This week I will be writing in first person as it is my turn to share, eeekk, it’s about to get real and vulnerable – here we go! My partner, Shawna shared some insight into what her world looks like as a momma to two sweet kiddos, of her amazing son with autism and their beautiful life. Head on back to our YouTube archives to catch her full episode, here – it’s a good one! Ok, so when I thought about which story I was going to share I had a handful that I thought would be a good fit for The Red Bra Project, but I had to lean into the one that I was feeling the most resistance to. Why? Because if knew down deep that if I was having that much resistance, it was time to face it head on on, stop procrastinating and share – with the hope and intention it would reach someone who needed it. As I sit down to write this it does not escape me that it is on the eve of the fifth year “anniversary” if you want to call it that from the day I chose to have LASIK surgery, the day that forever changed my life.
I should probably mention that it took me 2.5 years before I could share my story while maintaining my emotions – gahhhh, I’ve come a long way!
Before I jump into my personal story I would like to put the disclaimer out there that I know and have heard of many successful LASIK stories. Whole heartily, if you are one of those people, I am so happy for you and your vision success. With a heavy heart, I also want to say that if you are not one of those people, I understand and I am so so sorry. Some cases will be worse than mine, some will be better – they are ALL important, each person’s feelings are important and I pray that for those of you still fighting, still struggling to find an answer that you don’t give up. Even when it feels like there is NOTHING that can help, please don’t give up.
I recently read two stories of LASIK patients who took their lives because they just couldn’t deal with the emotional, mental and physical pain any longer post LASIK. They left spouses and children behind. Devastating hardly begins to describe the situation. Then, I came across another women sharing her story and it gave a different perspective, she was able to find an answer that improved her said quality of life post LASIK, which is extremely inspiring for anyone struggling.
Everyone’s journey is their own journey and I honor each with respect.
Ok, for real this time – here’s mine.
I was considering LASIK for a very long time. It was always something I thought I wanted to explore. My vision was not horrendous or even bad at all, a 3.50. I’ve worn glasses / contacts since the third grade and it was the basic (now looking back) oh so small annoyances of contact wearing that I was beginning to see. The wearing them less due to irritation, more fine, red lines appearing, etc. I thought by getting out of the constant wear of contacts I would be doing my eye health a favor. I began the search of finding the doctor that was right for me. Narrowed down my choices, chose based on education, credentials & reviews, was tested & re – tested ensuring I was the ideal candidate for LASIK. Yep, all thumbs up, good to go! Leading up to the big day I followed all of the suggestions to reduce any general inflammation (exists within us all), keeping contacts out of eyes longer than recommended, eating anti – inflammatory foods, getting a little more rest, reducing stress (*ha!) anything extra I could do because I wanted to do everything in my power to ensure a positive outcome.
The morning of the procedure came, I was excited – a little nervous of course, but truly excited. I went back and it took no more than 10 minutes after all of the pre – procedure check in items, etc.,
Forty – five minutes later while I was supposed to be picking up the post surgery drops there was an awful burning sensation in both eyes. We called the institute for guidance, they told me to remain calm, get the drops as soon as I can and to go home and rest. I was told that what I was feeling is normal for some and there is no need to be concerned. It was then that I felt that empty, sinking feeling within my gut that I would soon become all too familiar with.
I kept pushing down that rising lump from my gut to heart to throat and kept choosing to place my belief and trust in the guidance of the professional’s I was referring to. It had been less than 24 hours. I breathed to remain calm, I took my drops, when I arrived home and went straight to sleep for what felt like a looooong time allowing my body to get a jump on the healing process. Curious and anxiously optimistic that with every time I opened my eyes my vision would become more clear. The next morning I opened my eyes. I couldn’t see the clock. I couldn’t make out the images on the TV clearly. I couldn’t see my own face in the mirror clearly – it was actually oddly different and worse than what I saw pre – surgery, but I couldn’t quite put my finger on it…
That morning I was sitting in the waiting room with the rest of the patients and a woman who was with her husband getting his third PRK procedure done asked me if I was “ok”? I don’t know how she could tell, although my heart was raw and I was scared. I said, “I don’t know, I just got LASIK yesterday and I feel like something isn’t right. I am anxious to hear what the doctor says.” She shared with me that as many times as she has been in that waiting room with her husband, she has seen more people the first day post LASIK like me than the ones who are gleaming because they can see 20 / 20. She reassured me that everything would be ok, it’s just that it takes longer than 12 hours for the results; unlike what we are often led to believe through not only marketing & advertising but others in the industry.
That damn sinking feeling was spreading and I could feel myself becoming more emotionally unstable.
I went in and I shared everything with the team. They encouraged me that it had been less than 24 hours, don’t worry about it, everyone heals at different speeds and they will see me in a couple weeks. I had some “bruising” on my eyeball itself from the pressure of the grips, but that should dissipate. They encouraged me to call sooner if need be.
I went home.
For the first five nights I slept with hard patches over my eyes so I wouldn’t dare take a chance to accidentally scratch my eyes during the night. No way was I going to risk that or interrupt the healing process.
I called on day 6. Concerned. Shared what I was experiencing and the Dr. put me on a dose of steroids, he said to help with the inflammation. Read the directions and take EXACTLY as directed. I did.
I returned sooner to my next follow – up appointment because I was concerned. This was at my choice, the institute would have allowed me to come in at the initially scheduled one weeks after my first follow – up. In my mind, I knew I wanted to get back in and quickly to see what we could do before more time passed.
I was told, everything looks healthy. The scar tissue, the eye(s), the flap, EVERYTHING. I was reading 20 / 30 & 20 / 25 on the charts, which was a major improvement from 20 / 35 & 20 / 40 at the first after care visit. They reassured me that things, meaning my vision would continue to improve, some people take MONTHS to heal. (What??? This was the FIRST I was hearing of this). And, if it doesn’t maybe I’ll have to be in glasses / contacts again with a minor prescription or we could talk about potentially another procedure. Thinking about another procedure was last on my list of options at this very moment. Here’s the important thing to note though, the chart was not CRISP. It felt different than pre – LASIK without glasses type of blurry. It was strange. And the craziest part was that when they put the glasses with the little holes over my eyes I could see crystal clear, ONLY THEN could I see like how I used to.
I expressed all of this to them at that appointment and at every single follow – up since then. I pushed being seen more frequently because I wanted to stay on top of any changes / improvements. Test after test with all their fancy equipment, eye charts, even topography tests and it was always, things look healthy, keep hanging in there as the eyes continue to heal.
Every day I woke up with hope. Looking for something to grasp onto. Ohhh, I think I can see the sign(s) more clearly today! Yes, yes, images are looking less blurred, the redness is going away, etc., Anything I could hold onto. This went on for five months. Five months of not knowing why I couldn’t see clearly. Again, while I could read the chart, per squints – it was NOT with 100% clarity & crispness like I could pre – LASIK. Five months of hearing, “you are a slow healer” everyone heals at a different pace. The moisture plugs, steroid drops, antibacterial drops, regular tears, being told I had dry eye even though at the time I didn’t feel like it, at all – a total mental, emotional & physical roller coaster. It’s incredible how much one CAN rise up even when it feels like nothing is left. Know I’m not alone out there talking about discovering what it takes to do whatever it takes to rise above the obstacles in a situation that tests everything about you.
Finally, I had to do something and I quit hoping I would just wake up and it would be a smidge better as I was being professionally guided to do. I asked for my prescription at yet another follow – up visit so I could order prescription sunglasses. Given that I am outside 75% of my normal day after speaking with the doctor we thought that would be a good place to start as my eyes continued to “heal.” The facility was reluctant to give me my prescription in the months prior because I was told, it is changing so much and could be fairly quickly, it would almost be a waste of money. At this point, 5 months in all I wanted was clarity – in so many ways. I knew there was a chance that this was the best my vision would get and from what I was told, there was a chance it could improve. Either way at least glasses would help me through the intermission and I was fully ready to re – commit to glasses & contacts again, no big deal I would be back to where I started.
The prescription sunglasses arrived and I remember the moment vividly. I took them out of the box, dark lenses, it was a super sunny day so they were perfect. I put them on, looked up, blinked, blinked again, took them off, looked at the lenses, flipped them around both ways, put them back on and paused. I still couldn’t see. Nothing improved. If anything, it actually got worse. I was so confused. Did they send me the wrong prescription? I called. Spoke to the manager, they confirmed the prescription. For the life of me, my brain could not process WHY I couldn’t see clearly. Confused, angry, more money shelled out (I pay for everything out of my own pocket) I immediately made an appointment with an outside Optometrist (not the usual office I was returning to for follow – ups) for an opinion.
He checked the lenses. It was indeed the correct prescription. He looked at my eyes, the corneas, the scar tissue – mentioned a few possibilities and agreed with me that something did not look / feel right based on what I was telling him. Finally someone was hearing me. This, during month six post procedure started the long 2.5 year roller coaster ride to discover exactly what was going on.
For the sake of time as there is so much to tell I will keep it to the main events. I saw several specialists all seeking second, third, fourth opinions. I needed someone to tell me what was going on because I wasn’t getting straight answers from the institute I had my procedure done at. (I was traveling 260 miles round trip for follow – up visits there as well). About two weeks from the date I saw the Optometrist who told me “No, you aren’t crazy, yes there is definitely something strange going on here,” I finally found some answers from a very well known surgeon in the south and his Director. Based on my topography findings, they told me I had what is called “central islands” in both of my corneas and that my vision would never be 100% correctable with regular contacts or glasses. In addition I also had astigmatism in my left eye (the worse of the two at the time). Swallow that.
A central island is a steepening of the cornea, where the center is highest. There are different grades and while most common in PRK patients, some central islands resolve on their own in PRK patients, some do not. A central island (also called steep central island or SCI) is a complication of excimer laser refractive surgery, in which the laser fails to uniformly reshape a small portion of the cornea. The non-uniform corneal tissue can result in a small, raised area in the center of the cornea with a higher refractive power than the surrounding tissue. This causes light to bend erratically and can lead to reduced visual acuity and other visual abnormalities. Souce: Eyewiki.aao.org
My head was spinning. But, I felt a sense of relief finally being told straight about what was going on. Now, I could look at options to address my condition that yes, was caused by a LASIK procedure. A procedure I absolutely chose to have. I mean, I was SO angry with myself. I remember thinking, “who in their right mind would choose to have hundreds of thousands of neurons singed in one of the most vulnerable places on your body, your EYES! Where you literally only ever have ONE pair and are NOT easily replaced.” That’s what I mean by the whole hindsight is 20 / 20 – no pun intended. Learning how to release those emotions was part of my process.
Fast forward through that summer and the months that turned into years later. There were a lot of doctor visits, a lot of trial & error and trying various solutions out. A lot of comments from strangers like, “Ohhh, you have a bad case of pink eye don’t you,” “late night out, huh?” “what happened to your eyes?” in addition to the looks – many sympathetic. I wore my sunglasses everywhere, never wanting to take them off indoors.
As many can relate to, when navigating through something yourself or alongside a loved one you become a teacher of your own experience and an expert on your own condition. I did just that. I could speak the language of the cornea, topography tests, central islands, and all of the jargon, the doctors were impressed. I didn’t care about that. It was more so so they knew they were dealing with someone who was DONE taking “you are a slow healer” as an answer. No more.
While we were trying things (yes, still paying all out of pocket) and making some headway, there were a handful of side – effects I was dealing with. The comfort level was actually very painful with the hard lenses I was trying, my eyes were literally bloodshot all of the time, light sensitivity still wasn’t improving, BUT – at least I could see clearly, it was a game of mind over matter and that was literally what I was hanging onto.
As my knowledge base grew and I began to understand with greater detail what my case entailed I learned it is actually so much more common than many of us may think to suffer from permanent LASIK complications. In the past few years and probably because I am way more in tune and sensitive to them, LASIK stories have popped up more & more. However; the marketing and advertising does a wonderful job of stating it’s just a few minutes and you can go back to work, drive, assume all normal activities within a couple of days at the most. The reality is that more people are affected in ways that are irreversible than any of us could every imagine.
I got to a point where the anger, guilt and frustration was so high. I would numb my feelings partially because it was all I could think about as it affected everything I did, but also because I couldn’t talk about it without crying. I was raw. For what I thought would last a few days, to weeks, to months, to a year, to years.
I literally was exhausted and at a very low point one day.
In addition to being my own advocate and recruiter so to speak seeking out different medical opinions and options I was also looking into things legally. Good thing I was always a good little note keeper (ask my college friends, ha – they aced every test from my notes, ha!) because as part of the process I had to submit emails, dates, tests, documents to potential lawyers for review. After about 15 submittals and hearing the same thing, “Basically unless you are blind, no one is going to take on this case” I knew I had to make a decision. I was literally in a downward spiral. The negative feelings building, isolation, exhaustion. I knew if I didn’t make a change, I would not end up in a good place – which lead me to a very pivotal point of my journey.
At that exact point and time I made a conscious choice to ONLY focus on solutions to my specific problem, NOT on lawyers, not on IF I had a case medically to protect me financially, ONLY on solutions. My mental, emotional & physical capacity had zero space left for anything else.
I never looked back.
Even when I was asked from people closer to me about why “X” isn’t paying for this or why I didn’t take anyone to court. For myself and my health (mentally) I had to keep my vision laser focused (hah, I SWEAR I didn’t plan that sentence, but again, no pun intended) on finding a solution.
That didn’t take away the awful days when I would literally just breakdown at the end in the privacy of my space because I was struggling with day to day things as my quality of life was definitely impacted. I’d let it out and pull myself up. Eric (my partner) was my rock. He was there every step of the way. It was actually him who found a women for me to speak with all the way in the Northwest area of the country (again, the irony as I used to live there) who was one of the very FIRST documented cases of LASIK Eye Surgery that went wrong. She was the sweetest when I emailed her and asked if we could talk. She agreed. I remember the conversation like it was yesterday – I took her call, listened to her story, she listened to mine, the parts I could get out in – between the tears. She asked me if any of the doctors I had seen ever said anything about scleral lenses to me. No, it did not ring a bell. She told me about the success she had with these. I thanked her for her time and stored the information away.
A few weeks later, I was in Rochester, NY checking out of a store. Now, remember I mentioned above that I would keep my sunglasses on at all times, but at this particular moment, I had to take them off to count out the money for the cashier. Before I put them back on I glanced at the gentleman behind me. I paid, quickly putting my glasses back on and he said, “Miss, may I ask, do you have an infection? I ask because (and he continued on to tell me he was the Director of a very well known eye care supply business) and I may be able to help,” he said.
I looked at him and told him I’d wait until he checked out and I would chat with him. I gave him my story in bullet points. He replied, “Has anyone talked to you about scleral lenses?” I explained NO, but this is the second time in the last couple of weeks that it was brought to my attention. He gave me his email and I thanked him for his professional opinion and concern standing in the middle of a random store in Rochester, NY.
When I arrived back to the Tennessee area I brought the term, scleral lenses up at yet another follow – up appointment. I was connected to an incredible eye doctor in the area and immediately called. When the doctor’s assistant picked up the phone I could hardly get the words out fast enough to give her parts of my story. She kindlylistened to every word, asked me detailed questions and said, “I think we might be able to help you.” If you are still following my story, you can probably guess, I cried at hearing those words I longed to hear for what felt like forever (at this point it was 2.5 years) and we made an appointment. I cried at the possibility of an answer that worked for me. I cried at feeling the sense of HOPE again.
Today, I use what’s called a plunger to take out a large plastic disc that literally never touches my actual eye ball. It literally vaults over my corneal surface and rests on the white of my eye creating a smooth, optical surface to correct my vision that is otherwise irregular due to the central islands. I put this large plastic disc (it can actually be called a prosthetic device) in each day, similar to a contact, but much larger. That’s where I am today, which is key. I can only process this journey where I am right now because if I loose myself too much in what happens when my eyes change naturally due to age or what if the eye health is affected I am overwhelmed. One day at a time.
My Red Bra Moment: I am FOREVER grateful for that day when I felt like I had NO strength left to keep searching to keep going to keep pushing . When I took all I had left, dug DEEP and somehow, someway mustered up the courage to choose. To choose the positive. To choose not to give up on seeking a solution. To put it OUT into the universe that I was DONE with everything else except for finding a solution that worked best for me. I wasn’t going to live the rest of my life in pieces and I knew that I was the ONLY one who could go deeper and make the choice, no one could do it for me.
It is my HOPE, my INTENTION and my MISSION now to share my story with anyone who wants to know more. With anyone who may be considering LASIK. Knowledge is power and if my story can help someone else, please connect us. I am also offering to speak with anyone who wants to talk about where they are NOW, if they are now on the other side suffering from complications. Please, my door, my inbox and my heart are all open. Watch Episode 37, right here.
No matter what you are going through, know you CAN get to a better place. I get it. It feels nearly impossible, actually, it feels completely impossible at times. The mind and heart are insanely strong and once you feel like you have nothing else, I’m here to remind you that you do.
You CAN do and get through hard things, but it is only you who can make that choice. Then once it’s made, don’t waiver, keep going – no matter what.
If you are still here, all the way to the end (it was a damn long one!) – THANK YOU for your time, for reading and for being here, you are SO appreciated.
Thanks for stopping by. We hope this story inspired you or someone you know on some level. We know it did us, please share away. Always wear that red bra underneath it all and make sure to join the party over @theredbraproject!
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Xx,
Renee & Shawna
