WCR This Week

WCR PHOTO | GLEN ARGAN While walking the Camino to the Cathedral of St. James in Spain last fall, Dr. José Pereira became refocused and re-energized in his life.

I have given many talks over the years, but this is by far the most difficult I have had to prepare. It is relatively easy for me to put together an academic presentation on a palliative care-related topic, but it has been difficult to put to paper and to speak about something that is much more personal.

Last year on the 15th of September I attended a Mass that for me turned out to be quite extraordinary. I remember the date very well because I was on Day 15 of my Camino de Santiago de Compostela, the Way of St James, in northern Spain. Fifteen days earlier I had started walking the Camino in a small town called St. Jean-Pied-de-Port, on the French side of the Pyrenee Mountains.

The Camino, as some of you know, is a pilgrimage route that crosses northern Spain and ends in the city of Santiago de Compostela in the northwestern corner of Spain. It dates back to medieval times and there are several starting points in Spain, France and Portugal.

The most traditional route however is called the French Camino, which starts in St. Jean-Pied-de-Port on the French side of the Pyrenee Mountains that divide Spain and France. The first two days is spent crossing the Pyrenees into Spain. Seven hundred and eighty km and about 30 to 40 days later, in my case 30 days, one arrives in Santiago. It is a journey that for many, including myself, is life-changing and, as I have discovered, becomes a reference point for living one's life.

On the eve before starting the Camino I visited the pilgrims office in St. Jean Pied de Port, accompanied by a friend, Carlos Centeno, who would be my travelling companion for the next four days before he had to leave to return to work. We wanted to register, pick up our scallop shell (the symbol of being on the Camino), and, most importantly, get some more information about the route and where to stay.

I had decided not to do too much reading or preparation beforehand; I wanted to be open to whatever lay ahead. I thought that a fixed itinerary would be too restrictive. A friendly volunteer at the office asked us to complete a survey. "Why are you doing the Camino?" she asked.

FOUR CHOICES

There were four choices and one could select from the following options: a) for religious reasons; b) for spiritual reasons; c) for cultural reasons; and d) for sports. I was not sure what to answer.

I hesitated and looked at Carlos. He smiled, and in his usual effervescent and joyous way, said, without hesitating, "Religious". Carlos is a palliative care physician and professor of palliative medicine like myself and lives in Pamplona, Spain - which happens to be on the Camino route.

We have been good friends for many years. In fact, we first met when we trained in palliative care here in Edmonton in 1995. In fact, I lived here in Edmonton and worked in the world-renowned Edmonton program for a number of years. Carlos has over the years visited Edmonton on numerous occasions and knows it well.

My hesitation in answering the question was a reflection of my spiritual journey or, rather, the lack thereof. For the preceding 15 years or so I had become increasingly removed from religion and the Church. I had stopped attending Mass on a regular basis and became rather cynical about some of the rituals and sacraments.

I had become skeptical about the role of religion in general; extreme or fanatical interpretations of it have, and continue to be, I think, at the source of considerable suffering in this world.

CATHOLIC CHILDHOOD

This was a big turnaround for me. I had grown up in a very Catholic home in South Africa; my parents had emigrated there from Portugal in the late 1950s. We often prayed the rosary together as a family when I was a child.

I attended Catholic schools, including high school with the Christian Brothers in South Africa. Although one or two of the brothers were not as gentle as Christ would have expected, there were others who were kind and nurturing teachers, and overall I had a very good education experience with the brothers.

I remember as a young teenager, one of them, Brother McInerny, had given the following advice: "If you want to be happy in life, make sure that you do something with your life that involves helping others." Up to that point I was very undecided as to what I wanted to be when I left school. Guided by that advice, I prayed that I would be guided in that direction.

I remember that it was during a visit with my family to Fatima in Portugal when I was 16 years old, that, while praying at the chapel of the apparitions, that I came to the decision to be a physician. I have never regretted that decision.

STRAIGHTFORWARD QUESTION

So it was that, on the eve of starting the Camino, I stood in the pilgrims office trying to answer the question "Why are you doing the Camino?" It sounded like a pretty straightforward question. You would expect that by then I would have been able to answer just as easy as Carlos.

But there I stood; mixed feelings about religion and my faith, not sure about what I was looking for but aware that I felt an emptiness deep in me (despite a wonderful loving family and a successful career). I felt tired and exhausted from a busy clinical and academic life; the pressures of combining clinical work with heavy administrative and academic responsibilities. I needed space and time to reflect, refocus, realign, reconnect and rediscover who I really was and where I was going. Somehow the Camino seemed the right thing to do.

A hiker climbs the stairs that lead to the village of Portomarin, Spain, a main landmark on the Camino de Santiago de Compostela.

I did answer the question. My response was: "None of the above, I came to lose weight," I said. Carlos looked at me and started laughing. He knew I was buying time. The French volunteer, on the other hand, looked quite shocked.

I must add here, for those of you who have seen the recent movie about the Camino, called The Way that one of the characters admits he is doing the Camino to lose weight. I did not steal that idea from him because I only became aware of the movie after I had completed the Camino.

We stepped outside of the office, better prepared with a basic route map, our credencial or Camino Passport (which one has to stamp daily along the way as proof of completing the Camino), and information on accommodations along the way.

We looked up at the mountains we were to climb the next day. They looked steep and foreboding. I turned to Carlos and said: "It is going to be difficult." At that moment, a woman who was walking by us carrying a shopping bag, stopped, turned to us and said in French: "The Camino is difficult. That we all know. But more importantly, it is about humility." Then she walked on.

I don't think I truly understood what she said but time was soon to prove her right.

At the end of the first day when we arrived at our hostel for the night, I found no blisters on my feet. I looked around and saw many of the pilgrims with awful blisters. I, rather smugly and arrogantly, thought to myself "Excellent, blisters will not be a problem for me." By the end of the fourth day, I had eight large painful blisters. Most stayed with me until the end.

On the third morning, as Carlos and I started walking for the day, we saw two pilgrims whom we had met the previous day. As an aside, no matter what one's motives for walking the Camino are, or what one's beliefs are, one is called a pelegrino or pilgrim when you are on the Camino. They looked despondent and said that because of very painful knees they were not going to walk that day.

We bid them farewell and walked on. I told Carlos something to the effect that "They should have trained more before coming and how fortunate we are not to have knee problems."

Within an hour I was limping with a painful knee. The knee remained a problem until the last day of my Camino. In fact, on the 23rd day, I even had to eat humble pie and catch a taxi to allow me to finish the day because of the knee.

The Camino did not disappoint in terms of time to think, reflect and search inward; un-spoilt by emails, pagers, beepers, urgent telephone calls and new priorities. It is difficult to walk 780 km, often alone, sometimes in the dark, sometimes in the heat of the day, step after step after step after step, after endless step, and not think and reflect.

QUESTIONS

Carlos was a wonderful companion. We spoke about the Church and religion, openly and candidly. I expressed my reservations and shared my questions about the Church and religion. Carlos in turn asked me questions that made me go inwards and shared with me his own thoughts.

You see, Carlos is a man of great faith. He is a member of Opus Dei and lives in community. Yet, Carlos does not impose it on anyone. He exudes love and joy in everything he does. He is a wonderful compassionate physician; I have seen him with patients and families - and a remarkable academic and colleague.

Sometimes we chatted while walking, other times while taking a rest along a mountain stream or in a pub; I often joke that the Camino is one large pub crawl - because it is in the pubs along the way that one often rests, has a drink and a sandwich or snack.

We reflected on our work as palliative care physicians. Contrary to what many people may think, it is not filled only with pain, burden and suffering. Yes, there are many moments of sadness and suffering, but there are many moments of joy, celebration, comfort and dignity.

I remember a time, while working here in Alberta, when I had to hold a four-year old girl in my arms while her father hugged her mother who was dying of breast cancer. They had asked me and our chaplain to tell the little girl that mom was dying.

I will never forget what the patient said to her little daughter: "Mom will be okay. I am going to be with Jesus. But I will always be with you. You will hear me speaking to you when the wind blows through the leaves and you will see me every spring when the flowers bloom."

The husband kept asking us "Why? Why? She is still so young?" I had no answer, but listened.

ABSENCE OF MEANING

In caring for the dying we are confronted with many questions. Some of them we have no answers for. As Rilke once said, "We need to learn to live the question." I am speaking here in particular about spiritual suffering - or what is now more often referred to as "existential suffering" - the suffering that relates to the absence of meaning and the journey to find that meaning at the end of our lives.

Sometimes these are intermingled with physical pain and it is sometimes difficult for us as palliative care professionals to discern between the physical, social, psychological and spiritual sources of pain.

We need to learn to accompany, sometimes quietly without saying anything (particularly when we do not have the answers), and sometimes bringing to bear all the knowledge and expertise that we have to alleviate pain and other symptoms as well as other sources of suffering.

In fact, over the last decade or two, there have been many advances in palliative care and these advances need to be diffused broadly through education of health professionals and the public. Importantly, as a society, we need to start speaking more honestly and openly about living and dying, so that we are better prepared and make better decisions at the end of life.

When was the last time you sat down over a beer and over dinner or lunch and shared as a family what your wishes would be if you were to be diagnosed with a terminal illness? Do not be afraid of using the word "palliative." There are some who say we should change the name to reduce the fear that it provokes in some.

I would argue that if we change the name we will be back here in a decade trying to change that new name. It is not in the name, it is in the subject and we need to do a better job in talking about it. However, in talking about it, we will ask the question how can we live better lives.

In talking about this, perhaps we as a society will also start becoming more attentive to the sense of burden or social isolation that some people feel at the end of life; and in becoming more sensitive to it, we can start finding better ways of addressing these needs without having to resort to euthanasia.

Caring for or accompanying the dying, whether it be as a physician or nurse, family member or friend, or as a volunteer, is a great privilege. Over the years I have learned a lot from the patients and families I have cared for. Many have taught me about life and some have become mentors for me for when my time comes. I am less afraid of dying now, I think.

One of our colleagues is living that right now. He has has been a mentor to me and to others in our program and a few weeks ago he was diagnosed with terminal pancreatic cancer himself. He was recently telling me how difficult it is to be told one is dying, and it always seems to be too soon. But, he said, I know I don't have to be afraid.

As Carlos and I reflected on our work caring for the dying, we shared how it has brought purpose and meaning to our lives, it has allowed us to live the Peace Prayer of St Francis of Assisi, the same saint who centuries before had also walked the Camino de Santiago; "Lord, make me an instrument of thy peace and love, where there is suffering, let me bring healing."

So the Camino continued. At times my nine-kilogram backpack seemed heavier as my thoughts took me to the parts of my life that I have been less proud of - the opportunities lost, the times when I could have loved better and did not. I also laughed about my most embarrassing moments.

However, God, through the Camino, provided opportunities for healing and growth. I found myself writing letters (which I subsequently mailed) to people that over the years I have disappointed; a colleague who has always been very supportive but whom I had not made the time to thank; the friend who had asked me to prepare a reference for but whom I had ignored; a grandmother whom I had not loved as much as I should have (but she had died many years ago so I could not post that letter).

I found myself accompanying a wonderful 74-year-old man who was doing the Camino alone. It felt like my grandmother had come back to say: Here is your chance; journey with him, learn from him and care for him as well.

FIFTEENTH DAY

And so it was that on the 15th day, I attended Mass in a small town called Carrion de los Condos. I had started attending Mass again along the way. I had actually started looking forward to attending Mass and popping in to chapels and churches along the way for a moment of silence, prayer and reflection.

I found myself finding the Masses as an opportunity to express my gratitude for the blessings God has bestowed on me; my wonderful supportive and loving wife Odete and my children - Xavier who is 15 years old and Ciara who is 13; my family, my friends, my colleagues, my career.

But this Mass in Carrion de los Condos was different, because the priest, a young man called Father Alberto, said: "God does not ask you to be perfect and the best, he simply asks you to keep trying to be the best." This really resonated in me.

At that moment so much of the guilt that had been carrying over the years, my own disappointments in myself, my failings, left me. The next day my backpack felt half its weight. My pains were still there but they seemed less menacing. I still often think of that - "God simply wants you to keep trying." How human and how enlightening I thought.

Then there was the Mass at Triacastela, on Day 24. There were about 50 or so pilgrims that attended Mass in the small church that evening. The priest, an elderly but charismatic man, gently nudged us all to join him around the altar. He then gave us all, in our respective languages, a document to read and reflect on. This he said was his sermon.

A milestone with the St. James shell on it shows that you are on the right path on the Camino de Santiago.

As we did this he walked around and blessed us. There is some of what it said: Every human being needs to seek and to find their place in this world . . . a human journey of searching and finding (the pilgrimage to Santiago):

It is never too late for a personal meeting with Christ.

It is never too late for joy.

It is never too late to smile.

It is never too late to share joy.

It is never too late to find.

It is never too late to reflect.

It is never too late, however late it be, to begin.

It is never too late to discover yourself.

It is never too late to learn to live truly, in truth.

It is never too late for anything, especially to love and to feel Christ.

WALKING ON EARTH

It reminded me of an exhibit by a poet and photographer called Mau Mariani that I had visited several days before along the Camino. He had written: "The miracle is not to fly or walk on water, but walk on earth."

He also cautioned pilgrims: "This exhibit of pilgrims on the Camino is a cautionary note to pilgrims who will go home feeling distressed because they believe to have left behind a very special world, that the Camino is not a bubble isolated from real life. We are the Camino, and it depends - exclusively - on each one of us to extend all the things we experience here to our everyday lives."

By the time I arrived in Santiago, I had come to the realization that life is the Camino. It is our everyday lives. The Camino de Santiago is an allegory of our lives. It provides an opportunity to step out of our lives, our real Camino, to reflect and become re-energized and refocused.

I thought of all the people I had seen on the Camino going on with their everyday lives - the mother taking her child to school, the farmer harvesting the crops and the winemaker, the bartender and the street cleaner. Those were the real people of the Camino. We were simply observers, given the privilege to reflect.

POOR BUT CONTENT

I think of the young family that I came upon in the hills of Galicia in northwestern Spain. There was a father, shoulder-to-shoulder with his young teenage son (who seemed very similar to my son's age and stature), tilling the soil of their small farm. A few metres to their side was the mother and her daughter, embraced in laughter and sorting through the crop just harvested. They seemed poor but content. That is the real Camino.

When I arrived in Santiago de Compostela, I and the new companions I had met along the way, went to the pilgrims office to get our certificate. Again I was asked; "Why did you do the Camino?" This time I said: "All of the above, but above all, for religious reasons."

The next day I attended the Pilgrims Mass at the Cathedral of Santiago de Compostela. There were hundreds of pilgrims, celebrating life, new-found friends, new meaning in life. This time communion had, and continues to now have, a richer meaning than it has ever had before for me. I even attended Confession. That turned out to be a funny experience, but that story I will have to tell another day.