I am thankful for…being born with crossed eyes; A Strabismus Saga
There. I wrote it. The sentence I never thought I would write–a condition I never thought I would be grateful for. But, I am thankful for it. Because the things I have overcome have made me who I am today. Someday, I hope to publish a book about my experiences in a way that will help and inspire others, especially young girls who have been diagnosed with strabismus or “crossed eyes.” It impacts 6 to 12 million people in the U.S. alone, but it is a disability that is rarely discussed. People tend to laugh behind hands at the cashier in the grocery store or the elderly man who may have an eye looking in an opposite direction, but that is as far as it goes. Here is a little of my own strabismus story and why I am thankful for it today, inspired by our pastor who explained the importance of having a thankful heart ALL THE TIME, not just when things are going well or poorly.
“No one can make you feel inferior without your consent.” – Eleanor Roosevelt
I found this quote courtesy of The Princess Diaries in that awkward middle school stage when I was gawky, skinny as a rail, with braces on my teeth and glasses on my face. I felt that I looked almost exactly like Anne Hathaway before the makeover. And, to make matters worse, I had low self confidence for a large part of my childhood, which I attribute mainly to my strabismus, otherwise known as a Lazy Eye. I have lived with strabismus my entire 26 years of life. It is affecting my daily life now less than it ever has and I can only pray that this time the cure will be lasting. But, sometimes I still worry about the relapse that has occurred every single time that I thought I was in the clear before.
You see, my eye turned inward to such a severe extent as a baby, that when combined with excessive vomiting, my pediatrician told my parents I may have a brain tumor. An MRI ruled that out, and I was instead diagnosed with a simple case of Acid Reflux and a not-so-simple case of strabismus. While neither of these conditions are life threatening, the strabismus in particular made life pretty uncomfortable. Not only would my eye turn in, an odd kind of squint in which my eyes would literally appear to be looking in different directions, (a condition known as Esptropia) , but the doctors were worried about the potential negative affects on my vision, particularly amblyopia or a permanent loss of vision in one or both eyes. My parents were determined to get me the best possible care, and thus began the continual trips to UAB in Birmingham and then to Vanderbilt in Nashville. At that time, my diagnosis was so complex that surgery was not an option, and my doctor recommended glasses instead to correct my vision.
As I was a small child, so many details of those first visits are unclear to me, but I remember the special outings to the Zoo after the appointments, I remember the dilating eye drops that stung a little and then made my eyes very blurry and the nice doctor with the long braid down her back. Before I started Kindergarten, my mom, brother and I took a trip to an Optical Shop in Twickenham and I was able to pick out my very own first pair of glasses. I chose a pair with multi colors and little Dalmatians on the side, likely due to my love for the Little Dalmatians. While the glasses would help correct the eye turning, I began Kindergarten as the Kid that was Different, which at age 5 is no fun. Most of my classmates had never seen glasses, although a few of my peers did get them a year or so later. Several kids wanted to touch my new glasses, and my Mom said I came home from school the first few days with the lenses so smudged I could not see through them. She actually had a major argument with my very first Kindergarten teacher who would not allow me to clean my little lenses with a cloth due to the fear of a major classroom disruption. The same teacher also would not let us wash our hands when we went to the bathroom(another story), and my Mom ended up moving me to another class early in the school year. That’s when I met Mrs. Fussell, whom I loved. My glasses were expensive so I remember at such a young age having to be so careful of putting them in my case when we would take naps. My new teacher let me clean them with no issue during the school day. However, I was very, very shy in those days and had trouble making friends with the other kids. I very much felt like the odd one out- how much of this is due to the strabismus as opposed to other personality factors, I don’t know. But I know at that time I felt isolated in my smeared bubble and much preferred the comfort of the musty library stacks to the lunch table, recess, and conversation that other kids so easily shared. I felt very awkward and shy. I had a couple of friends that I cherished very, very much, but mostly kept to myself otherwise. In 1st grade I was moved to a gifted class for part of the day, but as the youngest kid in the class, I didn’t really find a place there either at first.
Every few months we would make the two-hour trip to Nashville to see my eye specialist. My eye was still turning inward, and big medical words were thrown around that I didn’t understand. Around 2nd grade, my friends began to discover boys, and I developed my first crush too- not that I ever would have been brave enough to talk to him! If I even passed him in the hallway, I found an urgent need to run away. I preferred to sit and read a book alone, whether at lunch or recess, and made countless trips back and forth to the library! In 3rd grade I read Black Beauty and Pride and Prejudice for the first time, and that year I won an award for the most Accelerated Reading points in the whole school! I got to take a limo ride to a lunch restaurant of my choice in Huntsville, and my dad and a friend went with me. It was a lot of fun. But besides my grades and reading, I was far behind my peers when it came to social interaction.
Then, sports happened. Ugh. My parents signed me up for dance, basketball and soccer, and we soon found that I was entirely unskilled in these areas. My hand-eye coordination was almost non existent, which I later found is a result of the strabismus in many cases. With the turning eye, the vision does not develop normally where both eyes can see an individual, slightly different image in each eye and fuse them seamlessly together – what is known as normal binocular vision. Instead, because one eye turns (in, out or up,) that eye usually suppresses an image entirely in one eye to avoid double vision. That is what my eye did. I remember being so very frustrated at not being able to catch a ball, shoot a hoop, or dribble correctly. But I kept at it with my parents’ mantra “Winners never quit.” I was chosen last for any PE games which certainly did not help my self esteem any. But, I didn’t really blame the other kids for not picking me because I was truly so bad at game. Alternately, my brother was so very talented at sports that it became hard not to play the comparison game.
Our class entered middle school in 5th grade, and while I had broken out of my “shy shell” and had more girl friends, I had not yet had a boyfriend and began to wonder if I would ever get one. The boys I liked didn’t like me back. My appearance was still nothing to look at, in my opinion; I still wore the glasses, and while my eye turned less, it still occurred more frequently than I or my doctor would have liked. I distinctly remember sitting in a history class one day minding my own business after a test. I was kind of staring off into space, daydreaming about something, when suddenly a loud and blunt classmate yelled out “What is Amanda looking at? It’s like her eyes follow you all over the room or something .” A few snickers ensued, and then the teacher came back into the room. I was mortified, and it took everything in me not to cry on the spot.
I again retreated to the library. Every day after school I would check out books to read home on the bus- Harry Potter, the Babysitter’s Club, Sweet Valley High series. I was an office aide and likely the teacher’s pet in many classes as I tried my best in every class and genuinely loved my teachers. I had some very sweet and loyal friends and continued to try my best at sports . I played for our middle school soccer team– mostly warmed the bench–and a Rec league team. I finally talked my mom out of dance and basketball, and my dad became a Retired Champ for hanging in there with me for so long as the Coach; he had coached us for several Seasons and we were so terrible we would do well not to have the score board turned off on us–no lie!
My brother was a super star athlete on the other hand, and when my well meaning parents praised him about sports, I couldn’t help but feel badly through no fault of his. He was my Defender though and I know of at least 2 fights he entered into because someone made fun of my eyes/glasses. This wasn’t as dark a period as it sounds because aside from the lack of talent in sports and zero luck in the boy dept, I was excelling in school. I joined several extracurricular clubs and set my sights on getting into college. I focused on my female friendships which really blossomed, and on my family, and most importantly on Jesus. When I would occasionally feel lonely or left out, I would pray for my someday future husband whom I still believed I would find/have.
The summer after 8th grade, I got the best news of all! My esotropia appeared to have corrected. The glasses had worked, and my doctor said I had “outgrown them!” I am 26 now and haven’t worn glasses or contacts since, so she was right in that respect. I was so so so excited! I thought my appearance would be drastically improved now, and I could not wait to start high school as the new me. Well, 9th grade began much as before. I had grown up with all the boys I knew, and I assume they still remembered me as the awkward girl I had been for years. I quickly saw I didn’t have much of a chance with the cutest guys in our grade, some of whom I secretly liked. So, I again focused on my grades and female friendships. I found the high school world easier to navigate, especially once my braces came off in 10th grade. I had a couple of guys (not from our school) ask me on dates! I was happy to go.
Meanwhile, I still had regular check ups with my ophthalmologist, and she saw a new problem developing, one that while rare, does happen. My eye that used to turn inward had now developed exotropia (an outward turning.) It was infrequent but she wanted to watch it/monitor it over time. Well, on my first date with a jock from another high school, I remember going to eat at the Parkway Place Mall food court. My mom had helped me with my hair and make up, and I felt really pretty. Halfway through the date, he was telling a story and I was listening intently, making what I thought was good eye contact. All of a sudden he looked over his shoulder and back at me, and exclaimed, “What are you looking at?!” I was mortified when I realized what must be happening with my eyes, something that was totally out of my control. I tried to make light of it and told him I had some issues with my eyes. I turned bright red, and I know I stuttered. I tried my best to control my wandering eye, but to no avail. He was kind, but we did not go out again. I have since learned that people with strabismus often encounter these kinds of embarrassing situations when dating, and that it continues to erode one’s self confidence over time. My experience confirmed this on more than one occasion.
We continued seeing my doctor, and she said we may could eventually consider surgery but to keep monitoring it. I was 16, driving my first car and wanting more than anything just to be “normal.” As the year went on, my eye started doing a weird upward gaze in addition to the outward gaze. This happened in both eyes at times, so I developed an over compensation habit of tilting my chin downward when I took pictures or talked, in an effort to make my eyes look normal. Although my eyes no longer tilt up, I have not entirely broken the chin tilting habit to this day. In the midst of all this, I had several more dates, including one with a very cute guy I met on a family beach vacation, and finally found my first boyfriend. If the strabismus bothered him, he never commented, and I was relieved that my ugly duckling stage had at least evolved enough to have a full fledged boyfriend.
I was so embarrassed by the strabismus that I hated to talk about it at all and wanted what I had been through so far to be a secret. Looking back, this was silly, since my classmates who had known me for years obviously knew I had vision problems. I was accused a few times of “rolling my eyes” at friends, teachers and even family members when that was not my intention at all. I literally had no control over my eyes at times. Anyway, when my vision problems continued, I decided to have my first corrective surgery early in 2007. Strabismus is far more than a cosmetic issue; it affects your actual eyesight too. They don’t call it double vision for no reason! Yet, many insurance companies refuse to pay for this “cosmetic procedure.” Fortunately, my Dad’s insurance did cover it, as this very expensive surgery might have been otherwise unobtainable.
I was referred to a teaching surgeon at Vandy. The surgery was in Cool Springs, TN and I remember going to sleep, and waking up in what I felt at the time was excruciating pain because it was unfamiliar to me. After eye surgery, your eyelashes are stuck together with a gunk / build up that makes them hard to open, and that was scary. (Just imagine being stabbed in the eye and then waking up to find everything dark; an all-encompassing fear that you are now blind follows–at least for me!) However, I pried my eyelashes open, and as far as surgeries go, the pain and recovery isn’t terrible. For me, this first surgery was the worst because multiple muscles were worked on, and it was a new experience for me. We drove the 1.5 hours home, and I rested for a couple of days. They gave me some pain meds but after 1-2 days, I was good on just Motrin. My mom had endlessly researched beforehand and she had found a genius idea to freeze sponges to put on my eye instead of using traditional ice packs! The sponges are softer and conform to the sensitive skin of the face better. We also used these for wisdom teeth removal surgery as well with great success.
I used the sponges and some special eye drops for several days and then went back to see my doctor. The big thing during post-strabismus surgery recovery is to use an over-the-counter eye wash multiple times a day to keep the eye clean. As the sutures began to dissolve (he used temporary sutures), I felt an unbearable itching that I couldn’t scratch! I remember being in the car with my then-boyfriend and he had to physically hold my hands down to keep me from scratching. No swimming or eye makeup for a while post op, and your eye remains very red for about 10-15 days. I did my surgery over summer break so I didn’t have to go back to school that way.
Afterwards, I felt my vision improve drastically and for the first time, I had some semblance of real depth perception. All was well until my symptoms returned a year or so later. I had my second corrective surgery with the same doctor, again at Cool Springs in 2008. He wanted to operate on another muscle to correct my double vision issues. This surgery occurred in the Spring/Summer of my Senior Year of high school, and if memory serves it was just before I went off to college. I was so excited to go to Bama, a place with plenty of cute boys who would not know about all of my eye issues. I thought I looked a lot better than I had in middle school, although direct eye contact was still a bit of a struggle for me, as outgoing as I had become. I still did the chin tilt, but I had no glasses, and cosmetically, my eyes looked great!
I will never forget the day in college Art class when I notice my vision had again reverted. It was the Spring of my freshman year, and my teacher was giving a lecture and I suddenly had trouble focusing. I kept seeing two of her and couldn’t focus my left eye. I felt it suppressing the information again, just as it used to, so that I would only be looking through one eye at a time. My stomach sank. This could not be happening again. My mom wanted a second opinion, and this time we did not go back to Vandy. Instead she found Dr. Irene Ludwig, a specialist in childhood strabismus who has written many papers on the subject and travels throughout the Southeast treating patients with my condition. We got an initial apt with her and she explained I had basically had a complete relapse. She wanted to take an entirely different approach from the previous surgeon and also use permanent rather than solvable sutures. We agreed, and that May, when I came home for summer break, I had the surgery just days before starting my annual summer internship. I was still scared of the anesthesia part of the surgery, but I knew what the pain and recovery would feel like and realized it wasn’t so bad. I began my internship with no eye make up and a very red left eye. And, I met Luke Bradshaw two days later!
One of his very first questions to me was “What’s wrong with your eye?!” He thought I had maybe stabbed myself with a pencil or had been crying. I was used to those kinds of questions from cute guys at this point, and while it still rattled me, I wasn’t as phased as I would have been a few years back. I simply told him I had just had surgery. I felt very vulnerable and unattractive, not because he had done anything to make me feel that way but just because my experience with boys up to this point has been less than desirable. I had joined a sorority at Bama and enjoyed going to Date Parties and football games with several different very handsome fraternity guys, but at this point I was content just being single. I had stopped looking for a boyfriend honestly, and while I still prayed for my future husband occasionally, it was nowhere near the forefront of my mind when I actually met him!
Needless to say, Luke and I started dating, and the surgery was a success–so much so that I had relatively normal vision for more than 2 years! (for more on our love story, just reference the archives of this blog. I have truly found a man who has accepted me for me, just as I am, which is a blessing I thank God for every day. If you too are experiencing what I went through or another medical condition, do not give up hope on the dating front…God has a very special plan for you, too!)
As I was nearing my graduation from Bama, I started to notice the familiar warning signs that all was not well with my vision, although far less severe than in times past. The problem with strabismus, especially strabismus that develops at a young age, is that your brain doesn’t develop with your eyes correctly. It thinks that suppression of one eye is normal and so it continues to try to override any corrective surgery (this is in layman’s terms). Strabismus surgery often has to be repeated if it is not performed until later in life, and one statistic I recently saw stated that the inward turning of an eye can cause lifelong effects if not properly corrected within the 1st year of a baby’s life. I want to be very clear here: None of this is my parents’ fault, as they gave me the best care they could find, and drove hours to specialists at the best hospitals in the South for years and years. They never complained about the time or costs involved and just wanted me to get better. But when I was growing up, all the doctors we saw recommended waiting for surgery until I was older. Now, 25 years later, patients get this surgery younger and younger, and while I know adult strabismus surgery also can have largely positive outcomes, I have a particularly long lasting and complex case. My eyes have been this way my whole life, and that’s hard to permanently correct. I scheduled a fourth surgery date for June of 2013, just a couple of months before my wedding.
We thought that surgery was my last, as I experienced a very positive outcome for another 2 years. Then, in May of 2015, as I was planning Relay for Life at my job, I began to notice some familiar changes in my vision. My left eye in particular was having trouble focusing. It is interesting how when you have strabismus, you are so in tune with your eyes that you notice this subtle change right when it starts, and you can identify what it is (for better or worse.)
Again, this is not longer a cosmetic issue. No one has visibly seen my eye turn in more than 6 years, which is such a blessing. But I want my vision to be correct as well, as life with double vision can be challenging to say the least! I kept praying it was nothing and postponed calling the doctor until October. Things had gotten pretty bad during the preceding 4 months, and I had become scared to drive due to major depth perception issues. We scheduled a fifth surgery in Huntsville the day before my 25th birthday. #fifthtimesacharm. As it was more recent, I remember this surgery well. Luke took off work, and my bosses were also very understanding. We stayed with my Mom who again froze sponge packs for me. One of our former church members/deacons came to the Madison Surgery Center to say a prayer for a great outcome, and for all intents and purposes the surgery was highly successful. Anything less than a 10 result is highly successful, and I achieved a 6. However, 1 is ideal.
They make you take a 3D vision test beforehand, and you have to identify a set of 3D dots and animals, kind of a “which is the 3D object in this set?” test. At my worst as a child, I could always do this with ease. Last October, I was scoring 0/9 on the dots and 1/4 on the animals. I was terrified. After the surgery, I scored 2/9 on the dots and 4/4 on the animals. There is no question my vision has gotten far better than it was! But immediately after the surgery, I didn’t think my distance vision had substantially improved as it had in times past. Cosmetically, everything looked great, but I was concerned.
My doctor recommended four sessions of eye stretching to try to fix the problems I was having non-surgically. Eye stretching is like PT or rehab for the eyes. The tech puts some numbing gel in your eye and the doctor takes mini forceps and stretches it pretty intensely. It is uncomfortable, just as any PT is but bearable. It is done while you are awake, in the office, and you do most likely need a driver to take you home if you are driving any kind of distance because your eye will tear up for a while and remain sore for several hours/days (at least mine did.) We drove 1.5 hours to see my doctor in Dothan mostly, at Eye Center South, in Huntsville again, and in Birmingham. We followed her as she traveled. I had a mostly good experience except with the tech in Birmingham. He was not very nice and refused to use enough numbing gel. It was an awful experience, and Luke was pretty rude to him at the end. If you ever have this done, stand your ground and insist on that gel!! Make them use enough until you are comfortable. Otherwise it hurts something terrible if they even touch your eye, much less stretch it as far as it can go. Anyway, we were told that eye stretching is successful in 50% of cases, and the doctor seemed quite happy with my stretching outcome. My last session was in December of 2015. She also instructed me to wear reading glasses for computer work and reading, which has helped tremendously.
But, in the Spring of 2016, as we were driving to visit Luke’s family, he asked me to take a turn behind the wheel. It was dark out, and I struggled tremendously with the driving- mostly seeing at a distance. That’s when I knew I needed to go back to Dr. Ludwig. Something wasn’t right. I saw her a few weeks later in Dothan, and during the exam, she said my left eye was still crossing at a distance. It’s so minimal and not cosmetically obvious, but enough for me to notice. As it was negatively affecting my distance vision, I scheduled surgery for April 2016–my sixth one in as many years.
Ironically, I think going into my sixth eye surgery, I was more patient and less upset than I had ever been. I resolved to handle this with grace and to stop pitying myself and thinking “why me?” So many people have had it a whole lot tougher and manage just fine. Meanwhile, Jesus opened doors for me along the way to minister to others with this condition. At every appointment I found people in need of encouragement, so many children much, much younger than me and their parents, too! Here is an excerpt from the book I am writing, based on some events from my own life as an example of how I might be impacting others through this experience.
Leading into the third surgery…
“Her Mom sat beside her as always, frantically Googling, using Web MD as a tool to hopefully prompt the doctor with some sort of clue, some sort of tip that would once and for all solve Samantha’s medical issue—permanently. “Samantha….” The nurse stood in the door of the hallway, and Sammy stood up, tucking her book into her purse and straightening her back. With a lift of her chin, she met the nurse’s eyes and managed a smile. She sat in the all-too familiar chair of the triage room and completed the eye exercises by routine. Look straight ahead at the letters, try to read them. Sammy was elated to find that the nurse had to skip down 8 lines with her right eye, that she could see almost the smallest letters on the screen with her left eye covered. Then she switched, and as predicted, her left eye was much weaker. She could only see about 5 lines down before the letters became too small to see. Often, on this test, she would inadvertently memorize some of the lines that she could easily read with her dominant eye, and Samantha would find herself reciting the right answers to the blurred letters on the screen. Then, the nurse would give her the funny red and green colored glasses and do the color blindness test. Samantha always aced this test and thought it almost comical that she had to take it every single time. No, color blindness had never been her issue; if only her strabismus could be that cut and dry, black and white. Then, came the part Samantha dreaded.
The nurse jotted some notes in the chart and picked up a black booklet with a giant fly on the front. One thing about going to a pediatric specialist meant that a now teenaged Samantha had to deal with the funny cartoon characters, a plethora of pictures and stuffed animals that filled the office. While usually comforting and familiar, Samantha hated this fly, this book and all of the other animals in it. “Please try to pull at the fly’s wings,” the nurse instructed. Samantha did so, knowing the nurse was now testing her 3D vision, the part Samantha always failed. She always managed to capture that stinking fly, perhaps because he was large enough to fill the entire page. If she’d grabbed his wings once, she’d grabbed them 1,000 times. The nurse, Nurse Molly her name tag read, opened the book and instructed her to analyze circles made up of dots. One of the dots was supposed to stand out to Samantha as three-dimensional. She knew this in her head. But, for the life of her, beyond the first two circles (left dot, top dot), all of the dots looked the same. Flat. The nurse would give her another minute. Samantha also knew this routine too well. Nod with sympathy and a false smile and switch to the four rows of animals below. Today, the animals looked flatter to Samantha than they ever had. But, perhaps from years of this exercise, she knew the rote answers. Monkey, Cat, Frog, Squirrel. The nurse closed the book, turned back to her chart, and Samantha again felt her eyes well up. An A-student, she never failed a test except this one. Over and over, year after year, Samantha could not pass. And now, post-surgery, after the operation that was supposed to correct this issue, Samantha still failed.
Nurse Molly moved to dilate her eyes, and Samantha gripped at the tissues her Mom handed her automatically. Despite having gone through dozens of dilations in her 17 years of life, Samantha hated this part. She always dreaded it, the brief burning and stinging sensation followed by the cold relief of numbing drops. It never hurt, and she was always relieved when it was over. But every time a nurse moved to pry her eyes open, Samantha found an inexplicable need to blink them shut. “Don’t touch my eyes,” she wanted to shout. “Just leave them alone! I’m done. Done with this appointment, done with this issue. I JUST WANT TO BE NORMAL!” But, as usual, she silenced these thoughts, summoned up her dignity and managed to get through the dilation with only a brief yelp. Nurse Molly led Samantha and her Mom to another waiting room, this one darker so that her now-sensitive eyes would not react to the light. Mom turned toward her, as if to begin a conversation, as if to apologize again for the strabismus, but Samantha immediately turned to her Nook, tilting it toward the lamplight. She always played this game with herself—try to read for as long as you possibly can, because once the dilation takes effect, blurriness took over, making reading an impossibility. Just another small torture of her condition—she was forced to sit in a waiting room for hours at a time without even reading to distract her. Samantha’s record was 29.5 minutes until the Nook blurred too much to read on. But, as usual during these appointments, about five minutes in, Sammy found herself staring blankly at the wall, reflecting on her condition. What led her to be here?
Be still my Daughter, and know that I am God.
She felt His voice in her very heart, in her being, and knew that God was there. That He had great plans for her, in spite of this—no THROUGH this—condition.
As if on cue, a child next to her started wailing, distracting her from her reverie. Samantha glanced at the family. The little boy wore thick Coke bottle glasses and appeared to be about two. The doctor must be doing refraction tests on him, Sammy thought. She watched what must be his Mom reach for him, bounce him up and down on her lap and point at pictures in a book. The Dad sat next to her, somewhat helplessly, and then picked up his cell phone and began scrolling. Samantha was just about to look away when the kid jumped up and ran over to the miniature picnic table set up with a small castle toy set. Her brother, Wesley, had a castle just like that when he was younger, and he and Sam would spend hours moving the gold and black knights around, over the drawbridge, crossing the moat and down the corridors. They would often make pretend and have battles; Wesley usually won. Sammy made sure of that. This kid seemed to enjoy the knights as much as she had, and she smiled. His Dad meanwhile, moved over closer to the Mom, and the two now sat side by side, right next to Samantha. She couldn’t help but overhear their conversation.
“I don’t know what to do, Nora. Doctor Johnson said….”The Dad sounded distraught.
The woman called Nora responded, “I just couldn’t bear for her to operate on Johnny. Not when he’s so young. Can you imagine how painful an eye surgery would be for him? I can’t put him through that unless we are absolutely sure.”
The Dad sighed. “Nora, if we don’t, you heard what could happen. This strabismus isn’t just going to go away. His eyes will turn for years, he’ll get made fun of at school, could develop amblyopia and go blind in one or both eyes. I say we do it.”
“Tom,” Nora said. “Let’s just get through today, think about it, pray about it…” her voice trailed off. Nora’s eyes suddenly found Samantha’s and Samantha could see the glassiness belying tears, could feel her worry like it was physically present in the room with them. For a moment, she was transported directly into her own Mom’s heart. She could sense the helplessness, the desire to do anything to prevent your child from pain and being unable to.
Samantha couldn’t resist speaking up.
“Ma’am, I’ve had strabismus surgery before,” she ventured. “It wasn’t so bad, really.”
Nora immediately perked up, turning more fully toward her, peppering her with several questions at once.
“You have? What was it like? Did it hurt? Did it work?”
Placing her Nook aside, Samantha crossed her legs and turned toward Nora. She felt the Dad’s eyes on her as well as her own Mom’s while the kid continued to play on, oblivious.
“Yes, I had it last year. Dr. Johnson actually did it herself. It went very well. You wake up right afterward, and your eyelashes feel kind of glued down, very sticky. And then, when you open your eyes, it does hurt. But, she gave me some medicine for that. You use drops every day for a couple of weeks and wash out your eye to get all of the gunk out, and it’s red for several weeks. You can’t go swimming,” Samantha laughed briefly. “But, it’s Winter now, so you’re good there. All in all, it’s so worth it, ma’am. My vision got so much better, and they say the younger you can get it….Well the more likely it is to work. Because your brain doesn’t develop to see things out of two eyes at once.” Samantha nodded toward Tom and the castle. “In my opinion, if Dr. Johnson is advising it, I would say go for it.”
The relief coming from Nora and the Dad seemed palpable. Samantha really felt that they cared about her experience, what she had to say, that she had in some way made their decision easier. Nurse Molly appeared in the doorway then, calling Johnny for his second part of the appointment. The parents jumped up, and as the Dad lifted Johnny and the diaper bag up, Nora paused briefly, squeezed Samantha’s arm and made perfect eye contact. “Thank you,” she murmured before following her family into the exam room.
After their exit, Samantha turned back to her Nook, but she couldn’t see anymore. She set it aside for good, knowing her eyes would be blurry for the next few hours. “That was a good thing you did, encouraging that family,” Mom leaned over and whispered. Samantha nodded, blinking back her own tears and the idea that her surgery did NOT work. She still believed in the surgery though, firmly believed it could help Johnny. She also firmly believed if she would have had it herself at a younger age, before her vision was fully developed, if only her case had been less complex…Well, that was chasing a rabbit down a hole and not worth pondering at this point.
She quickly pulled herself out of her self-pity. After all, it was pointless. Maybe God put her here, today, back in this waiting room, just so she could help Johnny’s family in some way. Was that the point of all this, God?
Be still and know that I am God.
In that moment, Samantha was surer than ever that God had her here for a reason, that all of her experiences thus far had been leading up to this. That maybe, just maybe, she had helped someone today. And if that were the case, well, then it would all be worth it.”
One day I hope to publish my book. It has been hard to open old wounds to try to write parts of it as they occurred, but again, my hope is that it will help someone else in some way. #sixthtimesafix (Only time will tell.)
It’s been a really long road to get here, and for that I am grateful. Any suffering I experienced has only served to make me more kind, more compassionate, more understanding. And, I am thankful for it. But mostly, this is a story of Hope for others living with strabismus. Each and every surgery has helped to improve my life tremendously, even if the best part of the improvements have lasted just for a while instead of permanently. I can honestly say that my vision is much better now than it has been.
People don’t realize how much strabismus affects your life- driving, friendships, dating relationships, hand eye coordination, depth perception etc. even reading and studying! It is not just a cosmetic issue. I have backed into things, ran into signs in plain view, tripped over curbs, etc when I am having vision problems. (Sure, some of this may be a natural lack of grace or tendency toward clumsiness but strabismus causes a lot of it, too.)
If you or your child has strabismus, the important thing is to know you are not alone. This too will improve/pass. It may feel lonely and hard. You may feel ugly. But, know this. You are beautiful. You matter, first and foremost to Jesus Christ. And, here on Earth, you deserve to find someone who will make you feel beautiful rather than settling for less! You can find that person! Even if it’s not a romantic partner, you are a child of God first and foremost, and He creates nothing less than perfection. I feel called to share this strabismus story now in its latest chapter and hopefully conclusion. Although only God knows if it is.
While we have never been given a firm answer as to what caused my strabismus, we have concluded based on opinions from multiple specialists that it was likely birth trauma. I was in the birth canal far too long and finally had to be taken out with forceps and rushed to the NICU. I was not breathing when I was born, and I did not cry to the extreme fear and panic of my parents. I was also born extremely early and would have been considered premature by today’s standards. Genetics can also cause strabismus. No matter the cause, I survived and made it to where I am today because Jesus has a grand plan and a calling for my life. If you have made it all the way to the end of this story with me, know that Jesus has a big calling for you too!
When I got the news of my last surgery, I did not cry, scream or carry on as I have been prone to do in the past. It is what it is, a fact of life, a simple Road block that God has continued to leave in my path to help me mature and grow. Maybe the purpose is so that I can have some impact on others who feel so different and alone, maybe it’s something else. But I am doing my best to live with strabismus gracefully, away from fear and to encourage others to do the same. By God’s grace, I have a successful career as a public relations manager. I have given dozens of public speeches (being selected to give a high school graduation address was a highlight for me), and I can now give eye contact with the best of them. The insecurities don’t all disappear at once. To be honest, some still exist and may always to some extent. But when I separated myself from fear once and for all, I truly began to live. Today, I give no person the power to make me feel inferior or less than especially for a condition I was born with. Today, I have a happy, mostly normal lifestyle. I am very independent and most of my acquaintances would never know my eye ever turned or that I have any residual issues with it unless I choose to share that information. My Vision is better than it ever has been.
If you are considering strabismus surgery after a discussion with and recommendation from your doctor, don’t hold back and don’t delay. Your life will truly be changed in an unimaginable way. The first time you look at an object with both eyes TOGETHER, it truly feels like a miracle! ☺️ And that is something to be grateful for.
Yours in Christ,
A strabismus survivor