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


5 Responses to “A Lifelong Journey”


  1. 1 Meredith
    October 11, 2011 at 2:31 pm

    Congrats on the 15! I never saw you as different I think that was because you treated me like a human being.

  2. 2 Jan
    October 8, 2011 at 9:04 am

    John,

    You have found a (new?) gift of writing!!! You are a fabulous person!!! I have shared your journey with others….

  3. 3 James Prentice
    October 7, 2011 at 8:52 am

    Great to read this John. Well said.

    I like how you relate your experience back to grief, a universal experience, we all get to share. And how you show that it doesn’t necessarily end, but that can also be OK.

    Peace,
    James
    (formerly married to your cousin PC)

  4. October 6, 2011 at 5:14 pm

    Hi John, Great to see you pop up. Good article. Send it to me at naginobill@hotmail.com so I can download it. LOVE & BLESSINGS GINO

    • 5 Rik Brown
      May 30, 2012 at 11:31 pm

      I came across your site by chance when I googled “burn survivors” looking for online support groups. I’m a burn survivor myself – about 45% full thickness, and finding other survivors out there is always really helpful. I don’t live in the USA, but at present live in New Zealand, which is a long way from anywhere. Unfortunately, there isn’t much in the way of burn support groups over here, so it’s difficult to meet and correspond with others. There was a support group in Auckland, the city I live in, but it no longer functions. So, thanks for your story.


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Beyond Recognition

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

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