The Paradox

In “The Vital Role”
Amanda Fortini describes
the unusual illness
she got in Belize.
For several years
she experienced waves
of weakness and nausea very unpredictably.
She tells how a near stranger
became her caregiver.
“J” is the only name Amanda gives
this spirited woman, 20 years older,
who first moved into Amanda’s apartment,
and later took Amanda into her own place.
J cooked, cleaned, and cared
for Amanda months on end,
quite willingly, always without pay.
While Amanda enjoyed J’s companionship,
she felt something else too:
One of the most trying aspects of being sick is being cared for, as counterintuitive and thankless as that may sound. Nothing makes a person feel out of control—and illness by definition is a loss of control—like having to cede it to another person.
Later on she quotes Virginia Woolf
before making her point again:
“Always to have sympathy, always to be accompanied, always to be understood would be intolerable.” This is the great paradox of being cared for; as much as you want someone there for you, you also, in the end, don’t.

Amanda Fortini’s writing invites us to consider
the situation of the one in our care.
After putting ourselves in the other’s shoes
(or slippers or pajamas or hospital gown),
we might pose several questions.
What are the dominant feelings nowadays
of this person in our care?
Are these feelings comfortable or uncomfortable?
What are the changes they have undergone
as a result of their illness or incapacitation?
Are these changes wanted or unwanted?
What has happened to their sense of identity?
Their sense of worth?
Their sense of life satisfaction?
How might all this influence
how they relate to us?
And how might they be feeling
about this caregiving of ours
that they’re regularly receiving?
Might any part of them identify
with Amanda Fortini’s feelings,
not wanting us to be there as a caregiver?
Our answers to these questions deserve
to inform how we do what we do
if thoughtful caregiving is our goal,
don’t you think?

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