’S CORNER O’ WISDOM

Work like everything depends on you and pray like it all depends on the Lord! Then give life your best effort and watch what He can do with you!
Life isn’t about what you can get. When a person dies, nobody remembers what a person has, they remember what one gave! Life is about giving!
Yesterday is history, tomorrow a mystery, today is a gift. That is why today is called the present!

If you have any questions, would like to talk with Harry about this or would be interested in having Harry speak for your group/organization you can reach him at harwee3@sbcglobal.net.again.

Maddog and Tish – Their Story

     I had been in quite a few relationships for a young woman of 19, the year I met Maddog, my Joe.  Our story isn’t that grand or different, but when we met, it was magic. 

    I had been around bikers and veterans for most of my life so it wasn’t strange that I happened into a biker bar called Bonnie and Clyde’s. Joe was in the bar, playfully asking for kisses from all of the woman.  That was back when it was safe to do that sort of thing.  I was drinking seven and sevens and not feeling any pain. Joe came up to me and said it was his birthday and asked if I would give him a kiss and the rest, as they say, is history.  Joe and I go married on October 4, 1975.

     Before we met, neither of us had an easy life. We both suffered from wounded spirits.  Joe was (and still is) proud to be a Vietnam combat veteran, but he had suffered both physically and emotionally from his time there – 1968, during the Ted Offensive and the heat of the conflict. When we found each other, everything seemed possible again.  Joe was my life-line and my healer. 

   Skipping ahead, the early years together were fantastic.  Joe had a life-long dream of becoming a photographer, but his responsibility toward his family was strong. He stayed employed as a waste water treatment mechanic in order to put food on the table, placing his dream to the side until our sons were grown. 

     By the year 2005, we were looking ahead toward retirement.  Our sons were older and it was finally time for us. We had an Electra Glide Ultra Classic Harley and we planned to travel the country, just us, our bikes and an Airstream. Joe had taken courses at the New England School of Photography and the Art Institute of Boston.  He would finally get to become the photographer he always wanted to be. Given his pride in the USA, I can only imagine the beautiful photographs he would have taken while we toured cross-country.  We both had dreams and plans, but, as so often happens, they were taken away from us by a senseless accident.

      On August 17, 2005, at 3:45 p.m., Joe was riding his Harley home from the Veteran’s Administration when our lives changed forever.  He had stopped his Harley at a red light, waiting patiently for the light to turn green. An elderly woman blindsided his Harley, throwing Joe 30 feet in the air. She later claimed she didn’t see him.­­­­­­­­­­­­­­­­­­­­­­ Joe spent the next 2 ½ weeks in a coma, suffering from a blow to the head that caused a pseudo-aneurysm.  

     After he awoke from his coma, Joe spent a month in a rehabilitation facility then he was sent to a state nursing home to recover from his injuries.  This nursing home supposedly specialized in neuro-rehab, but they did a poor job.  The staff there didn’t deal well with bikers, either.  We are a different breed of people.  All they did was drug him up. It took me 16 months to get him out of that hell hole, but I fought every day until they finally released him home.  Fortunately for others, this nursing home has since shut down.

     We often live as shut-ins now, but, as my elderly friends say, at least we can rent a van and go places for the day.  As far as friends go, we have zip, nada, none.  Once Joe was injured, they all disappeared.  So we are alone again, like in the beginning.  Only, I get lonely for my Joe.  Joe was always a strong-willed man, and he still is, to some degree.  I miss the intimacy and the closeness we once had.  I have always had a hard time with other woman so Joe has always been my best friend.  When times are tough, I keep thinking in my mind what would Joe have done in this situation?  As a Vietnam combat soldier, Joe endured the horrors of the Tet Offensive. It took great strength and endurance, for which I am so proud.  I remember the Joe I used to know then I plod through, trying to take each day in stride.    That’s the influence Joe has had on my life. 

     Joe inspired his sons to be anything they wanted to be.  I guess you would call them successful.  Our youngest became a marine and a war veteran and our eldest son is a vice-president for a pharmaceutical advertising agency in New York.   We are proud of both of our sons.  Mostly though, our concern was that they grow into decent human beings.  The thing about life is, there is more to life than work, there is also your life! I think they learned this lesson well.

     My advice to caregivers is simple.  Take a deep breath.  It’s gonna be a bumpy ride, but if you love unconditionally, without reservation, and have faith in your own abilities, then you will be OK.  You will have to deal with state and federal morons – that is a given.   It is a very lonely lifestyle.  If you can handle the abject loneliness, then you will be alright.  You have the toughest job, but there are rewards. For me, my Joe is my world.  He healed me, and now I have his back.  My love for my Joe runs very deep.  No lousy accident will ever change that.