Posts Tagged ‘healing

05
Oct
11

A Lifelong Journey

On this, the 32nd anniversary of the explosion in which I was critically burned I wanted to write about my expierence at the World Burn Congress (WBC) which took place in Cincinnati last week. Once again I was on the panel for the Addiction/Substance Abuse and Trauma workshop. I felt it appropriate to write my blog on this theme, and to take it a step further to include grief/grieving.

I’ve spent time around hundreds of burn survivors over the last 32 years, and it is amazing to me that I’m always affected in some way by just being in their presence. I’ve written before about how I don’t see myself most of the time. And even when I do see myself, perhaps in a mirror or my reflection in a window, I’m not thinking about my appearance. But when I’m around other burn survivors I am transported through time back to that place where I was just learning to cope with being burned and disfigured.

I was only a kid at the time, and like most people my age, had lots of hopes and dreams. I planned to enjoy being single, hanging out with the guys, traveling and riding motorcycles from place to place (and bar to bar). Then someday I’d get married, have kids, settle down and be a family man (more by default, I suppose, than choice at that time). But all those hopes and dreams went up in smoke, quite literally, 32 years ago. The John that I knew back then–the one that I had been for 20 years–was gone.

Suddenly I was a very different version of me. To say that I was devastated would be an understatement. My body, mind and spirit were crushed in the explosion and the aftermath. The pain was excruciating in every way and every day for months on end. Then the years of physical therapy and reconstructive surgery so that I could move about freely. I lost count…I think its 72 surgeries now. I had to learn how to walk again and talk again and use my hands. I had to get used to eating with a mouth that had no lips and breathe through a nose that was almost gone. I had no feeling in my skin grafts for years. I could feel pressure when someone touched me only because of the nerve endings under the grafts. It felt like there was a piece of thick leather between me and whatever or whoever was touching me, and it was almost intolerable at times. But the hardest thing to get used to was the way others saw me.

I’m not just talking about strangers on the street or friends. My family members were deeply disturbed by my appearance. They loved me very much, and because of that it made them hurt, and I hurt for them. It’s my nature to not cause others pain or make them uncomfortable, so I took it on as my own pain. I was already carrying a trainload, so what’s one more boxcar full of baggage? I remember one young niece who was so frightened she would cry whenever she saw me. It was awkward for everyone at family gatherings and especially for me, because I didn’t want to upset anyone, especially my little niece.

At that point I was heavily dependent on narcotics to help me cope with my daily life. Even though I had seemingly made the transition from physical isolation to being in society, I was still very much isolated emotionally. The trauma I experienced as a result of the explosion was further complicated by my addiction to narcotics. The ongoing surgeries served to retraumatize and further institutionalize me. I was not only dependent on narcotics, I was also dependent on the institutions and the people who cared for me.

First I needed to address my addiction to narcotics. After many tries from 1983 to 1996, I finally succeeded. I was able get the help I needed and begin healing inside. I knew much about physical pain and suffering, but I understood very little about emotional pain and suffering and especially the grieving process. I realized I needed to have a network of people in recovery in my life, and some professionals to support me on my journey. I’ve found it necessary to create a safe space and have safe people around (could be a support network, significant other, friends, pastor, priest, rabbi) who won’t judge or invalidate your feelings.

Having someone who will just listen to you is one of the most precious things I’ve found. I’ve shared my story with anyone who will listen (and probably some who did not). I’ve shared in groups the details of some of the procedures I endured and watched people cringe. And I learned that some people just don’t want to know and some details are too much; not everyone is safe to share everything with.

I’ve logged countless hours with many therapists (some good, some ok). I’ve gone through training to help and support other burn survivors and I attend conferences and advocate for the burn community. I’ve written more than I can remember about this; I still write and I’m still uncovering and unfolding me. I wrote poems, read Voltaire (don’t ask me why) and read everything I could get on spirituality. I painted and did woodworking and built a motorcycle. I did yoga (still do) and Tai Chi, took up golf and am now doing woodworking again. I’ve taken long trips by myself to Europe and the west coast, and gone on retreats. I’ve also danced around the pain and avoided it for many years with many other distractions.

During the WBC, we saw a private screening of the very poignant and compelling documentary, Trial By Fire; Lives Reforged. As I watched myself on that screen I was catapulted back to the grief and sadness I still carry. It was a surreal moment to see all these images of myself strung together with my voice. I was watching me tell my story, and it hit home. This is a good thing. Feelings are meant to be felt, not avoided, suppressed, ignored, drowned in alcohol or numbed with narcotics. They are meant to come up and out, not go down and in.

Elisabeth Kubler-Ross is credited with identifying the five stages of grief (based on her experience with the terminally ill). Although this model is widely accepted as the catch-all for grief, it is not a template that everyone’s grief process will follow. Trauma and addiction have many manifestations and are complex in many ways. They are both difficult to diagnose and treat. Grief can be complex and overwhelming. It is not a neat tidy little package and it doesn’t come with instructions. It comes with denial, as do addiction and trauma. There are many good books written on the grieving process. There are counselors who specialize in grief and groups to help support those who need help.

I can’t tell anyone how to grieve or how long it will take or when it will be over–if it ever is. I can tell you that it’s messy some days, and that’s ok. I now enjoy life more than I ever have. I can tell you that the grief process has gotten better for me and that I have gotten better with it too. A process is a series of prescribed steps taken to achieve a desired result—in this case, healing. You have to take action in order to get results. It may take a lifetime.

In my experience, service seems to be the one thing that promotes healing more than anything else. Giving back to others who have also suffered helps me deal with my pain and it helps them deal with theirs. For me, the healing continues and I have yet to fully recover. Maybe that’s not possible. Maybe the infinite intelligence that created us has given us a lifelong assignment. That’s a good thing too. My first journey began 32 years ago on October 5, 1979. My second journey began on October 1, 1996. Here we are in October , 2011; 15 years later and I’m still on the journey.

Books on : Grief/Grieving

On Grief and Grieving: Finding the meaning of grief through the five stages of loss
by Elisabeth Kubler-Ross ,David Kessler

Grief Recovery Handbook- The action program for moving beyond death,divorce,and other losses
by John W. James, Russell Friedman

Good Grief: A constructive approach to the problem of loss
by Granger E. Westberg

Grief
by Haddon W. Robinson

07
Aug
11

Should I ask?

Approaching someone who looks different is a quandary for most people, and asking what happened to them shouldn’t be taken lightly. It’s difficult to tell if someone like me who has a lot of facial scarring is approachable or not.  Should I look? Should I not look? Do I just ignore them?  What’s the polite thing to do?  There are no hard and fast rules.  In fact, if I were on the other side I’d probably not ask at all.  I’d just try to be kind and treat them like everyone else.  Some people might say, “It’s not polite to ask questions like that,” but neither is staring at someone while wondering what in the world happened to them.  Maybe nothing happened to them.  Maybe they were born that way and have some genetic defect or physical challenge or both. Or maybe they were involved in an accident, like I was. People who looked different always intrigued me when I was a child. But I can’t recall ever being rude or staring in an inappropriate way or making comments that were cruel. Maybe I was already sensitive about such things. I grew up with three developmentally challenged cousins. I saw the way people gawked, laughed and made wisecracks about them. It hurt me even though I wasn’t the focus of it.

I believe there is an acceptable way to look at someone who looks different or even ask what happened to them. First and foremost, remember that I’m no different than anyone else; I just look different than most people.  I want to be treated like anyone else.  One of the reasons for writing this blog and book, Beyond Recognition, and participating in the documentary, Trial By Fire: Lives Re-Forged, is to educate the general public.  I believe that many people don’t’ know how to respond or react when they see someone who looks like me.  Some people have never seen an actual burn survivor.  Advances in medical technology mean that more burn victims than ever actually live to become survivors, leading to more and more opportunities for interaction.  I hope that by going mainstream with burn survivors, we can overcome the stigma attached to our appearance.

I personally do not mind if people ask me what happened. But first ask yourself a question.  Why do I want to know?  What’s my motivation?  Is it just morbid curiosity of the train wreck variety or something that is heartfelt and sincere?  I really believe this makes a difference, and the person you are asking can tell the difference, believe me!  Here’s what I like: ” Do you mind if I ask what happened to you?”  It’s a direct question, and I’ve been given a choice.  I can either say, “Yes, I do mind,” or, “No, I don’t mind at all.”

Saying, “Do you mind if I ask what happened to you?” is a lot different than asking, “What happened to you?!”  Yes, people have blurted that out to me.  While I didn’t necessarily care for the delivery, I answered the question.  I have to pardon people every day or else I’d be confined to a very small world.  Now my standard reply is, “I was burned in an explosion at an oil refinery.”  The standard reaction is, “Wow, you’re lucky to be alive.”  There was a time when that bothered me a great deal.  I was still very early in the healing process and would think to myself, “Who are you to tell ME I’m lucky to be alive?  How would you know?”  I’ve done a lot of healing since those days and my response usually is, ” Yes, I’m extremely fortunate.”  This too should not be taken lightly.  If you ask somebody what happened and they tell you, you may feel you need to say something back to them. Like, “Wow! You’re lucky to be alive!”  Or, “Oh my God!  You poor thing!”  Here are some alternatives. “Thank you for sharing that with me. I’m glad to have met you.”  Or simply, “Thank you for taking the time to share that with me.  I wish you well.”  This is my experience and I certainly do not speak for anyone but me.  Personally, I’d rather someone ask me.  I feel like I’m doing a service for others and myself when I tell someone what happened to me.  I sometimes even share details if people ask or I feel they want to know more.

There is one thing that I believe is totally out of line — questions having to do with money.  Yes, I’ve had people say such things as, “I hope you got paid for that!” Or, “I heard you’re a millionaire,” or, ” So how much money did you get?”  I would consider this area of questioning inappropriate for just about everyone.  The other area that’s out of line is probing for details.  If the person offers details, that’s fine. But don’t ask for more.  It’s usually not hard to tell if someone is comfortable in his own skin.  But at the end of the day, it’s a crapshoot, and there’s no easy answer. In some cases it’s cool to ask, and in others it’s really not.  Discernment and tact mean everything when dealing with people, especially those of us with obvious differences.

There is an appropriate way to look at people. You look right into their eyes. If they can’t meet your eyes, then chances are they aren’t comfortable.  You can never be sure where someone is in the healing process, or whether they are healing inside at all.  And that’s what it’s really about.  Healing on the inside.  Because that’s what all humans have in common.  We all have healing of one kind or another to do.




Beyond Recognition

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

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