Oliver Sacks is the Jane Goodall of neurology. He has spent his entire  professional career observing patients, dutifully recording in his notebooks, and publishing reports of his findings that illuminate how the mind works. Most of his published work tells personal stories of patient experiences. Most notably there is ‘The Man Who Mistook his Wife for a Hat’ (a man with visual agnosia) and ‘An Anthropologist on Mars’ (perceptions of people with autism).

In this TED Talk, Oliver Sacks explains Charles-Bonnet Syndrome –  a hallucination syndrome experienced by people who lose their vision. I was surprised to learn that up to 10% of people with vision loss experience Charles-Bonnet hallucinations, but only 1% of them report it because they are afraid of people assuming they  are going insane (which they are not).

Check it out, it’s fascinating:

Sometimes I feel burned out. Often, I get overwhelmed. Seems natural, right? Especially given the bullet-spray of unfinishable tasks that Medical Schools like to pump at you. There are days that I wind up in a despairing mess, feeling like I just got the beating of an enraged sumo-wrestler (okay… maybe that’s a very melodramatic way of describing it, but you get the idea).

I’ve found someone who claims to have the cure…

This evening, Queen’s was honoured to host the infamous Dr. Patch Adams as speaker to the H.G. Kelly lecture series. In addition to starting the ‘Gesundheit!’ Institute, Dr. Adams has an inspiring philosophy on health-care, and human-care in general. Even after journeying to the bedsides of some of the world’s most tortured and anguishing individuals, Patch claims that he never feels despair or gets burned out… because he chooses to LOVE caring.

In his speech, entitled ‘The Joy of Caring’, Patch gave seven reasons why the act of caring energizes him and prevents him from burning out. Sadly, I only remember five… nonetheless:

1. He loves people.
2. The job of caring provides opportunities to show love.
3. Good karma: caring is reciprocal.
4. Caring allows you to be outrageously enthusiastic.
5. Caring is good for your health.

What struck me after listening to Patch speak, was that this Medical School business is really only the first, least-important step. Maybe I shouldn’t make the major issue of becoming a doctor centre around school -learning facts about diseases, and practising how to act in the manner of how doctors “should act”. Of course those are both important steps, but they are really only a small mandatory hurdle before I must start the real task before me: learning how to care.

Watched an insightful movie this morning (yes – a movie in class!) about a young woman living with a rare, slow-growing metastatic cancer. This movie comes highly recommended for a real, in-your-face perspective on how having cancer can change your life.

Watch the trailer:

On Friday we had the opportunity to visit with a Palliative patient in their home. We spent some time hearing their story, and asking questions. Afterwards, we were encouraged to right a short reflection on the experience and how it impacted us. I’ve decided to share what I wrote here, as a storage place for that reflection, and as a means to tell other people about the experience.

Before our visit with Mr. C, my beliefs and expectations of Palliative care had already been challenged in the classroom. Our instructor had illustrated the distinction between curing and healing, and addressed the concept of a good death. These were new ideas personally, but ones that resonated with my desire to see the person behind the patient, and to at least acknowledge all aspects of their well-being, not just the physical. When speaking with Mr. C, many of these learning points from the classroom were enlivened by his individual story.

In particular, one aspect of Mr. C’s story that surprised me was the comfort he seemed to have with talking about his own death. I had expected him to be more reserved, either because of personal difficulty with the topic, or because he would not want to burden us with such weighty, personal matters. But to Mr. C, it seemed that they were neither weighty nor personal. He talked about his expectations for death with language and an attitude that normalized the event.

Mr. C told us about his work as manager of a golf course. He had spent a considerable segment of his life outdoors, and felt a distinct attachment to the natural world. He described how, over many years, he had observed life, death, and changing seasons in nature around him. He explained that he saw his death as a natural progression – the expected, and rightful last consequence of leading a human life. I was impacted by the normalizing effect that this philosophy had on my own understanding of death.

One benefit of this normalization, I found, was that it “freed us up” to consider the more practical aspects of Mr. C’s health. With much of the psychological baggage removed from our perception death, there was more room for the consideration of life. I was reminded of another distinction that our instructor had made: that Palliative care is not caring for someone who is dying, but rather caring for someone who is living with a disease that they will likely die from. We spent most of the remaining conversation discussing Mr. C’s hopes, expectations, and concerns for living.

I’m grateful to Mr. C for sharing his story with us, and for contributing to the foundation of awareness we are receiving in this Palliative care unit. I expect that I will encounter patients who have different perspectives on death, some considerably less normalizing than Mr. C’s. No doubt, I will be challenged by that, but I’m fortunate to have gained an insight into one possible understanding of death, and one person’s approach to living with that understanding.

Why do bad things happen to good people? It’s a question that I’ve heard thrown around a lot, to the point that it’s become a sour cliche. From my privileged, charmed perspective, the question only ever had theoretical relevance; it was a scientific wondering about the physics of cosmic justice. For the first time, I asked this same question today in a different way.

This afternoon I met with four patients who have been living with chronic illness. Each of them had a remarkable story to tell: of fear and courage, pain and comfort, dehumanization and dignity. They struggle with illness every day, every hour – whether it’s giving themselves insulin injections after meals, or spending three mornings per week in the hospital for dialysis, or living in constant fear of a tumour spreading. The patients that I met were amazingly resilient, and had developed methods to cope. But each of them had needed to adjust their expectations for their own lives. Especially with regards to work, diet, and partners.

Our objective this afternoon was to develop an appreciation for “illness” – the patient’s perceptions and experiences of disease. Everybody experiences disease differently, and it’s important to place disease within the context of a patient’s worldview and values. An overriding message from the patients today was that physicians often fail to do that. We don’t hear their stories; their explanations for why they suffer and how their illness fits into their overall story.

And illness can re-paint everything about people’s stories. It can change how they feel about themselves and their self-worth. It can bring crushing stigma upon them. It can test their relationships, sometimes beyond breaking point.

So I left asking, why do such illnesses happen to such people? And this time it was a question of despairing uncertainty. How can such injustice exist? Why do some people have to suffer so much in this life? Why do I have so many free choices about my life, while others have few?