RE: Re: Surgery? Its sickening

[Guest guest]

Im sorry for even trying, i guess my opinions arent as valid as any of yours.

blepharophimosis From: bethgordon03@...Date: Mon, 19 Nov 2007 17:58:13 +0000Subject: blepharophimosis Re: Surgery? Its sickening

I can't believe people are still arguing about cosmetic vs. medical. You said your eyelashes scrape your eyes and you rub them and they water, have you visited a dr. anytime in the last 50 yrs? That could be remedied, and could have been remedied a long time ago.Do you really think that your problem is just cosmetic? Are you opposed to medical interventions for some other cultural or religious belief?For those whose kids see fine, and their eyes are just small. Don't you ever wonder if your kids could see BETTER if their eyes were bigger? I have BPES and I never realized how impaired my vision is til I watched my little girl. Other people can see in numerous directions much better than I can. Why wouldn't I want that for my kid? And why would I question anyone who does want that for their kid.> >> > Hi there h,> > > > Tact was never a strong suit of mine either, so here goes.> > > > You did yourself a disservice with this post - this email oozed > ignorance.> > Sit down for an afternoon and research the symptoms of bleph. Make > sure you> > look at a variety of pictures posted of people with the condition. > You will> > notice an important feature that many of the people (most of them > small> > babies) share. They cannot open their eyes. I don't mean that > their eyes> > were small. I'll say it again, as I get the impression clarity is > key here.> > They cannot open their eyes wide enough to see properly.> > > > Now, aside from the obvious, there is a serious issue with having > your> > pupils permanently covered, and it is this. If a number of years > pass and> > your pupils are not exposed to light, you go blind. It is very > important> > that you believe me here h - that is not good. You see, I > am as into> > self acceptance as you are. Like you, I am 3rd generation bleph. > But there> > is a catch here - the condition many of us have makes it impossible > to see> > without surgical treatment. By this I don't mean that people > titter behind> > your back during recess. I mean that some of the kids here would > go blind> > without surgery.> > > > h - the outrage you display, actually, isn't always a bad > thing by> > any means. Your ignorance, unfortunately, is. Get educated about > the> > condition you have, so that you in turn can be of service to those > afflicted> > even more severely than you are.> > > > All the best, Micah> > (3rd generation bleph, and partially blind in my right eye)> > > > > > > > blepharophimosis Surgery? Its sickening> > > > Im struggling right now to write this post with some sort of tact. > I > > thought this was a support group for people with "blepharophimosis" > > but to me it seems like surgery is what is being supported.... > > > > I would never dream of having surgery. What would i tell my child, > > when it was born, with eyes like me? How could i justify it, and > tell > > him or her that she is beautiful, except one thing, which surgery > > could "fix"? How could i make him face the world alone, if i had > went > > through surgery to get 'normal' eyes? The child would come out with > a > > perception innately that something was wrong with him. Why else > would > > mom have changed herself, if there wasnt a problem? > > > > I hear of kids going through 3 or 4 surgeries. I dont know if non > > affected parents have a complete understanding of just > > how...disturbing this is. > > > > In my family, people have had eyes like mine since before my great > > grandmother. I cant imagine what it would be like for two parents > > without the eyes to have a kid with the eyes. They must feel > > estranged, upset, scared, i dont know. > > > > But out of the bottom of my heart i would urge every single parent > > who ever has a child with the eyes to think about what they are > > doing. > > > > I grew up with family, constantly telling me i was beautiful, that > > there was nothing wrong with me and i had as much right to be on > the > > earth as anyone else. I dont know what it would be like to be > alone, > > never seeing a family member with eyes like yours, and then to have > > your parents show you in the direction of surgery. > > > > My eyes dont give me a huge vision problem, i dont even have ANY > > vision problems. So for an unaffected parent to give their child > > surgery at the age of 3 or 5 or something just really really upsets > > me. I was taught love and acceptance of peoples differences. > > > > I have been mocked, ridiculed and degraded my entire life by people > > who dont understand because of my eyes. But at the same time, i > would > > never get surgery to fix my outside appearance. It wont change my > > genes. > > > > Fuck being normal. Seriously. The people who hold my company love > and > > accept me for who I am. Ive waded through the callous assholes, and > > the friends i have now are true friends. A little bit of extra skin > > around my eyes doesnt change the way they feel about me. Sometimes > i > > thank god i was born this way. Now i know people love me for me > > instead of strictly my appearance. > > > > This post is huge and rather unorganized...but we aren't diseased, > > people. We have extra skin on our eyelids, and some of us have > vision > > restrictions. We have all of our limbs. We can talk, be articulate, > > create things...Any time i feel bad about my eyes i just think > about > > people confined to wheel chairs, people who cant take care of > > themselves or who have mental disabilities. > > > > Do people put their children through surgery saying they want to > make > > their children feel better about themselves??? > > > > I didnt even know my eyes were any different than anyone elses till > i > > was about 5, and even then it was a tentative understanding that i > > was different. > > > > I think maybe its the parents who feel uncomfortable. Maybe they > want > > to make themselves feel better about the way their child looks, and > > not vice versa. > > > > Im not trying to attack anyone personally, and if you want to call > me > > an asshole, or hate my words, please feel free. But i will tell you > > that i live this everyday. > > > > My cousin went to go have corrective surgery on her eyes. The only > > one in our entire family out of three generations. The doctors > messed > > up the operation and now she has limited function of one eye. You > > tell me what is better. > > > > Im really upset about this 'support' group. Im upset that i even > > found it. I thought i would be able to share experiences with > people > > like me. I didnt know that i would find people like me, going > through > > surgery, so they wouldnt be like me. > > > > > > > > > >