I realized something needed to change when my friends started squinting, leaning forward, and scrunching their shoulders up as an impersonation of me. I thought, “wow, is it really that bad?” Having congenital ptosis in addition to poor vision, sometimes it was hard to tell if I couldn’t see things very well because of the quality of my overall vision or the fact that my eyes just aren’t opened that wide. I did notice that things seemed to be getting worse. As I advanced in my career, I spent more and more time looking at presentations and staring at my computer.
As my sister and I mention throughout the website, we did not have surgery as children. The most common thing that happens when a child is born with ptosis, they have surgery as a small child at that point to correct it for a variety of reasons. I’m grateful to my parents that they were adamant that my siblings and I did not need corrective surgery. My father always championed that if it wasn’t impacting our ability to see, surgery would do nothing for us. We were very fortunate that we did not need surgery. For many children with congenital ptosis, surgery is necessary early on in life. I am appreciative that I grew up most of my life without any surgical intervention. Like my sister says, we love our unique look. My eyes were a huge part of my sense of self. I loved having an all natural look that was truly special.
All this changed in 2012 where I started to experience neck pain from craning my neck to look up most of the day. I spent a lot of time at work in meetings looking up at projected PowerPoint presentations and I didn’t realize that my eyelids were slowly drooping closed. I was scrunching my shoulders and tilting my chin up to try to compensate for my closing eyelids. At work people were amazed at how poorly I could see. I would often jokingly say that my eyelids were slowly closing to hide my shame at having such poor vision and to downplay my embarrassment. One of my respected colleagues called me out, reminding me that I’d been saying I needed surgery for almost a year. He turned to me one day and said, “When are you going to get that surgery? Do you realize you’ve been talking about this since the project started?”After having to have a few emergency massages because I couldn’t turn my neck due my default scrunching posture, I realized I had to take action. My drooping eyelids were now impacting my quality of life.
I was scared.
This was my face we were talking about and my vision. This is the first thing that everyone sees when they look at me. My face and my eyes were a huge part of my identity and my sense of self. What if I didn’t look like me after the surgery? What if they screwed up and I had damage to my eyes? How was I going to look after the surgery?
In my next regular eye exam, I spoke with my eye doctor and he agreed it was time to stop putting this off. He gave me a referral to a specialist. Luckily I was living in an area with academic hospitals. My specialist was a professor at a local prestigious university. She was overly excited to encounter an adult with my condition and no scar tissue. Surgery for kids with ptosis is fairly common and she had not encountered an adult with congenital ptosis with no previous surgery. While I appreciated her enthusiasm, professionalism, and expertise, at times I sort of felt like a freak show. My eyes are a part of who I am, so it felt strange that my condition would be of interest to someone else.
Based on her assessment, she confirmed what my eye doctor already knew. My eyelids were slowly drooping closed. You typically see this in children with congenital ptosis or in older adults, where the eye muscle is weakened with age. She immediately talked me through the surgery she would do to correct my eyes. There really weren’t other options to address my condition. I was highly skeptical of surgery. I try to avoid physically altering my body at all costs. There are so many complications that can arise from surgery. I was thoughtful about what was going to happen, but at the same time I didn’t think too much about it because I would drive myself crazy thinking about all the worst possible outcomes. After talking through all of this and listening to the specialist practically gush over my condition, as we set the date for surgery, as an afterthought she googled ptosis. She stated it might be interesting for me to know I was not alone and many people had this condition. Interestingly enough, it had never occurred to me to search online for this. I also think it is interesting that outside of my extended family I have never encountered someone else with ptosis.
I ended up having the surgery. I took pictures of what I looked like before the surgery in order to remember my “old” self in case surgery drastically changed my face. I had no idea what to expect. I was nervous, but I didn’t think too much about it leading up to the day of surgery. That was my coping strategy. I had a friend take me to my surgery and humor really helped to distract me from getting too scared. All the staff were extremely kind and even though I am very wary of surgical procedures, it went well. My doctor was really pleased with the results and everything went smoothly. I remember eating animal crackers in recovery and being scared to open my eyes after surgery. I was so happy I could see, but they have you keep your eyes closed and covered with an ice pack to minimize swelling. With my eyes closed, I fed myself crackers and was very tempted to ask, as a joke, when I could start having sex again as the nurse ran down the litany of things I couldn’t do. The most important was they told me not to expose my eyes to the sun for the next YEAR. The goal of course was to minimize scarring with the tiny surgical incisions above my eyebrows.
I was frequently traveling for business around the time I had my surgery, so I was a bit nervous of having enough time to recover before I would fly again. I did a decent amount of research on how to minimize bruising. One tactic is to eat pineapple. On the day of the surgery, my friend came to pick me up to drive me to the outpatient day surgery clinic. I walked out of my apartment with my overnight bag in one hand and a pineapple in the other. After surgery, I recovered at my friend’s house for the night. I immediately ate lots of pineapple! I felt pretty woozy from the anesthetic, so I spent most of my time napping the rest of the day. It took about a day for that feeling to wear off.
Overall, I was really lucky and I had minimal bruising. I was really happy about that. Luckily my work place is pretty casual, so that week I wore a baseball cap to work to hide the bruising around my eyes. The next week I had to travel for work. I couldn’t use make up to hide my incisions. My doctor did a great job of tucking them just under my eyebrows so they were barely noticeable. Unfortunately my client noticed and asked if I’d had surgery or been in a car accident. I hate attention like that, so I wan’t thrilled that they noticed, but the majority of people didn’t see anything at all.
Life post surgery isn’t so bad. The only thing I miss is the ability to wear eye shadow! As a part of the surgery, my doctor folded up my eyelid and created a slight crease. This opened up my eye a bit more to prevent my eyelids from drooping down and covering my pupil. With this crease, I am wary of putting anything on my eyelid. I don’t remember if after surgery they told me I couldn’t wear make up again, but I choose not to put any make up on my eyes.
I used to get my eyebrows waxed prior to having surgery. Now that I have slings slightly above my eyebrow, I decided that I didn’t want to continue waxing and my doctor also suggested this wouldn’t be a good idea. I was able to switch to getting my eyebrows threaded as this method causes less disturbance. I unfortunately have a nasty habit of compulsively rubbing my eyebrows. I do worry from time to time that I am damaging the work done from surgery because I rub my eyebrows, particularly my left eyebrow, so frequently. I am determined to break the habit though because when I had surgery I was able to stop cold turkey as my incisions healed. Eventually as the months passed and I completely healed, I somehow one day started rubbing my eyebrows again. As I write this, I have twinges in my left eyebrow – ah! Which further scare me into breaking the habit completely.
In the end, I am glad that I had the surgery. It is amazing to actually be able to open my eyes a bit wider than before. I also appreciate not having to tilt my chin up to be able to see things. I do look at my eyes in the mirror sometimes and miss how I used to look, but it truly isn’t that different. The benefit of having a higher quality of life outweighs me missing my old look.
Our parents decided when we were children to not have us go through with any surgeries. The BPES just made us look differently, and was not really affecting our lives in a negative way. They figured we were made that way for a reason, and we shouldn’t try to change that.
I am not upset with them for this. For most of the time, I forget that I even have a rare genetic condition. And now that I am older, I appreciate being unique. I think I am content to not have any surgeries unless my eyelids droop down to the point where it is affecting my eyesight. I guess I am subscribing to the “if it ain’t broke, don’t fix it” philosophy, because in my mind, if something goes wrong during surgery, I could permanently lose my eyesight. I’ve seen enough episodes of “Botched” to know that it is usually better to do a procedure only if it is absolutely necessary. And in my case, at this point, if I had anything done it would be purely cosmetic.
BPESisters 