The Four Walls of My Freedom (9 page)

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 and 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.
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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.

At the next hospital, the doctor nodded knowingly as I recounted our history. “Ah yes,” he said, “we have children like your son who have had phenol blocks after hip surgeries living in our long term-care hospital here.”

“How are they doing?” I asked.

“Not good” was his quiet reply.

We returned to Ottawa and I began to plan for an in-patient stay at another children's hospital in Montreal. Perhaps the chronic pain team there could offer up new eyes and new ideas.

The Injustice of Pain

By 2004, the situation was unmanageable at home. Nicholas screamed at night — Jim or I would get up every forty-five minutes or so to reposition him or to give him pain medication. Many times I called the hospital in the night, asking to speak with the pain doctor on call. In hospitals, pain management falls within the department of anaesthesia. Sometimes the anaesthetists “do pain” and sometimes they only practise their craft in operating rooms, putting patients to sleep safely. More than once, when I frantically called doctors on that team to say that I had given the maximum allowed dose of morphine, but that Nick was still in terrible distress, the response was “Sorry, I don't do pain.”

Some months earlier, I had applied to a children's wish foundation for Nicholas. Nick was a great fan of professional wrestling, and his fondest wish was to meet Stone Cold Steve Austin of the
WWE
. One day, someone from the Sunshine Foundation called to say that Nicholas' name had come up and he was to be given his wish to meet his hero. The closest location to meet Stone Cold was at a performance in New Jersey. Nicholas was over the moon with excitement and I desperately wanted to give him some wonderful pleasure to counter his pain. But I worried about the travel and how he could cope with the journey. In the end, I decided to make the quick trip for the meeting with Stone Cold, together with Natalie and a helper for Nicholas. So, on March 15, 2004, we managed the short flight to Newark , picked up a rental wheelchair van at the airport and found our hotel. Nicholas was pale, but managing all right and was very excited. He rested awhile in bed before we walked across the street to the stadium where we were introduced to “Mr. Stone Cold” and other stars of the World Wrestling Entertainment. They were all gracious and generous with their offers of photos and merchandise. Nicholas and Natalie had prepared a large poster board by way of an invitation to visit our family at the cottage on a lake in the Quebec Laurentians. There were photos together with a note that read “Dear Stone Cold, you are invited to visit at the cottage where we go fishing, drink beer and smoke cigars with my dad and the boys. You would fit right in!” Stone Cold (Steve Williams) was delighted with his invitation and with our gift of maple syrup. After our visit with the
WWE
stars, we returned to the hotel where Nicholas had another lie-down and I asked him whether he wished to attend the show in the evening. He was trying very hard to enjoy his “wish come true” and he said yes, he wanted to attend the show. We went to half of the show, returned to the hotel and packed for an early morning flight to Montreal, where we would be admitted to the children's hospital there for pain assessment.

The next day, my sister Karen met us at the Montreal airport and soon we were admitted to the hospital. Nicholas was exhausted and in pain. When Nick is excited, his muscles stiffen — his legs extend and move as if he's cycling in air. His back arches and his grin is something to behold. Now he was paying the price for his trip of a lifetime. A morphine infusion pump was started and therapists were consulted. The narcotic caused Nicholas to be nauseated and he began to retch. The spasms of heaving caused even more pain, and suddenly I noticed that something looking like coffee grounds was coming out of his feeding tube. Blood! Nicholas was bleeding internally and the doctors were called. They started him on an IV of a strong antacid and eventually he settled. I wondered if this hell would ever end.

Several years earlier, on October 24, 1993, a Saskatchewan farmer called Robert Latimer murdered his daughter, Tracy. Tracy Latimer had very similar disabilities to Nicholas', including hip pain resulting from cerebral palsy. Robert Latimer, unable to witness Tracy's pain and suffering, lifted her into the front seat of his pickup truck and connected the exhaust pipe to the cab. Tracy died and the public's heart went out to her loving father. Robert Latimer was charged with second-degree murder and was eventually given the mandatory minimum sentence of ten years in jail. But the court of public opinion held differently. By January 1995, seven thousand Canadians had signed a petition to free Latimer and ten thousand more petitions were in circulation. By late November 1997, more than $100,000 had been raised in a legal defence fund. In a
CBC
Radio interview, Latimer famously commented, “I honestly don't believe there was ever any crime committed here.”

Like me, Robert Latimer felt compelled to defend his child's capability to be pain free. Yet our parental perspectives on how to achieve this were light years apart. Recently, I had a conversation with a distinguished physician from the Harvard University medical centres. When I described to him all of the surgical procedures Nicholas has had and their sometimes disastrous results, he asked, “Don't you feel sometimes that you are torturing him?” The answer to that question is not straightforward. I felt on a mission to get back a life with Nicholas that we had once enjoyed — a life for him that meant fun, activity and inclusion in his school, his family and his community. I was determined not to give up on Nicholas and a future good life for him.

In hindsight, I know that I expected too much of doctors and hospitals. At each round of nerve blocks, I believed that Nicholas would wake up pain free. When the doctors explained that the blocks would “kill the nerves,” I assumed that that meant Nicholas would be numb in his hip. When he experienced the jabs of pain that made him flinch when I lifted him out of his chair, I thought the procedure had failed. As ever, Nicholas was most comfortable lying in bed. Sitting in his wheelchair over long periods caused him great discomfort. Sitting through a class at school, for example, became impossible.

Because Nicholas still had pain, I kept begging the doctors to try other procedures. I wasn't ready to give up on an active future for Nicholas and I didn't understand that nerve blocks are only ever a partial fix. The doctors would enter Nick's hospital room where he would be lying still in bed, comfortable and smiling. When I complained again and again that Nicholas still had pain in sitting and especially when I lifted him out of bed, they could not or would not believe it. My credibility at the hospital plummeted to zero and a psychologist was called in to speak to Nicholas without me present. I was caught up in some vortex of misunderstanding and I knew that I was branded as difficult and possibly crazy by the only people who could help Nicholas. I felt desperate.

By 2005, Nick was spending most of his time learning from the bed in his high school's nursing room. Back in January 2001, I had written a letter to the editor of the Ottawa newspaper supporting the Supreme Court of Canada's ruling on Robert Latimer's sentence. I believe that the public would have reacted very differently if Tracy Latimer had been able-bodied, or if she had been suffering from the effects of cancer, for example. It seemed evident to me that because many people were repulsed by the awfulness of giving total care to someone as disabled as Tracy, they assuaged their guilt by supporting Robert Latimer — exalting him, even. People who supported Robert Latimer were so afraid of dependency that they were pleased to erase the evidence of it.

It's not that I don't question the pain and suffering I caused Nicholas by choosing major surgeries. I do. Many times, I was racked with guilt when he woke in the recovery room and I saw pain, pleading and panic in his eyes. But I am essentially an optimist. I always believed that we could do better, that Nicholas could beat his disability and that pure determination together with dogged research could win out over a stance of resignation. So it came as a great blow to me when each surgery, each intervention seemed to unleash some new horror. Applying the Capability Approach in this instance, where pain was Nicholas' injustice to be removed, who could have predicted the fallout of more pain and injustice, especially in the face of so much energy and knowledge? Removal of an injustice that some might argue is part of nature's way had frightening consequences for us.

Now, I no longer hope for a future full of active verbs for Nicholas. I have accepted that he chooses to remain in bed almost all of his days because that is where he is most comfortable. Nicholas' capabilities of being pain free and maintaining his dignity through choice and self-direction merge in his lifestyle nowadays. The German film director Werner Herzog once made a film about people with disabilities whom, he said, “experience the world on a very reduced level, but very richly.” The riches that Nicholas enjoys are his friendships with his caregivers and with his friends and family. And belonging through friendship for someone who is homebound is different, but no less possible or vital.

One life lesson that I have learned in parenting Nicholas is that while adversity is a given in everyone's life, the choice of what to do with that adversity can spell the difference between fulfillment and misery. It is not a “Pollyanna” version of coping that I mean to describe, but rather an idea of converting life circumstances into something good. I recoil from those who seek to sell illness or disability as a “blessing” or “gift.” Disabling conditions are a fact of life — they just
are
. Nicholas and others like him are powerful ambassadors for how to live well within limits. It requires imagination and determination to live well within limits, qualities Nick has in spades. And the best aspect of Nick's life is time spent with his many loyal, kind and fun friends.

How does Nicholas assess the quality of his own daily life? Amartya Sen describes the phenomena of adaptive preferences: those choices we make in circumstances of deprivation because other choices seem outside the realm of possibility. Nicholas exercises his adaptive preferences by saying that he is no longer interested in events and activities outside of his bedroom. But Nicholas prefers to view this as anything but tragic. There may be an important game on television he doesn't want to miss, or a new computer game to try out. He chooses a series of interesting activities to pursue each day within the small sphere of his room, and he is happy. With each new blog entry, he is proud. With a delivery of personal business cards, he is excited. He is a young man with a busy agenda, good friends and big plans for the future.