Author Archive for John Capanna

05
May
13

Harli’s Story

My name is Harli Mishel White I am 17 years old, Racing is my passion. If it wasn’t for the good Lord above and all the thoughts and prayers, I wouldn’t be here today sharing my amazing story.

Racing is and has been a big part of my life. It all began when I was a little girl watching and helping my father race. I have always had the dream to be a race car driver like my dad.
When I was old enough to have a racecar of my own my dad surprised me with a 600cc restricted mini sprint in Nov. 2007 when I was 12 yrs old. I had practiced from Nov on the weekends up until the first race of the season At I-44 Speedway on April 5th 2008. It was a normal race day on Saturday but my first race ever. I was prepared but nervous at the same time.
My first race ever in a Mini Sprint in the B main event I was doing well. Going around turn 4 I barely hit the wall and my car turned over on its side. Usually track officials will turn the cars upright. But that did not happen. All of a sudden my Car burst into flames. I immediately turned off the car and tried to escape, I was trapped in the burning race car. The steering wheel would not budge and seat belt was hung up. The track used all the extinguishers they had, which did not touch the fire at all. My dad along with others was trying to get me out. At That moment I gave up and started to pray to God.
A young man by the name of Donnie Ray Crawford, who was another racer waiting in his car for the next race saw a ball of fire and ran to the accident and pulled me from the burning flames. I believe that Donnie Ray was an Angel that God sent to rescue me.
I was rushed to OU Trauma Center in OKC; there my Family and Friends came to the hospital to see me. I was very calm and really didn’t know or think I Was burned too bad. I thanked everyone for coming and ask that they pray for me. In all reality I was burned really badly. I am burned 45% deep 3 degree. I was medi flighted by Angel Flight Services to Shriner’s Hospital for Children in Galveston TX. The doctors were waiting on be to arrive and went straight into surgery. I had 3 graph surgeries and 5 reconstruction surgeries. I was in the burn unit for 21 days. Most of those days on my Belly, my family and I had to stay for therapy for 3 months after getting out of the hospital. I was determined to get back to cheering, playing basketball, running track, softball and eventually racing again.
While I was in the hospital my parents were always by my side. I was never alone for a second. I know it was really tough to watch their daughter to through so much pain but they bared through it and so did my grandparents and many other family and friends. I had my 13th birthday in the hospital and received many letters and gifts from all over the world of encouragement.
I left Galveston, TX to go home in July and went back to school in August. The town of Lindsay was so supportive and always doing something for my family and I. I received many letters and other things from all over the U.S. and other countries while I was in the hospital.
When I was better and capable of racing again I asked my parents for another racecar. I begged and begged for a few months until they finally decided to let me race again, and they surprised me with a brand new racecar for Christmas in 2008. I basically told my parents that if they didn’t let me race again I was dead anyways.
I have been racing ever since in 2009 I had 4 wins, 2010 I had 9 wins, 2011 I had 7 wins, 2012 I had 2 wins.
I have had many opportunities this year in my racing career. I had the chance to drive neighbor’s coffee, 2 barrel sprint car. This year 2013 and last year I will be racing sprint cars all year round, in the 305 and the two barrel sprint car. My story was featured on the OWN Network, and I am going to be in a documentary called: Trial By Fire: Lives Reforged, which will be released in 2012.
If it wasn’t for God and Donnie Ray, and Shriners Hospital I wouldn’t be here today living my dream.

19
Dec
12

Comoing Soon and Happy Holidays

Hello to everyone. I just wanted to let you all know that we will be featuring another guest burn survivors story on Beyond Recognition next month.A little lady with a big spirit named Harli White will be sharing with us.Until then have a Merry Christmas and a very Happy New Year. As a foot note if you pray please pray for the families who will not be together this Christmas and for those suffering from the horrible tragedy in Connecticut and elsewhere in the U.S. and around the world. May God bless us all in the coming New Year and help us all to find peace within ourselevs and bring it to the world around us.

John

21
Aug
12

Calais Story

This month I have another guest burn survivor writing for the blog. Calais is one of the burn survivors who is featured in Trial By Fire: Lives Reforged. I’ve had the pleasure of meeting her and her parents. She is a lovely , talented and bright young lady who exudes confidence. She is a great roll model for all young women.

Before I delve into the story of my injury, I should perhaps begin with a bit of biographical background. I grew up striving to be the perfect child in every way: school, sports, behavior. Not only did I have to have straight-A’s, but even a 100% in a class wasn’t acceptable to me if bonus points had been available. I was THAT kid. On top of self-imposed academic pressure, my mother was a model. Wanting to be her mini-me, I followed in her footsteps and modeled from the time I was a baby. It wasn’t something I aimed to make a career out of, but I knew I would need the extra savings to be able to afford whatever Ivy League school I hoped to attend.

 

What most people didn’t know at the time is that I had been depressed since I started middle school. After putting so much pressure on myself to be perfect, I felt like a failure in every way. I woke up every morning in high school, looked in the mirror, and couldn’t help but mutter “I am so ugly”. Of course, looking back at pictures of myself from before, I can’t help but want to smack myself for being so blind. But what is also blatantly obvious to me now is the pain and sadness behind my eyes in those photos.

 

My junior year chemistry teacher – my favorite teacher – had three sons. The eldest was in my class and the youngest (11 years old at the time) was one I had seen several times since she also happened to be my basketball coach. He was a very sweet, fun kid who loved science. He would sometimes be around in class when we performed experiments, even being brave enough to perform some of the things that freaked me out to do – like dropping a lit match down a long tube where a very small amount of flammable gas was to see it go “poof”. His mom even allowed him to do mine for me.

On Monday, January 23rd, 2006 I had chemistry class right after lunch. It was a class I loved and that came pretty easily to me. I had seen the youngest son that past Friday after class because he was home sick from school. So I wasn’t really surprised to see him again that day because I figured he was still sick. He was fine, he said, and told me he was playing hookey to see the demonstration his mom was doing that day. The theory behind the experiment is that different chemical salts, due to their structures, burn at different light frequencies, therefore appearing as different colored flames. At the beginning of class, she and the young son together set up the dishes of a clear liquid with the chemical salts on her desk at the front of the classroom, uncovered.

 

About forty minutes into class, the teacher said it was time for the demonstration. I pulled my friend and deskmate, Cecilia, up to the front with me. The teacher performed it at her desk instead of in either of the two chemical hoods available in the classroom. None of us wore our safety gear: “When I do demonstrations, it’s not necessary,” she had told us before. One by one, her youngest son dropped a lit match into each of the seven dishes from left to right. The lights were off, and in front of us was the coolest show of the seven ROYGBIV flames. After a minute or so, the red flame on the left began to diminish. The young son said, “Madre, the red one is going out.” She dismissed him, saying something along the lines of “It’s too dangerous”. After a little more time passed he repeated his request. This time she reached into the sink on her desk and pulled out a gallon-sized jug full of that same clear liquid from before. None of us knew what it was at the time. As she uncapped it she said, “I better be careful or the bottle will explode.”

Something wasn’t right. Every fiber of my being buzzed with fear, and in that split second of time as she began to pour I threw my hands in front of my face. WHOOSH!

 

It turns out that clear liquid was methanol.

 

It exploded into an orange fireball that hit me head-on. I fell over onto the ground and kept thinking, “Oh my god, oh my god, I’m on fire. Oh my god.” I immediately started rolling from side to side trying to put it out. It wouldn’t stop burning. I heard all of the students screaming as I felt my hair singe to my scalp and smelled the most horrendous, indescribable smell of burning hair and flesh. I decided that the flames weren’t going out because I was on a linoleum floor, and that I needed a blanket to smother it. But I had no idea where the fire blanket was, and I couldn’t stand up because my polyester uniform skirt had melted into the ground. So I pulled myself across the floor to the doorway leading out to the hall where it was carpeted – perhaps carpet would work? By the time I reached the door, the room was silent. All I could hear was the sound of the flames still burning and the fire alarm. The methanol had gone down my throat, so when I finally tried to scream for help, not even a whisper came out.

 

I had no concept of time, and for all I knew it had been 10/30/60/120 seconds of being on fire. I looked up at the door and saw the fire extinguisher next to it on the wall, but I couldn’t reach it. It was then that I figured no one was going to help me, and I was going to die. Just as I started to pray that I would die as quickly as possible, I heard “Oh my god!” I looked up and saw my favorite janitorial staff member in the doorway. He grabbed the fire extinguisher, put me out, and dragged me into the hallway as he continued to put out the other flames in the classroom.

What happened after is a blur. I remember every detail, and yet it all seemed to happen at once. I was sitting with Cecilia and another student that was burned (transported and then later released from the hospital that day), and I remember repeatedly asking, “Do I look okay? Do I look okay?” I kept imagining I looked like a monster – perhaps my face was melted off or my nose was missing. The teacher came around the corner and told me I would be okay, and then darted off with her youngest son, who had also been seriously injured. Out of nowhere a biology teacher/football coach came, scooped me up, and sprinted down the stairs to the ambulances. I shared an ambulance ride with the teacher and the youngest son. During the ride to the hospital the teacher clutched her burned hand, in shock and unresponsive to her son’s cries, before fainting. I inwardly rolled my eyes. I did my best to calm her son down as he kept saying “Are we going to die?! We’re going to die!”

 

I won’t go into the details of the hospital stay. Anyone with any experience with burns already knows the story – dressing changes, the scrub room, surgeries, illnesses, infections….all in an endless cycle. Once released, I immediately went back to the world of academia. I was tutored by a couple of my teachers to finish what I had missed that second half of the year in time to take the Advanced Placement exams for college credit. I was tutored that summer in the chemistry I had missed because I planned on taking AP Chemistry the following year. I may have been missing quite a few layers of skin and dignity, but I was still THAT kid.

Before all of this had happened, my family was dealing with some serious financial uncertainty. While I was still hospitalized, we were already receiving bills from collections. We had what was supposed to be incredible health insurance, but they said to my father “We do not cover ‘catastrophic’ claims”. They also said 1) that the school’s insurance company is responsible for paying – which makes sense, right?; and 2) to get a lawyer. The problem was that the school’s insurance company said, “Well, she was so negligent, and it is in our contract with the school that we are not responsible for covering something that is caused by a teacher’s negligence”. So without letting me be aware of any extra stress going on, my parents found an attorney.

 

Despite what I know many of the students and teachers later thought of us, my family does not like to sue. We really, reallydid not want it to get to that point. But we unfortunately had no other options because we simply could not afford to pay for my present or future care. For this and many other reasons, my senior year was a living hell. I was already so angry not just by what happened, but that my favorite teacher never came to visit me in the hospital when she was just doors away with her own son. When I returned to school, I found out that the teachers had been instructed in faculty meetings to tell students when they asked questions that it was an “unfortunate, unpreventable accident”. So when I tried to tell some of my friends what happened, they didn’t want to hear it. After all, she was still on campus – what I was saying happened couldn’t possibly be true if she was still there…right? Those other students that were in the classroom at the time simply said it was a mistake that she made, but she shouldn’t be punished for it.

I felt so isolated and alone that I began to act out and push away anyone who even tried to befriend me. Cecilia and I were in and out of classes for doctors’ appointments and physical therapy, but no one understood that. Other students labeled us as disruptive in class, entitled, and just plain mean. I honestly can’t remember much of my senior year because I blocked out most of it, but I’m sure those students weren’t TOTALLY wrong. But I can say we never felt entitled to anything. It was made very clear by the headmaster where we stood on the list of priorities at that school, especially when people would do things like cutting out articles about the lawsuit and hanging them up outside of the classroom where it happened.

 

I truly felt like my pain would never end – my injury was all I was and would ever be seen as. It may surprise some, but the loss of beauty was probably one of the first things I was able to get past. I was angry with myself for taking for granted how beautiful I truly was before, but my anger at the injustice of the whole situation easily overwhelmed the rest. After I graduated, I was fortunately able to attend the yearly Angel Faces retreat before heading off to college. There’s no other way to put it except that it saved me. Up until that point it never even occurred to me that my life didn’t have to be defined by my injury. That piece of wisdom alone worked wonders.

 

It took a couple more years to really grow into my new skin, so to speak, but I am now happier than I have ever been. It has been a while since I have felt even the slightest anger at the school or teacher – it has been even longer since I have had dreams of punching or yelling at her for such negligence. The “big picture” perspective my experience has given me on life is invaluable, and I would not change what happened to me even if I could. It has given me the chance to let the smaller things go, while being able to value what is truly important.

happened to me even if I could. It has given me the chance to let the smaller things go, while being able to value what is truly important.

 

I am still far from perfect or “cured” of ever being sad or angry again. I’m human, and there’s no such thing as having a life full of rainbows and sunshine. As much as we’d like to think that nothing bad would ever happen to us again because we’ve gone through so much trauma already, it’s just not true. We have to live life one day at a time, and enjoy the happier times as they come so we can better cope with the hard times.

Be prepared in the back of our minds for the worst, but focus on and hope for and believe in the best.

02
Jul
12

I dont often as…

I dont often ask for money to support causes but this is dear to my heart…the documentary Trial by Fire: Lives Reforged has been selected by the IFC to preimier on the east coast; New York City and on west coast in Los Angeles . The films producers need donations to edit and finish the film . If you are interested in helping out here is the link to the website…. Please post this on your FB page if you like. It will help us a lot..thank you 

   http://trialbyfiredoc.com/

18
Jun
12

Riks Story

Since I am taking a break from the blog to focus on writing my book,I’ve decided to publish stories from other burn survivors.The following is the story of a burn survivor who lives in New Zealand….Enjoy…John

MY STORY

by Rik.

My Story as a Burn survivor began in 1980, how I came to be burned doesn’t seem as important now, as how I learned to deal with it and how I continue to do so.

However, I was admitted to a burn unit in the UK, where I was working at the time. I was 22 years old. On admission, my injuries were assessed as 45% full thickness or third degree burn, with some second degree and superficial burns. Unfortunately the genital region was also affected, and it wasn’t until some time later I regain full function, and the area still looks different to the pre burned area.

My grandmother was living in the UK at the time, and I asked before I became too ill, she not be notified, as the shock would have been too much, as she was in her 80s. My mother was notified in New Zealand, and she was shocked and alarmed when she received the call from the hospital.

For a few days, I felt ok, as if nothing had happened, but I believe from reading of other cases, this is common with survivors of serious burns, and I even tried to get up to go to work. Unfortunately, this did not last and after a few days I was put into an induced coma, and remained in one for the best part of two months. I believe burn treatments have changed over the years and it’s managed differently now.

I don’t remember very much of the next two months, only fragments. The terrible pain, hallucinations and delirium, and drifting in and out of consciousness. One burn survivor described it as being scraped with a wire brush 24 hours a day and this is exactly as I remember it. I guess it was tough having no real family support for some time, really being largely on my own, in a strange environment. After a few weeks my condition deteriorated and my mother was asked to come from NZ, a massive undertaking for her considering the distance and expense involved.

For a while, my condition was very bad, with mainly infections, but eventually I started to improve, the progress wasn’t rapid but a daily improvement every day. I was still having operations, but I started gaining weight daily – a good sign, as my weight had plummeted. As my physical health started to improve, so did my mental health, and the realization of my surroundings and circumstances. I did lapse into depression at times, because the whole ordeal was overwhelming.

As I had improved well, I was transferred to a general surgical ward for the next month, as this was a chance to be with others, as there were probably about 20 men in the ward, from all over , even a Nigerian man who had been given a completely new nose, as he had lost his in an accident. The downside of being there was there were mirrors. In the burn unit there were no mirrors, but unfortunately one day curiosity got the better of me and I had to look in the mirror. I wish I hadn’t. The image I had of myself was the image I had before I got burned. In the burn unit I had been told – “you look good”, but when I looked in the mirror for the first time, I looked anything but. It was a shock – no hair, scabs, and big areas of scarring on my face. It was a real setback.

Toward the end of the month, the hospital had decided I was well enough to be discharged, as the beds were required for more urgent admissions. This left another dilemma – the journey back to New Zealand with my mother. At the time, although I was better I still wasn’t in really good shape – problems with walking, severe itching. However, the flight was arranged and my mother and I. left from Heathrow airport to fly back to New Zealand – a 24 hour flight without stops. The flight was very uncomfortable due to the severe itching, but we landed back in New Zealand in Sept. 1980.

When I came off the plane, I was shattered– in a wheelchair, no hair, burned areas on face, body still healing up, – and psychologically shattered as well – no money, no job. I had developed “dropped foot” a condition if a person lies in bed too long without walking – it affects the tendons, and it takes several months to walk properly again, with a splint. After a few days at home, I was readmitted to hospital –in Auckland, NZ, Unfortunately, the hospital decided I may have brought back an infection from overseas so I was put into isolation for the next two months.

It was an unhappy time, being in isolation, tremendous itching and depression probably from the lack of others to talk to. It was also the early days of wearing pressure garments, and the hospital seemed to have a rigid insistence on me wearing one – It seemed like torture. I wore this skintight garment, only to have it pulled off me daily for baths, and scabs would form which would be ripped off as well. I told the hospital I did not want to wear one, and they stopped trying to put one on me. The depression got worse and I was treated with different types of drugs, even those used for schizophrenia, but they didn’t work because it was just depression. This went on for about two months with no progress being made and eventually my Mother made an appointment with the chief surgeon and I was allowed home. Some years later, I found out some of the medical staff had been in favour of sending me to a psychiatric facility, instead of going home but luckily my mother won out.

After release from hospital, I went to a rehab unit where I underwent physical therapy to give me more extension under my arms, as I could not lift them above my head well, and learning how to walk well again. As well as this, we made and constructed items – woodworking. After three months my time at the unit came to an end and it was time to look at the future, although I did further exercises at the Y.M.C.A. With very obvious facial scarring and without having had reconstructive surgery my chances of employment seemed dim, and unfortunately or fortunately after a few rejections, I decided I wasn’t ready. Instead I found work at a facility for the disabled doing mainly light factory work, although the pay was minimal.

I continued to work there for four years, and did get the chance to have further surgery, which made improvements. Eventually I left the facility and went to work in a shop, although the hours were very long, standing all day and very tiring. I had been prescribed tranquillizers to deal with anxiety after my injuries =PTSD and I started using them regularly to get through. This became a pattern for at least the next ten years.

Moving into the 1990s, it really was a decade I would prefer to forget completely, I can’t remember anything good about the entire ten years. It really was a decade of struggle. In the early 1990s I lost my job, and became unemployed. This was to really form the pattern of the next ten years – unemployment, depression, menial work, giving up the work, unemployed and continuing on. One good aspect of not being in regular work was I could finally get some counseling, which led to being able to come off the tranquillizers over several months under medical supervision, although unfortunately alcohol did become a substitute for a time. I was glad when the 1990s finished.

In 2000, things started to pick up. As I was still classified as disabled through a combination of depression and burns, I was offered a place on a Government funded computer and business administration course. I developed an interest in computing and took two courses which I completed. After that, I decided to continue with further education and with help from my mother, who now had a more comfortable lifestyle through shares and investing wisely on the advice of an accountant who knew business and became a friend, I was able to embark on a Certificate of Business at a College. I completed that over 18 months, and although it was tough going I got through.

After leaving the College I decided I really didn’t want to have a career in business, so I had to find another option, as the College was only geared to Business. I opted to go to another University and do an Arts Degree in Social Science which I completed over six years part time. I was always a long held ambition of mine to achieve a degree, but through circumstance previously it wasn’t possible. Unfortunately over the years I had started to experience health problems again related to burns, which were due to the amount of weight I’d put on over the years, which made the scarring around my stomach very tight.

From 2008 to 2011, I underwent another four operations which have corrected the problems, and I also graduated from University in 2011. Since then I have returned to work, although mainly part time working in the care giving field with clients, mainly older men who live in the community. Unfortunately, the employment situation in New Zealand isn’t good at the moment, so it isn’t possible to get exactly the work you want, however I enjoy dealing with clients, and prefer it to many other types of work. I’ve resumed my interest in music as a guitar player and bassist. Playing with local musicians and writing and recording songs which I have been submitting to song contests, so hopefully I will have some luck with one of them. I’d played before I got burned but lost interest for a long time.

These are just some final thoughts. As I look back over the last 32 years, I certainly would not want to repeat a lot of them. During the first ten years after my injuries, I struggled often with two dominant thoughts and emotions: guilt and loss. The sense of guilt was enormous, and I blamed myself maybe wrongly for all I’d put my small family through – the terrible worry, the expense of having to be there and pay airfares, luckily the United Kingdom had or still has a system in which if an individual works In that country and pays tax, then they covered in their comprehensive health system. I would have hated to think what would have happened if this wasn’t the case. The sense of loss surrounded my physical loss. Although children are thought to be badly affected by burns, which they are through school, an adult burn survivor goes through a different trauma, as they have had their old body longer, and when it is destroyed it takes longer to come to terms with, especially if you liked the way your old body looked. Both these strong thoughts/emotions of guilt and loss led to my dependence on tranquillizers as a means to block out. Physical acceptance is certainly a very gradual process.

As I move through middle age, what the remainder of my life holds – I don’t know, but hopefully it will be easier, stable but rewarding in its own way. There have been books which have given me strength over the years – books by Elizabeth Kubler-Ross, M.Scott Peck and Susan Jeffers and others and well as a book I managed to find called: “Journeys through Hell – Stories of burn survivors’ reconstruction of self and identity” by Dennis J. Stouffer. – a great book for burn survivors.

14
Apr
12

www.creativeexpressionsinwood.org

www.creativeexpressionsinwood.org

01
Apr
12

what a life

Who could have ever imagined that I would have the life that I have today? I certainly didn’t. Not lying in the burn unit lingering somewhere between life and death. I was sure my life was over, I felt hopeless and I was broken in a way that I didn’t even know existed. That brokenness is one of the reasons that I have the life I have today. The ‘accident’ drove my life onto another course and set me up for the ultimate indignity; Public deconstruction. My life fell apart on the public stage and it was pretty much laid bare for anyone to see. It had become quite obvious to just about everyone who knew me and some who didn’t that I really couldn’t function anymore. After many years of surgeries and a grave dependence on narcotics my life had finally crash landed. As someone once said “any landing you can walk away from is a good landing”. I agree. At least today I agree. Although I wasn’t really feeling all too positive about it back then, as I stumbled through the wreckage that had once been my life and sorted through all the fragments and pieces . Turns out it was, in a major way. I had been handed what would turn out to be the greatest opportunity in my life by some Divine Power, Universal Consciousness, call it what you want . Many people were harmed in the swirling chaos that I had once called a life and everywhere I looked I saw collateral damage. I had a lot of work to do, but thankfully I didn’t have to do it alone or all in one day. With the help of that same Divine Power, Universal Consciousness and a whole sh*t load of people I was able to experience a transformation.

             A spiritual transformation that has led me to the life I have today. Spiritual to me doesn’t necessarily mean something mysterious or religious; although it does have some of those qualities. To me it’s simply the unseen powers that are both within us and outside of us. It’s about finding the Highest good in myself and others and using that to serve. I use the capital ‘H’ because I believe that it is the part of us that is directly connected to the Infinite powers that be. I also want to say that I’m really not all that spiritual for the most part, I have a pretty solid intellectual understanding of spirituality but when it comes to the emotional part of it, I have lots of work to do. As I’ve mentioned before many of the things that I’ve gone through have not been pleasant. As a matter of fact some of them were excruciatingly painful. But they have been fruitful in that they have  furthered my own personal growth and understanding of me and my responsibilities to myself and the world outside of myself. My involvement in my recovery from the trauma of the burns that almost killed me and the drug dependence that almost finished the job has been my saving Grace. Sharing with others , whether in a group of addicts looking for a way out of their own wreckage ,burn survivors looking to heal from the trauma of their burns and reintegration into society or talking to someone in the supermarket who is curious about what happened to me, it’s all service.

          Visiting a local Girl Scout troop a couple of  weeks ago was one of my favorite experiences so  far .  After reading an article written ( in three different publications, two local and one magazine  with world-wide distribution) about the work I do with wood I was contacted by a local Girl Scout troop leader who asked me if I would please come out and share with her troop of 4 and 5 year olds. I immediately said yes and I spoke with the troop leader, a lovely lady by the name of Christine. We shared our thoughts on the subject of looking different and how beneficial we think it would be to talk  to children early on in their lives to help them understand some of the differences they will encounter with people in life and the diversity that exists on this planet. The other important issue we wanted them to understand is that when someone does suffer a tragic accident or is born with some challenging disability whatever it may be it doesn’t mean that they can’t have a happy and fulfilling life.

              I stumbled upon this great wisdom as a result of a tragic accident at 20 years old., just a boy really getting started in life. When I went to the Girl Scout troop meeting I wanted to show them that I was just like them and everyone else. I just didn’t look like them. In order to accomplish this I told Ms. Christine I thought it might be a good idea to prepare the children by showing them a picture of me, so that they would be a little more at ease when I came in to see them. I brought pictures of myself to the meeting picture of me before the burns, after the burns, with my family, children ,wife etc. And some from my world travels. I also brought some of my woodwork that had been featured in the magazine and newspper, along with the magazine itself, Woodcarvers magazine. And I really floored them when I promised to show them something that none of them, their friends or their families had ever seen before. Ears in a box! My prosthetic ears which were hand-made by a former CIA anaplastologist named Robert Barron a very interesting and brilliant man. They couldn’t believe their eyes when I opened the small blue box and inside lay two perfectly life-like human ears complete with piercings. I passed them around so the kids could see them close up. I talked openly for quite a while and they sat and listened attentively to my description of what happened to me and how I recovered and what it was like at first and how it is today.

               And then they asked questions. Some of them were eager to ask questions and I told them that they could ask me anything that they wanted too. Some parents were in attendance too but they really didn’t interact, most just quietly sat in the back watching and listening. After the meeting had ended a couple who came in late brought their son over and I sat and talked with them for a short while. It was very different from anything I had done before in terms of speaking to a group about my burn recovery, but just as gratifying. Maybe more so knowing that in some small way I may have touched the life, mind and spirit of a child before they became closed off from the world in which we live. It is our responsibility to give our children the knowledge that they need so they can do better in the future, than we have done in the past. Let us help them to not carry our prejudices, biases and those of the world with them, but instead to travel lightly with open hearts….. 😉

14
Feb
12

Valentines Day, Relationships And Self- Love

Valentines Day is by all intent and purposes supposed to be a happy day for people,especially couples. Filled with Valentine cards,candy,flowers,other gifts and hopefully love. But for some people Valentines day can be a sad reminder that they look different or don’t have a partner . And so they think no one will ever accept them,let alone love them. I felt much the same way after my burns. I was burned over 90% of my body in an oil refinery explosion when I was just 20 years old. The greatest damage was to my face . I lost both ears,part of my nose and had to have my entire face reconstructed.I was hopeless back then,but as I said to someone the other day at a burn survivor group at our local burn unit at Lehigh Vally Hospital.” We’ve been in recovery from our burns for many years ( 33 yrs for me) we can see the light at the end of the tunnel,because we’ve been through the tunnel.Most newly burned people can’t even imagine that it exists. That it will ever get better. And I’ve learned that it doesn’t matter where your scars are on your body or what ‘beauty’ you may have been left with. The scars become the focal point and we fear rejection. I’m no authority by any measure on love or relationships,so I’m just sharing what I have experienced in the last 33 years. I had a couple of different women that I dated and was involved with when I was injured and for whatever reason those relationships didn’t go anywhere. Then I meant a physical therapist that I dated and a candystriper that I went on a date with and this was all with in two years of my burns and I still had extensive facial reconstruction that needed to be done. I’m not gonna say I wasnt self-conscious. I was and still am sometimes. I’m not sure I know anyone who isn’t from time to time. Non burn survivors included. In 1983 I meant a beautiful,energetic 19-year-old women named Sonya . We had fun together and connected on a level that felt really good. Eventually we went our separate ways mainly because of my ongoing struggle with narcotics dependency as a result of multiple surgeries. I soon meant and married someone else. She was also quite attractive by societies standards and had two children from previous relationships. Ours was not a healthy relationship ,as we both had our share of unresolved issues and growing up to do. We had two children together,separated in 1991 and divorced in 1997. I finally found my way to getting off of the pain medicine completely in 1996 and I’ve been clean ever since. I had several more or less casual relationships with woman between 1996 and 2002. I ended up getting custody of my two daughters in 2002 and found out how difficult it was to be a single parent. One day I was asked to travel some distance to the Pocono mountains in Pa.(I lived in NJ at the time) to share my story with some other people in recovery . It was January 2003 and almost a year after I gained custody of my children. I walked into the building where the gathering was to be held with some friends from NJ in tow. As I was walking to the restroom to get ready to share my story I heard a voice behind me say ” I’ve been waiting for you for years” . I turned around and was completely flabbergasted. I just couldn’t believe that over 18 yrs later Sonya was standing in front of me at this obscure town that I didn’t even know existed, over 100 miles from where we both lived in 1983 in NJ . All those years faded away and it felt like it did back then. A little electricity. A spiritual connection. A couple of months later we started seeing each other again and eventually I asked her to marry me. I never thought I would get married again after my first wife. Because I didn’t think she really loved ME. Even though she seemed to be able to see past the scars on the outside,I don’t believe she ever really saw me. Sonya sees me and she gets me. She accepts me and loves me. Is it always wonderful ? No. In fact we are really just getting started on our relationship and romance. We’ve been focused on raising the kids and getting them set up with life, moving,business ,my involvement in the burn community and just everyday life. I’ve found that if I really want a good relationship I need to make time for it and I have to participate. It involves more than cards,flowers and the occasional dinner out. It takes guts to stay committed to a relationship long-term. I found what I feared the most was the intimacy and vulnerability. Not something most guys (and a lot of women) are very good at. But I’ve gotten better at it . I enjoy our life together and we enjoy each other. We’ve been very fortunate to have another chance to come back together as adults and find out who we really are separately and together . We try to support each other and give each other the kindness that engenders love. It’s not always easy and we both fall short but we keep on trying and that’s the most important part. Just keep at it and don’t give up ! It is my sincere wish that everyone who reads this finds happiness within themselves and shares that happiness with others. In the mean time just remember , if someone can’t love you today because you look different,they probably wouldn’t have been able to love you anyway. Not really love YOU and really see YOU. Real love goes much deeper than appearance. It goes much deeper than anything on the outside. I have found that my scars weed out the phonies in my life and I usually end up with the most genuine and authentic people on this earth surrounding me. Happy Valentines day to everyone …because self-love is where real love begins. Like happiness,love is an inside job .And there are shortcuts. You don’t have to be in a relationship to work on self-love.Our society puts too much emphasis on being with someone else,before we get to know ourself . And as my wife said this morning,” Valentines day is like Christmas. Its something we should practice everyday.” Practice with ourselves and others. So buy yourself a box of candy and some flowers and if no one else tells you that they love you or even if they do. Find a mirror and tell yourself …. 🙂

11
Jan
12

Resolve or Resolutions ?

Happy New Year to everyone and I hope that everyone had pleasant holiday. I decided to take a little break in December . I was feeling worn out, after a full year. 2011 was a productive,fulfilling and exciting year for me and my continued activity in the burn community. But it was also emotionally,mentally and physically draining. As my Dad said the other day “you’re not Johnny anymore”. Meaning I’m not a kid. Thanks Dad for reminding me. There was a lot of talking about digging into and bringing up the feelings inside for more healing to occur. I experienced feelings I don’t ever remember having and things I’ve never fully felt in relation to the accident ,my injuries and the many subsequent procedures that I’ve had to endure over the years . Thank God for those life saving procedures and the people who performed them and helped me through it. And thank God for the resolve to continue in the face of adversity. If you want to know who you are,adversity will show you. Not that I’m against fun and laughter and good feelings. I’ll take all I can get,but life isn’t always about those things and there are literally millions of people on this planet for whom they rarely exist. They are simply trying to survive each day. It may not have all been pleasant and still isn’t some times,but I believe it can still be positive.  Having said all that…what about this New Year ;2012 ? I remember coming home from the burn unit in January 1980 . I didn’t have any resolutions and although there was a certain institutional feeling of security that I lost when I left the burn unit,I was just glad to be out of the burn unit and be home with my family. I was far from being ok, but I had survived and that meant I had a shot at getting ok . There was a long and painful road ahead of me . A road which I didn’t know,because I had never travelled  it before. Fortunately for me there were some people around who did know and could show me the way.The way to healing physically,mentally,emotionally and spirtually.But there were some things that I needed to do in order for this to occur. I was told that my physical,occupational and speech therapy would be difficult and painful,but fruitful if I complied. The physical therapy was very painful and arduous . But I learned something from that New Year and the new road that I was on ; I learned that this road is like any other road. You can follow the directions of others who know the way or you can try to find your own way.  Today I prefer the former to the latter. I’ve been taught through experience ( some it rather unpleasant) that its better to listen to someone who knows. I mentioned that I didn’t have any resolutions for that New Year in 1980. But I did have some resolve and when I didn’t others had it for me. To I still believe in resolve  and resolutions . The resolution of issues that hold me back, impede my growth and threaten my very life. That may sound a bit over the top,I can assure you,it’s not. Two years ago this month my younger brother Mark died prematurely  from unresolved and undetected health issues. He was only 47 years old and he died of  something very treatable. Arterial sclerosis . We have a history of heart disease in our family. My uncle died at 44 from a heart attack and my dad had quadruple bypass heart surgery over a decade ago.  Dad is still alive at 84 . Not because he was proactive, as much as it was that he was under the care of a doctor and they caught it in time.  So now I can take a look at the road ahead again in another New Year ,some 30 odd years later . Only this time I can see the road ahead more clearly and  all of the warning signs.  If I choose to not to heed those warnings and signs,their fate could be mine. It doesn’t have to be that way though. I can use the same resolve that I’ve used in other situations and circumstances in the past to make healthier choices for myself. It’s not easy to do. God knows it’s not easy. I love to eat and I love to cook.  But I’m not very motivated some days to exercise and eat right. But if I don’t do what I know I can do to take better care of myself and I end up with health issues,that’s on me.  Its selfish of me not to take care of myself. I have a wife ,children,a grandson and many others that love me and whom I love. I have a life that I never dreamed I could have and I’ve survived a horrific accident. The bottom line is this; if I really care about them and this great life I have , I’ll take care of myself.  Auld Lang Syne

15
Nov
11

Money,greed and entitlement

I wanted to write about this topic while I am still angry…sort of strike the iron while I’m still hot ! Why am I angry? Someone just hit me sideways with a resentment from thirty some odd years ago having to do with my accident and the money I received. And because I guess after living on this planet for 52 years I still can’t believe the gall of some folks. In this case,I’m pretty sure that it’s not gall,it’s probably a mix of ignorance,misinformation and entitlement. There is only one thing worse than greed. And that is greed mixed a with a sense of entitlement. As some of you know I received an out of court settlement as the result of the burn injuries I sustained in 1979. It took over three years to prove our case and finally settle. The oil company ( then the third largest corporation in the world! ) used every dirty trick in the book and some new ones they came up with. But their vast resources and lies thankfully didn’t prevail. Instead I was awarded the largest out of court settlement in the history of the state of NJ. It sounds like a big deal and it was at the time. But only because it was the only tangible thing that they could give me to compensate me in some very small way for their gross negligence. I was unprepared for what came next. I was raised in a very modest home with many children and not much money. As a result I learned the value of a dollar and a good work ethic. Overnight I went from a disability check of a couple hundred dollars a week to receiving a check that made me a millionaire. I had people who tried to warn me and protect me. They knew in advance what might lie ahead for me. I had lawyers,financial advisors and others who told me what to expect and still I was amazed at what I experienced. I’m not going to go long on this topic because everything I write about will be covered in detail in my book, Beyond Recognition: An intimate view of a burn survivors life and recovery. I’ll just say a few things…One of the worst things that happened was that the settlement was made public. The media splashed the amount across the pages of all the local papers in South Philly and South Jersey and everyone who read that paper and who might have known me had a piece of very personal and intimate information. Something I was totally against. I don’t believe that people who have to go through ordeals like the one I dealt with should have to have the financial details of their life made public. It is absolutely NO ONES business how much compensation someone receives for a catastrophic injury. Could you imagine a total stranger asking you how much money you make a year or how much money you have in the bank !? Secondly NO ONE is entitled to any of that money except the person who suffered for it. It still amazes me that people think ” wow , he got millions of dollars”. Are you nuts ? I was almost burned to death ! My family and I were torn to pieces by this event and it took many years for us to have any kind of normal life. I had total strangers soliciting me for money. People I never meant asking for mortgage money. I was all of 24 years old and all I wanted to do was have a chance at a decent life and some stability. The money I received was nothing compared to the pain I endured and to the struggles I’ve since had to deal with and go through. Even now today ,32 years later, I still struggle with issues from the accident that affect my relationships. You can’t compensate someone for pain. Its impossible. I was compensated for the income that it was calculated that I would lose as a result of my injuries. The calculations were wrong. I lost much more than any statistician crunching numbers could ever imagine. I’ve wandered from one thing to another for years trying to find something that gives people that inner feeling of satisfaction that we derive from knowing that our hard work is what supports us and makes our life happen or not. I’ve gotten other things on the inside that you cant find on the job. Ive found parts of me that Id never have been able to access had I not been injured. But make no mistake about it ,it wasnt worth the money. You couldn’t pay me to go through that again. No amount of money would make me say yes to that. Anyone who saw me in the burn unit and in the first few years afterward would say the same. But money does strange things to people. They kill for it,die for it,sell their souls for it and end up with nothing but an empty hole inside. Believe me I know. I wanted that money I received to make everything better for me and for my family. But it didn’t. It only meant that for a time we didn’t have to worry about where it was coming from or who was going to pay the hospital bills for all my surgeries. For that I am extremely grateful.I know many who have not been so fortunate. They have no income and no one to look to for help in paying hospital bills and long-term care expenses. My family and I didn’t have much when I was growing up ,but we had all that we needed. We experienced having just about anything we could want and that didnt make us any happier. Many misquote the old saying by stating that ‘ money is the root of all evil’. It’s actually ‘The love of money is the root of all evil’. Money doesn’t make people happy. As my friend Dutch says ” Happiness is wanting what I have”. Just for today,I want what I have. There for I am happy.




Beyond Recognition

An intimate view of a burn survivor's life and recovery

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