The Four Walls of My Freedom Read online

  CHAPTER ELEVEN

  The Prison of Pain

  I don’t remember exactly when the pain began, but two years ago, at a time when I thought Nicholas might not survive, I watched all our home videos. One, a film of his ninth birthday celebration at the cottage, showed him on our balcony surrounded by family, friends, hot dogs and torn-open gift boxes. Early that day, I had prepared hamburger patties for more than twenty guests and had left them on the kitchen counter ready for the grill. Jim had built a golf course of sorts on our back lawn, using ski poles tied with plastic grocery-bag flags sunk into buried lidless tin cans in the ground. We had eighteen such holes, each with amusing “hazards.” Jim helped Nicholas deliver handwritten invitations that read “The Nicholas Wright Invitational Golf Tournament to be held at the Royal and Ancient Lake MacDonald Golf Club.”

  As the golf game neared its finish, I went upstairs to collect the hamburgers for the bar-b-q. They were nowhere in sight. The platter sat clean and empty on the counter. I suddenly had a terrible thought and knew in my heart that I was right — Goldie, our golden retriever, had eaten them. Twenty generous hamburger patties couldn’t fit into the stomach of a normal dog, but I knew the capacities of our Goldie from previous experience. By now, the golfers had congregated on the patio, ready for their lunch. I announced that hot dogs would be served instead of burgers because of one very greedy dog having just eaten our lunch. At the same time, my brother-in-law Gerry with his video camera captured Goldie on the beach below belching up mounds of raw hamburger on the sand. Frank, my sister’s husband, was on-screen suggesting that I should patty them up again since the meat was still fresh.

  As I watched the scene unfold on the videotape, I laughed again as hard as I had the first time it played out. Nicholas was happy, excited and full of jokes. Suddenly, though, his face changed. His laugh turned to a look of shock. “There,” I thought, “is pain.” That startled look and holding of breath would appear sometimes, and gradually we began to see it happening more frequently. We discovered that Nick’s right hip was the problem, and that we could make him more comfortable by standing behind him, grabbing hold under his arms and pulling his body up and backwards. This had the effect of positioning his lower back against the chair — the same as anyone adjusting their position to sit up straight.

  In February 1998, an x-ray showed that Nicholas’ hip was partially dislocated and the doctor explained that surgery to reconstruct his hip was required. He described how in the operating room he would take a piece of the pelvic bone and carve out a V-shaped shim. He would then break the top of the femur and position the shim in the space, finishing by fixing a metal plate with screws to secure the repair. This would angle the ball of the femur into the socket of the hip joint. I was told that a transfusion might be necessary and that I could donate my own blood, because we shared the same type. This I did and we waited for the surgery date to arrive. No one in our family had ever experienced an orthopaedic surgery before, so we didn’t really know what to expect.

  That year for Christmas, I had given Jim and myself a weekend away at a spa. I knew that we both needed some alone time, and Jim was extremely stressed by his job at the Department of Foreign Affairs as director of central, southern and eastern Europe. The war in Kosovo was raging, and Jim was heading up the diplomatic strategy, as well as giving daily press briefings. Often, someone from overseas would wake us in the middle of the night to convey urgent messages from the war zone. I wasn’t sure if we would be able to take the weekend away because our city was blanketed in ice and many roads and hotels were closed. Eastern Canada had been declared a state of emergency just two weeks before — we had lost power in our home and been told by the emergency response team to relocate to a hotel in order to keep Nick safe and warm.

  The city was slowly recovering from the catastrophic damage of the ice storm, and even though we had power at home, some homes still didn’t, so I was surprised to learn that the small country hotel was open for business. I ordered a massage and relaxing herbal bath for Jim. The hotel had once been a priory and still had an aura of contemplation to match the Catholic artifacts. It was surrounded by woods and faced a frozen lake — the setting was lovely. Nicholas’ surgery was set for the Monday. At the hotel, I tried to shake the impending doom I felt during the nights, but I remember lying awake in that birch-panelled room with its crucifix above our bed. I reviewed scenarios of Nicholas’ funeral; I played out scenes of him waking with screams of pain. I felt a sickening weight in my stomach.

  It was agreed beforehand that Nicholas would go straight to the intensive care unit from the operating room because of his disability and we were told of all the possible complications that could ensue. Nick was still asleep when they wheeled him across the hall into the ICU. Jim and I sat by his bedside, waiting for him to wake up, but fearing that moment too. Nicholas’ pain was being controlled by a morphine infusion dripping automatically into his IV. He had received one unit of my blood during the surgery, and as I sat stroking his arms I hoped my blood was filled with strength and love. That is what I had told Nick before the surgery in an effort to soothe his fear. I gently lay my hands on his chest and closed my eyes, trying to will healing energy into his body.

  By evening, he was still asleep when Jim asked, “Are there supposed to be two morphine pumps running?” I dropped Nick’s hand and ran to the nurse. I remember watching his face turn ashen when I told him. The anaesthetist managing the postoperative pain medications had switched from one morphine pump to another, and in her hurry to finish her shift, had forgotten to disconnect the first pump. Nicholas had been receiving double the prescribed dose of morphine for four hours. As Nicholas lay there, his breathing shallow and slow from the morphine, we prayed for him to live. Jim went home to get some sleep and I found a parent room usually reserved for those attending their sick babies in the neonatal unit. It was a windowless, dark room with a single sofa — there was a white sheet crumpled and discarded after someone’s brief respite. I lay down and slept for a few hours. When I came back to the blazing lights of the ICU, the nurse told me that Nicholas had spiked a high fever and that a urine culture showed a severe urinary tract infection, probably caused by the catheter. They started Nicholas on an antibiotic and I continued to worry, because Nicholas had still not woken up from the surgery. He began to have frequent diarrhea, and C-dificil, the dreaded hospital superbug, was diagnosed. The strongest antibiotic was prescribed, and Nick continued to sleep. Days passed and even needle jabs did not wake him.

  Almost ten days later, Nicholas had still not woken up and I was frantic, thinking that the morphine overdose had caused more brain damage. Finally, the neurologist was called and he peered at Nick, checking his pupils. “He’s snowed. The level of his epilepsy medicine is probably too high. We’ll test it.” The medication level was more than five times higher than normal and this had been causing Nicholas to be so drugged. The doctors concluded that Nick must have reacted in an unpredictable way to the mixture of antibiotic and epilepsy medicines. Finally, my boy awoke and I knew that he was all right. He was crying and blowing kisses, asking to go home.

  After six days on the regular ward, our discharge date arrived and we were told to await a transport ambulance that would deliver Nick to our house on a stretcher. Discharge papers were signed and we waited for the transport to arrive. And waited. Apparently the ambulance service was busy with more urgent cases than simple stretcher taxi bookings. I was told that it might be midnight before we arrived home. After six hours of waiting, I decided to take Nick home myself in our van. I moved the front seat as far back as I could, then reclined the seat to its maximum. I put pillows on the floor to create a resting place for Nick’s lower legs and observed the result. It looked good and I thought Nicholas could be comfortable in the seat. I just needed help to lift him into the van without grazing his casted leg on the door frame. Any slight jar might be very painful. Staff on the ward refused to help move Nichol
as to the van because the doctor had ordered ambulance transport (never mind that it did not appear). Luckily, I had a young male helper with me and between the two of us, we managed to get Nicholas home by early evening without any tears.

  I had transformed our family room into Nick’s home hospital. I had his hospital bed positioned in front of the television and had managed to coerce the homecare authorities into providing seven nights of nursing. Our helper stayed with Nick while I headed out to the twenty-four-hour pharmacy to collect prescriptions for liquid codeine and muscle relaxants to ease the postoperative spasms that are severe in children with cerebral palsy. The pharmacist had the painkiller in stock, but said that he would order the muscle relaxants and have them by the morning. I thought we could manage with just the painkiller and besides, I thought, I had no choice.

  When I arrived home, Nicholas was screaming and in full body spasm. A young nurse had arrived and as I was trying to soothe Nick, she emptied a syringe of codeine into his feeding tube. I heard the front door open — it was Jim coming home from work. He asked the nurse to move her car so he could park his to one side in the driveway. Parking behind the nurse would have meant getting up at 6 a.m., the end of her shift, something Jim didn’t want to do. The van was safely in the garage. That night, there was a severe weather warning for heavy snow — the wind had come up and the air outside was white already, the visibility poor.

  Watching Nicholas writhe and scream was intolerable, so I decided to call the hospital surgical ward and request that they give me some muscle relaxant medicine to help us through the night. They agreed to leave some at the emergency room desk. I grabbed the car keys, jumped into the van, clicked open the electric garage door and reversed down the driveway. I crashed hard into something, I couldn’t see what. Metal was twisted and I hardly dared look at the back of our van. There, in the middle of the driveway was a low white sports car, obscured in the snowstorm. It was the nurse’s car. She had moved it to make room for Jim to park his Subaru on the right side of the drive. Shaking, I went back in to face the nurse and Jim. “I hit your car,” I stated evenly. The nurse asked me to repeat what I said. “You’ll have to pay” was her response. I told her to move her car as I brushed Jim aside and went back to the van. I drove slowly, gripping the steering wheel on the highway through the storm to reach the hospital. Finally, I got the vials of medicine and returned home to find Nick had fallen asleep, exhausted.

  The surgery held for two years, until Nicholas’ hip dislocated again.

  I did not think that any nightmare could be worse than the bleak time after Nick’s first hip surgery, but I was wrong. In 2003, when Nicholas began to show signs of pain again and the x-ray showed that his hip had begun to come out of the socket a second time, I asked our surgeon about treatment options. His response was that a second major repair was out of the question. A fused hip would either condemn him to a sitting position for the rest of his life, or a lying position. The only option, the surgeon advised, was removing the ball of the joint altogether. It sounded horrendous to me — akin to cutting off a limb. It seemed too violent. Another young lad called Shane who was paralyzed with spina bifida had gone through the procedure and he reported feeling better — his hip was pain free and because he didn’t stand or walk, he didn’t miss the ball of his joint at all.

  Still, I felt a sense of dread. Nicholas’ x-rays were sent off to the Shriner’s Hospital in Montreal for a second opinion. The specialist orthopaedic surgeons there reported back their recommendation to go ahead with the operation. There was nothing else for it — Jim and I decided to go ahead with the surgery. Signing the consent form felt like giving permission for Nick’s execution.

  Nicholas came through the surgery all right. He did have a small bout of e-coli blood poisoning, but that was dealt with quite easily with antibiotics. The pain was tolerable and he was discharged to the Rotary Home, a respite facility for children with physical disabilities that did double duty as an inpatient rehab facility for the kids in our community. I stayed there with Nick by day and went home in time for dinner with Jim and Natalie. It all seemed relatively fine, especially compared to the events that followed the first surgery. Fine, that is, until the cast came off.

  Our surgeon was away the day that Nick was scheduled for cast removal, and he had asked me if I preferred to wait until he returned to work the following day. I was feeling confident and hopeful, so I declined his offer and brought Nicholas to be seen by two younger doctors. They began to saw open the cast. About halfway down Nick’s leg, he suddenly spasmed terribly and screamed. It was obvious that he was in agony. One of the doctors called for Valium, but it had no effect. Finally, they administered ketamine, a powerful anaesthetic, and admitted him to hospital. Later, I would learn that Nick’s spasticity caused the femur to migrate upwards into the pelvic bone. Removing the cast triggered a spasm that caused the pain. The pain caused more spasm, which caused more pain. It was excruciating to witness; I can’t begin to imagine what Nick must have felt.

  Nicholas was given morphine and muscle relaxants until we were finally able to return home on a slow release version of the narcotic and a higher dose of the medication to prevent spasms. Slowly the surgical scar healed, but Nicholas was still in pain and much less active than he had been just a couple of years before. I still thought of him as part of the ski club (where he raced downhill in a sit-ski), as a keen pickup hockey player and as the sports reporter for his school newspaper.

  I felt frantic, trying to convince everyone at the hospital that he was still capable of all these things. His active life couldn’t be over, not yet. Our surgeon was kind and gentle, but he had exhausted all of his options and we were in deep trouble. We consulted the pediatric pain team and were given some other medications to try — this time powerful anti-inflammatories. One doctor on the team suggested that we try nerve blocks and I was keen to give them a go. In the operating room, we were told, Nicholas would be given a light sedation, and his major nerves that fed the hip would be isolated by probing with a tiny catheter emitting a small electrical charge.

  When the probe made contact with the nerve, Nick’s muscle would twitch visibly and the doctor would know it was in the correct location. Then, he would inject the catheter with a small amount of drug to temporarily paralyze the nerve. The idea was twofold: to see if that was the nerve causing the pain, and also to investigate whether perhaps with a day or two of pain relief, the pain would disappear for good or at least return in a lesser form.

  The doctor explained that sometimes by silencing the pain for a short period, the body and mind might “forget” how bad it was and a new, milder form of discomfort might return.

  We tried many, many of these blocks on all the nerves feeding Nicholas’ hip. Finally, it was decided to inject Nick’s hip and spine with phenol to permanently kill the lumbar plexus, the femoral, obturator and sciatic nerves. I was warned that there was a small chance of a painful neuralgia resulting from these injections — a pain that could be worse than the pre-existing one. I ignored the warnings and signed the consent form eagerly, as I prayed for our boy to be the active, happy child he once was. The phenol killed the nerve roots but burnt and damaged the nerve branches extending into his right foot, causing permanent searing pain. Unwittingly, we had spiralled into a situation that was out of control.

  By now, Nicholas was understandably phobic about doctors and hospitals. If he heard me speaking on the telephone about his pain or other medical issues, he would become very angry. Though nonverbal, I knew perfectly well what Nick was saying: “Get off the phone! Quit talking about me! I’m not going to the hospital so just shut up!” In the presence of others, especially medical professionals, Nicholas used all of his energy to feign wellness. In the safety of home, he stopped eating, he cried, he screamed, he constantly asked for a sock to cover his painful foot, only to have it removed and then put on again.

  One evening, I looked at his foot an
d noticed that it looked swollen, the skin a mottled purplish colour. I began to fear that perhaps the blood flow had been cut off for some reason…a blood clot perhaps? I decided to rely on the kindness of neighbours. Alan, who lived at the end of our street, was an internist at the adult hospital in Ottawa. He knew Nick from our walks in the park and his black lab Buddy was a friend of our golden retriever Goldie. Alan came into Nick’s room and peered at his foot. He placed his hand around Nicholas’ ankle, explaining that a good pulse there meant no blood clot. The pulse was indeed strong, so I put that particular worry out of my head. Still, it felt somehow more hopeless that no blood clot meant no explanation and no excision of whatever horrible poison was causing Nick so much pain. We were caught in a vortex of agony and sleeplessness.

  Lawrence Becker, an American moral philosopher who has written extensively on disability, talks about the caregiver’s responsibility to support the conception of good in the patient.25 I felt driven to support the good in Nicholas by not abandoning the hope of recapturing the person he was before his pain. To do so, I felt, was a betrayal not only of his future, but his entire person and his “being.” Many drugs and treatments had been tried and failed. Now, doctors on the pain team advised me to “adjust his lifestyle.” I took that to mean leaving him in bed where he was most comfortable. Nicholas was sixteen years old, and I could not accept that his life as we knew it was effectively over.

  A second opinion at two specialist hospitals in Montreal was arranged. Perhaps they had seen another child with no hip joint and failed permanent nerve blocks. At the Shriner’s Orthopaedic Hospital, a young, bearded doctor shook his head sadly at Nicholas as he tutted. I thought I hadn’t heard him correctly when he said, “We no longer recommend these surgical procedures in cases like your son, with cerebral palsy.” Only eight months before, this doctor’s colleagues at his hospital had given the second opinion to remove the ball of Nicholas’ hip joint, and now this doctor was saying that they no longer recommended this procedure? I was stunned. There was nothing they could do to help Nicholas now.