By Débora Hoffmann
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).
Disease is 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!
Conclusion
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.
References
Ambrosio,
C. (2010). Life Continues: Facing the Challenges of MS, Menopause and Midlife with
Hope, Courage and Humour. Ambrosart Ltd..
Bilac,
O. (2018). Brazilian Poetry in English.
http://www.antoniomiranda.com.br/poesia_ingles/cecilia_meireles.html
Bobbio, N. (1992). A era
dos direitos (2nd ed.). Rio de Janeiro: Campus Editora.
Dawkins,
R. (1995). River Out of Eden: A Darwinian View of Life. E-book. Kindle Edition.
Hoffer,
E. (2018). https://www.quotes.net/quote/6351
Job
3. Holy Bible (v. 23). Nashville, TN: The Gideon’s International.
Johnson,
M. B. (2016). The Infinity Sign. E-book. Kindle Edition.
Meirelles,
C. (2018). Brazilian Poetry in English.
http://www.antoniomiranda.com.br/poesia_ingles/cecilia_meireles.html
Montagu,
A. (2018). Posted by Neil Flanagan.
http://www.neil.com.au/die-young-as-late-as-possible/
Moyes,
J. (2012). Me before You. London: Pamela Dorman Books.
Nuland,
S. B. (1995). How We Die (2nd Ed.). New York: Vintage Books.
Reeve,
C. (1999). Still Me. New York:
Ballantine Books.
Sacks,
O. (1976). Awakenings. Harmondsworth: Pelican Books.
Schweitzer, G. (2015). Mind over Meniere’s: How I Conquered Meniere’s Disease and Learned to Thrive. CreateSpace Independent Publishing Platform.
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