Amblyopia and ptosis - side of eyelid drops down Posted: 08-28-07 13:02pm
Hey, I have just joined this forum. My
name is Justin, Im 18 years old and I
basically can say I SUFFER with my
amblyopia and ptosis. I was reading other
peoples posts and I notice how much people
think alike when they have these problems
with there eyes. I have had 2-3 surgeries
when I was about 1-3 years old and
recently had 3 more done ( eye muscle
surgery X2), to lift the lid up, and had
the same eye moved over a tiny bit. They
both affect my right eye. My eye has
caused nothing but anger, depression, me
talking to other people, times feeling I
dont want to live anymore...this is why i
said SUFFER before. Now I have told all
this to many other people and they said
not to dwell over it and move on... well I
have...until someone says "hey,why is the
side of your eyelid down?" or "hey whats
wrong with your eye". After I hear that I
just get so nervous and I feel like I wish
I was just home sleeping or being by
myself.. these problems annoy me so much
And I can't take it any longer....Im
typing all this so maybe someone out there
can help me get treatment for it or know
of a study that can help save my eyelid
and make it normal like everyone elses
|
gcraw
New User, Becoming EHEALTHy
Joined: 07 Nov 2007 Posts: 3
Posted: 11-07-07 14:00pm
Hi there, I don't have the eye lid
difficulty you have but have had a very
pronounced squint in my right eye since I
was 11, I am now 37, I had the the
surgery to correct the squint 9 days ago.
So far i'm pleased. I'm really sorry the
surgery has not worked out for you I can't
really advise on what your further options
are surgery wise. I also know nothing
about the eye lid condition.
What I can hopefully do is give some
advise on coping with a squint and it's
impact, having had one for 25 years. I
won't bore you with the details as to why
I didn't have the surgery before now but
double vision was the main concern.
Your absolutely right people tell you to
just accept it so you eventually do and
then someone makes some thoughtless remark
or you see the confusion in their eyes as
to who you are speaking to and it all
comes back to you. I have a squint.
Generally as you approach adulthood, as
you are now, people are a bit less likely
to make deliberate cruel remarks. However
one tenchnique I have developed is to take
control over my eye problem and get in
there first with any jokes. For example I
have to do quite a bit of group work and
presentations -nightmare for eye contact -
so I will sometimes make a statement a
long the lines of 'you may have noticed my
eye squints - so I might have to point to
the person i'm speaking to until I get to
know your names. So you'll know i'm not
being rude if I point'. I 'll usually say
it in a humorous way it gives a clear
message to people. Your doing a few things
here you are being assertive and saying
look I know my eye squints so what? I'm
not going to allow it to embarrass me or
stop me doing what I want, so if you think
it is a weakness you can exploit , then
forget it,I am to confident. Finally,
importantly you are showing a sense of
humour and by putting it out there into
the open you are freeing people from their
own embarrassement as to how they should
respond.
Sometimes people make comments out of
curiosity and don't mean to cause offence.
Unless a comment is obviously designed to
upset and or belittle you I generally
found the best response was to take an
educative approach and just explain in a
matter of fact way what the problem is.
If someone is being deliberately cruel
then try and think of some killer comeback
lines in response. I know they say turn
the other cheek but, unless you think the
person may get physical, then have some
fun thinking up a witty response to put
the person firmly in their place.
Here are some i have developed over the
years
Q
Have you ever thought of wearing an eye
patch? ( I kid you not i've had that a few
times)
A
No, have you ever thought of wearing a
complete face mask?
In response to 'cocke eye' and other such
comments
' Do you know, I could get a simple
operation to fix my eye problem but you
would require years of plastic surgery'.
or
Really (mock horror) I have a squint? oh
my god thanks for pointing it out.
or
I know it's amazing what an eye can do to
avoid looking at a face like yours?
Again, to each is there own but when
someone comes out with something like
cocke eye to me their fair game! Of
course, self preservation has to come
first so proceed with caution if you think
the person may get physical!
By doing the above you are again taking
control, using humour, and giving the
person a valuable lesson in don't deal out
what you can't take. Even if that person
appears be to perfect physically in ever
way I can guarantee that suggesting the
opposite generally stops people in their
tracks. It also puts the focus back on to
them and not you and if they've made such
a remark you can guarantee there is an
audience, which is why they probably said
it. You will clearly come out looking the
smarter and funnier to those present as
any fool can come out with a line like
'there goes cocke eye' or such like.
The reality is you will, as I have over
the years, still go home and feel like
crying but don't ever let those who want
to upset you see it. My advise is to use
the anger you feel, about how unjust your
eye problem is and some peoples response,
to motivate you to excel in other areas of
life. Do not allow anyone to make you a
victim. Let your difficulty help you
empathise with and understand other
peoples's difficulties and disabilities.
Let it make you show kindness to others
when you may be tempted to join the crowd
and go for a cheap laugh at others
expense. I stress that the comments I
spoke about earlier are in self defense, I
have never even as a child made cruel
comment abouts people physical appearance
unprovoked. I put this down to good
parenting but also my squint. It has
forced me to become confident but has
restrained me from becoming arrogant.
Consider your squint a friend albeit one
you fall out with a lot! Remember people
who are bothered by it or make cruel
comments are the sort of people who would
find something/anything to make a negative
comment about even if you didn't have an
eye problem. They are, in a nutshell,
people who are not worth knowing, forget
them but remember their comments and use
them to inspire you to succeed in life.
Surround yourself with smart, fun and
caring people who couldn't care less what
your eye or eye lid is doing from one
minute to the next! I have a core group of
friends I have known since your age, and
beyond, that I still meet up with
regularly they have brought happiness and
support to me througout my life. I am so
glad I invested my time and effort in
developing relationships with these people
who are worth knowing. I would rather have
a squint and have them as friends than not
and have people who don't really care
about me.
I have a good job, a lovely home, and a
beautiful wife, inside and out, she says
that she doesn't really notice it that
much. It is hard to believe when people
say that, but even when she does notice it
she says it doesn't bother her. I have to
accept this is true as she's been with me
for 10 years and lets face it nobody has
held a gun to her head! The advantage is
when you meet people who care for you or
are attracted to you when you have a an
eye or any other physical problem is that
you know it's genuine. Imagine having a
perfect set of eyes developing a squint in
later adult hood, which does happen, to
find that friends/partners suddenly can't
cope with you the new you!
Having had the operation, on being told
all these years later that the double
vision risk was very low, I have over the
last few days wondered why I didn't
investigate this more 20 years ago. On the
other hand I would maybe not have
developed into the character and person I
am today. I also have to prepare myself
for the possibility that after a few years
the squint can develop again. Sometimes
even after a few weeks the muscle can slip
back. In which case I will have atl east
have 25 years of coping skills to fall
back on!
I hope some of this has been of use to
you, and I hope it is not to patronising
particularly the bit about responses to
cruel bullying comments. However I would
hope some younger folk who may stumble
upon this post may find them useful. If
what I have said does come across a bit
trite or patronising I do apologise, it is
sometimes difficult to convey in the
written word feelings and thoughts that
are genuine and heartfelt.
I do hope that you can find a medical
solution but if not please try and
remember some of the above.
|
kellylang
New User, Becoming EHEALTHy
Joined: 03 Dec 2007 Posts: 5
Posted: 12-04-07 01:03am
justin i knw EXACTLY what you;re going
though. i have had strabismus about 13
years, and now i am 16 and my strabismus
or turning in of my eyr has turned into a
lazy eye. how great right?! -_- i feel so
self consious looking at people i want to
just hide in a ball and never come out. i
always wonder how lucky other ppl are
without this problem becuas what i would
give to be able to look at someone right
into the eye and not fear it no one knows
except people like us. they dont get it..
i have posted my own question on here
[this foum] about having someone to talk
to about it cuz it sucks being the only
one with this becuase its not that common.