I think therefore I am? – Yearning for connection

Photo by Toa Heftiba on Unsplash

What this palliative care doctor thinks:

It’s not just about language, that’s why Google translate can’t replace human interpreters at the moment. It might be able to translate the words literally from one language to another but it doesn’t yet have the cultural context of where the words came from. The history of the language has not been programmed into it. Take English for example a lot of the words we use are derived from French and other Latin-based languages. You don’t ask for sheep meat, you ask for mutton from the French mouton. Similarly beef, not cow meat, from the French boeuf. A translator program is not the same as an interpreter program. Google Interpret would have to be much more sophisticated and would need cultural programming as well as linguistic programming.

A person may be speaking Chinese, but they are also living Chinese. The food that they eat, the clothes that they wear. Rituals that they follow to celebrate life, and how they deal with death and dying are the missing parts of a person’s identity that cannot be easily translated.
The most important tool I have as a palliative care doctor is my ability to communicate. I make a point of greeting my patients in their native language as much as possible. My accented version of their language is my attempt at providing them with a hint of familiarity. In the area I work in people come from all over the world, from lots of different cultures, with over 200 different languages spoken in our area. I certainly do not know all the greetings that are available but a quick Google search can provide me with at least a few words of greeting. A little demonstration of respect that I have made the effort to try to connect with another human being. It may have taken me ten seconds to type in my query but it can often bring a smile to a weary sufferer, whose illness has taken over their body. Someone for whom English may be a second or third language. A little snippet of home, can make a real difference.

Back in the old days when we used to fly around the world I did spend some months overseas. I always preferred to fly with Air New Zealand, as stepping onto the plane you are greeted with a Gidday or a Kia Ora. This makes me feel instantly at home, hearing a fellow New Zealander speak to me in our accented English. I step on the plane and I am that much closer to my homeland. So I have thought about this in our clinical setting as well, as people are away from home, staying in a strange place, which might be scary for some people. Not knowing what they are in for as they cross our threshold, into our hospice be it the outpatient clinic or our inpatient unit. They are stepping into our place, but we want it to feel more like a shared space, that it is not such an alien experience for them. Welcome to our human space, where all kinds of people are welcome. From all sorts of countries, cultures, we are happy to receive you as you are. No matter who you are, you can be yourself here. You don’t have to be on guard. We will call you what you want us to call you.

I need to get to know you in order to help you as well as I can. I need to know you as a person. I often ask people what keeps them going? They’ve been sick, they had lots of treatments. They might’ve started their treatments with a cohort of people and some of their treatment clinic buddies may no longer be alive. What has kept you going? What has kept you, alive? Often they will talk about their families, or at least certain members of their family. You’re not supposed to have a favourite but it is completely human to do so. It might be their chosen work, for some people they have a job, others have a calling, a vocation that they have been lucky enough to find. Imagine getting paid to do what you love to do? Sounds like a dream, could be a nightmare, at times it could be both. People talk about their hobbies, the things that they are passionate about. Sculpting with clay, taking the raw material and extracting something solid and beautiful out of it. To me it looked like a lump, but in their hands it turned into this beautiful vase.

Some people like me, live to eat. Talking about food animates their eyes and mouth, you can almost visualise and smell the dishes that they are talking about. So cruel when an illness takes away the sense of smell or taste, robbing people of quality of life at the same time as quantity of life. Why take away something that provides simple pleasures. Food evokes memories of childhood. The cream doughnuts that my mother would buy me as a sweet surprise. Back when I was little they seemed to be the size of a basketball, and I could never finish them. Now they seem like the size of ping pong balls and I could devour too many of them at once. I feel for the people who can no longer eat, deprived of a major source of enjoyment and delight. Also a lot of socialising involves food and drink. Come for a coffee, let’s have lunch or dinner. Our western-styled food does not always suit everyone’s palates. A patient’s husband begged me to discharge his wife home. She had done okay with us, was more comfortable, but during his stay with her, he was struggling. He could not eat the food that we provided him and was only eating instant ramen for sustenance. He was worried that he was about to starve to death, he was happy that I let them go home.

To be listened to is what my patients are not used to. The other doctors don’t even sit down, they stand in the doorway as if they are afraid that they are going to catch something. She must have something really important going on as she keeps on looking at her watch. It’s not just healthcare workers who become good at reading body language but patients and their families too. They can tell if you don’t really want to be there with them. That your body might be in front of their eyes but the vacancy in your gaze tells them that your mind is somewhere else.

What this doctor thinks the patient might think:

Did I make a choice to come to see you? No I’d rather be somewhere else, living my life, but no the illness brought me in front of you, and you can’t even give me your full attention for even a few minutes? Is that respectful? Don’t I deserve to be listened to? These are questions that are often left unsaid, but they are there, deep inside. People want to be treated like people. They want to be seen and heard, to have their words acknowledged, their feelings validated, to be recognised. A human wanting another human to connect with them, even if it is briefly during a clinical interaction. For someone to see what they are really like, how vulnerable they really are. To make them feel that they are important and worthy of attention. That what they say is of consequence, because they don’t have that many words left to share, so they want people to listen up. To really understand what they are going through.

How can you help me if you don’t even want to know me? You don’t try to get to know me, but seem to know every pixel of my computerised file. Look into my eyes, and see how my soul is screaming. I don’t want to be sick, I don’t want to be deteriorating, I certainly don’t want to be dying. But I am, and there is nothing that anyone can do to stop it. You say that you want to make me more comfortable, but you don’t even want to hear what is actually going on. What really is troubling me, what I still need to finish, or to leave unfinished.

This is me, not wanting to be ignored any longer. Soon my voice will be gone forever, and the rest of me will die as well. Please acknowledge me as a human being, recognise me for who I am, as I will not be here for much longer and my time is running out. Go on and take that risk, of connecting with me, it won’t have to be for long as I won’t be your best friend forever. I am just a visitor, stopping over briefly at your place before I head to my next checkpoint. I might be going to my own home, I might be going to the funeral home, but there is still something that I need help with. I am losing myself, I can barely see myself in the mirror any more, each day I look as if I am shrinking, melting away tear drop by tear drop. The liquid of my body leaking out slowly through my eyes. It’s not just sadness that comes out, there is hurt and frustration. Sometimes there is red hot anger, this is not fair. What did I do to deserve this? Why am I being punished? What can you do to help me?

Don’t assume anything.

Instead, ask me questions, get to know me and my family, our shared history. My birthplace, where I grew up, the extent of schooling that I have had? What jobs have I done? Who is in my family? Who do I love? What do I love to do? What’s important to me at this stage in my life? You ask me and I’ll tell you, I am happy to tell you how to look after me better if only you’d pluck up the courage to ask. You might not like my answer but it is the complete and utter truth. I don’t have time to tell lies any more, to say that I am fine when it is clearly obvious that I am not. Sorry, you are not the most important thing in my life, and what you think doesn’t really matter that much to me. Please don’t waste my time, forgetting essential parts of my story, when it doesn’t suit you. You don’t help yourself and you certainly are not helping me. Either you’re with me or you’re not. It’s up to you.

So tell me, how are you going to help me…

To really be seen is what we want, for someone to have made that effort to see through my facade, to see into my heart.

What else can you do for me?

A glass of water would be nice.

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