by Ming Wang
Inspired by what I had experienced and learned through dance, I suggested that we have a gala featuring ballroom dancing … and call it the “EyeBall.” The idea came to me as I was trying to find a way to create a ball to signify the emotional aspect of the importance of vision. Ophthalmologists tend to think of vision in terms of numbers like 20/40, 20/60, 20/100. But vision is much more than just numbers. It is an emotional experience that affects the very core of a person. Seeing is a fundamental way of living, both physically and spiritually. We visually witness the world, find meaning, and discern truth. I felt that finding a creative way to illuminate these deep human dimensions of vision would have a powerful emotional impact for the cause of sight restoration for the blind. I believed that the elegance of ballroom dancing would lend itself perfectly as a showcase of beauty and the importance of vision. When we see something as breathtaking as ballroom dancing, we will truly comprehend how emotionally devastating it would be if we didn’t have sight, and how important it is to help those who have lost it.
Our first EyeBall was held on October 1, 2005 in the Pineapple Room at Cheekwood Botanical Garden and Museum of Art in Nashville. The theme of the event was “Sight and Sound,” since it also featured the Nashville Chamber Orchestra. The Pineapple Room had polished concrete floors, crystal chandeliers, and an entire wall of huge windows with a view of the outside veranda and gardens. Beyond the veranda, hills and valleys rolled along the horizon.
Over two hundred people came to the 2005 EyeBall to support the foundation, including congressional representatives, university professors, business owners, members of the media, and other people from the community. Once everyone had been seated for dinner, we invited several foundation patients onto the stage to share their experience of being blind. One woman had gone blind because of a genetic disease. Born without an iris or pupil, her eye couldn’t regulate the amount of light it received, so she gradually lost her sight during her young adulthood and was completely blind by her thirties. She reminded me of the blind patient whom I met during my first year at Harvard and who inspired my journey to restore sight for others. A car accident took another patient’s sight. The resulting pain and despair he experienced caused him to develop a destructive drinking problem with which he was still struggling to recover.
“It is a beautiful evening, isn’t it? But I can’t see it,” he said.
Next, Brad and Jackie Barnes came on stage. At that point, Brad hadn’t yet undergone his final restorative surgery. “I have never seen my wife’s face,” he told the audience. “I want to hear her laugh the way I hear her now, and I want to see her smile.” Many eyes in the crowd glistened with emotion hearing Brad talk of such a simple yet overwhelming desire, something spouses throughout the room undoubtedly took for granted every single day.
Joel Case was the last to testify, and he shared his experience of coming out of darkness after his surgery, and how successful sight restoration surgery is a life altering event. He told the group how he had lived with blindness for forty years as a result of a rubella infection he contracted while still in his mother’s womb, and how his foundation surgery had given him back his sight with which he saw his bride at their wedding the year before for the very first time.
After the patients had spoken, I walked out onto the stage.
“We rejoice with Joel Case for his miracle of sight restoration,” I said, “and we long for others who still live in darkness to be able to experience this miracle of renewed sight. But do we really know what it’s like to be blind? Those who truly appreciate sight are those who are blind, so I want all of us to experience for a moment what it is like to be blind and live in darkness.”
The guests were asked to put on dark sunglasses that we had placed beneath their chairs, and then the house lights were turned off throughout the ballroom. “Dark Waltz,” a haunting composition of plaintive strings and soprano vocals, started playing in the background.
Once the room was dark and the guests were wearing the sunglasses, I then said, “Ladies and gentlemen, now I would like to ask you to stand up, walk to the other side of the ballroom, and shake hands with someone over there.”
A gasp instantly spread throughout the room. I could hear the sounds of people bumping into tables and chairs being knocked over. In the darkness, no one dared move far. I could sense their fear and apprehension at being asked to perform an otherwise routine task for those who can see.
As the audience stood frozen in the dark, fearful of making any move, a single candle held by board member Gene Angle was lit up on the stage. Guests looked toward the light with a sigh of relief.
“Like this one candle,” I continued, “our sight restoration efforts begin with just one patient. One set of eyes. One surgery.”
Gene then lit the candles of several board members and volunteers, who then went to each table and lit the candles there. The room slowly became aglow with soft, faint candlelight. The darkness continued to recede as the house lights were turned back on, one by one. The guests removed their sunglasses, smiling with relief and joy that they could once again see.
“That is how we start,” I continued. “One light at a time, and then the light will spread. If we all take part, then the whole room will be lit up, then the city, the state, the country … and eventually the whole world.”
When the program was over, I invited everyone onto the dance floor. A good friend and a professional dancer, Monika Olejnik, joined me. As we danced, I remembered the elderly couple I had seen do the foxtrot back in Boston nearly two decades earlier. My life’s dancing endeavors had transformed from a way to avoid deportation to an appreciated art form to a meaningful way to bring people together for a purpose that transforms lives through restored sight. I felt as light as mist over water. At long last, I too was dancing agelessly.
Chapter 18
A Heart for Orphans
I was scrolling through hundreds of emails in my inbox one morning, when one in particular shocked me into full attention. I leaned toward my computer screen, and my jaw dropped as I read the message.
“The child was found wandering alone in a train station, dirty and hungry. She is only four. We were told she was intentionally blinded by acid and then abandoned.”
It was the fall of 2006. That unexpected email marked the beginning of my journey with Kajal, a little Indian girl whose struggle to come out of darkness into which she was mercilessly thrown would have a big impact on the entire Nashville community.
Kajal’s origins are shrouded in mystery. What we do know is that her stepmother had fought with her mother over custody. After her mother died, Kajal’s stepmother intentionally blinded her by pouring a corrosive acid into her eyes while she slept one night. This horrific act was part of a plan to turn Kajal into a blind child singer who would inspire pity, and possibly donations, when she sang and begged in the streets. However, when her stepmother then discovered that Kajal lacked any talent in singing, she left the little girl to die in a train station near Calcutta. Kajal was rescued by a Christian mission group called the Society for Underprivileged People, who then transferred her to a shelter home in Allahabad, a city in northern India. Qamar Joy Zaidi and his wife, Grace, ran the shelter where Kajal lived with many other children who had been maimed, abused, and trafficked before being taken in by the organization.
In May of 2006, a Vanderbilt University student named Ashley Rogers had traveled from Nashville to India to volunteer at the shelter. Soon after she met Kajal, Ashley emailed her Grace Community Church family back in Nashville asking for help. A member of the church’s prayer group, Jenna Ray, suggested that the shelter home contact the Wang Foundation for Sight Restoration.
Soon after I received that initial devastating email, the foundation launched what we called the “Kajal Project” to galvanize community support to bring her to the U.S., so we could determine if we would be able to restore her sight. As always, foundation doctors waived our medical and surgical fees, and donors from Nashv
ille and beyond offered money and airline miles to fund Kajal and Grace’s journey to the States. Several families offered to host the pair in their homes, including David and Jenna Ray, Blair and Karthi Masters, and Todd and Camilla Quillin.
One of the foundation’s board members, a ninety-four-year-old gentleman named Wallace Rasmussen, contributed significantly to the Kajal Project. He also showed great compassion in the way he helped us welcome Kajal to Nashville. The evening I was due to pick up Kajal and Grace from the airport, Wallace came to Wang Vision Institute in his wheelchair, carrying a handmade music maker. Wallace was very sick—bedridden, on a respirator, and paralyzed from the waist down due to a stroke—but he was also an avid woodcraftsman and wanted to make a special gift for Kajal. So he hauled himself out of his sickbed and wheeled himself into his woodshop, where he crafted a mechanical music maker from dark red mahogany. On the flat surface was a brass cylinder that played the melody “Jesus Loves Me.”
“You’re picking up Kajal from the airport tonight,” Wallace said, “and I can only imagine how stressed and afraid this poor child will be when she arrives in a foreign country. She can’t see and she can’t speak much English. Everything will be strange and frightening to her.”
He handed me the music maker. “Give this to Kajal when she arrives. Wind it up and put it against her face when she arrives. The vibrations of the music will comfort her,” he explained.
I was deeply moved. I knew how hard it must have been for Wallace to get out of bed and make this gift. “Thank you, Wallace. This is really special. I know she will love it.”
With special permission from Nashville airport authorities, I was allowed to go inside the airport and wait for our city’s special guests at their arrival gate. Through the glass, I saw Kajal and Grace descend an open air staircase from the plane, and then I scanned the passengers emerging from the jet bridge until I saw the faces I had been anticipating. Grace held the hand of little Kajal, whose face was tense and her eyes were closed. She stayed very quiet and clung tightly to her caretaker. Grace looked down and placed a reassuring hand on Kajal’s cropped hair.
I greeted Grace and bent down to whisper hello to Kajal. She smiled timidly, so I wound up the wooden music maker Wallace had made for her and placed it against her cheek as he had suggested. As Kajal felt the music, she lit up and the cutest smile appeared on her face.
As we walked toward baggage claim, I handed Kajal a lollipop. “Thank you, Dr. Wang,” she said, a phrase she had learned especially for this moment. After our first meeting, we had a standing date each week for lunch at an Indian restaurant, and every time I saw her, I gave her a piece of peppermint candy. I wanted to do all I could to bond with her before her surgery, by building consistency and a sense of familiarity using her other senses, since she couldn’t see.
The next day, Grace and Kajal came in for the initial evaluation. The office was crowded with foundation board members, supporters and friends, who were all on hand to meet Kajal and present her with welcome gifts. Underneath all the excitement, however, I felt tremendous stress. For months, television and newspaper reports had chronicled Kajal’s journey from India to America. It felt like the entire city of Nashville had come together to help and was now watching to see what would happen to this little girl. Normally, I try to remain emotionally detached from my patients because as an eye surgeon, when you’re holding a blade and about to cut into someone’s eyeball, a measure of objectivity is absolutely necessary. But my care for Kajal was totally different. I was deeply affected by the tragedy and darkness this four-year-old orphan had endured, which reminded me of my own darkness and struggle to survive when I was young , and I had put so much time and effort into the entire process leading up to this moment, so I was already emotionally invested. I had not even performed any surgery on Kajal yet, but I had already exceeded the usual demands of a doctor-patient relationship significantly.
Dr. Lisa Martén, a physician on a yearlong corneal fellowship with Wang Vision Institute, was the first to examine Kajal.
“Can you see the light?” Dr. Martén asked.
Grace translated for Kajal, who responded, “Yes.”
“Can you see my hand?”
Kajal shook her head no. After taking digital photos of Kajal’s eyes, Dr. Martén came to me looking very concerned.
“Her left eye is gone,” Lisa whispered. She understood the level of stress I was feeling, and exactly how hard this news would be for me to hear. “There’s no chance of saving that eye.”
Kajal’s left eye had lost inner matter and had shrunk from malnutrition, so its structure was destroyed. I felt like I had been punched in the gut because I had hoped I would have the chance to repair both eyes. I knew the damage was going to be severe given the nature of her injuries, so I reasoned that if surgery on one eye failed, we would have a second chance when we operated on the other eye. But with her left eye gone, our only hope now was in her right eye.
“As for her right eye,” Lisa continued, “the injury is also very severe. She barely has light perception out of that eye, so maybe only one percent of that eye’s vision remains.”
My heart fell into my stomach. Kajal’s vision was much worse than expected but more importantly, her injury had occurred at least a year earlier. Being blinded at such a young age posed problems beyond just the physical damage. The brain’s ability to receive and process visual stimulation is constantly developing between birth and the age of eight. Kajal had already been in darkness for at least a year, so at four-years-old, the longer she went without visual stimulation, the less likely it was that she would ever recover any sight in her remaining eye.
But I held onto that slim bit of hope and refused to give up. We planned a series of surgeries for her right eye that would span a two-year period. A ruthless and abusive family member had stolen Kajal’s sight but God willing, I would do whatever I could to give it back to her.
On Monday morning, May 14, 2007, I performed Kajal’s first surgery. The goal of this procedure was to replace her scarred cornea with a clear one and prepare her eye for a more definitive, complex surgery involving stem cells.
However, I was completely unprepared for what I discovered.
During the surgery, I first carved out and removed the thick layer of cloudy white cornea and opened her eye cavity. Then I discovered that the inside of her eye looked like a bomb had exploded. Her eye was filled with a bloody gel and scar tissue that intertwined with a strange, shimmering substance.
“I’ve never seen that before,” I said to the surgical team, in shock.
I had also never before encountered an eyeball quite that damaged, not even with Brad Barnes.
I was stunned when I realized that the atrocity against Kajal had been committed while she slept, with the full intention of damaging her eyes and blinding her. When Brad Barnes was blinded by a molten aluminum accident, at least he had some protective gear and the reflexes to shut his eyes and jump away from the source of injury. Despite how badly he’d been burned, the damage was still comparably superficial, so we were able to successfully treat him. But Kajal was utterly defenseless against her attacker, who chose to harm her while she was asleep, holding her down and prying her eyelids open long enough for the corrosive acid to destroy the deepest layers of both of her eyes. The acid had torn apart the colored iris and disintegrated the lens. The vitreous humor, the clear gel that fills the area between the lens and the retina, was bloodied.
I was encountering the worst-case scenario as a physician; I saw many things no surgeon should ever see, and found nothing I was hoping to find.
My shock gave way to a rising anger. I seethed at the thought of her stepmother’s heinous act. How could anyone do such a thing to a young child? For the first time in my Christian journey, I was mad at God. I didn’t understand how a loving God, one who cared for children—especially orphans—could have allowed such horror to be inflicted on one who was so innocent and helpless.
I cleaned
up Kajal’s eye and sutured on a clear, healthy cornea from donor tissue, which I covered with an amniotic membrane. She was then taken to recovery. After the long hours of surgery, I sat down and put my head in my hands. I was sweating from the difficulty of the surgery, but most exhausted was my spirit. I was not happy that God hadn’t prevented this atrocity and that he had brought Kajal across the globe when He knew there wouldn’t actually be much we could do to help her.
“God, if you love Kajal, why would you allow the absolute worst thing to happen to such a precious child?” I asked bitterly. “Why couldn’t you have spared her even the least bit of vision, just a little bit, instead of letting her injuries go all the way to the last layer of the eye?”
I waited until Kajal had come out of general anesthesia to talk to Grace and the host families.
Kajal’s right eye was patched with a thick, white bandage, but tears flowed beneath it as she awoke to the post-operative pain and discomfort. Grace cradled Kajal in her arms, gently swaying back and forth in the rocking chair.
“That was really tough,” I admitted to Grace and Kajal’s supporters, though I held back how deeply angry and upset I really was. “We did all we could. She may or may not regain any sight. We just have to see what God’s plan is.”
In July of 2007, I performed the second stage of surgery on Kajal to remove the amniotic membrane, transplant another new cornea, and graft stem cells that would help her new cornea heal. After the surgery, Kajal could make out shapes, shadows, and some color, which was about ten percent more sight than she had when she arrived. But I had hoped for more … so much more.