The Four Walls of My Freedom Read online

  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.

  CHAPTER TWELVE

  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, w
here 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.

  CHAPTER THIRTEEN

  Learning and Belonging

  A sense of belonging is a powerful ingredient of wellbeing. Jim and I have positioned our family in the company of supportive family and friends over the years, but strangers have sometimes been cruel. Once, after a particularly painful procedure at Great Ormond St. Hospital in London, I took Nicholas to McDonald’s for a treat. Nicholas was about seven years old and was happy and excited to be having his meal with its plastic prize tucked in the bag between the burger and fries. I was feeding Nick as I chatted away to him, giggling about the nurse who did not understand his gesture of sticking his tongue out when she cooed innocently, “Now, that wasn’t so bad was it?” I didn’t see the waiter approach our table, but there he was, red-faced, standing beside us. “The elderly couple at the corner table have complained about you being here and feeding your son,” he said, obviously embarrassed. I looked over at these white-haired people who were glaring at us, grim-faced, angry and challenging. “They said that you shouldn’t be in a public restaurant. I am going to move them to another table. I wanted you to know in case you heard them talking. I am really, really sorry.” I looked at Nicholas who was looking particularly adorable that day, dressed in a designer outfit for the hospital visit. I took Nicholas’ hand and said in voice loud enough for the couple to hear, “Nick, those poor people have no love in their hearts. Perhaps their mummies didn’t love them enough. We need to pray for them immediately because they are very sad.” I took Nick’s hand in mine and actually bowed my head, saying a short public prayer as Nick laughed at my nerve.

  Many times I have been told that Nicholas, as a wheelchair user, represents a health and safety hazard in case of fire. On that basis, he has been barred from entering ice rinks, bowling alleys and restaurants. The times that Nicholas has been refused a place at school are too many to write about. The common refrain though, was “I am sure your son’s needs could be much better met at another school; one that has more resources.” Throughout Nicholas’ educational career, there have been wonderful successes and spectacular failures. Those welcoming schools where teachers and students celebrated Nicholas’ talents, finding ways for him to participate in every aspect of school life, lit the pathway to community belonging for our whole family.

  In 1992, when Nicholas was three and Natalie was just six months old, we moved from Ottawa to London, England. Jim had accepted the position of political director at the High Commission and we looked forward to our first international adventure with the children. For Nick, I had great hopes for Conductive Education, a therapeutic method of teaching children with movement disorders how to be functionally independent, and I knew that there was an excellent preschool in the city that specialized in these techniques — the Hornsey Centre.

  Nicholas’ arms and legs were very stiff, especially when he was excited. He had no purposeful movement of any kind. He would arch his head and trunk backwards and could not, for example, sit independently without falling. Having sampled Conductive Education in Ottawa with our therapist Rosalind, I knew that proponents of the system frowned upon the usual assistive devices, such as wheelchairs, preferring to use simple wooden furniture with lots of built-in grab bars. I arrived at the Hornsey Centre with three goals for Nicholas: to sit independently, to play with a toy by himself and to transfer without assistance from a chair to another seat nearby. In his two years at the centre, Nicholas never actually achieved any of these goals, although he did make some progress in the sitting department. He learned to hold a drinking cup and feed himself a sandwich, albeit with lots of messy spills. I loved the idea of Conductive Education because I believed in the power of learning to overcome not only ignorance, but disability. It spoke to the strong determination to do with intellect and willpower that I was sure could be inspired in Nicholas. At that time, I still suffered from the delusion that my will could overcome the powers of nature that drove Nick’s limbs to be stiff and dysfunctional. I couldn’t accept that no therapy, surgery or equipment could halt the twisting of Nick’s spine or the tightening of his muscles.

  The Hornsey Centre was boot camp for kids with cerebral palsy. The staff weren’t rude, but they were results-oriented and Nicholas looked like a difficult case. The best students were those with athetoid or ataxic cerebral palsy, those for whom balance and uncontrolled movements were more problematic. For them, learning to rely on grab bars to achieve independent mobility and to perform other basic functions of daily life was achievable and constituted a real reason to celebrate a hopeful future. Parents who had just one child and were able to incorporate rigorous practice of the method at home were championed by the school administration. One evening, I decided to attend a parent meeting to view a home movie made by one young mother. The principal introduced the film as a fine example of what all parents should do with their child at home. We all watched her little girl being coaxed by her parents to incorporate her school learning into each part of her day at home. “Say with me Sarah, I lift my left arm up. Up…up…up.” In went Sarah’s left arm into the shirt sleeve. “Now hold your sock and pull. Hold…hold..hold. Pull…pull…pull.” Sarah pulled up her socks. Outside in the park, Sarah was shown peddling her own tricycle, later at home, feeding herself a biscuit. In the bathroom, she brushed her teeth as she sang, “Brush your dirty teeth, brush your dirty teeth, brush your dirty, brush your dirty, brush your dirty teeth!” I always thought “dirty” was an odd adjective for teeth, but eventually I became so used to this tune that the up and down movements associated with the song became second nature to everyone in my family.

/>   As I watched the film, my cheeks began to burn and my chest felt tight. As the film ended, the centre’s director stood and thanked the young mother. Then she turned to the rest of us and said, “This is an excellent example of what can be done if one is determined to do the work and implement at home what your children are learning at school. Your children’s progress is up to you.”

  I was furious. I felt threatened, defensive and humiliated. Just the day before, I had dropped in unannounced to peek at Nicholas from the darkened observation room with its one-way mirror. Nicola, the teacher, was trying unsuccessfully to persuade Nicholas to feed himself. His sandwich kept crushing in his palm, then falling to the floor. There was nothing left that could be held or even eaten; it was just a dense, dirty ball of squashed bread. “Nicholas is NOT doing well today.” The teacher glared at Nicholas as she made this pronouncement to her colleague, “Not well at all!”

  I opened the door and stepped into the classroom. Flustered, Nicola greeted me much too cheerily and made a show of helping Nicholas take a bite of his dessert. I began to think that perhaps Conductive Education was not the panacea to address disability that I thought it was. Andras Peto, a Hungarian innovator, had devised Conductive Education in order to teach children with disabilities in his country how to walk and perform simple, daily tasks unaided. Without these abilities, children in Hungary were excluded from attending school. A method created for reasons of belonging and inclusion was beginning to make me feel very alone. Nicholas wasn’t making progress and it felt like my fault.