Member # 59
How do you cope with the disfigurement of the face? I wear
a surgical mask when I go out.
People stare, of course, and children point at me and question
I do wonder how others manage.
| From: new york city | Registered: Mar
Contributing Member (25+ posts)
Member # 91
I am sure that any disfigurement looks worse to you than anyone
else. People are their own worst critics. My mother had neck
resection, radiation, her mandible removed, over 1/2 of her
tongue removed, plus some of the floor of her mouth. I think
she looks pretty darn good considering everything she's been
through in the last year.She thinks she looks much worse than
anyone else does. I was expecting much worse than how she
actually looks. I'm not sure how extensive your surgery was,
but if it really bothers you enough to try and hide it, and
again I'm sure it bothers you more that anyone else, have
you looked into reconstructive surgery? I know that they can
do quite a bit more that they could even 5 years ago.
36 | From: Syracuse, NY | Registered: Apr
Member # 103
has had a radical neck dissection. She thinks she looks different
& that people are staring at her all the time. She really
looks no different to me now than she did before. She looks
great considering everything she has gone through. She had
the front 1/2 of her tongue removed, a pectoral flap to rebuild
the bottom of her mouth, trach, feeding tube, skin graft,
reconstructive surgery on her breast because where they did
the pec. flap became so infected they had to remove the dead
tissue. I think you should not worry about what others are
looking at & be thankful to have made this far. Remember the
old saying beauty is only skin deep. It is what's inside that
matters. Take care!
I have learned that life is too short. Spend as much time
as you can with you family & loved ones. You never know what
tomorrow will bring.
16 | From: Loves Park, IL | Registered:
Apr 2002 |
Member # 11
I had my neck dissection 19 years ago, pec flap to rebuild
the tongue and floor of the mouth. A turtle neck was a regular
piece of clothing for me back in those days. Everything heals
with time. If you can look forward more often than looking
back, the healing process increases ten-fold. Enjoy sunsets,
music, literature, or anything else that you have a passion
for ... and hang in there.
6 | From: Edmonton, Alberta, Canada | Registered:
Mar 2002 |
Member # 4
Being different in our society is tough, and children in particular,
out of ignorance of their impact on the emotions of others,
can be brutally candid and overt sometimes. At their young
age, it is likely that they have not themselves been subjected
to any significant physical or emotional scars, and they lack
the perspective that might temper their behavior. However,
even I find myself unstoppably curious at times, catching
myself staring at the one legged man, with the ultra high
tech leg who jogs by my home, or at people with large, visible
scars. I suppose it is human nature. I think what you have
to attempt to put into perspective, is that it is more about
how we view ourselves than how others view us. We may assume
that others find us unattractive, especially when we ourselves
do not like the way we look. Rather than shock or distaste,
in reality, their stare may be something completely different,
born of compassion, or simply benign curiosity. I suspect
that if he sees me staring, the one legged man doesn't realize
that I find his artificial leg a true marvel, and his determination
to jog on it each day an inspiration.
I was just at UCLA visiting a doctor who runs the maxillofacial
prosthetic clinic there. His patient population runs the gamut
from those that have a simple intra oral device like an obturator
to close off a surgical defect, to patients who have had major
portions of their facial structures surgically removed to
eliminate all of the cancer. Many of these included the loss
of an eye, the nose, the entire upper dental arch (the maxilla)
on one side, and more. I was fascinated by the realism of
the facial appliances that these patients wore. But after
touring the clinic what I was most struck by, was the attitude
of the people who were going through this process. Survivors
for sure, but more than that, their comments held a distinctly
positive note about their future, and a thankfulness for the
fact that they were still around to go on with their lives.
After all that they had been through, they hadn't been beaten
by the adversity of their ordeal.although certainly changed
and perhaps tempered. I left there with a renewed appreciation
for my own situation.
We cannot control what surgical necessities may do to our
appearance, and we also cannot control the curiosity of those
who find us different. All we can do is deal with our own
personal perspective. I believe that those positive maxillofacial
patients I met at UCLA, had come to terms with these realities.
One actually told me, that while there was less of him physically,
there actually was more to him (as a person) now. I believe
that I understand his comment. In my own life, periods of
adversity, Vietnam, injuries in accidents, divorce, financial
upheaval/bankruptcy, cancer, have been the vehicles to my
greatest personal growth as a human being.
Brian, stage 3 oral cancer survivor. OCF Founder and Director.
"The first responsibility of a leader is to define reality.
The last is to say thank you. In between, the leader is a
366 | From: Laguna Beach, CA | Registered:
Mar 2002 |
Platinum Member (100+ posts)
Member # 33
Last night I was in the grocery store when all of a sudden
I heard a barking noise...like a dog----thinking there is
no way there can be dogs in this grocery store I began looking
around to figure out where the noise was coming from. All
eyes were on this gentleman and his family and it took me
a minute to figure out why UNTIL the guy began barking and
twitching uncontrollably. It was obvious the guy had Tourettes
Syndrome, and it was obvious that he was used to numb-nuts,
like myself, staring at him. My first thought (and I hate
to admit this but...) was "oh, the poor guy" but as I followed
him in the store buying my groceries, my opinion quickly changed.
In between barks and twitches he interacted with his children,
disiplined them when he needed to but always in a kinding
and gentle manner. He lovingly put his arm around his wifes
shoulder once and both of them seemed very happy...content.
He wasn't hanging his head in shame and the kids didn't seem
to be bothered by his interruptions of barking or twitching
one little bit. Neither did his wife. And even the numb-nuts
like myself quit staring. It was apparent that he wasn't looking
for any pity from ME or anyone else. Because he felt so comfortable
in HIS skin, he made me feel comfortable---- along with about
95% of the store that day. I quite clearly remember the days
after my surgery and how people reacted to my scared, swollen
face or how they strained their ears when I spoke my first
few words after losing over two-thirds of my tongue. I wore
a LOT of turttle necks---had one in every color---still do.
But as time went by things did get a bit easier for me and
now I no longer pay attention to people looking at me (I'm
not even sure they do anymore) Once in awhile I'll have a
child look at my face and ask "what happened to you" but even
those days are few and far between. I'm guessing it's because
like the guy with Torrettes Syndrome, I have learned to just
carry on with my life. I hope as time passes your disfigurement
gets a bit easier for you. As we all know, its whats inside
that really counts anyway. Sincerely, Donna
129 | From: Plymouth, Minnesota | Registered:
Mar 2002 |
"Above & Beyond" Member (200+ posts)
Member # 12
I had my neck disection done approximatley a year and a half
ago. As others have stated, turtle necks were my norm. Not
only do I have them in every color, but long sleeve, short
sleeve and sleevles. Turtle necks for all seasons. I'm the
only one that sees the scars and if fact considered plastic
surgery last November to make things look better in my eyes.
Decided I didn't want to go under the knife again, and backed
off at the last minute. Please look beyond your scars and
into yourself for the inner strength that will pull you through.
Take Care. Anne.
Life has never been better.
204 | From: Wilmington, Delaware | Registered:
Mar 2002 |