So when I started to have concerns post eyelid retraction surgery that things weren't going to end up being correct. Which they didn't, but that is for another time. I found very little information and felt isolated dealing with ramifications of the surgery. One of the only good resources I found was this message board. In fact its a great resource. I highly recommend everyone read the posts on here, as many as possible, before surgery! it will give some perspective about what can go right and what can go wrong during the surgery.
I hope this helps someone make the right decision about surgery:
http://messageboards.makemeheal.com/blepharoplasty/
There is also a ton of other content on this website that is excellent about eye surgery (pictures, etc) and should also be reviewed.
Saturday, December 4, 2010
Friday, December 3, 2010
Some YouTube videos about people dealing with Ptosis
DISCLAIMER: This is purely my opinion and I don't have much to back it up but my personal feelings.
I'm starting to firmly believe that one of the HUGEST psycological impacts of ptosis is that its a very socially isolating medical issue. You have to be really, really strong emotionally and supremely confident not to let it affect your self esteem and sense of self worth. Its weird like that, that a 1mm or 2mm difference in eye symetry can have such a huge effect. But because such a small group of people has it (I tried to find statistics but data is so hard to find on it - in fact anything of relevance is hard to find on it) at least for me it makes me feel isolated, an exception, and different..... That said it is extremely important to fight those feeling actively and find strength in being different. Easier said than done, but very, very important. We all only get one life, and ptosis or not, this is what we were given!
So I looked on YouTube and watched these videos of others who have ptosis and how they deal with it. I must say, these are some strong, stong individuals, much stronger than me to document their experience and be so open about it, and embrace it. And learn to deal, being much older than then I am even more impressed, as it is taking me years and years to even get used to my ptosis.
I felt for the sake of feeling more "connected" that if anyone reading this that has ptosis, that this helps, at least a little ....
I'm starting to firmly believe that one of the HUGEST psycological impacts of ptosis is that its a very socially isolating medical issue. You have to be really, really strong emotionally and supremely confident not to let it affect your self esteem and sense of self worth. Its weird like that, that a 1mm or 2mm difference in eye symetry can have such a huge effect. But because such a small group of people has it (I tried to find statistics but data is so hard to find on it - in fact anything of relevance is hard to find on it) at least for me it makes me feel isolated, an exception, and different..... That said it is extremely important to fight those feeling actively and find strength in being different. Easier said than done, but very, very important. We all only get one life, and ptosis or not, this is what we were given!
So I looked on YouTube and watched these videos of others who have ptosis and how they deal with it. I must say, these are some strong, stong individuals, much stronger than me to document their experience and be so open about it, and embrace it. And learn to deal, being much older than then I am even more impressed, as it is taking me years and years to even get used to my ptosis.
I felt for the sake of feeling more "connected" that if anyone reading this that has ptosis, that this helps, at least a little ....
Hiding my droopy eyelid / ptosis & other tricks to living with ptosis
So I decided to next write about my lifetime of trying to hide my ptosis from people. Again to recap, I have ptosis of the right eye. And eyelid retraction of the left. Which the combination of causes eye asymmetry that at least I perceive to be pretty dramatic. Ironically, alot of people don't really notice it which tells me that either its not that dramatic, or I hide it really well. I do think its the latter cause in my last doctor visit is was dramatically visible, and also easy to see in photos.
This condition for me has been going on for about as long as I can remember. Probably the earliest I really started noticing it was in college. About 14 years ago. It wasn't that dramatic though, or at least I don't remember it to be, cause I didn't obsess over it like I do now. The difference might have been 1mm, which is like 10% of my regular 10mm to 12mm size of eye. But as time progressed it moved to closer to 4mm. A pretty visible difference at any angle.
I will address this in another post, but basically how I felt about myself and my ability to communicate effectively with others, and any sense of self worth was affected by this. So at some point I actively was trying to hide it.
But just to back up for a bit, at first I wasn't that bothered with it. First of one eye was not retracting yet, it was still sort of stationary, meaning that aside from the normal eyelid movement range from the day, it wasn't pulling up to reveal the white above my eyelid. The other was a little lazy. But when I felt it being heavy, I sort of did this inquisitive thing with the eyebrow. Where I raise the far end, if anyone has ever The Colbert Report, Stephen Colbert does it for dramatic effect. But I would do that quickly to simply lift the eyelid, and then it would seem to stay there for at least a bit. Recently, when I was explaining this droopy eye thing to a close friend of many, many years he told me its hard to tell that eye droops because I am always doing that inquisitive lift. I guess at some point I got so used to it that I was doing it subconsciously. So that worked for a while.
However more recently, and as I became more aware of how bad the ptosis was becoming. And noticing the eye retraction on the other eye, I really started to do mental gymnastics in front of the mirror to see how to hide it. I sort of for the first time had to actively figure out how to hide this from people.
One way, which I hate doing to this day, is I do NOT maintain eye contact for very long. Rarely for more than a second or less even. I hate not maintaining eye contact, but am so self conscious about the eye, that I just don't do it. Reason I hate not maintaining eye contact, is that I normally am fairly confident and want to show people respect by looking in the eyes. Somehow those intentions were drowned out from me over years of embarrassment, and so now its rare that I maintain eye contact.
To further provide detail, I tend to look at a person intermittently just to acknowledge I am paying attention. So I will look up and make brief eye contact to acknowledge person, and then be looking down or somewhere else during the conversation, with brief looks back. While alot of people do this, as this is pretty normal. No one wants to be creepy and just stare at someone. I sort of perfected the art of doing it very, very briefly. Sometime too brief to be socially acceptable. So its easy for it to seem that I am "not present" or "paying attention" but that's sort of the way it is with some people. Some people think that but not a large enough group to convince me I don't make enough eye contact. Normall I can offer enough verbal cues that I am still present in conversation.
So for example, I will look at person, and when they look at me, I will hold eye contact briefly, and I will turn away and in most instances look down at the ground or something while they talk. And acknowledge to be listen by nodding my head knowingly and looking up briefly periodically. While I am talking, I tend to be animated anyway and talk with my hands so there is usually a reason to be looking away or looking around, and only once in a while look back at person in acknowledgement.
Another trick is to furl the eyebrows, to really be dramatic with facial expressions. Most of those tend to obscure the eyelids, or even part of the eyes. I'm not doing this to the point of being comical, like TV host who exentuate every emotion for the audience and are over animated. Jim Carrey is a good example. But enough to hide the eyes a bit. When you furl you brows you can look like you are really focused on what the person is saying, and also hide the eyes a bit. Same with doing a squint where you shrink your eyes, when eyelids pulldown. Can't think of any exampel right now ehere that can be used.
My best trick in the book, which I lost due to a surgery for eyelid retraction recently (again, will cover in another post). is sort of hard to describe. But my ex used to call it the puppy dog look. I would put my chin down, and look up at people. Sort of with that "I'm sorry I chewed up the couch" puppy look. One it was convenient for getting symparthy when I did something wrong. But mainly very useful to hide the eyelids. Cause when I would do that my eyes are deep set enough that my eyelids were covered by my brow. Of course both eyelids pull up ok, so this only showed eyes and eyebrows. Could not see that eyelids were uneven. But at some point, you just look sad and sorry. So the key was not to lower you chin too much. You only do it a little it looks serious, inquzitive, and thoughtful. Even sort of intelectual, like "I'm listening intently".
Now, it might seem crazy to go to these lengths to hide how eyes look. Even writing this was somewhat embarresing, even if not a single person reads/sees it. I don't think I'm crazy :) I think I am just trying very hard not to be defeated by this issue. And honestly, I'm living in my own mind, and my mind has a certain way of interpreting how I should act to feel good about myself. I do have Obsessive Compulsive tendencies too, so it actually was not hard to follow some of these rules or tendencies. Although I do gotta say, it really is exhausting at times, to always be thinking about how you look. I have never been vail or really cared much if I was attractive or not, but this eye thing is draining because I simply want to feel "normal", whatever the definition fo that maybe. I look at peoples eyes, and always feel jealous now a days. Its alot to get over and a constant struggle.
I wish I could see into others minds to see how they would react (would they precieve my tricks as crazy?), but I don't personally know anyone else with ptosis. I envy the people who deal with ptosis and somehow do not let it affect them. There are some out there, and they are my heros cause they have to be mentally strong and sure of themselves. Here is one video of a girl who is totally cool with it, it seems: http://www.youtube.com/watch?v=KPf7rk1Zyoc. But for me the path has not been too easy. I would be conforted at least a little bit that there are other like me that have their own rituals. I'd like to know how they stay sane, how they avoid looking into a mirror several times a day, and so on and on.
We will see, maybe someone will find this blog and share their story. That's the goal anyway.
This condition for me has been going on for about as long as I can remember. Probably the earliest I really started noticing it was in college. About 14 years ago. It wasn't that dramatic though, or at least I don't remember it to be, cause I didn't obsess over it like I do now. The difference might have been 1mm, which is like 10% of my regular 10mm to 12mm size of eye. But as time progressed it moved to closer to 4mm. A pretty visible difference at any angle.
I will address this in another post, but basically how I felt about myself and my ability to communicate effectively with others, and any sense of self worth was affected by this. So at some point I actively was trying to hide it.
But just to back up for a bit, at first I wasn't that bothered with it. First of one eye was not retracting yet, it was still sort of stationary, meaning that aside from the normal eyelid movement range from the day, it wasn't pulling up to reveal the white above my eyelid. The other was a little lazy. But when I felt it being heavy, I sort of did this inquisitive thing with the eyebrow. Where I raise the far end, if anyone has ever The Colbert Report, Stephen Colbert does it for dramatic effect. But I would do that quickly to simply lift the eyelid, and then it would seem to stay there for at least a bit. Recently, when I was explaining this droopy eye thing to a close friend of many, many years he told me its hard to tell that eye droops because I am always doing that inquisitive lift. I guess at some point I got so used to it that I was doing it subconsciously. So that worked for a while.
However more recently, and as I became more aware of how bad the ptosis was becoming. And noticing the eye retraction on the other eye, I really started to do mental gymnastics in front of the mirror to see how to hide it. I sort of for the first time had to actively figure out how to hide this from people.
One way, which I hate doing to this day, is I do NOT maintain eye contact for very long. Rarely for more than a second or less even. I hate not maintaining eye contact, but am so self conscious about the eye, that I just don't do it. Reason I hate not maintaining eye contact, is that I normally am fairly confident and want to show people respect by looking in the eyes. Somehow those intentions were drowned out from me over years of embarrassment, and so now its rare that I maintain eye contact.
To further provide detail, I tend to look at a person intermittently just to acknowledge I am paying attention. So I will look up and make brief eye contact to acknowledge person, and then be looking down or somewhere else during the conversation, with brief looks back. While alot of people do this, as this is pretty normal. No one wants to be creepy and just stare at someone. I sort of perfected the art of doing it very, very briefly. Sometime too brief to be socially acceptable. So its easy for it to seem that I am "not present" or "paying attention" but that's sort of the way it is with some people. Some people think that but not a large enough group to convince me I don't make enough eye contact. Normall I can offer enough verbal cues that I am still present in conversation.
So for example, I will look at person, and when they look at me, I will hold eye contact briefly, and I will turn away and in most instances look down at the ground or something while they talk. And acknowledge to be listen by nodding my head knowingly and looking up briefly periodically. While I am talking, I tend to be animated anyway and talk with my hands so there is usually a reason to be looking away or looking around, and only once in a while look back at person in acknowledgement.
Another trick is to furl the eyebrows, to really be dramatic with facial expressions. Most of those tend to obscure the eyelids, or even part of the eyes. I'm not doing this to the point of being comical, like TV host who exentuate every emotion for the audience and are over animated. Jim Carrey is a good example. But enough to hide the eyes a bit. When you furl you brows you can look like you are really focused on what the person is saying, and also hide the eyes a bit. Same with doing a squint where you shrink your eyes, when eyelids pulldown. Can't think of any exampel right now ehere that can be used.
My best trick in the book, which I lost due to a surgery for eyelid retraction recently (again, will cover in another post). is sort of hard to describe. But my ex used to call it the puppy dog look. I would put my chin down, and look up at people. Sort of with that "I'm sorry I chewed up the couch" puppy look. One it was convenient for getting symparthy when I did something wrong. But mainly very useful to hide the eyelids. Cause when I would do that my eyes are deep set enough that my eyelids were covered by my brow. Of course both eyelids pull up ok, so this only showed eyes and eyebrows. Could not see that eyelids were uneven. But at some point, you just look sad and sorry. So the key was not to lower you chin too much. You only do it a little it looks serious, inquzitive, and thoughtful. Even sort of intelectual, like "I'm listening intently".
Now, it might seem crazy to go to these lengths to hide how eyes look. Even writing this was somewhat embarresing, even if not a single person reads/sees it. I don't think I'm crazy :) I think I am just trying very hard not to be defeated by this issue. And honestly, I'm living in my own mind, and my mind has a certain way of interpreting how I should act to feel good about myself. I do have Obsessive Compulsive tendencies too, so it actually was not hard to follow some of these rules or tendencies. Although I do gotta say, it really is exhausting at times, to always be thinking about how you look. I have never been vail or really cared much if I was attractive or not, but this eye thing is draining because I simply want to feel "normal", whatever the definition fo that maybe. I look at peoples eyes, and always feel jealous now a days. Its alot to get over and a constant struggle.
I wish I could see into others minds to see how they would react (would they precieve my tricks as crazy?), but I don't personally know anyone else with ptosis. I envy the people who deal with ptosis and somehow do not let it affect them. There are some out there, and they are my heros cause they have to be mentally strong and sure of themselves. Here is one video of a girl who is totally cool with it, it seems: http://www.youtube.com/watch?v=KPf7rk1Zyoc. But for me the path has not been too easy. I would be conforted at least a little bit that there are other like me that have their own rituals. I'd like to know how they stay sane, how they avoid looking into a mirror several times a day, and so on and on.
We will see, maybe someone will find this blog and share their story. That's the goal anyway.
An introduction: Why I am writing about droopy eyelid / ptosis and retraction
I am 33 years old, and there is one specific event that triggered me sitting here sharing these thoughts I normally prefer to keep to myself. And sometimes but rarely to a close group of very supportive friends. Three months ago I walked into a operating room to have one of my eyes, which retracts, repaired. To define retracts, I mean my upper eyelid pulls up too much by itself, so you can see the white above the pupil at most times. To give a visual, its sort of like a permanent shocked look. Mine is still pretty mild, but has been getting worse lately. I will provide pictures soon.
My other eye on the other hand has what is clinically know as ptosis. To most, simply as a droopy eyelid. This eye is not being operated on, but that is a whole other story.
In any case, I have been suffering from these two eye issues for as long as I can remember. There are physical manifestations of problems due to this, but most are psychological, which I shall address as well in detail in further posts. But the biggest physical is that my eyes are asymmetrical. They are about 4mm difference between where the eyelids are, which on a 10mm eye is a lot. Which causes a great amount of social anxiety, at least for me it does.
But on this day of the surgery, in a rare moment for me, I was blindly and overwhelmingly hopefully that this was the solution to my problems. That today I will walk into the surgery, and tomorrow be a new person with perfect asymmetrical eyes. That my problems of social anxiety will melt away, and I will have a new air and confidence about me. That life moving forward will be simplified, and much, much social and better.
I am writing this because I was wrong. Its never that simple and surgery has a certain give and take to it. The surgery in fact didn’t make my problems lesson, but actually might have increased my problems several fold. In the depths of a deep, deep depression that has lasted for the 3 months since surgery and will continue on, I made a strange decision to isolate myself. Not a good decision at all, which I am well aware of. Last thing you should do in a depression is be alone. But a decision I made regardless. I feel broken by how my eyes look, and decided that if I am going to isolate myself, not to go completely insane, might as well write about this a bit. The decision to isolate myself is out of my incredible fear of communicating with people and looking them in the eyes for too long, cause they will notice my lazy eye and be disgusted, or repulsed or whatever. It is an irrational fear, and it really shouldn't matter what people see or think, but we are social creatures, and I am overwhelmed by that fear. And in this instance it doesn’t matter what anyone says, that they can see it, it doesn’t matter, etc. My mind races and that’s all I think about during social interactions anyway.
As you can probably tell by now, I am brutally honest person. And I am not at all positive about my life experience with this. If I am too nihilistic, I apologize but this is how I feel and it will be my tone to be true to myself in conveying this story. And I want to be upfront that there are worse things that could happen, that I am a very lucky person with great friends, good career, and good health otherwise. And I try to be cognisant of the real problems of the world, and my small problems by comparison. But the truth is, I’m living in my own head and it is a struggle to see that perspective outside of myself, because ultimately in my world this is the number one problem. This is the overwhelming issue of concern.
I don’t have any great “call to action”, do this and things will get better final answer. I am writing this at a point where I still don’t have the answers, and still not sure how I will even deal with continued asymmetry of eyes. What my next steps are. I guess I writing this to the small community of people out there who have this issue and themselves might not know how to deal with it. And whom people with symmetrical eyes, the majority of people, just don’t understand the social anxiety this condition can and does cause. Just to sort of say, I get it, and I’m with you and I know what you are going through. And maybe in the hopes that some of them will reach out and tell me their stories, and maybe that might not make things better but they won’t feel as isolated as these eyelid issues made me feel over the years. Before writing this, I looked on the web for stories of people like me, and found almost none. So either there are very few of us, or there is no forum to share these stories. Maybe whatever this becomes, most likely a blog entry could be that forum. I will take it from there if it needs to become more.
I am already thinking about what to write next. Probably how I hid the ptosis for years, how it affected me psychologically, or even the surgery that went wrong. There is a lot to cover. I just gotta figure out some sort of structure first. I’m new in this attempt to concisely document this topic. I hope you bare with me.
My other eye on the other hand has what is clinically know as ptosis. To most, simply as a droopy eyelid. This eye is not being operated on, but that is a whole other story.
In any case, I have been suffering from these two eye issues for as long as I can remember. There are physical manifestations of problems due to this, but most are psychological, which I shall address as well in detail in further posts. But the biggest physical is that my eyes are asymmetrical. They are about 4mm difference between where the eyelids are, which on a 10mm eye is a lot. Which causes a great amount of social anxiety, at least for me it does.
But on this day of the surgery, in a rare moment for me, I was blindly and overwhelmingly hopefully that this was the solution to my problems. That today I will walk into the surgery, and tomorrow be a new person with perfect asymmetrical eyes. That my problems of social anxiety will melt away, and I will have a new air and confidence about me. That life moving forward will be simplified, and much, much social and better.
I am writing this because I was wrong. Its never that simple and surgery has a certain give and take to it. The surgery in fact didn’t make my problems lesson, but actually might have increased my problems several fold. In the depths of a deep, deep depression that has lasted for the 3 months since surgery and will continue on, I made a strange decision to isolate myself. Not a good decision at all, which I am well aware of. Last thing you should do in a depression is be alone. But a decision I made regardless. I feel broken by how my eyes look, and decided that if I am going to isolate myself, not to go completely insane, might as well write about this a bit. The decision to isolate myself is out of my incredible fear of communicating with people and looking them in the eyes for too long, cause they will notice my lazy eye and be disgusted, or repulsed or whatever. It is an irrational fear, and it really shouldn't matter what people see or think, but we are social creatures, and I am overwhelmed by that fear. And in this instance it doesn’t matter what anyone says, that they can see it, it doesn’t matter, etc. My mind races and that’s all I think about during social interactions anyway.
As you can probably tell by now, I am brutally honest person. And I am not at all positive about my life experience with this. If I am too nihilistic, I apologize but this is how I feel and it will be my tone to be true to myself in conveying this story. And I want to be upfront that there are worse things that could happen, that I am a very lucky person with great friends, good career, and good health otherwise. And I try to be cognisant of the real problems of the world, and my small problems by comparison. But the truth is, I’m living in my own head and it is a struggle to see that perspective outside of myself, because ultimately in my world this is the number one problem. This is the overwhelming issue of concern.
I don’t have any great “call to action”, do this and things will get better final answer. I am writing this at a point where I still don’t have the answers, and still not sure how I will even deal with continued asymmetry of eyes. What my next steps are. I guess I writing this to the small community of people out there who have this issue and themselves might not know how to deal with it. And whom people with symmetrical eyes, the majority of people, just don’t understand the social anxiety this condition can and does cause. Just to sort of say, I get it, and I’m with you and I know what you are going through. And maybe in the hopes that some of them will reach out and tell me their stories, and maybe that might not make things better but they won’t feel as isolated as these eyelid issues made me feel over the years. Before writing this, I looked on the web for stories of people like me, and found almost none. So either there are very few of us, or there is no forum to share these stories. Maybe whatever this becomes, most likely a blog entry could be that forum. I will take it from there if it needs to become more.
I am already thinking about what to write next. Probably how I hid the ptosis for years, how it affected me psychologically, or even the surgery that went wrong. There is a lot to cover. I just gotta figure out some sort of structure first. I’m new in this attempt to concisely document this topic. I hope you bare with me.
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