I have seen in the movies and read in books that true love
is about finding joy in each other, about holding hands and giving roses and
writing love letters. I have heard in
wedding speeches and sermons that true love is about staying faithful even when
it isn’t fun.
I believe that both of these are true.
And I have seen second-hand that true love is often about
wiping dirty bottoms, and spoon-feeding, and encouragement to try one more
time, to get up for another day. True
love is about staying faithful even when someone’s personality changes after a
brain injury or during the onset of dementia.
This Valentine’s Day, I am reflecting about what I have
learned about true love from spouses who take on the role of caregivers—and
spouses who take on the role of patient.
Neither role is chosen, but when embraced, both teach us about true
love.
I wish I could tell you stories about them. My patients and their spouses. I wish I could shout to the world about the
meaning of love they teach me. Out of
respect for their privacy, however, I will give you only a few snapshots, and
I’m scrambling the details so no one is identifiable.
A wife wipes her husband’s mouth as he struggles to
spoon-feed himself pureed vegetables.
In speech therapy, a husband practices over and over again
saying the phrase “I love you” so he can finally say it to his wife.
A wife kisses her husband on the forehead as he stares at
photographs of his family and cannot recall their names.
A spouse brings a mattress into the inpatient hospital room
so their beloved doesn’t have to spend the night alone.
Two spouses pray the rosary together even as one of them is
connected to IVs and oxygen tanks.
Roses, Valentine’s Day cards, and balloons crowd the
windowsill in a hospital room.
A husband calls his wife during a speech therapy session so
she can practice answering the phone.
A wife tells her husband his joke is funny even though he
just told the same one five minutes before, to make her laugh.
Two spouses in wheelchairs insist on sitting close enough to
hold hands.
I could go on and on and on with moments like these. Caregiver-spouses and patient-spouses show
that marriage is a forever-commitment, that the union of souls is deeper even
than the union of minds. Because minds
can change. External circumstances can
change how a mind works and even how a personality presents. Sometimes the changes are obviously positive,
maturity and growth. But what about when
the changes are more complicated, like a new cognitive disability, or increased
social inhibition? What then?
True love supports and does not enable. True love sets appropriate boundaries, even
when it’s unpleasant. This is a
difficult dance. And sometimes, true
love makes mistakes and gets angry and storms out of the room, because we are
all humans.
And my patients—learning to love and be loved in a new way,
re-understanding what it means to be themselves. That takes more courage than I could ever
imagine.
There is so much more to true love that I have yet to learn. I am sure I’ve gotten some things wrong, even
here in this reflection. If you want to understand
more about true love’s endurance, ask someone with acquired
disabilities or chronic illness and their spouse. I
know I’ve talked before about the book Hope Heals,
by Katherine and Jay Wolf; they have chosen to be very vulnerable with the
journey of their marriage through stroke and brain surgery. (I am excited to read their new book, Suffer
Strong!) Maria Morera Johnson wrote
about her experience caregiving for her spouse with Lou Gehrig’s in My Badass Book of Saints. Madeleine L’Engle chronicled her journey with
her husband from courtship to battling cancer in Two Part Invention: Story of a Marriage. Ashley Stevens describes her journey of
healing and her husband’s commitment after a terrible car wreck at her blog Mountains Unmoved. Or you could ask a loved one, or a neighbor,
or a friend.
If there is one thing I have learned from my patients and
their spouses, it is this: True love is
bigger than sickness. True love never
fails.
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