Rachel Mackenzlee
“I posted a TikTok wearing my regular prosthetic, the topic had nothing to do with having one eye, and got hundreds comments from people tearing me apart, throwing out accusations of me being on drugs because my pupils didn’t match and saying I had a stroke. “
Hey! My name is Rachel Mackenzlee. I am a Hairstylist, Interior Designer, Content Creator, and I also co-Founded the Fun Eye Fund. I grew up in a small town outside of Portland, Oregon. Losing my eye is such a huge part of my journey, but having one eye is just a tiny fraction of who I am.
I was 18 months old when I was diagnosed with retinoblastoma. It was a Friday when my parents had taken me in for a regular check up with my paediatrician, and only five days after that appointment my parents were waiting at the hospital as the surgeons removed my eye.
Growing up I knew that I was different. But it never even occurred to me just how different I was. I was able to do all the things that people with two eyes could. I was very active in school, I loved to do anything creative, and I even played sports (terribly, but I played them). My family was so great about making sure that I knew from a young age that I was fully capable and even though I may have to adjust or find ways of doing things that worked for me, I could absolutely do anything I put my mind to.
I was in the second grade when I first started getting bullied, that same year was the year my dad was diagnosed with stage 4 Glioblastoma multiforme: a brain tumour with no cure. The average life expectancy of glioblastoma is 12-18 months with only 2% living beyond 2 years.
Cancer was a familiar word in our house, I didn’t even realize at the time the ramifications this diagnosis would have on my life, my family’s life and I absolutely didn’t realize the change that would take place in my father’s. Being bullied at school was hard, but the last thing I wanted to do was tell my family. My dad was sick, and my mom was somehow holding it together, despite the fact we didn’t have much even when there were two parents with an income. My mom was supporting me on her own after my dad couldn’t work. They loved me so much I knew that it would crush them if they knew the things that the other kids were saying.
Two years after my dad’s diagnosis I went with him to his doctor's appointment. Up until this appointment, I knew my dad was sick, but it hadn’t even occurred to me that he wouldn’t get better. I didn’t understand most of what was said at the appointment, what I did understand was when they said his new life expectancy was 4 months.
As we walked to the car, tears were flowing down my face. I’ll never forget the look he gave me. He was so genuinely confused and asked, “Why are you crying, what’s wrong?” and sobbing I said, “they said you were dying; I don’t want you to die”. My dad’s response in that moment was burned in my memory and has shaped the way I’ve dealt with every hardship ever since. He smiled with a giggle and said, “And you believe them?”. My dad, who took MY cancer diagnosis the hardest, seemed so unphased but his own.
His fight was long and hard, I can’t even count the times we didn’t know if he would make it through the night. Yet, through it all my dad persevered. Not only did he live longer than the 2 years, he lived 12 years longer than he was told he would. At the time, it was the longest that anyone had ever lived with his type of cancer. It was just long enough to be able to attend my high school graduation.
Who I am and how I became strong enough to handle all that life has thrown at me is because of the strength and perseverance I witnessed in my parents. Losing an eye and the trauma that comes with it is something most people will never have to encounter.
While I wish there was a magic pill we could take for healing, the best advice I can give is to be real with yourself, really feel your emotions so you don’t have to revisit them, and give yourself some grace because you’ve survived and what you have overcome is already an incredible feat. Strong isn’t just something you “can be” it is something that you become.
I was 26 when I had my second implant surgery. The implant I had received as a baby had started to shift and needed to be replaced. The surgeons had assured me that after the procedure my next eye would be even more realistic.
Eight weeks after the surgery I was beyond excited to get fit for my new eye. I went to my ocularist and was informed that the implant used was too large and took up the majority of my eye socket which left very little room for the ocularist to work.
When I saw my new prosthetic, I felt my stomach sink into my feet. My eye wouldn’t even open, the eye was completely bulging from the socket. Not only did it not look better, but it was bad enough that it was the first thing people noticed when they looked at me. I went in excited to finally have my eye back and left feeling utterly defeated and broken.
Prior to this surgery I had had minor moments of self-consciousness, but this was different. I had bypassed being self-conscious and landed face first in self-loathing. I didn’t recognize the person in the mirror, and I sure wasn’t very nice to her. Until eventually it wasn’t just that I didn’t like the way my eye looked, I had convinced myself that I didn’t like anything about me. A whole year went by with these feelings of self-doubt and destructive thoughts.
Right as I was in the pit of my emotions, I got a Facebook message from an old coworker. “Hey Rachel, I just wanted to reach out... My cousin's daughter Gracie was just diagnosed with retinoblastoma. You are so confident, and I was just hoping that you could talk to her mom and let her know you survived and that everything will be ok?”
I felt like an imposter. How is it that the world thinks I’m confident and ok when I truly feel neither. I clicked the link to take me to Gracie’s Moms Facebook page. I saw the most beautiful picture of this tiny little blonde girl wearing a flower crown. I couldn’t imagine living in a world where she may grow up and feel the same way about herself as I felt about me. I knew at that moment that I needed to not only help Gracie, but I needed to find a way to help others who have lost an eye, including myself.
Over the years I've stayed in contact with Gracie and her mom, and in 2018 I started an Instagram support page so that I could share peoples’ stories and I could help others see that we are not alone. I spent days, weeks and months searching every hashtag that had anything to do with eyes just to find more people with one eye so I could show them the community we had created with this page. So many people that I connected with felt so alone and had never even run across anyone missing an eye. It eventually went from sourcing people to share their stories to having hundreds of people with one eye reaching out to have their story told.
A couple years into this process I was feeling like me again. I was still unhappy with the way my eye looked but I had learned to love myself through it. I had always loved the idea of wearing a prosthetic that was intentionally different from my healthy eye. Something about the fact that I would be able to just own it rather than hide it felt so freeing to me. The problem was this was cosmetic so insurance wouldn’t cover them and many ocularists weren’t willing to make them. I decided it was going to be my mission. I was determined, and I was going to find someone.
I made an appointment with Christina King at The Center for Ocular Prosthetics in Portland, Oregon. It was time to get a new regular eye, and I planned on asking while I was there if she would be willing to try something creative.
Talking with Christina felt more like I was meeting with a friend. By the end of the appointment, I had finally worked up the courage to ask if she would create this “Fun Eye” for me. Not only did she agree, but she seemed just as happy to make this happen as I was that she could.
And so, it began I had my first ever “Fun Eye”. It was just like my normal eye but in place of a matching color iris, it was a 24k gold iris with small flecks of gold glitter. It’s hard to put into words the feeling I had wearing an eye that was purposefully different. My regular prosthetic was an ill match for my own, everyone who looked at me could tell. I would watch them uncomfortably looking back and forth between my eyes trying not to stare too long.
The biggest difference with this Fun eye is that I was the one who got to make that choice. I felt powerful, like I had taken back control. It didn’t just make ME more comfortable; it made others more comfortable and opened the dialog. No longer did people have to wonder what was going on with my eye. We could just have the conversation.
I posted a TikTok wearing my regular prosthetic, the topic had nothing to do with having one eye, and got hundreds comments from people tearing me apart, throwing out accusations of me being on drugs because my pupils didn’t match and saying I had a stroke.
I was so ANGRY at all the mean things people were saying to me. I thought back to that parking lot conversation with my dad and his response of “And you believe them?” and the answer was no, I didn’t believe them. Was I angry? Yes. But the way I felt about myself was unwavering. I posted a video response to one of the comments which in short said:
“I’ve read all of your comments and I am here to say, you guys are rude and just to show you that I don’t care... I’m not wearing this one anymore.”
In the video I removed my normal prosthetic on camera and replaced it with my loud, bright-shining, unapologetic Gold Eye. I didn’t know how people would take it and I didn’t care. After posting it I thought about how proud dad would have been of me and I was proud of myself.
The Video went viral, I had gained 200,000 new followers overnight. The overwhelming response solidified that I didn’t need to be afraid to be me. So many people were on my side.
My following continued to grow and Christina got more and more requests for Fun Prosthetics. I loved seeing people switching to fun eyes and experiencing the same healing that I felt. I thought that was all that it was, I thought that my part of the story was simply letting people know it’s an option and how good fun eyes made me feel.
That was until I found out Gracie had been watching my videos and they made an appointment with Christina. Her Mom let me know that Gracie loved my fun eyes and wanted one for herself. This little girl, who I was once worried would grow up and feel the pain I felt at my lowest, was instead going to experience this joy I had found through my healing. I was fortunate to be able to be a small part of Gracie’s story, and without even knowing it, she had become one of the biggest catalysts in mine. I knew that I wanted to help.
I decided I was going to take to social media and raise the funds to pay for Gracie’s fun eye. We only had 48 hours until her appointment and it felt like such a big ask to raise the money in such a short time and I was almost certain that I would have to find another way to cover the funds myself, but I had to at least try.
Within minutes of the video being posted, my phone was buzzing over and over. Not only were we able to fund the eye within 48 hours, we had enough money within a single hour of posting. By the next morning there was enough to pay for 3 additional people to get a fun eye.
It didn’t stop there. For weeks the generosity was overflowing. The amount of love and support that people were offering was like nothing I had ever experienced. Christina and I knew we had to find a way to make fun eyes affordable and accessible for anyone in the monocular community. So together we founded The Fun Eye Fund, a 501c(3) that does just that.
Christina and I often talk about how neither of us had the idea for The Fun Eye Fund, but it created itself. It was built off an ocularist who understood healing comes in many different forms, a survivor who wanted to do something nice for a little girl and by thousands of strangers were called to support and believed that we live in a world where being different and being beautiful can easily coexist.
For more information visit: www.funeyefund.com
Follow Rachel on Tiktok & Instagram: @rachel.mackenzlee
