It all started in 1971. The year I was born. Brown Sugar was Number One that week of the 9th of June and Carole King's Album "Tapestry" was the Grammy Award winning album of that year. As far as anyone was concerned, I was born normal and healthy.
Three months passed and my dad noticed that I had some cloudy thing in my right eye. He never saw it before and my mom thinks it was because he used to toss me up in the air with a lamp shining behind him. He thought it was the light reflecting my eyes. They took me to one doctor--maybe the pediatrician (I'm not really sure who diagnosed me with this -- I've seen so many doctors in my time.) and he said it was a cataract and there was nothing they could do about it. The truth is, there was something they could do, but not in Buffalo. They were not up to date medically in the field and the doctors were so ignorant and afraid that they would lose money that they never referred us to someone outside of the state. Other hospitals in different states, operations were being done on Children with cataracts. I'm assuming that there were doctors who were experimenting on this at that time -- but I'll get to that point in the story when we reach 1978.
The doctors kept telling my parents to leave it alone because if they disturbed it, my eye would fall apart or I would get cancer etc. They didn't know what they were talking about. They weren't really sure how I got the cataract -- it's very odd for someone to be born with it in one eye because the eyes are formed simultaneously. As a baby, I was very uncooperative in the doctor's office. They took me in for exploratory surgery when I was still small (around 8 months old) I don't know that they were looking for, I'm sure they were just doing research on it. (note: Buffalo, NY to this day, is still 15 years behind in eye surgery)
My mother wasn't happy with one doctor's answer. She kept taking me to others trying to find out what can be done and no one had a straight answer for her. So, they just left it alone. Actually, the doctors who told my parents just to leave it alone are the ones doing cataract surgery today. I guess they found out by not doing the surgery, they were losing money. Cataract surgery is a money maker now, but not in the early 70s on children.
In 1973, when I was two, I had a cyst in my sinus cavity right next to the blind eye. That had to be removed, and the funny thing is you couldn't see the scar when I was little, but it showed up when I was about 19. It's strange that all my surgery has to do with that side of my face.
When I was really young, I had to wear these stupid glasses that looked like Buddy Holly. My pre-school picture shows that I was not happy to wear them. They were the only glasses for children that had unbreakable frames and lenses. They were trying to protect the good eye in wearing the glasses. I had 'plano' lenses in them until I was 15 or 16. Then I started to wear glasses with a prescription to be able to see far away.
Time went on and the doctor's still felt that they should do nothing. By the time I was in school in 1977 and 1978, my pediatrician (who was different than the one I originally had) said that since I was getting older, looks are really important with children and we should have the cataract removed. Kids were already asking questions while I was in day care like "What is that white thing in your eye?" and "Why is it there?" You know how kids are and they can be cruel.
My mom and the doctor started doing research and making phone calls to see who handles this stuff and they both came up with two names, a doctor in Washington state and a Dr. Hiles in Pittsburgh, PA. Since PA was closer, they called him and made an appointment.
I can't remember if it was Thanksgiving 1977 or 1978, but we spent it there at the Sheridan Hotel and had a few doctor's appointments with him. It was amazing to see kids who were like me -- all in one office. What he wanted to do was remove the cataract and insert an intraocular lens in the eye. Now for me, it wouldn't have helped me to see, but that was the experiment. (call me a guinea pig for future developments in this field - I received the book that Dr. Hiles wrote on his findings for the intraocular lens, the surgery I was a part of) Now they use intraocular lenses in the elderly who have had cataract surgery.
Since my lens was so cloudy for so long, they had to remove my original one and implant this one. I was scheduled to have surgery in December of 1978 in Pittsburgh. The surgery was long (around eight hours) because the cataract was so thick. I remember having a really weird dream going into anesthesia. I flew through the mask and into Sesame Street Big Numbers and then I heard someone call my name, lifted my head, but someone was holding it down. Strange. (oh the food in this hospital was really bad -- I lived on cereal for three days. You know it's bad when my dad can't even eat it.) I was only in the hospital for three days, but out of school for two weeks.
In February 1979, I had to go back for follow up surgery and I was in the hospital for one day. I lost a tooth that time. If you have loose teeth going into surgery, they pull them out so you don't swallow them.
Everything was find after that. My eye was normal looking and I had a little vision and could see light. The vision was only if someone held their fingers really close to the eye and my other eye was covered. It wasn't anything really big.
I can't remember when this started, but I started to get "blackouts" in that eye. That's what I called them. It's when I would see this flash of light, it would go black and then my "vision" would come back. This was going on for *years*. The doctors just said it was nothing because I couldn't see out of the eye well. That problem was the start of a retinal detachment which happened in 1989. However, I have to finish up the mid-80s before I get to 1989 and that problem that lead to the downfall and the loss of my right eye.
In 1985, I noticed that my eye was crossing inward and becoming a lazy eye. This happens when one doesn't use it. I started to become paranoid about this. It was obvious and you could see it in photographs. The doctor I was going at the time said he could do muscle surgery on it (he was big on doing muscle surgery on eyes). I should have NEVER had this done. The doctor screwed up and then covered it up in the records. (When the records were obtained for a future surgery, we found this out. He specifically notated the lens was tipped. However I had no problems with that lens up until that day.) So in 1986 (during Easter vacation when I was a freshman in high school) I had muscle surgery. What the doctor did was tip the lens in my eye so that it was rubbing against my cornea and eyelid. I was also a mess after the surgery, I threw up from the anesthesia (and I was on my back, I'm lucky I didn't choke), the nurses didn't clean it out of my hair (sorry...don't lose your cookies here). My eye hurt like hell and the next day, it was tearing blood that was all over my pillow. So, after that surgery I had problems with the eye. I had a lot of pain in the eye, it felt like there was something rubbing on my lid and I had a lot of headaches. The doctor never addressed this after many complaints.
He also didn't want to take out the lens after this He said that the eye would collapse. (he later admitted he didn't know how to take the lens out - so everything he told us was a lie about the eye collapsing didn't want to admit he couldn't do it at the time.)
So I dumped him as a doctor and went to yet another doctor, Dr. Park. Dr. Park is no longer practicing in Buffalo. He was sued for malpractice by someone and lost in the early 1990s (which is very strange since the statute of limitations is 2 years + 6 months extension on malpractice and this person had a case dating back to 1981.)
I never had a problem with him and he was the one that invented the intraocular lens that was in my eye. He was ahead of his time and I believe the doctors in Buffalo wanted to get him out of the city since 1974. He owned and operated his own medical center. He removed the lens in 1988 and said it was tipped and irritating the eye too much. Actually, he said that it shouldn't have even been put in because I really didn't need it. But then, I was part of an experiment and to remove the cataract-the lens was part of the deal. He removed the lens at his office. I was awake during the whole thing and my parents watched on a TV in the waiting room. I didn't have any more problems after that which was nice -- until the next year.
In 1989, I was supposed to go away for school. (To NYU to major in music business) Well that is another story all together and I came back after a week. I believe everything happens for a reason. I started looking for a job because I couldn't get into school here since the semester already started and I had to reapply. I worked at K-mart (very degrading job) for three weeks until I found the job at Record Theatre. In December of 1989, I had one of those blackouts at work, but the light never came back. I thought that was weird and it distracted me while working. I told my mom later on that night and she knew there was a problem. She called the doctor and he told me from the symptoms, that I had a retinal detachment and he wanted to see me tomorrow to do some tests. (I also could see blood when I looked up at the light in that eye.) The next day they did an ultrasound on the eye and found out it was detached and sent me to a specialist. The specialist said it was too complicated for him to touch and no other retinologist in Buffalo wanted to touch it (there was only 4 here at the time.) So, Dr. Park sent me to this world renown specialist in Boston -- Dr. Tolentino. I left the next day (freaked out by the doctors) and told to prepare for emergency surgery on Friday. Yes, I hyperventilated on the plane. The doctor couldn't do surgery because my eye was too inflamed from the hemorrhage --but it had to be done soon...that's if I decided to have it done. He told me "if you do something, you might lose the eye and if you don't, you might lose it too." He really wanted to preserve the eye in case something came up in medicine that would help me to see. (right now they are working on implanting microchips on the retinas of animals to see if that helps them to see -- that's why he wanted to fix it in 1989) Well, I didn't really want it done, but they kind of convinced me to do it. I was scheduled for surgery in January but had to cancel because I had bronchitis on New years. It was rescheduled for Feb. 14 -- a memorable Valentine's Day.
The surgery was that morning (another long surgery). I went in at 7:30 and got out of anesthesia at 3pm. It was awful. The repaired the retina, fixed the pupil (which was small) so they could see to the back of the eye and put a gas bubble in to hold the retina back which would disintegrate in six weeks.
I woke up, took the damn oxygen mask off my face and got yelled at by the nurse because I wasn't taking deep breaths to get rid of the effects from the surgery. My mom was there with me the whole time. She stayed in the hospital with me. Since I was under 22 I had to stay in the pediatrics unit. I was doing good the first day after the surgery. I was up and walking around a little, took a shower, was eating regular food but couldn't open up my other eye...sympathetic reaction. I also had to sleep with me head down parallel to the floor. Which meant walking with it in the same way for SIX WEEKS! They gave me one of those foamy mattress things for me because sleeping on your stomach for a long time tends to hurt your back.
The next day this girl was admitted for some eye surgery and her mother was newly divorced and wanted to travel around Boston while her daughter was in the hospital. This poor girl, after surgery, was in a lot of pain, received a pain killer, threw it up and then asked for another one. This kept going on and on. I had the sympathetic reaction and got sick and threw up. After that, I was in pretty bad shape. I developed a fever and couldn't even get up out of bed. My eye was inflamed and I couldn't eat. The nurse then informed us that the insurance company wanted us out of the hospital and I had to stay in the Ronald McDonald house across the street. The doctor stepped in and called the insurance company and said I would leave the hospital when I was well enough to leave.
The week passed. During this time, I had to keep my head down and watching TV was difficult. Do you know how hard it is for someone to describe The Simpsons to you? I left the next Tuesday but not by plane. I had to take a train because the gas bubble was in my eye. The train ride was 12 hours from Boston to Buffalo. Not a very comfortable way to travel after getting out of the hospital. I had to keep my head down on the train and had questions prompted by weirdoes getting off at the Utica, NY stop.
I was being followed up by a doctor in Buffalo. My family couldn't afford to keep running back and forth to Boston, MA for weekly follow ups. Six week after the surgery, realizing that he wasn't receiving all the money that Dr. Tolentino received for the surgery that fixed the retina, he told me that I had two small tears in the retina and they had to be fixed that day. He scared us into this procedure called cryopexy which freezes the tears. During the procedure, he didn't let the numbing drops numb my eye so I could feel when he gave me the needle in the eye, which caused the eye to hemorrhage again. He stormed out of the office saying that it didn't take. He never gave me medication for it and I was sent home. After that it went downhill and I slowly lost it. I became so light sensitive that I couldn't watch TV without sunglasses and the brightness turned down. The curtains were always shut and it was an effort for me to leave the house and go to work (fluorescent lights were terrible bright - my eye teared at work and everyone thought I was crying all day). It was horrible and it lasted for about a year and a half. Eventually I got a new doctor in Rochester/Webster, NY (about 2 hours from Buffalo) and he gave me medicine to help with the sensitivity.
But now, I had to deal with losing the eye. I was depressed throughout 1990 and 1991. I cried a lot, ripped the wallpaper down off my walls with my bare hands and had trouble going to work and school. I always would look at people's eyes and think "I used to have two normal eyes." Then, I started to get paranoid about the good eye and ran to my ophthalmologist every two months thinking that the other eye would be lost. He kept telling me that everything was fine and I had to stop coming there. Eventually I did and now go to the eye doctor twice a year like I'm supposed to.
Eventually, I learned to deal with the eye, but hated the way it looked. I wore glasses so no one really took notice. But I did. I would keep my head down and I wouldn't let anyone see me without them. I didn't allow anyone to take pictures of me during the years of 1990 until 1996. The interesting thing was, I was teaching school at this time (3 and 4th grade along with Kindergarten) and the children never asked what happened to my eye.
In 1996 I decided to get the prosthesis made (first try happened in 1991, but the eye was too sensitive still and had to postpone the making of it) because my dad's insurance was running out on me (I turned 25 that June) and Blue Cross/Blue Shield is the only insurance that covers prosthetics. (read your policies for prosthetics - I've noticed that HMO's don't cover them and if you have one that does, it's very rare) So I had the covering for my eye made. I still have my normal eye underneath, but this makes my eye look like the other one. People really can't tell because it moves like the other one. If you stare at it long enough you can see it's not as moist or a little transparent like my real eye. I have less headaches now since I got this, because my lid is now where it should be instead of being closed most of the time. I take it out at bedtime to give the eye a rest, but have fallen asleep with it in. Sometimes I forget it's there. It's funny now that I look at pictures taken recently and I can't even tell (well actually, only real eyes get "red eye, not fake ones). But I always think that everyone knows and is looking and scrutinizing it.
[About Me]