Gifted Hands: The Ben Carson Story (25 page)

T
he next part of the story is told by Susan, who later taped a record of Craig's story, including her experience during the first 1988 surgery that I have just described.

SUSAN WARNICK:

A lot of friends and family members came to stay with me during the surgery that night, and I was thankful for their presence. When people weren't talking to me, I spent most of the time reading my Bible. I wanted to trust God and to push away all my doubts. But the doubts were there, gnawing at me. I couldn't grasp what was happening or understand why I was falling to pieces. I had had real confidence in God for such a long time. I was so certain that we would have a miracle. Over the years, anytime Craig showed signs of discouragement I was there to motivate him, to let him know I was with him and that we could face anything together because God was in charge of our lives. I had been so strong, and now I was falling apart.

That night nothing snapped me out of my depression. I remember saying to some of the people in the room, “I've never said this before, or felt this way before either, but right this minute I feel totally defeated. Maybe God wants me to understand that enough is enough. Maybe Craig and I can't handle this anymore. Maybe … maybe it's best if it ends this way.”

Naturally they tried to comfort me, but I could do nothing but wait and worry.

Sometime in the middle of the night, I looked up and saw Dr. Carson coming into the waiting room where I sat with my family. He explained about the location of the tumor, the brain damage, and said something like, “As I said before, this was likely to happen. At best, Craig will probably live a few more months and then die.”

Dr. Carson has a reputation of being unflappable and showing no emotion when he talks to families. He has a soft, kind voice, so quiet that many times people have to strain to hear him. Most of all, he is always so calm.

I held myself rigid as I listened to what amounted to Craig's death sentence. The more Dr. Carson told me, the more upset I became. I didn't cry, but my whole body started trembling. I was aware of this shaking and, the more I tried to control it, the more convulsive it became.
Craig is going to die
… Over and over that sentence rang through my head.

Dr. Carson did say that he would try to remove this tumor if Craig and I were willing to go back to surgery again. But he also told me that Craig would definitely be paralyzed on one side of his body, “ … and there's a possibility that he will die.”

For a few minutes I hardly noticed Ben Carson or heard anything. Craig was going to die—after that nothing much registered. Dr. Carson was standing in front of me, trying to comfort me, and I knew he could never find the words that would bring me peace. After 14 years of researching VHL and having it drilled into my head that if Craig ever had a tumor in his pons, he would die, I knew what was happening. My Craig. I was going to lose him. Craig was going to die.

“The tumor was in the middle of the pons,” Dr. Carson repeated. At that moment I looked up and saw Dr. Benjamin Carson, the human being. Naturally he was tired, and I could see the weariness around his eyes. But it was more than that.

This isn't the way he usually looks
, I thought.
Something's different about him
. Then I knew. Dr. Carson was discouraged. Defeated.

I realized that I had been so caught up with my own confusion and pain, I had only thought of Craig and me, never considering what might be going on inside Dr. Carson.

Here was a man who masked his emotions well, and yet he wasn't doing it well right then. I thought,
This man removes half of people's brains. He does surgical procedures no one else can do
. Yet I read a sadness in his face, a look of despair.

Momentarily I forgot about Craig and myself and I felt sorry for the doctor. He had tried hard, and now he was frustrated and really down.

He finished talking, turned, and walked down the hall. As I watched him, I kept saying to myself, “I feel so sorry for him.”

I ran down the hall and caught up with him. I hugged him and said, “Don't feel so bad, Ben.”

I went back to the room. A patient had gone home that day, and the nurses let me spend the night in the unused room. As I lay on the bed, I stared at the ceiling. I was angry—so angry.

I couldn't remember feeling that much emotion at anytime before.

“God,” I whispered in the semidarkness, “we've been through so much. We've seen a lot of positive things come out of all of this.

“Even though I've had moments when it was difficult for me, especially in our early years together, this is the worst. I'm mad at You, God. You're going to let Craig die and do nothing about it. If You were going to take him, why didn't You do it in 1981? Or when he had his first tumor? If You're so loving, how can You let a person like Craig go through this much only to end up dying?

“Nothing makes sense anymore. You're going to make me a widow at 30. Craig and I will never even have a child.” I recalled other women who had lost their husbands telling me that having children after their husbands' death gave them purpose, a reason to live. “They at least have children! I don't have anything!”

I hurt so deeply inside, I wanted to die.

A few minutes later I went into the bathroom and saw my reflection in the mirror. I didn't recognize the face that stared back at me. It was such a weird experience, and I stared at the stranger before me.

I walked back to the bed, more miserable than ever. I felt as if my whole life had been a mistake. “Useless! That's me. All the effort, all the caring—for nothing. And how can I live without Craig? How can You expect me to go on without him?”

The venom poured out of me. I blamed God for putting me in the position of making Craig my whole world. Now God was going to take him. I cried and let my anger spew out.

Exhausted, I finally stopped talking. In a moment of quietness, God told me something. Not a voice, and yet definitely words.
Craig is not yours that you should demand to keep him. He doesn't belong to you, Susan. He is mine
.

As the truth came through to me, I realized how foolish I had been. Craig and I had surrendered our lives to Jesus Christ back in high school. Both of us belonged to God, and I had no right to try to hold on now.

Only a few days before I had been listening to a Christian radio program. The preacher told the story of Abraham taking Isaac up the mountain and of his willingness to sacrifice him—the person Abraham loved most in life.
*

I thought of that story and said, “Yes, God. Craig is my Isaac. And, like Abraham, I want to offer him up to You.”

As I lay on the neat hospital bed, a wave of peace slowly washed over me, and I slept.

BEN CARSON:

The afternoon following the second brain-stem surgery, I was making my rounds and went in to see Craig. I couldn't believe it—he was sitting up in bed. I stared at him several seconds and then, to cover my amazement, I said, “Move your right arm.”

He moved it.

“Now your left.”

Again, quite normal reactions.

I asked him to move his feet and anything else I could think of. Everything was normal. I couldn't explain how he could be normal, but he was. Craig still had problems with swallowing, but everything else seemed OK.

“I guess God had something to do with this,” I said.

“I guess God had everything to do with it,” he answered.

The next morning we were able to remove the breathing tube.

“Going to empty me out?” Craig laughed. He was cracking jokes, having a fine time out of all of this.

“You got your miracle, Craig,” I said.

“I know.” His face glowed.

I was at home with my family one evening about six weeks later when the phone rang. As soon as Susan recognized my voice, without bothering to identify herself, she shouted, “Dr. Carson! You won't believe what just happened! Craig ate a whole plate of spaghetti and meatballs! He ate it all. And he swallowed everything! That was more than half an hour ago, and he's feeling great.”

We talked for some time, and it felt good to know that I had been a part of their lives during one of their special moments. It made me think of how we take simple things for granted—like the ability to swallow. Only people like Craig and Susan understand how wonderful this is.
*

CHAPTER 19

Separating the Twins

I
wanted to kill them and myself as well,” Theresa Binder said. In January 1987, during her eighth month of pregnancy, the 20-year-old woman received the terrible news—she would give birth to Siamese twins.
*

“Oh, my God,” she cried, “this can't be true! I'm not having twins! I'm having a sick, ugly monster!” She wept almost continuously for the next three days. In her pain this mother-to-be contemplated every possible way to avoid giving birth to the twins.

Theresa first thought of overdosing on sleeping pills to kill the unborn twins and herself. “I just couldn't go on and, for a while, it seemed like the only solution for them and for me.”

But when she actually faced this answer, she couldn't bring herself to swallow the pills. Some of her thoughts bordered on the bizarre, contemplating something, anything, just to have peace and to get herself out of this nightmare. She had considered running away, jumping out of the window of a tall building. No matter what she contemplated, she heard herself saying, “I just want to die.”

On the fourth morning Theresa suddenly realized that she could kill herself—that would be bad enough—but that by her suicide she was murdering two other beings who had the right to live.

Theresa Binder made peace with herself, knowing that she would have to face whatever happened. Now she could move beyond the tragedy and live with the results. Other parents had.

Yet, only months before, Theresa and her 36-year-old husband, Josef, were overjoyed at the prospect of a baby. Early in her pregnancy her doctor informed them that she was carrying twins. “I was filled with joy,” Theresa recalled, “and thanked God for this wonderful double gift.”

In anticipation, this couple in Ulm, West Germany, bought identical baby clothes, a double cradle, and a double baby carriage as they awaited the twins' arrival.

The twins, Patrick and Benjamin, were born by Cesarean section on February 2, 1987. Together they weighed a total of eight pounds fourteen ounces, and they were joined at the back of the head.

Immediately after birth the twins were taken to the children's hospital, and Theresa didn't see them until three days later. When she finally saw her babies, Josef stood at her side, ready to catch her and carry her from the room if necessary.

She stared at the joined infants in front of her. Words like
monster
fled from her, and Theresa saw only two tiny boys—her babies—and her heart melted. Tears streamed down her face. Her husband embraced her, and then they hugged their sons. “You are ours,” she said to the boys, “and I already love you.”

Mother love never deserted Theresa Binder, although the days ahead were difficult—heartbreaking at times. Her protective care grew stronger.

The parents had to learn how to hold the babies to be sure they were both well supported. Because their heads turned away from each other, Theresa had to sit them against a cushion and hold a bottle of milk in each hand to feed them. Although the twins shared no vital organs, they did share a section of the skull and skin tissue, as well as a major vein responsible for draining blood from the brain and returning it to the heart.

Five weeks after their birth, the Binders took their sons home. “Not once did we ever not love them,” Josef said. “They were our sons.”

Because of their being joined at the heads, the boys couldn't learn to move like other infants, and yet, from the beginning, they acted like two individuals. One often slept as the other cried.

The Binders lived with the hope that their chubby, blond sons would one day be separated. As they considered the future of Patrick and Benjamin, they learned that if the boys remained attached they would never sit, crawl, turn over, or walk. The two beautiful children would remain bedridden and relegated to lying on their backs for as long as they lived. Not much of a prospect for them.

“I have lived with a dream that has kept me going,” Theresa told me when we first met. “A dream that somehow we would find doctors able to perform a miracle.”

Night after night as Theresa went to bed, her last thoughts centered on cuddling and holding each of her sons separately, playing with them one at a time, and putting them in different cradles. Many of those nights she lay in bed, her eyes wet with tears, wondering if there would ever be a miracle for her sons. No one had successfully separated Siamese twins joined at the back of the cranium with both surviving.
*

“But I didn't give up hope. I couldn't. These were my sons, and they were the most important thing in my life,” she said. “I knew I would fight for their chance as long as I lived.”

The babies' physicians in West Germany contacted us at Johns Hopkins, asking if the pediatric surgical team could devise a plan to separate the Binder twins and give them their chance to live normal, separated lives.