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It
is a typical morning. The alarm clock goes off
and I try to ignore the intense pain that permeates
my skull. I gather all the strength I can muster
and struggle to get up. It is a weekday so I
dress accordingly and hop in my car not forty
minutes later. About halfway through my morning
commute I realize that I havent the slightest
idea of where I am nor where my final destination
should be. A shocking lava of emotions erupts
as I aimlessly drive: fear, confusion, embarrassment,
solitude, anger. Where do I work? What do I
do for a living? I should call into work and
let them know Im running late but I dont know
who to call. I have suddenly lost my identity
but try to remain calm and composed. It will
come back to me. It always does. Time feels
as though it is standing still. Half an hour
goes by and I begin to envision myself working
in a school. Am I a teacher? Where are my lesson
plans? Suddenly, it hits me! I am a school counselor.
Everything starts coming back to me and I arrive
at work, about an hour past due.
The above scenario is just
a taste of the ongoing battle I have fought
in the aftermath of a post-surgical craniotomy.
It all began at the age of 22 when I started
experiencing bouts of severe vertigo, headaches,
nausea and vomiting. Later I noticed that I
was losing my hearing in my left ear and was
having hemifacial spasms. I had gone through
three years of negative MRIs, CAT scans, and
other tedious medical procedures and evaluations.
I had been misdiagnosed with a spectrum of maladies
among which included an Arnold Chiari malformation,
Familial Mediterranean fever, acoustic neuroma,
and even Multiple Sclerosis. At last I found
two caring and knowledgeable doctors who were
able to perform the necessary surgery for my
rare facial nerve hemangioma. I lost all of
my hearing in my left ear and subsequently went
through two years of facial paralysis, two bouts
of meningitis, two cerebrospinal fluid leaks,
two left neck neuromas and a variety of other
conditions including pneumonia, daily nausea
and vomiting, and kidney failure. I even had
appendicitis which had gone undiagnosed for
three months despite two visits to the ER, several
diagnostic tests, and finally, a laparoscopy.
On a daily basis I faced the
penetrating stares and questions of insensitive
people who would inquire: "Whats the matter
with your face?" "Why do you talk
funny?" "Why dont you ever smile?"
"Why do you slur your speech?" I prayed
that the nerve graft that was performed would
grow faster than the expected one millimeter
a month. I was forced to sleep with an eye patch
to prevent a corneal abrasion since I was unable
to close my eye. I would avoid eating in public
because of the embarrassment I felt when the
food drooled down the side of my mouth, and
would hate having my picture taken because I
could no longer smile and my face appeared deformed.
Five years later I am still
haunted by various residual effects in addition
to other unfamiliar ones and the fear of the
tumor returning. Having had formal training
as a school counselor and having personally
experienced the physical and emotional trauma
of a serious illness, it is in this spirit that
I offer what I hope will be some useful tips
in helping someone deal with a serious illness.
I have searched my memory bank and have gathered
a collection of thoughts, some from personal
experience, and others that I might have read
over the past several years. We, as caring professionals
family members, and friends are an essential
component to a timely recovery for the survivor
of a life-altering medical condition.
For the Helping Professional, Family Member,
or Friend
Listen and allow the survivor
to vent. Do not feel the responsibility to "solve
the problem" where there often is no solution.
More often than not, a person is only in need
of an empathetic ear.
Validate the survivors feelings.
Do not attempt to instantly "cheer him
up" and insist that he immediately "think
positively." A patient needs time to mourn
a physical loss before he can begin to accept
it and move on.
Do not assure the person that
"everything will be okay" since you
cannot guarantee that and he may feel as though
he is being denied the right to complain and
worry. Instead, emphasize that you will be there
physically and emotionally for support. It is
important for the patient not to feel abandoned
after being diagnosed with a serious medical
condition.
Understand that it is normal
for a person with a serious illness or disability
to have occasional thoughts of not wanting to
be alive but be vigilant that intrusive and
persistent suicidal ideation should be met with
the proper medical intervention (e.g., psychotherapy,
support groups, antidepressants, and, if severe
enough, hospitalization to prevent a successful
suicide attempt).
Show concern but do not inundate
the survivor with an endless list of "new
medical breakthroughs" that can cure whatever
ails him. It is good to be hopeful but simultaneously
remain realistic about his chances for a full
recovery.
Offer to help but do not insist.
Sometimes the survivor needs time to figure
out what he needs help with and when he is ready
to ask for it.
Help the survivor tap into
resources and employ a support system of family
members, friends, and professionals.
Help the patient understand
that illness and disabilities elicit a myriad
of emotions from people: fear, discomfort, awkwardness,
pity, embarrassment, and even anger. Many do
not know how to respond to illness and will
avoid the subject altogether. Some will even
distance themselves from the patient, not because
they dont care but simply because they feel
awkward and don't know what to say.
Assist the survivor in being
as independent as physically and mentally possible.
This will help increase his sense of worth.
Finally, do not allow the person
to be identified by his illness or disability.
(I was once introduced at a party as "the
girl with the brain tumor"). Instead, emphasize
the survivors talents, abilities, and character
strengths and help him in his transition from
a victim to a survivor, and ultimately, a thriver.
©1999 by
The American Academy of Experts in Traumatic
Stress, Inc. |
