Often times the greatest existential need we have is the idea that no one will remember us when we’re gone – at first we know our friends and family will keep who we are, but after a generation these people are probably gone too. At the end of life, the pressures to leave an undeniably relevant legacy can be crippling for people, especially young people. Coupled with the limited energy people have when they are uncomfortable, the nature of what people in the world expect is shrinking and the really important parts come into focus.
When time is viewed as limited, each moment can take on a weight never before experienced. Some of these expectations come from within and others from outside, but regardless of their origins, they can be crippling to the young person affected by their mortality, especially if they are uncomfortable. Culturally, there are several indications of what “dying young” is supposed to mean, and most of them relate to extraordinary and often unachievable expectations. For example, members of the ’27 Club ‘(celebrities who die on or before their 27th birthday) and notable cancer-related concepts around’ Bucket Lists’ and novels (e.g. The Fault in Our Stars). Most young people, especially those who are dying, have neither the ability nor the opportunity to embark on an exceptional achievement. They can be overwhelmed and paralyzed by what to “do”.
I think I really missed my chance at greatness. I just want enough energy now to hang out with my friends. Maybe even go to the pub.
~ 18 year old male
Often, as is the case with many things in life, simple and small are the gestures and moments that are most telling. Big projects and adventures feel too overwhelming and out of reach for someone with limited energy and resources. As such, the imagination of how something might have looked and felt if they were okay is a much more satisfying space to sit in. Similarly, relationships become much more meaningful, as do the simple things that are taken away by the treatment process, like being able to sit in the sun or go to the pub with a friend.
“I had played online games with him for years and thought I’d never meet him now. But he did it. ‘
~ 19 year old man
Young patients can be bombarded with well-intentioned suggestions about what to “do”, including future legacy-based activities such as: B. leaving cards for each birthday of her younger sibling, video journals about her death or recording her feelings about everyone in her world. While these are good ideas, they are difficult to handle emotionally and physically with limited resources. Patients need to feel very resilient and comfortable before attempting any of these things, with most being given up without them due to being confronted with conceptualizing the world. It is difficult for someone to grasp the relatively abstract idea of the world that continues after your own death. This is not changing for young people and is in some ways even more difficult because of their ubiquitous self-awareness even in the face of the very real threat to their mortality.
“I could clean up my room and all of my things. But then I think, well, I don’t really wanna do it, and it’s not like it’s my problem. ‘
~ 23 year old man
The way young people respond to a very limited life expectancy can vary widely. Some may bury their heads firmly in the sand and refuse to discuss or conceive anything about what could happen before or after their death. Others organize everything about the end of their lives, including where to die, how vigilant to be, and what will happen after they die – such as where their belongings go and how they want to be reminded. For most people in this situation, almost everything is existentially out of control, the disease will do what it does, the pain is what it is, and they are observers of things that are going on in their bodies. The things people can control are what they talk about, how much they talk about it, and whoever they talk about.
Just because death, dying, and legacy are not discussed, it does not mean that it is not in the consciousness and in the thoughts of the person contemplating their own end. Instead, they may have thought and talked about as much as they need to do; It is often these patients who have very carefully considered plans of what to do when they deteriorate and what decisions to make about their care.
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