Anyone facing a terrible illness or the consequences of a major trauma and suffering tries to understand whether it makes any sense. It would be easier to bear it if we could believe that there is a relationship of cause and effect between the evil that we did and the evil that attains us. It would be comforting to interpret suffering as a form of redemption or ordeal. Like Job, we ask the heavens “Why?” and get no reply (Job 3: p. 23) . We feel really bad in the moment (Schweitzer, 2015) and worse afterwards. However, in this world, some people get hurt, other people get lucky, and we won’t find any reason or any justice in it (Dawkins, 1995) .
2. Disease, the Real Enemy
“When the unthinkable happens, the lighthouse is hope. Once we choose hope, everything is possible,” Reeve (1999) wrote. But one day hope will vanish and we may not be able to stop it. “The total amount of suffering per year in the natural world is beyond all decent contemplation” (Dawkins, 1995) .
In fact, reasons for human suffering may remain a mystery forever. But illness or disability, like any other experience, may be seen as part of the learning what life is. After a prolonged illness or a terrifying accident life really changes. Reestablish the status quo is impossible. The well-known neurologist Sacks (1976) believed that “in examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life.” But he doesn’t mean that a long period of suffering can bring wisdom and compassion to the sick.
Anyway, it is during a long period hospitalized and debilitating that people may find time to question their values and their beliefs. Because it is the illness or an unexpected impairment that makes things that were considered banal before take on an inestimable value, as to walk or to see, to get out and about or to work. And we may learn that when we are the one who needs help, we cannot expect people to put us before themselves. As a matter of fact, “if you truly want to be respected by people you love, you must prove to them that you can survive without them,” as Johnson (2016) said.
But it would be wonderful if we could also learn that a person is more than just a physical body. It seems to others that someone afflicted with terminal illness is just a fragile, ill-articulated, ill-treated body. In fact, we only understand that a person is more than his or her physical body when we see someone we love dying. The body remains there―but we know that the personality we knew and loved has gone.
Nevertheless, no person will ever experience what another person is going through in the exact same way. Experts on health care are very impersonal. Day after day, side by side with suffering and misery, they learn to examine any situation in an analytical and intellectual way. They say they understand. But we only come to understand that old age, illness, sadness and insanity are terribly ugly when we receive a shocking diagnosis. Then we come to understand because we have crossed the bridge.
Courage and determination are not enough to overcome any disease or any disability, a medical problem which needs a medical solution. But knowledge of the situation helps. The mysteries of biology are already being unveiled. Anyone who has an incurable disease should be a student of his/her own condition. It is important to tell other people about our hits and misses so that they can learn from our triumphs and mistakes. It is always better to foresee danger.
Ambrosio (2010) wrote that “If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay”. No, it’s not okay. No one deserves a chronic, degenerative disease. “Disease, not death, is the real enemy” Nuland (1995) wrote. Schweitzer thinks that “Behind every chronic illness is just a person trying to find their way in the world” because “we’re just dealing with unwanted limitations in our hero’s journey.” And he goes on: “anyone who has a terrible disease wants to find love and be loved and be happy just like their family and friends”.
Nevertheless, it’s only on being tightened that a screw reveals its quality. Real people should share the suffering of their companion, their friend, their brother or sister. At least, they could understand bits and pieces. Diseased people need hope and patience. They need to forgive themselves and to forgive the others; and above all, they must keep going. We cannot compensate them for the pain or for the absurdity of the illness or the disability. We cannot undo what is done―but we can try. It is not the same thing, but it is equivalent.
And when it is time to go, let them go. As Nuland (1995) wisely said “we die so that the world may continue to live”. He adds: “The tragedy of a single individual becomes, in the balance of natural things, the triumph of ongoing life”. I do not mean that I am a kind of Will Traynor, a Jojo Moyes’ (2012) character, who decided to put a stop in his life after became a quadriplegic in a motorcycle accident. But a chronic and degenerative disease or a definitive disability makes we know everything is very small and rather joyless. When Montagu (2018) said “Die young, as late as possible” he meant we should stay young and healthy as long as possible.
We can accept the inexorable decline of the ageing. Bobbio (1992) said that age is a subject that raises strong contradictions in a person’s mind: adults fear it, youths ignore it and rulers hate it, because old people means to increase the number of State pensions or other payments. But everyone deserves an aged and wise and healthy grandma to love. Growing old is good, as put Olavo Bilac (2018) , a Brazilian poet:
Enjoy the glorious kindness we have sown and succor in our branches those who seek the shade and comfort offered to the weak!
We don’t find any reason or any justice in a serious chronic illness or severe disability. Hence, any person in this situation deserves solidarity. Solidarity is not just a sounding long word to be written on the posters of protesters, used in speeches by politicians or declaimed by intellectuals in their domains. Solidarity is a sentiment to be held in the heart. But we know it’s not always like that. Hoffer (2018) wrote: It is easier to love humanity as a whole than to love one’s neighbor. So, when we receive a terrifying diagnosis, we should learn with the poet Cecília Meirelles (2018) ,
I put my dream in a ship and placed the ship upon the sea. Then, I opened the sea with my hands, so that my dream would sink.