A recuperation center for burn injured and physically disabled children.
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I sat at a dining table outside a hotel in downtown Raleigh, North Carolina, with three people I had just met. One was a woman about 40 years old. She shared pictures of her two sons, her reasons for living. She was severely burned in an act of domestic violence. Her hairline was altered by the fire that had left her face and body covered with scars and had stolen pieces of her fingers. Her mother, who was caregiver and friend, sat next to me. On the other side of me sat a man who had very little left of his facial features and very little left of his hands. He had been a fireman and an act of heroism had disfigured him, scarring over ninety percent of his body.
We were chatting away and then the woman looked at the man and me and asked, “How do you handle it when people do more than stare? When they are mean to you and kick you out of stores and restaurants because your looks are disturbing the other customers?” I was in silent shock. I listened as they relayed stories back and forth of when society would not allow them to shop or share a meal out with their families and friends. I was horrified by the way people had talked to them. The store-owners, management, and employees had no clue as to the circumstances that led up to these disfigurements. They had no idea of the pain that these individuals had already endured.
For a while, I felt like I had no right to speak. My hair neatly covered my head that day. I had a nose, cheekbones, lips, and eyelids; my makeup was just right, and I had carefully picked my outfit to flatter my frame. Then I looked down and saw my right hand without any fingers. I remembered back to the year that I wore a pressure mask everywhere I went. I recalled the two years that the whole top of my head had no hair and the seven years of surgeries. And I remembered going out in public. The people sitting here with me hadn’t seen me that way. They hadn’t seen me at my worst. I remembered feeling some of their dread.
In the first year following my injury, countless situations happened in public that left me in tears. Ignorant comments, stares, mean statements, endless questions, and children running from me, scared. But I was never asked to leave. Nobody ever intimated that my absence would be better for the majority.
My surgeries were always away from home. I would stay in a hotel for two weeks following my surgeries in case there were any complications. After the first week of healing, I often got cabin fever and was eager to get out of the room. My caregiving friend and I would make outings to local restaurants for a meal and I would think of how my cut-up face must appear to the other customers. But I was never told that I was ruining the appetites of the other patrons and that my presence was unwelcome.
I spoke up to my new friends. I shared with them the words that my mother shared with me when she realized how others would undoubtedly view her beautiful first child that had been damaged in a fire. “Charity, you’re going to have to teach others how to treat you.” My mother didn’t say this to an outgoing, say-anything-anywhere, knows-no-strangers daughter. She said it to the daughter that was shy, who didn’t go to new places without a friend, and who didn’t speak until spoken to.
When I heard my mother’s words, I realized that if people were ever going to see who I really was, then I was going to have be brave, I was going to have to show them. I would show them through my dress, my body language, and through how I approached not only the mundane, but also the new and challenging tests of ife.
I have traveled all over the U.S. and to many other countries. I have conducted business, made many new friends, shopped, ate, sight-seen, and have discovered some simple truths: I can’t always determine the way others will treat me, but I’ve never experienced the kind of behavior that my new friends were talking about. Maybe this is because I never imagined being treated that way. People do catch me off guard sometimes. They ask me difficult questions, but I quickly realize they are voicing what others wonder but never speak. If I treat them rudely, I’ll be treated rudely in return. If I’m waiting for an insult, one will come. I’ve noticed that when I’m having a bad day, if I’m sick, tired, or emotional, if I’m focused on me and think myself unlovely, it’s on those days I notice the stares. Something inside me gives others permission to focus on my differences.
The rest of the days I go about my business. I’m focused on my “to do” list or the people that I’m with, or I’m just taking time to relate to the cashiers or smile at the mother struggling with the toddler in her cart. The thoughts that I’m different, that people are going to stare at me, that I don’t belong, never cross my mind. If people do stare, I don’t notice because I’m not focused on me. If people do treat me differently, they are usually treating me very nicely because I am being nice to them. Most importantly, I’ve discovered that when I’m ok with me, others are ok with me.
I had the privilege of having my grandparents visit last week. One of my sisters and my other grandparents visited last month. I was just thinking today about our family. My sister’s and my accident was one of the most traumatic things that happened to our entire family. It was life-changing for each of us. Today, we are all living healthy lives. A common thing that happens every time our family gets together is that we talk about the accident. We talk about what we each felt and went through and we talk about how we feel right now… where we are at in the healing process.
I remember going to my first World Burn Congress. I think that it was in 1999. There were other people that were first time attendees as well. Their response was that they were so happy to meet others that understood what they’ve gone through. They loved support groups, and they thrived on the resources that the Phoenix Society connected them with. I remember feeling weird that I didn’t have a need for a support group and I wondered why. Then I realized it was because I already had one. In addition to my family that supported me, I had my sister that was also burned; she and I knew each other’s pain.
A few years ago I was attending another World Burn Congress. My plastic surgeon introduced me to a beautiful, petite latino girl who was probably about twenty years old. She truly could have been a model. She had some hidden scars that she received in a kitchen accident where boiling water burned her when she was three years old. There were a couple of small scars on her face, and she had come to my doctor desperate for him to remove her scars now that she was an adult and was living in the States for college. My doctor recognized that there was a bigger issue than her scars, which were barely visible. He recommended her to a counselor and required she go before he would perform any surgery on her. When she had done her time with the counselor and came back requesting her surgery, my doctor asked her to come to a World Burn Congress.
On the last night of the conference she sat down and talked to me. She told me how overwhelmed she was by what she had seen there. She told me how much she had confined her life because of her scars. She had never worn shorts or dresses, never done any sports, never spent the night at friend’s houses. She was afraid to get too close to a boy and was constantly fearing that once others knew of her imperfection they would immediately reject her. She had gone for surgery desperate to have the life that her scars had prevented her from living.
She then told me about the accident. At three years old she was a daddy’s girl. While her daddy was at work her young mother had been cooking something on the stove and her little girl was at her feet when she spilled a pot of boiling water. The mother was horrified; she picked up her daughter and ran to the neighbor’s house for help to get her to the hospital. In her confusion and horror her mother said, “Please don’t tell her father, he’ll kill me!” The child recovered. Her family was still in tact, but they never talked about the accident.
In a three-year old’s mind, she feared that talking about her injury would destroy her mother. Because her family never talked about it, she felt she could never show her scars. I could tell, as I talked to her, that it was dawning on her that her three-year old interpretation of her accident had shaped the course of the rest of her life. Logically, she knew that she was loved and valued by her parents, but her mindset was that the scars and their presence were to remain hidden, and that somehow her secret made her unworthy of being completely loved.
One of the key steps to healing is talking about your pain. As it is talked about, you are able to separate the truth from the lies… the real from the absurd. We cannot compare our pain with others and deem it unworthy of voicing. Even the “small” pains in our lives can defile us, just like a relatively minor cut that is left uncared for can lead to a major infection. If you are unable to talk to someone about your pain then I encourage you to write it down, every detail of what you feel, no matter how shameful you deem your own feelings. I believe that this truly helps to define where we are in our healing process and clarifies our next step.
Therefore humble yourselves under the mighty hand of God, that He may exalt you at the proper time, casting all your anxiety on Him, because He cares for you. 1 Peter 5:6-7
Bear one another’s burdens, and thereby fulfill the law of Christ. Galatians 6:2
Many others see their scars as what has made them strong and as their identity. My view is a bit different. My burn injury brought to the surface the strength, courage, and character that was sleeping within me. My identity isn’t found in my scars. They don’t make me who I am. My identity is found in the One who has given me the grace and courage to live my life regardless of my scars. My life includes, but is not defined by, an injury that has profoundly changed my mind, my heart, and the path that my choices were leading me down.
In the past two weeks I have heard three very different stories, all heart breaking.
Two weeks ago I got a call from a family member of a burn survivor. A 12 year-old boy had a big burn injury two years ago that has disfigured him. The incident also injured his father, he lost a sister, and his parents have since divorced. The boy is now exhibiting some negative behavioral concerns and the family wants help. Going through any of the above mentioned traumas alone would be huge. Imagine being 12 and facing all of the pain that this little boy must be experiencing. Imagine his mother’s and father’s pain as they look at their dear son who is enduring the scars that mark an incident that took their little girl from them.
After this I heard of an 18-month old baby who has been in the burn hospital for 7 months, unable to be released because there is nowhere for him to go. Very few foster families have been trained to care for a burn injury. His parents are in prison for what they did to him. Imagine the pain that he has endured at the hands of those that were supposed to love him and protect him and the healing that his heart will have to go through at suffering such abuse and abandonment.
This last weekend a burn survivor (I say “survivor” because is takes a lot of courage and strength to survive a disfiguring, disabling, big burn injury.) was unable to endure the emotional pain that tormented him for years. In his anger, depression and pain, he injured others, took a life, and then took his own. I can’t imagine the pain his family must have felt every time that they tried to express to him their love and value for him and they watched as their words bounced off him instead of sinking into his heart. Only severe self-hatred could cause him to do what he did.
The needs are real and the needs are now. Each of these situations carry with them such a high level of pain. The physical pain is easy compared to the life altering emotional pain that these individuals will/did endure for years to come. There is/was hope for each of these. There is One that has suffered all that they have suffered, even when they think that they are the only ones. That Hope, that Healer, Comforter, Father, and Friend is Jesus. Please pray for these individuals and their families. Pray that they would be able grab onto the Hope that wants so badly to make them whole.
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