Illness isn’t just the physical manifestation of disease and its internal processes, it is also the expression of silence. Words are limited, in fact: inept, at describing precisely what it feels to experience the bondage of failing health. There aren’t enough adjectives in any language, past and present, to permit a shared communion between the individual who lives that life and their loved ones. The best one can do, is be empathetic - which while perhaps sobering for those looking to comfort the infirm, succeeds to only to isolate them.
Yeah, I know, not what you
thought empathy accomplishes - and rather depressing. Now, I’m not saying to
refrain from being empathetic toward circumstances you’ve never experienced.
Empathy is a powerful tool: it enables one to take a step back and ask the
question, “How would I feel, if I were in this person’s shoes?”…
internal questions such as this, allow individuals an outlet of cause/effect
influenced decision making - it is being acutely aware that one’s
actions/reactions affect the world around them: a critical, yet invaluable,
practice when in unfamiliar situations.
I know I’ve said it countless of
times, but it is vital for loved ones to be aware of how even the most harmless
of intentions, no matter if they come from a good place, has the ability to
cause harm/offense. The expression of concern, for example, is very much
appreciated in the realm of illness. However, if the way you express concern is
by micro-managing every possible activity; or, by being over attentive: then,
you are creating a highly volatile atmosphere.
Depending on the severity of
illness, the recipient of your concern is already battling a hostile
environment caused by disease. In fact, that person has already sacrificed so
much: time, income, autonomy, etc. It is a daily reminder of what one has had
to compromise, in order to survive, observing their loved ones take for granted
what they now lack. And sure, that sounds whiny, but let me tell you: it sucks
to watch friends and family graduate on time and establish their
career/families, and know that all your plans are on hold for God knows how
long - if one even will get the chance to accomplish their goals/fulfill their
dreams. That, my dears, is the definition of isolation - and it is absolutely
depressing.
To watch the world pass you by
without a second thought, sucks. Sure, you go out and do things, run errands and
stuff - trying to keep as busy as possible in a futile attempt to feel like a
productive member of society… to feel normal. Hell, to feel like you have some
kind of say in the disease process: like you still have some sort of control. Yet,
the lack of random messages/calls to hang out (especially, the pictures and
status updates of loved ones) are cold reality checks, reminding you that
you missed out and your world is getting smaller.
Don’t be fooled by the projection
of strength and indifference. Those who endure the above, don’t want their
loved ones to feel obligated to include them in every single event… neither do
they wish for them to feel guilty for living life. That’s a huge no-no. We may
suck in the health department, but some of us are decent human beings (although
a tad bit envious at times), and are eager to hear tales of the coveted
“outside world”/latest gossip and jokes from their peers.
However, I want to project unto
you, the necessity of awareness. Don’t rely on words, because they may not come
and often times are unnecessary. Instead, understand the silence. For if you
cannot gather information in silence, then there is no way you will understand
anything that is said. Especially, if an individual, such as myself, is great
at the written word, yet horrible with the spoken word - therefore, unable to
speak in coherent sentences, the majority of the time.
And please, please be
mindful what you project unto anyone who is battling against disease/living
with disability. Meaning: don’t walk on eggshells, just be considerate. Don’t
assume that because you are coming from a place of love, exempts you from
responses varying from angry looks/verbal backlash, up to emotional withdraw.
Understand that the person you’re interacting with is still human. He/she is
not the embodiment of their disease/disability, despite physical
manifestations. Be genuine, and treat everyone with equal respect of
person-hood.
.... Just don’t be an ass-hat:
it's as simple as that...
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