Face Transplants, Domestic Violence, & Identity

In September of last year I wrote a post about meeting the mother of Carmen Tarleton in Thetford, Vermont. I relayed how while in line for a barbecue on a holiday weekend we began talking and she shared with me the story of her daughter. Her daughter was a victim of a vicious domestic violence attack. Her ex-husband assaulted her one night and after beating her senseless, sprayed industrial strength lye all over her body.

I wrote these words:

“I learned what living hell on earth was” said the mom, shaking her head.Her voice trailed off  “But I also learned what Heaven was. Seeing her walk through the door when she came home from the hospital? That was Heaven.” I looked at her and had nothing to say. All I could think was how little I understand of the resilience of the human spirit – that spirit that reflects the image of God.

Into this unimaginable story of living through abuse, living through the healing and scars of burns that cover your entire body, living through the moment by moment nightmare that is survival, comes a will and a strength that can’t be stopped. Blind, disfigured in a way that makes people recoil, but facing this with courage and resilience. This is the wild grace and spirit of God. from In a Few Short Moments

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On Valentine’s day this past year, Carmen Tarleton received a new face. She underwent a transplant surgery that was 15 hours long and is now one of the few people worldwide who have had face transplants. It was, and continues to be, an enormous risk — but Carmen was taking on this face for good reason. The residual effects of the attack included scars that caused much pain, inability to blink, and inability to express emotions because of the scar tissue.  A face transplant is not only a physical procedure, but one that is deeply personal and psychological.  For better or worse, our faces are uniquely ‘us’. We have had them since we were in the womb. To take on the face of another, even though in Carmen’s case this is a gift, is to think about the heart of where our identity lies.

I felt many emotions as I read the follow-up of Carmen’s ongoing journey. Emotions about strength, about love, about resilience. But perhaps the most significant is what I felt, indeed feel, about identity. Because Carmen has not ceased being who she is with a new face, she still has the same personality, the same wit, the same disposition. The core of her, the part that matters, is still unique to her.

And this is the part that her abuser couldn’t touch. He wanted to “steal, kill, and destroy” – but she lived. She defied what he wanted, what he tried to do.

October is Domestic Violence month. Unfortunately it has to vie with the pink of breast cancer to make the headlines, so it often ends up on the back page when it should scream from the front page of every journal, every paper, every magazine.

My heart hurts when I read the statistics on this issue. One in Three women, yes 1 out of 3, one-third, have experienced some form of domestic violence from someone they are intimate with. Behind every statistic is a real person, a real story. This is control and manipulation masquerading as ‘love’ – the worst kind of betrayal. The profound impact of these statistics shows in many ways beyond bruises or scars – headaches, difficulty sleeping, chronic pain, and emotional pain to name a few. But the biggest impact is on the sense of self — for abusers never honor the word ‘no’, the word ‘stop’, the words ‘you’re hurting me.’.

Domestic Violence crosses all class, religious, and cultural boundaries. Make no mistake, you could on any given Sunday be sitting in church next to a friend who is being abused. And this can be the hardest – because what good, believing woman wants to accuse her man of abuse? And so she cries soundlessly late into the night, praying for strength to confront her abuser or to leave the relationship.

Yet Carmen’s case shows that the abuser doesn’t have to win, doesn’t get to win.

The heart of where our identity lies is deep within our skin. Others may curse the outside, hurt it, betray it, but ultimately we don’t have to let them win. We may dress the outside, paint it, primp it, and dye it, but our identity is our core. You can paint mean all you want — it’s still mean. You can primp insecure – it’s still insecure. All of us have to face our true identity and it goes way beyond the surface.

Beyond Carmen’s new face lies a strength and a will that make her a true hero. She’s learned to live with stares in grocery stores, with disfigurement that to most of us feels unthinkable, with constant pain and daily therapy. But she no longer lives with an abuser, she no longer has the daily trauma of someone trying to rob her of self.

Face Transplants. Domestic violence. Abuse. All this would try to take away Imago Dei, would rob the victim of who she is created to be. But the strength of this image lives; lives in a true identity through strength,resilience, and love. It’s the wild grace of God. 

Survivors

  • Telling you that you can never do anything right
  • Showing jealousy of your friends and time spent away
  • Keeping you or discouraging you from seeing friends or family members
  • Embarrassing or shaming you with put-downs
  • Controlling every penny spent in the household
  • Taking your money or refusing to give you money for expenses
  • Looking at you or acting in ways that scare you
  • Controlling who you see, where you go, or what you do
  • Preventing you from making your own decisions
  • Destroying your property or threatening to hurt or kill your pets

Broken Made Stronger

Today’s post is written by Brooke Sulahian. Brooke and I have never met, but every time I receive an email from her I stop and read it. Because Brooke has a passion and a mission: to see women who are suffering with fistula healed and whole. She began an organization called Hope for our Sisters, Inc. with a mission statement that is simple and enormous:

“Changing the lives of women, one woman at a time”

I hope this post by Brooke brings you both hope and a challenge. In fact, i would love for this post to generate funding for one more surgery! just $450.00 to give hope! You can read more about Hope for Our Sisters, Inc. by going to the website.

My heart broke in Angola, but it was not Angola itself. Abject poverty, lack of sanitation, and poor medical care options abound. However, Angolans display pride in late-night celebrations and the care invested in each basket made and produce sold. The paradox of pride and joy midst sadness and need.

My heart broke anew when I dove deeper into the realities of fistula, a medical condition caused by obstructed labor and/or trauma leaving women incontinent, resulting in isolation from family, friends and society, lack of dignity, and loss of hope. Lives destroyed.

My door was open. My first trip to Africa. I dreamt of this journey since reading about fistula in 2010. Friends and family supported me with prayers and financial aid. Yet, constant questions took residence in my mind.

Why was I going to Angola? I’m not a doctor. I don’t speak Portuguese. I am simply a wife and mom who said, “Yes”, when called to speak out for our sisters with fistula. Was that enough? Through God, Hope for Our Sisters, Inc., (HFOS), had been fruitful, but I still had questions. In the end, I went.

I traveled with three HFOS team members (Kristen and Paul Coats, Jean Campbell) to visit the Evangelical Medical Center (CEML) in Lubango and bush hospital in Kalukembe, where we fund fistula surgery. We hoped to meet fistula patients to enable us to more effectively raise awareness, help others find healing, and work to prevent this horrific condition. God surprised us as we met fifteen precious fistula patients! Through Audrey Henderson, nurse, fistula advocate and interpreter, we respectfully captured their stories through pictures and video.

Another surprise awaited us as Dr. Steve Foster invited us to watch fistula surgery. Ana* was first to the operating room. Filled with fear in a new environment and unable to speak Portuguese, what amazing courage it took for her to come to CEML. At 20, having lost her first child during labor, Ana* longed for healing from fistula. Joy replaced her fear as she took this brave step towards restoration.

Celia* developed a fistula after her sixth pregnancy. In December 2012, at 29, abandoned by her husband and damaged by fistula, she left her three children with family to travel all day to the hospital. As Celia* awaits healing at the Patient Village, she displays amazing resilience; smiling, laughing, and teasing with fellow fistula patients, living as one victorious.

Luisa*, 32, stays at the Patient Village of the state hospital in Kalukembe, the one remaining former missionary hospital of the 150 before Angola’s civil war. Abandoned by her husband in 2009 after developing fistula and losing her child, Luisa* arrived in December of 2010. After nine unsuccessful fistula surgeries, she remains hopeful. Successive surgeries often decrease the chances of healing, but Dr. Foster recently helped a patient become dry after eleven surgeries. There is hope. Luisa* and fellow fistula patient, Joaquina*, have become each other’s “family” as they await healing.

As for me, I returned with a broken heart. A cost we must all be willing to pay when pursuing justice and healing. An incredibly minor cost in comparison to that paid by those robbed by injustice, but a true cost nonetheless. However, it can make us stronger.

I return to America with greater passion as we continue to raise awareness of fistula. Since these sisters cannot afford to pay for surgery, HFOS’s donors and supporters enable us to fund free fistula surgeries. For less than the cost of a new iPhone ($450), the life of a woman or girl suffering from fistula can be physically restored, paving the way for social, emotional and spiritual healing.

160 fistula surgeries funded…many lives restored…more to come…

*Names have been changed to protect these sisters who so openly shared with us.

Brooke F. Sulahian is the President and Co-Founder of Hope for Our Sisters, Inc. For more information about Hope for Our Sisters, Inc., or fistula, please go to the website at hopeforoursisters.org or visit the Hope for Our Sisters, Inc. page on Facebook.

We Have Work to Do! State of the World’s Mothers – #SOWM

During my flood relief trip in Pakistan a couple of years ago I witnessed severe malnutrition among babies and toddlers. Break your heart malnutrition and hunger. Shout for joy Plumpy’nut solution in some cases. Moms and babies have my heart – probably because I am one and I had five. Getting a good start in life changes a generation and with catastrophes like floods and earthquakes, the chances of having that good start decrease.

For the past 14 years Save the Children has published an annual report on the state of the world’s mothers. The report is long and detailed, providing key findings as well as giving recommendations. The data includes information from 176 countries on the health of children, health of mothers, and economic well-being. Finland came in first and Congo came in last.

This year’s report was released yesterday. Here are just a few of the findings:

The birth day is the most dangerous day for babies world-wide.

More than a million babies die on the first day of life, usually from preventable causes. While great progress has been made around maternal/child mortality, newborns continue to be the most vulnerable of all with little progress made around their health and survival.

Three primary causes of death were identified.

These include complications during birth, prematurity and infections. For all three of these there are interventions that work, that are effective, that can change these statistics. The number of newborn deaths could be reduced by 75% if these preventive measures were put into place. That’s a staggering success rate!

The interventions cost pennies to put into place – from 13 cents a day to $6 a day.*

  • steroid injections for women in preterm labor (to reduce deaths due to premature babies’ breathing problems);
  • resuscitation devices (to save babies who do not breathe at birth);
  • chlorhexidine cord cleansing (to prevent umbilical cord infections); and
  • injectable antibiotics (to treat newborn sepsis and pneumonia).

This is a big deal. Give a baby a healthy start and you change a generation, one baby at a time. Where it stands now is a public health crisis. 

So what do we do? How can we help? If you’re pregnant you help by taking care of yourself, of your baby; by eating right and getting prenatal care. Others of us can pass this information on – if we live in countries that fall at the bottom of the list find out what we can do in both big and small ways. If we live in the United Kingdom or the United States – take a look! The United States falls 30th despite spending approximately 18% of its GDP on health care. This is just sad.

  • 1 of 2,400 women in the United States will die from a maternal cause. This statistic is the same as Iran.
  • In the United States 60% of newborn deaths occur on that critical first day of life.
  • The United Kingdom fares better but not great at number 22 on the list. 

Take a look at the report linked below and the Save the Children website. Learning about this is the first step in making a difference! I’ve also included a link to a Huffington Post article that has a great infographic you can share. Huffington Post infographic.

What do you think of the statistics and the low cost interventions? Have you had maternal child health experience where you have seen these interventions work? Would love to hear from you in the comments! 

Stories from a Refugee Clinic

I am sitting in a sun-filled room in Uskudar – an area of Istanbul on the Asian side of the city. I heard the Call to Prayer a half hour ago telling me that it is late afternoon and we will soon be getting ready for the evening activities.

I am tired in the best way possible.

The day began in chaos. It was the first night since arriving that I did not sleep well. Carol (my sister-in-law) and I were heading to a refugee clinic on the European side of the city and we knew we would be late. We ran to catch a ferry from Uskudar to Kabatas, and slid into seats by the window, breathless.

The morning was beautiful, partly cloudy but sun spilling through at odd moments, reflecting off a blue-gray Bosphorous Sea.

“This is a beautiful city” – the same words came to mind that I had said to myself and aloud all week. Beautiful. Breathtaking really, with Topkapi Palace and Hagia Sophia on a hill, the Blue Mosque back a bit creating the picture perfect sky-line that is Istanbul. And the ferry rides were perfect places to slow down and experience the view and the city.

Arriving at the dock, we headed to an underground cable car, taking it the rest of the way to Taksim. As we set off in search of the clinic, Carol remembered that Google maps doesn’t do construction. This is fact.

But no matter – we were determined. And determined won, as it usually does.

We found the building and after walking down a dark hallway, trekked 4 flights up a set of stairs. Istanbul is not a city for the short of breath.

The room we entered was full of language. Turkish, Farsi, English, Arabic – it all melded into indefinable verbs and nouns, participles and dangling. It was a gift to my ears.

One of the side rooms was designated as a nurses room and we did a quick survey of medicines and equipment. It was quick because there was none (apart from Sarah Goodwin’s 2 year expired antibiotics from Michigan). No blood pressure cuff, no stethoscope, one thermometer, and medicine that fit into one 8 by 11 plastic container.

Our first patient was an Iraqi refugee. With rusty and wanting Arabic I asked her what was wrong. I barely made out the words headache and chest pain when the interpreter came to my rescue. And the story came out. Bit by bit by bit. The head ache – but really the heartache; the chest pain – but really the stress and a heart broken. The words gave a picture of a family exiled. Refugees. Forging a new home in a new place.

What is the remedy for a broken heart? A life cracked by circumstance?

We had so little to offer. A small packet of Brufen (Ibuprophen), and encouragement to drink a lot of water, an offer to come back if the headaches worsened, if the headaches were accompanied by blurred vision or dizziness.

She was followed by more people, children and moms, more symptoms and more stories. And these were only the tip of a Titanic size iceberg of stories.

For years I have said that stories matter; stories give us a bigger picture, a narrative into which we offer our hearts. And these stories – they matter. They matter to the clinician who attempts to distinguish, with no equipment, symptoms that need physical medicine, those that need emotional, those that need both. They matter to the interpreter who skillfully takes the words and decodes them for the listener.

Most of all they matter to God; a God who needs no interpreter and no story-teller, a God who was present in the room with us, caring for all who were there. A God who gives eyes to see and ears to hear the cry of the heart.

The sun has almost set and the Call to Prayer was now over two hours ago. As I close my computer and type the last words, I whisper a prayer for the people I met, and those I never will; for stories I heard, and for the millions I will never hear.

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Reminder of World Aids Day

RedRibbonIn 1983 I was working in Evanston, Illinois as a nurse. I was a new nurse. I was a young nurse — only 23. Evanston Hospital was then what it is now — a teaching hospital. We had a number of medical students as well as residents, at that time primarily from Northwestern University. One day a bunch of us were told to don gloves, gowns, and masks. There was a new disease, a new and terrifying disease. They didn’t know anything really about it. Just that it depressed the immune system to a point where the body can no longer defend itself against bacteria, against fungus, against viruses – the body is open game to any germ around. Thus the need to don gloves, gowns, and masks.

A week later the patient died; in the week preceding his death we hardly wanted to care for him. We were all terrified.

We’ve come a long way. We now know that AIDS is the end result of HIV (human immunodeficiency virus). We now know that if diagnosed early, the chance of living a healthy and normal life is high. We now know that over half of those diagnosed with HIV in the world are women. We now know that over 34 million people around the world are living with HIV. We now know that if a woman is on treatment for HIV, and gives birth, there is a high chance that the baby will be born HIV free.

This day, December 1st, is set aside every year to raise further awareness of AIDs. A red ribbon is the symbol and the goal of those who organize this day is to continue the fight of prevention, awareness, and treatment for HIV/AIDS around the world.

I urge you to learn more about this disease, a disease with a huge stigma affecting men and women around the world – particularly developing countries. For more information take a look at these facts compiled from the World Health Organization fact sheet. You can get access to the entire document and find out more here.

Key facts

  • HIV continues to be a major global public health issue, having claimed more than 25 million lives over the past three decades.
  • There were approximately 34 [31.4–35.9] million people living with HIV in 2011.
  • Sub-Saharan Africa is the most affected region, with nearly 1 in every 20 adults living with HIV. Sixty nine per cent of all people living with HIV are living in this region.
  • HIV infection is usually diagnosed through blood tests detecting the presence or absence of HIV antibodies.
  • There is no cure for HIV infection. However, effective treatment with antiretroviral drugs can control the virus so that people with HIV can enjoy healthy and productive lives.
  • In 2011, more than 8 million people living with HIV were receiving antiretroviral therapy (ART) in low- and middle-income countries. Another 7 million people need to be enrolled in treatment to meet the target of providing ART to 15 million people by 2015.

Code Pink

October is breast cancer awareness month. In my work this is an important month. It includes legislative breakfasts, educational sessions, screening events, and op-eds for newspapers.

Despite the plethora of information on breast cancer there are times when the information gets lost in the shuffle of life. Messages that would best go from our heads to our health get lost. In an effort to change that I’ve posted an infographic on breast cancer. It’s a different way of looking at what may be old information.

My hope is that you will not only look but act — if you’re young make sure the older women in your life see and know the facts; if you’re older make sure you are regularly screened; if you’re a survivor, share your story! We need to hear it.

Make October more than pink ribbons – make it action!

Code Pink

In a Few Short Moments

There are moments when I realize how much I don’t get about courage, about resilience, about living in grace despite circumstances. In my sometimes whiny little world and mind I think I know these things, I think I can explain and write about them, analyze and describe. And then I hear a story that expands my thinking so hugely that in a pause my perspective changes. I realize I know so little and I move forward not quite the same.  Those moments come when I am least looking for them;they are here, then gone.

The following story is one of those moments.

She was a single mom of two teen girls working as a nurse at a large medical center on the New Hampshire/Vermont border. She had separated from her husband and he, in a fit of abusive rage, showed up one night. After beating her senseless he sprayed industrial strength lye all over her body.

In a few short moments all of life had changed.

Lye continued to eat away at skin and tissue for 72 hours so initially it was a waiting game. In the end, 92% of her body was burned.

And the resilience of the human spirit kicked in – for she didn’t die. She lived. She fought with body, mind, and soul. She fought through over 45 surgeries and almost as many skin grafts. She fought, and still fights, through unimaginable pain and emotional suffering. But she survived.

I heard the story from her mom. We were in Thetford, Vermont with my niece and her husband.

Thetford is quintessential New England with miles of rolling hills, white-steepled churches, and small gas stations that, in lieu of local grocery stores, sell milk costing massive amounts of money. It’s a place where you bask in quiet and hospitality, and,if you’re lucky, a Labor Day parade and fire department sponsored chicken barbecue. Thetford is picture-postcard Vermont; an unlikely place for a horror story. 

While in line for the barbecue my husband began joking with a woman who looked somewhat lost as she wandered to where we were. We made a space for her and began talking. By the time we arrived at the tables laden with chicken, baked beans, coleslaw and home-made pie we heard the story.

“I learned what living hell on earth was” said the mom, shaking her head.Her voice trailed off  “But I also learned what Heaven was. Seeing her walk through the door when she came home from the hospital? That was Heaven.” I looked at her and had nothing to say. All I could think was how little I understand of the resilience of the human spirit – that spirit that reflects the image of God.

Into this unimaginable story of living through abuse, living through the healing and scars of burns that cover your entire body, living through the moment by moment nightmare that is survival, comes a will and a strength that can’t be stopped. Blind, disfigured in a way that makes people recoil, but facing this with courage and resilience. This is the wild grace and spirit of God.

The interaction was a few short moments. I lost sight of the woman as we looped around tables laden with home-made food. But a few moments is enough.

Enough to burn 92% of a body; enough to think your life is over; enough to know life will never be the same; enough to be given the will to live. Enough to have a conversation that reminds you how little you know of Strength and Resilience, wild Grace and God.

Bloggers Note: The woman who survived this act of violence is Carmen Tarleton. You can read her story here.

Altering Body and Soul – A Guest Post

Blogger’s Note: Daily as I take the subway home I  see a little boy with brown-rimmed glasses walking with an older woman. He seems tiny for his age, oblivious to the adults around him, much the same as other children. The thing that distinguishes this child from others is the tube that comes out from under his shirt, stretching around his tiny tummy to his back and attached to a quart-sized bag. The bag usually has a bit of greenish brown liquid in it. I don’t know him, and I don’t know his situation but I do know that he is already living life differently than his peers. He lives with an altered body.

He is not alone — this essay by my cousin Janice Klingberg takes us into her world of living with an altered body.

More than 35 years ago, I made an irreversible decision that was to impact my life more than I really knew at the time.

I was diagnosed with ulcerative colitis at the age of 15 but tried to participate in school and other activities as a normal teenager despite the physical discomfort and perpetual worry about accidents. Living through my teens and into my 20s was challenging, but I was relatively good, I thought, at hiding the impact of my illness.

I was grateful that in so many ways my life took an ordinary path—college, teaching career, marriage and children. Despite this, after our younger son was born in 1974 my colitis went wild, in part because of uncertainty about his health. I couldn’t ignore this exacerbation or my new understanding that years more with the chronic condition would make me more vulnerable to malignancies—read that, cancer of the colon. Years earlier, though advised that I might want to consider surgical removal of the colon (total colectomy), I was not emotionally ready to take that major step. By 1975 I was almost relieved when I made the decision to move forward with the surgery and live the rest of my life with an ileostomy—an opening (stoma) on my abdomen through which feces is diverted.

After my recovery and with the loving support of my husband, I was determined to continue living well, but this time without pain or anxiety about toilet facilities. I’ve had to deal with other issues related to my redirected plumbing, but overall, I have been a much healthier person than I ever was before my initial surgery.

I have now lived with an ileostomy longer than I lived without one, and though it’s part of who I am, it does not define me. I have shared my journey with others facing the surgery in the same way people helped me wrap my brain around its long-term impact.

One of those individuals, a young woman my age, helped rid me of fears that I wouldn’t be able wear attractive clothing again and  suggested lifestyle changes that would make it easier for me to live with an ileostomy, something that was daunting for a 30-year-old.

Surgery where the body is altered has life-changing potential.

There were unexpected and positive side effects. The entire experience helped to refine my vocational direction– I knew that I wanted to be involved in something that would make life better for others and add meaning to my own life. Stewardship of my God-given skills and talents became even more important to me, so I plunged into the nonprofit communications and fundraising arena. Many dedicated professionals challenged and energized me over the years as we worked together to improve the quality of life for thousands of people.

However imperfectly I contributed to those efforts, I am grateful to have had many opportunities to be part of something bigger than myself; something that brings satisfaction and meaning to my soul.

We live in a world where body image is often skewed and the temptation to define ourselves based on our physical features is strong. As I look back I am grateful to be able to bear witness that life has gone on—indeed, even improved and become more meaningful—after the initial shock of waking up from surgery with my altered body.