| 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. |
