Everyone in the room is quiet. I feel like the old man leaning forward looking through my glasses understanding the situation but not fully. As an observer I have seen it, can describe it but I am not experiencing it myself. No one in the room can appreciate that struggle. Three situations have made me think differently this week about cancer and what I do. So lets navigate the spheres of care. The psychological, the spiritual, and the physical realms that humans use to perceive their surroundings.
I walk into a room and pull up a chair. I feel separated from my patient because of a new unfortunate event. I start to talk. The power of words, trying to reconnect and asking politely to let me back into their struggle. My patient said to me “Mo I can handle the pain but not the emotions of this struggle”. I acknowledge this. I do not underestimate it. Anxiety and depression makes a patient alone as if orphaned by their diagnosis struggling at their core to make sense of things. The psychological scramble.
My patient sits across from me, my last one for the day I think to myself, going home soon, the day is done. Then out of the blue as I describe the cancer, I hear the words “Mo you talk about cancer very spiritually.” Revelation. Taboo, should not talk to this person about this right now, no religion allowed. That’s the training. My indoctrination. But honest that was one of the best conversations I have ever had with someone with this disease.
Challenged. My patient stares at me but does not understand. Waves at me and smiles. That innocent oblivious smile. Someone else is making this decision for them. They are in pain and the people around perceive the situation but are unable to communicate it truly and fully. How can this paradox exist you might think? In a challenged intellect perhaps where explaining the physical does not help, words are of no use and an orphan appears.
Three unique situations. Each one with no real guidance on how to approach them. Am I the pioneer then? Don’t want to be. But clearly we have to start thinking of this disease as different and evolve more holistic approaches to help those who it encompasses. Perhaps we have to explore it in places we dared not go before. Like orphans exploring parenthood for the first time.
“You got me this far” he told me. And then making it more difficult “I trust you” he added. Perhaps these should be easy words to hear and I should be proud that I was able to do something and be commended. But it’s the other words that linger “I trust you” he repeated. As I build my relationship with patients I become part of their successes, goals and their life. I am someone that they know, have shared their hardships and deepest thoughts. I am told that it is best to have barriers and not to get involved with them. I am told that I should find ways to separate me from them.
To me this responsibility, this trust is crushing. It generally sends me reeling trying to make sense of the inevitability. Perhaps now I understand the spouse and her tears. How do I comfort? With my knowledge that has failed? With my compassion that I disguise?
But it does not end there; there is a question that I have loathed. “How long do I have?”
Is there a stamp with an expiry date? Perhaps I missed it in my examinations. That is what I say out loud, angrily perhaps? Do you say you did not climb Everest when you got only half way? When you stood at the bottom of the mountain and your first words were “I cannot do this?” Now that you are half way, what should I say about the journey so far? What about the goals we reached the times we shared? Just because I could not get you to the top what should I do? That is why my patients are amazing. It’s the first statement “you got me this far” that makes me heal.
It reverberates deeply in my mind. What strikes me down to my core beyond words that I feel do not understand.
How do I say goodbye?
It’s about a mile walk from my clinic to my office. A small part of that walk is outside. Grey was the sky, a cold wind penetrated my shirt but not enough for a jacket I thought. A light drizzle of rain. I guess this is the “Ambience” of this blog. I sighed deeply as I walked, the conversation of the day speaking inside me. I could feel each step, each bone in my body ached. And I walked distracted.
“I am sorry but your insurance will not accept me treating you on this clinical trial.”
I did not go into medicine to be forbidden to treat someone with what I felt would be the best option for them. I imagined myself a rare bird stuck in a cage realizing the boundaries of the system that I existed in. My wings unable to soar. My perceived freedom now defined by outward forces beyond my control. I felt the bars close in and force my decisions. A slave to the system that I have now discovered is not easy to navigate. “This is all I have to treat you with”. I did not even want to be in the room anymore as I spoke to this human. Where did my compassion go? I longed for the freedom to decide the best treatment. I wanted to soar and my anger rattled me. I flew into the bars wanting them to bend. I felt the imposition of the system. Where are the tools to help my patient today? This is coming from someone who does not take “no” lightly.
I walked to my office, and talked to my boss. An incredible man to say the least. He let me talk. Like a cushion he absorbed this shock. This is not the first time that this has happened.
I have always liked the political cartoons of the past. They speak volumes in pictures. Intelligently portraying the issues of the time. I sat and read some of the “Far Side” cartoons on my couch. Humor a mature psychological defense mechanism like an old teacher showing the way.
Here is my picture for you- “Imagine”:
That despite this cage; this bird today sang.
I still found a way to deliver my care.
Elated. Content. And thankful. Today was a good day. I walked in to a clinic room and I asked “so what do you do for a living?” and the answer was well I am a teacher. I usually pause. I have an immense rush into my heart as I remember when I was a child looking at my teacher in awe loving every minute of the knowledge they had to share with me. Never did I dream that I would be in a place to return that favor that they gave to me. I usually do a “Mo” Bow and say your student has come back to help you.
In the back scenes of my clinical practice, I am bombarded with students, residents and fellows. Each at a different point in their learning curve. I try to teach what is not written. The art of medicine. Today I showed one of them how important it is to forget the rules and humble themselves to understand who the real teacher is. Each human has a journey that they must face, alone. I have touched on the voice in our head that is unique to us. But if we share this journey with others then we are not alone. I watched today as one human spoke to another. New connections were made. I watched my student being engulfed by the journey they were learning from. What a pleasure it is to be a part of that creation. To see the minds of those who learn to grow. It makes me proud. And today I am joyful.
My day was filled with atoms racing in all directions having a purpose and happy. I found myself dancing in rhythm as I “bounced” between the rooms delivering good news, all around. It was a good day. We had excitement build up in our minds like 4 year olds when we made a discovery. It was infectious, chattering away, feeling accomplished and on top of the world. We could not even sit still. I got a lot of hugs today sharing in the relief of being told you will be ok. What can I say except, I love that ! Perhaps that day is coming when I can walk in and always say – Hey there, you will be just fine. Today was a taste of what I see in our future.
My students watch me practice and I watch them grow. “To know” has been the treasure of the learner. I am teaching them to wield the power of this knowledge to understand how to make gold from metal; it is priceless. I said today that what you learn my student you must teach others, share with everyone and make sure you know who taught you.
Each experience shared. Each Journey travelled. Each human that I meet.
What wonderful teachers you all are.
It is a very interesting place to be in the room with one of my patients. The medium of trust allows them to share their intimate secrets with me. It is tranquil and exceptionally vast. Where am I tonight you might wonder as you read this? I guess I’m with myself; in a place where I do not wish to share secrets that are given to me in confidence. They are mine to treasure, each time I think of one they are very personal. I try to write about them and find my hands guided away from sharing. What a difficult thing to truly share with you all. While driving home tonight, my friend said “where do you draw the line with a patient?” It made me think of barriers perhaps we as physicians put up to protect ourselves from our patients’ feelings and emotions. Is there a line one draws when you are evoking their confidence to talk about things that they hold sacred?
I have often thought about my voice on a radio. After recording it, I always tend to say “that does not sound like me”. Our voices are unique to us; we all hear a different version in our heads of what people around us hear. It’s my confidential voice. It is fascinating to me that I am the only one who hears it my way. It strengthens the thought of my own journey in life. Personal. I feel when I am with my patient that I am hearing that voice that is so unique to them that I cannot find the words to talk about it with anyone. I feel I connect with them inside as they navigate their decisions. I share my thoughts of the same situation they are in, it’s like I dared to go down their journey too. When they take chemotherapy or when they throw in the towel and say enough, I am with them. It is that voice that I try to find the frequency. And I try to align it with how I would feel.
The question is, how do I find my way back to myself?
I guess in this dark night, that is exactly what I am doing. Finding my home again, finding me. It is cathartic that I could share in all the decisions I made with my patients today. It is a pleasure at the end of my visits with them that they stand up to shake my hand. I hope they see that I too am shaking theirs, in complete confidence that what we shared is sacred.