| 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. |
