Escape. Part 20

"Harrison is going to die because of your rebellion. It is your fault that he is sick. G.o.d will take him from you because you have been in rebellion to your priesthood head. You can take him to every d.a.m.n doctor you can find, but no one will be able to heal him. G.o.d is going to destroy his life because of the sins of his mother."

His chest was heaving with anger. His cheeks were flushed with anger. And he was almost out of breath.

My eyes were on fire but my words were measured.

"I already made this appointment. Do you want me to cancel it?"

He roared back like an angry bull p.r.i.c.ked by the matador's spear. "You know what I want! I have told you it will do Harrison no good to see any doctors as long as your att.i.tude is what it is!"

I turned and walked back into the house. His physical violence had startled me. Merril had never attacked me before. I knew I was no longer safe in his home. I also knew this: Merril wanted Harrison to die to prove that I was in rebellion to G.o.d. He had utter contempt for his own son. I knew his real concern was that Harrison could live and not be normal.

When I got back inside I gathered up Harrison and my other children. We had to get away before Merril came back inside. I knew if he attacked me again it would be far worse.

I drove to my father's house, where I knew I'd be safe. I told my mother everything that Merril had done to me in the field. She was outraged and said I should leave him-which was an extraordinary turnaround for a true believer like my mom.

I told my mother that there was no way I could leave with a child as sick as Harrison. But I also knew I would never be safe in his home again, not with someone with his history of violence. I told her that I was finished with the FLDS and that being condemned to h.e.l.l for eternity was far better than the living h.e.l.l that stretched out for at least fifty years ahead of me. But there could be no escape until Harrison got better.

My mother and I came up with a plan. I would spend the days hiding out at my father's house and the nights at Merril's. I could not risk getting my father into trouble with the FLDS, which had very strong beliefs against a father interfering in his daughter's marital life, even if he felt she was being physically or emotionally abused. It is a sin for a woman to talk about abuse; if she's being abused, it is because she is not in harmony with her husband. My parents would be considered sinners in the FLDS for listening to me talk about the abuse. Their job was to talk me into being more obedient to my husband's will.

One day when I was at my father's house, he came back from church and said that Warren had closed the public school system permanently. Everyone in the community had been ordered to educate their children in private religious schools. This affected roughly two thousand children.

As a teacher, I had seen what happened academically when families in our culture home-schooled their children. It amounted to no school. Families were now to band together in small groups and create their own religious schools. There was no uniform curriculum. Warren would tell each school what to teach. Warren didn't want credentialed teachers teaching. He believed we had been contaminated by worldly knowledge. Anyone with an education was seen as a threat because we were too involved with the ways of the world.

It was no secret that Warren Jeffs closed the public schools; it was covered in local newspapers as well as the Salt Lake City Tribune. Salt Lake City Tribune. But, inexplicably, there was no public outcry or state action. But, inexplicably, there was no public outcry or state action.

Education, which I prized, had almost no value in Warren Jeffs' FLDS. The changes were dramatic but had occurred incrementally. First no one was allowed to get a college education. Then the public schools were closed and those of us who took pride in working there were seen as a threat.

I continued to stay at my father's every day until very late at night. Then we'd return home after everyone was asleep in Merril's house. I would lock my children into my room with me. Harrison would sleep for about two hours and then by early morning we'd head back to my parents'.

Merril cornered me in the family sewing room one afternoon when I was getting some material and patterns to take to my parents' house to make back-to-school dresses for Betty and LuAnne, who were then eleven and nine years old. He insisted on talking to me. All I said was, "I don't want to."

I think this was the first time in my entire married life that I had ever intimidated Merril.

He went to my father and urged him to get me into line. Merril downplayed the situation and said our conflict was relatively minor. My father said he had heard that there had been physical violence between us. Merril tried to brush that off, too. Dad reminded him that I'd been married now for many years and he didn't have any influence with me anymore, nor did he see how he could help the situation.

I knew our crisis had escalated when I heard Merril had talked to my dad. It would be only a matter of time until he went to his buddy Warren Jeffs. I would be in even worse trouble once that happened. I began writing a letter to Warren that told my side of the situation. I wanted to be allowed to live in the community but away from Merril in a s.p.a.ce of my own.

I wrote whenever I had a few moments of help with Harrison's care. It took me several weeks, but I finally had a seventeen-page letter that detailed the awful history of abuse that Merril had dealt out to his wives and children. I was building my case to explain to Warren why I was unsafe in Merril's house.

Several of my friends and sisters called me to say they'd seen Merril driving around the community with Warren. I knew things were going to blow. The next Sunday in church, it happened. Warren gave a rip-roaring sermon about fathers who try to interfere in another man's family to protect their daughters. I knew my father faced excommunication from the FLDS if he continued to allow me to stay in his home.

My father called Warren as soon as he got back from church. He explained that there was more to the story than he could appreciate. He said I had a letter that explained why I wasn't willing to go back to Merril. Warren agreed to take the letter and meet with my father and me later that night. We were told to keep the meeting secret and wait until after dark before we drove to Uncle Rulon's house. Then we were to park down the road and knock on the front door at a specific time.

We did exactly as we were told. Warren had one of his brothers waiting for us and took us to a room where Warren was waiting. He seemed irritated that he had to deal with this situation and acted as though it was a lot of nonsense. Still wearing his suit from church, he sat in a chair with his hands folded in his lap. Most of the time he looked down and only raised his head when he spoke.

My father did the talking. I gave Warren the letter. He said he would read it and discuss it with his father and call me at my father's home the next day. He didn't want Merril's family to know that he was talking to me. Warren asked me if I wanted a release from my marriage. I told him I did not because I knew I risked being placed in a worse situation. Warren went silent and cold, but I was not putting myself on his chessboard to be moved around from one marriage to another.

My father asked if he could speak with Warren privately. Afterward, he told me that he'd said he knew me well and knew what I was capable of doing. He told him I had been pushed too hard and that if Warren didn't pay attention to me, I could cause him a lot of trouble.

Warren heard this as a threat, but my father wasn't threatening him. He was telling him the truth. He knew if I was forced back into Merril's abusive household I wouldn't ask for help a second time. I would escape.

Warren called me the next day and said he had read the letter. He told me that I had written only about Merril's sins and confessed to none of my own. Because of this, Warren doubted that I had been truthful. He wanted me to come and meet with him and Merril. Warren wanted to give my seventeen-page letter to Merril. I knew if that happened he'd pa.s.s it around to all his wives and children. I asked Warren to keep the letter to himself. Warren agreed Merril could read the letter when we met.

Merril met me at noon the next day. Neither one of us spoke in the car. Warren laid down ground rules when we got to his house. He said he would know which one of us was wrong by seeing who lost control. I knew I would have no trouble staying calm. But it would be a huge problem for Merril.

Merril read the letter and practically stopped breathing. I think this was probably the first time in his entire life that someone had called him on his c.r.a.p. He took several deep breaths after he read it and then laid the pages on the floor.

Warren turned to me and said that I had confessed Merril's sins and now it was time for me to confess my own. I wasn't that stupid. I knew anything I confessed to could be held against me.

I confessed to a few small crimes. "Well, sometimes I walk past something on the floor and don't pick it up. There have been times after Sunday dinner when I didn't wash the pans that I had used. Once I burned some rolls for Sunday dinner...." My list went on from one small offense to the other.

Warren's face was sober. I couldn't tell if he was enjoying this or not. Merril jumped in at one point and said, "The one thing Carolyn is not guilty of is being careless or sloppy. She irons everything and cooks better than most in my family. She's extremely gifted in homemaking and always has been."

Warren was getting impatient. "I wasn't asking for these kinds of confessions. The elements in this letter scream a case of immorality. Merril, has your wife been involved with immorality?" Merril shrugged and then looked at me.

I looked at both of them as if they were crazy. I had never had s.e.x with anyone other than Merril. It was not immoral to complain about abuse. It was just the opposite.

"Before you married this good man were you ever involved with a boy?" Warren's questions struck me as ridiculous. I was not going to play his game.

As a teenager I had kissed a boy when we ditched theology cla.s.s. He was now an upstanding member of the community, and I was not going to be intimidated into ratting him out.

I had written a seventeen-page letter to Warren Jeffs about Merril's abuse. It was a serious letter that deserved a serious response. It was clear from Warren's question that the tide was turning against me.

He took my silence as an admission of guilt. I felt like a young girl in Salem, Ma.s.sachusetts, who, if she didn't admit to being a witch, was a.s.sumed to be one and condemned to death. Either way I was going to lose.

Warren took a book of Uncle Roy's sermons off his shelf and gave it to me. He told me that one of Uncle Roy's most faithful wives had tried to leave him at one time.

"I want you to go home, read some sermons, be obedient to your husband, and repent," Jeffs said.

I didn't say anything. If he was going to ignore the problem, nothing I could say would make a difference-if anything, it might be spun in such a way as to condemn me even more.

As we were getting ready to leave, Warren told Merril that he wanted to speak to me alone. He said he believed I'd be safe in Merril's house and that it was unlikely that Merril would try anything violent after I'd made such a stink. Warren halfway admitted that Merril had told him he'd wished he hadn't hurt me.

I was outraged when I left his office. Jeffs knew I was telling the truth. But Merril had won. I was labeled an immoral woman and a liar.

My life in the FLDS was over. I would never submit to Merril's abuse again, nor would I go for help to anyone in the community. But Harrison was too sick for me to even think of escape. I would lie low until I could figure out another option.

Merril came to my bedroom that night and we had s.e.x for the first time in three months. With Harrison being so sick I knew I had to sleep with Merril. I couldn't do anything to provoke his anger against me or my other children.

Harrison seemed to be getting worse. My mother and I took turns caring for him at night so I could get enough sleep to hold on. No one in Merril's family would help me.

One night my mother called and told me to come right away. When I got there Harrison was having trouble breathing. Dad told me he was going to have Mom take us to the emergency room at St. George. He said we couldn't call a local ambulance because they would insist on calling Merril for permission to take Harrison to the hospital.

"This is on you and your mother," Dad said. "I will deny that I knew anything about it. You'll both have to take the heat. But if you don't get Harrison to the hospital tonight he is going to die."

Dad told us to be sure we kept our stories straight. Mom was caring for Harrison and he went into a crisis. We rushed him to the hospital on our own. Dad couldn't risk being accused of interfering with another man's family. I could get in trouble for taking my son to the hospital without Merril's permission, but none of us cared.

Mom drove as fast as she could. Harrison was fighting for every breath of air. He was so worn out I thought he was dying. I ran into the ER with him. The nurse took one look at him and buzzed us right in without asking questions. Doctors and nurses sprang into action. The room came to life in a frenzy of activity that was frightening. Harrison stabilized after a few hours, but he was in critical condition. I was told he was too sick for them to consider doing any tests.

The next morning the pediatrician came and told me we were both going to Phoenix on a life flight within hours. The doctors there were alerted and reviewing his case. This was something much more serious than a postviral infection.

I called my mother and told her the news. Since she and my father were already in trouble for helping me as much as they had, she hadn't been able to risk staying with me at the hospital, so she'd dropped me off and left. She said she'd try to bring me some clothes.

Dad called Merril in the morning and pretended he'd only just found out that I was in the hospital. He told Merril we were being flown to Phoenix on a life flight. Merril called me at the hospital. He could barely contain his anger. Harrison was getting the care he needed and Merril was powerless to stop it.

A nurse stayed at Harrison's bedside continually at St. George. When one left, another took her place. I finally felt safe. This was one of the few breaks I had from three months of nonstop crisis with Harrison.

An ambulance was waiting for us when our life flight landed in Phoenix. We were rushed to Phoenix Children's Hospital, where fifteen specialists were on standby. Test after test was done to rule things out. Each time a test came back negative, that specialist was dropped from Harrison's case. After two days of testing the diagnosis was narrowed down to a genetic disorder or cancer. On the third day Harrison was diagnosed with a spinal neuroblastoma, a fatal cancer.

The next day a test was done to pinpoint the location of the cancer. Harrison had a tumor growing next to his spinal cord-but it had yet to invade it. I was told that this was an extremely rare cancer that most children do not survive. The doctors explained that Harrison had been born with spinal neuroblastoma but symptoms don't appear until the tumor begins to grow.

Merril called occasionally and asked a few questions but without much interest. His att.i.tude was that Harrison's death would humble me and then I would learn not to treat my priesthood head with disrespect.

A doctor came into Harrison's room that first night to do yet another test. I was sitting alone in a chair and sobbing uncontrollably. He stood there with compa.s.sion in his eyes and said, "I wish I could give you the answers I know you want to hear-that your son is going to be all right. But I can't tell you that, and I understand that this must be h.e.l.l for you, watching your baby go through something no one should have to endure."

I nodded. I couldn't speak. When he left the room I thought how much kinder and decent this doctor had been to me than Merril or anyone else in his family had. Why was I at the hospital alone while everyone else was home and no doubt judging me as a sinner? In their eyes my son's cancer was proof that I was being condemned by G.o.d.

For thirty-two years, I'd believed that every person on the outside of the FLDS community was evil. It was not lost on me that the only people willing to fight for Harrison's life and help him survive were outsiders.

But doctors and nurses weren't the only ones who were kind. A social worker at the hospital came by to make sure I had money for meals and had a change of clothes. Merril never asked me if I had enough money to survive while I was in Phoenix. I'm sure he thought that as long as I was in rebellion, I was on my own.

The night Harrison was diagnosed, I lost it. After the kind doctor left Harrison's room I couldn't stop crying. There was a terrible downpour that night, and I stared out the window into the rain. I could see planes landing and taking off in the distance. Freedom to come and go. There had been no freedom in my life for fourteen years. In the last few months I had been tortured by the screams of my suffering son. I cried until I couldn't cry any more.

My sobs finally subsided. Harrison was quiet and sedated. I kept looking out the window because I was free to do that. It was a peaceful moment. I was tired, weak, and exhausted. But I knew I wasn't broken. Nothing was going to stop me from fighting for Harrison's life, and finally, at Phoenix Children's Hospital, I knew I wouldn't have to do it alone.

The doctors wanted to move forward as quickly as possible. I signed papers the following morning to authorize Harrison's treatment. If Merril had come to Phoenix with us, I'm sure he would have tried to block the surgery.

Harrison was wheeled into the operating room on day five. His tumor was located between two main arteries and was partially encased in one of the veins that fed the spinal nerves. The surgeon explained to me that one of the risks of surgery was that Harrison could be paralyzed for the rest of his life.

It was such a dangerous operation that Harrison was cut nearly in half to open him up wide enough. One of his ribs was removed. The operation lasted for several hours and I got regular briefings from a physician.

The wait for me was agonizing. Merril had come and brought Barbara, several of her sons, Betty, several of my boys, and a few others. Merril was the only one allowed in the family waiting room with me. He told Barbara to watch the others, but she had a seizure and ended up being admitted to the Good Samaritan Hospital. When Merril heard what had happened he left me to stay with her.

As soon as the operation was over, the surgeon told me he felt very confident that he'd removed the entire tumor. He was pleased and felt the operation had been successful.

There was more good news when the tumor was biopsied: Harrison didn't need any chemotherapy or radiation because his cancer was caught so early because of his spasms. The spasms had saved him. Without them the cancer might have progressed to a stage where it was incurable. But his immune system, along with fighting the cancer, was also attacking his nerve tissue. The spasms had been caused by his immune system identifying his entire nervous system as the enemy and launching a full-scale attack on it. The doctors felt Harrison's immune system would now have to be suppressed.

Harrison stabilized a few days after surgery and was started on IV therapy to suppress his immune system. It was critical that his spasms be controlled because they put him more at risk than anything else.

His weight loss was another potentially life-threatening issue. He had a gastric tube, or G-tube, inserted to supply him with nutrition. We wouldn't be allowed to leave the hospital until I knew how to use his G-tube. I learned how to insert it and keep it clean to prevent any chance of infection. Everyone at Phoenix Children's Hospital was friendly and supportive toward me-despite my weird polygamist clothes. Their genuine concern touched me deeply. I couldn't explain to them how strange and abusive my world really was. The claustrophobia I lived with every day had become second nature to me. It had been years since I experienced three weeks in a row of kindness and support, but it felt miraculous to me.

When we were finally ready to go home Merril came to drive us back. It was an awful trip. We barely spoke. Harrison had a hard time. He was still screaming and I had to manage his feeding pump, which was quite a job.

I was so glad to see my six other children when I got home. I had never been apart from them for so long. I was happy to see them looking so well and strong after my three weeks in a hospital, where each child seemed sicker than the next.

What surprised me was that my bedroom was clean and all my children's laundry had been recently washed and put away. This didn't jibe with the fact that no one in the family was speaking to me. I was treated like a wicked woman. The other wives would answer a question if I asked, but otherwise I was shunned. G.o.d had spoken loudly to them through Harrison's cancer.

That weekend when Cathleen came home she brought coffee to me in my bedroom before I was up and dressed. I learned that she had cleaned my room and I thanked her for her kindness.

Later I noticed that the family was now acting hostile toward her, too. She was seen as being out of harmony with Merril because she had been helping me. But she didn't quit. For the first time in a long, long time, I felt like I had a friend in my own family.

Harrison did well initially. When we first came home he was able to sleep, with medication, for six hours at a stretch. He never stopped screaming, but I didn't feel he was getting into serious trouble until after we'd been home for two weeks. Something was terribly wrong.

We went back to the doctor in St. George. In the first few weeks after his surgery it seemed we were constantly running back and forth to the hospital. Harrison would either need his pain medication adjusted or he sometimes needed IVs.

Six weeks after the surgery he started turning blue. I called his doctor and rushed him in. She did an X-ray and then admitted him immediately to the hospital. It had seemed to me he'd been getting worse, not better, since his surgery. Now we knew why. His entire chest was filling up with lymphatic fluid. Every lobe of his lungs had collapsed except one, and that wasn't providing him with enough oxygen.

A surgeon was called in to drain some of the fluid from his lungs. Once the fluid was drained we were medivaced back to Phoenix. Harrison was admitted to the ICU for pediatric cardiac care. He was sedated and slept for a long time. I was so terrified that he might die, I rarely left his side. I felt anguished at the level of suffering he must have endured during the past three weeks.

Harrison had an X-ray every day for the next two weeks to make sure the fluid was not filling up again in his lungs. Also, amazingly, we saw that the rib the surgeon had removed was beginning to regenerate. I could see the progression on the X-rays as it grew back into a rib. I asked the doctor if he'd ever seen anything like this before and he said that he hadn't. But he added that he had seen some amazing things happen when it came to healing in children.

Two weeks later, Harrison and I went home again. He had made remarkable progress. When we'd first arrived I was told we might be there for six weeks, certainly at least three. But he was doing better than anyone had ever expected.

The gladness I felt knew no bounds.

Cathleen Comes Home

Coming home with Harrison from Phoenix Children's Hospital the second time was a relief at one level, but at another it was the beginning of an even more intense ordeal. Harrison had survived a complicated surgery, but his regime of pain medication was not working.

Harrison screamed almost nonstop. When he went into one of his spasms, he would bite his arms and hands. It was almost a constant effort to keep him from hurting himself. His doctor prescribed a higher dose of Versed, a potent relaxant and anticonvulsant used to treat seizures and as premedication in some surgical procedures. It's fast-acting and has a short half life in the body.

I could give Harrison three doses of Versed within an hour, but then I would have to wait for two hours until I could medicate him again. He usually calmed down after the second dose, but not always. Sometimes it took three. The IV therapy was finally stopped because the doctors felt it wasn't helping Harrison enough, and his Port-a-Cath-the direct line into his body that was used for his IV therapy-was removed. I was relieved to see that go because it meant one less risk of infection.

Harrison had a hard time sleeping at night. I gave him chloral hydrate, a strong sedative, but it did not always work. In an effort to wean him off the IV therapy, his doctors had given him a drug to control his neuropathy, but it sent him into major anxiety attacks. For weeks, it felt that I was always on the phone with Harrison's doctors, constantly juggling medications, adding here, subtracting there, to try and find the balance that would stop the spasms and his screaming.

One day blurred into the next. Despite his feeding tube, which pumped nutrition into him twenty-four hours a day, Harrison had a hard time maintaining weight. He was switched from a high-calorie formula to a lower-calorie one because he had a leak of his lymphatic fluids. Lymphatic fluids are produced by fat, so with less fat in his system, the leak slowed. The fat content of his diet had to be closely monitored until he healed. But he lost weight with the low-calorie formula. I was supposed to try to wean him off the feeding pump and feed him directly because I could get more food into him that way. But when I tried that he'd get sick and throw up.

I didn't have time to think. I was sleep-deprived and burned out from the relentless stress and fear of seeing my healthy baby boy, who had been just on the verge of walking, reduced to screaming spasms that were stripping him of every ability he once had. His vomiting led to a case of aspiration pneumonia.

Do I call an ambulance today or not? That thinking went on for months. The minute it looked like he was having difficulty breathing I called for help. The local ambulance had to come (even without Merril's okay) because Harrison was now known to the system and was being watched. I was on the phone with his doctor all the time, and if the ambulance refused to transport us there would have been an uproar. That thinking went on for months. The minute it looked like he was having difficulty breathing I called for help. The local ambulance had to come (even without Merril's okay) because Harrison was now known to the system and was being watched. I was on the phone with his doctor all the time, and if the ambulance refused to transport us there would have been an uproar.

Finally, Harrison's doctor in St. George said he needed to go back on IV therapy because he was not improving enough and was still constantly plagued by spasms. With two IV treatments a week, he got a little relief from the spasms. Initially, his doctor felt it wasn't helping him enough to warrant continuing, but finally she realized that any relief at all was a plus for both of us. So we made regular trips to St. George for IV therapy and frequent trips to Phoenix to see his oncologist. Cathleen volunteered to drive me to Phoenix, which was an enormous relief because it was eight hours away.

I was terribly concerned when I had to leave my other children at home to take Harrison to the doctors. This was the first time in my married life when I hadn't also had a full-time job. So I was home more, but consumed by the demands of Harrison's care.

Whenever I could, I would take one or two of my children with me to Phoenix. The playroom at the Phoenix Children's Hospital was wonderful. There were many activities to engage them and wonderful educators who really seemed invested in the kids.

Merril's family would never abuse my kids when I was home, and no one was ever sure when I'd be gone. This worked to my advantage-my children were safer overall than they had been for a long time. I think Merril was also wary of upsetting me too much, and so he, too, had backed off, hoping I would stop causing trouble.

Cathleen had become fed up with managing the Big Water Motel in Page. She quit, moved home, and got a job at the grocery store without asking Merril's approval.