De levende døde

Our helplessness is almost total when we meet a man who can never be the same again.
Death has become a taboo, it was called a few years ago. We have done something about this – death has never been more public and discussed than now. The previously anonymous black-and-white obituaries in the newspapers, with their crosses and prefabricated greetings, have in recent years been replaced by colorful tributes on Facebook. Preferably with pictures of the deceased in informal settings, as friends remember him.
The grief has become public. In social media, the deceased is marked long and exhaustively.
Our mention of the deceased also no longer ends with the funeral. As most of us now have a well-documented life online, the deceased is visibly present even though the body has disappeared. In social media, many exist even after they are dead.
On Facebook I have a couple or three friends who are dead. The profile pages are still there, so I can leave a greeting on their wall. I get offers from Facebook to invite them if I arrange something. One of them continued to send me invitations to play the Candy Crush Saga months after the cancer killed him. One can become religious by less. Death and the deceased are no longer the big taboo.

Those who have changed. However, something that is a big taboo is people who were ultimately saved from dying. And then I do not think of those who radiate recovered and well-functioning in weekly magazines, on tabloid covers or in "reality" television series. These went against all odds. I think of all those where the outcome actually followed the odds.
I think of people who were almost killed by illness, accidents or interrupted suicide attempts. Strokes or cardiac arrest where help came in time to save lives – but not in time to save life as it was. Or the many serious traffic injuries. Every year, fewer people die in traffic accidents in Norway. It also means that every year more and more people suffer serious injuries.
A number of patients who would have died a few years ago can today be saved. That we can now save more lives is a phenomenon we should be proud of. The life-saving emergence is the nobility of medicine. We should celebrate everyone who survives. Instead, we lack language and culture to meet and see many of those who just barely survived.
I especially think of people who have been so physically close to death that they have had brain changes. Brains cannot survive without oxygen for a long time. Heads are fragile body parts. Physical damage and effects on the brain often change people's functioning, sensation, personality or behavior.
We don't have the culture to meet people who have been so close to death that they are no longer the same. We would rather not see or know. They are away from us, but in a darker way than they would have been in death. It is easier to relate to people who are actually dead. We can pay tribute to the deceased on Facebook. We do not have a public language for those who survived with visible traces. They are taboo. Mention a deceased person and the conversation goes on. Name a person who has been affected by serious injuries and it will be quiet.

Would rather die. I know more with work experience from caring for people with brain injuries that affect their ability to communicate. Among those in need of care are people who were previously visible to us, but who disappeared at the moment they themselves survived death.
One of the nurses has told me of cases where patients with major paralysis and suspected cognitive failure were still able to take their lives. In one case, after a few months of loneliness, unsatisfactory care and inadequate treatment, a patient should have started screaming day and night, until the person in question dies. Another nurse tells me that employees in his department are joking that everyone should go with a cyanide pill on their body, in case the accident is out. A life cut off from the outside world – a life without human intercourse – is not a life. A nurse I know has instructed her immediate family not to call 113 should she ever get a stroke. She would rather die than disappear into isolated social invisibility, without contact with old life.
Only in recent years are patients who have developed so-called locked-in syndrome, been treated like humans. For years it was believed that these were devoid of any cognitive inner life. However, coincidence and subsequent research on communication with the eyes – these patients usually have large paralysis throughout the body – revealed that many of the patients thought as before. With new technology they can now communicate with the world around them. Those times around the world have time.
Also in patients whose cognitive abilities are impaired, there may be strong memories, notions of the lost, a need or a desire. There is no automaticity that everything that is not articulated verbally is lost. Furthermore, abuse or neglect can well be experienced and experienced, even for people without the ability to recount what they experienced.

Missing the essentials. One of my Facebook friends came out with an accident a couple of three years ago. It almost cost him his life. His life was saved, but it was also changed. I don't know if he talks anymore, or how much of his cognitive abilities or senses are retained. I just know that he can no longer write. The Facebook profile is managed by a family member who is trying to maintain his position as living among us. He was a visible and extroverted boy, a magic troll, and maybe it still is. I do not know.
Had I met him on the street now, I might have passed right by. I have no way to do it, to meet people who have almost died and are strongly affected by it. We who knew the people before they got their injuries are missing the essentials to approach us. Our culture lacks traditions, ethics, methods, routines, experience and language for such meetings. At the same time, we know that it could well have been us ourselves who had suffered the injuries. That we ourselves were bypassed on the street by former celebrities. But the taboo is too big.