"Life for me has never been easy. The first few years of my life were spent at the center of my parents messy and toxic relationship, which lead to a hostile divorce. I was forced to grow up quickly and had the responsibility of looking after my younger brother, as we were on our own. Things got better after my father got full custody of us, and mom remained in and out of the picture. I spent the first decade of my life dealing with the fallout of my parents relationship and the trauma I experienced being in the center of it all. By the time I was eleven I had already been through my fair share of chaos. I didn't know that life had more in store for me that would test my will to persevere and resilience. One day the right side of my right eyelid began to droop and I lost complete control of my right eye. I had always had vision problems out of that eye, but never anything that would suggest that I could have anything medically serious. We first thought it was pink eye, but we were wrong. After seeing specialists after specialists, a neurologist confirmed that the cause of what was happening to my eye was a due to tumors that were growing in my ear nerves. The doctor further explained that I had the same genetic disorder as my father. A disorder called Neurofibromatosis Type II (NF2), which causes tumors to grow on the nerves targeting the central nervous system and the spinal cord. I had inherited the same disorder that my father had been diagnosed with at the age of nineteenth, and left him profoundly deaf by the time he was twenty one. Two years prior to my diagnosis, my father had been hospitalized due to complications of a meningioma (a type of brain tumor) which had to be surgically removed because it was killing him. Needless to say my world was shook, and we were all left stunned to hear my diagnosis. Being so young i didn't quite grasp the seriousness or what it meant. To me it just meant i would eventually become deaf like my father and that I might never get the right side of my face back. I had my first surgery that same summer at the age of twelve to remove the tumor that had invaded the nerves inside my left ear. When I woke up, the sound of the world coming from my left ear was no longer what it sounded to everyone else. Instead I realized that what I could hear from my left ear resembled what the inside of a beehive might sound like, a never ending song of buzzing and ringing. I eventually learned that the beehive in my ear had a name which is tinnitus, and it was caused after they cut my hearing nerves to remove the tumor. The years that followed after my diagnosis and first surgery were an adjustment. Forget baggage, I entered my teenage years with a whole set of different types of luggage. I had to accept that I would never get my hearing from my left ear back. I had to learn to live with tinnitus, hearing loss, double vision, facial paralysis, loss of balance and most importantly with my diagnosis. Teenage years are so vulnerable, and self acceptance is so hard to achieve especially when you have a disorder that is damaging you physically, mentally, and emotionally. I wanted to be accepted desperately, and to be loved. Looking back at it now, I realize what I really needed was to love myself. That need and void I had led to getting involved in toxic relationships that mirrored my parents destructive relationship. It wasn't until my senior year that I began to understand what I really needed. It wasn't having a boyfriend, but to love myself. I needed to find joy in the muddled and rocky mess that was my life. In the mist of this eureka moment, I saw him. One day during passing period I saw a boy wearing a white t-shirt with some type of gargoyle on the front, blue denim jeans, and all black converse. He had such a serious face, that made him look rude even before you met him, his green eyes were just as stern but had a genuine softness to them that I had never seen on anyone else. It was the confident way he walked with his head held high and eyes forward without being fazed by the distractions, so sure of his direction, not just in the obvious going to your next class way but just in general, that made him stand out from the drove of students passing and bumping into each other. While most kids turned their heads to see if they could catch a glimpse of their friends or to exchange a few words with someone they knew, this boy didn't even bother looking for anyone. He walked where he needed to go without the need to waste time with anyone. He passed right by me, and even though my head turned to keep looking where he was headed, he kept walking with his cool mature confidence unfazed. Every day after that I looked for him, to see if I'd catch a glimpse of the confident boy with the serious face and stern but gentle eyes. I didn't even know his name. The universe decided to finally throw me a bone, and during my last semester I walked into my algebra class to see the boy was only sitting a few seats away from my assigned seats. We were eventually introduced by a mutual friend, who we only realized was a mutual acquaintance when she'd wait for me outside of class. As we got to know each other I realized that behind the serious look was a warm, light-hearted, and sweet kid. He had the ability to make me laugh even without trying, just one look and I was teary eye laughing. He became one of my best friends, and we finished our high school journey together sharing adventures with other lifelong friends. The last months and days of my high school experience were spent along side him, laughing, causing mischief, and making lifelong memories. It wasn't until after we graduated high school, and we were out one night with our friends celebrating his 18th birthday that everything changed. Our relationship had seemed to shift from friendship to something more in the last months, but it wasn't until that night that we both realized that there was more between us than just a friendship. I admit I was stubborn to accept it, because after all I had had my eureka moment only months before. I needed to work on loving myself before I could love anyone else. Something about him seemed so definite. The minute we became boyfriend and girlfriend that would be it, I was sure of it. There would never be another man for me, he'd be the person I'd marry. I just knew it, and it was a bit terrifying. I resisted the possibility of accepting a relationship with him, but eventually I knew I had to accept the wonderful gift the universe had given me. The possibility of falling in love with someone that made me laugh and made me feel special, even making me forget that there were parts of myself I would never get back. I felt like I was just a healthy eighteen year old girl with normal problems slowly falling in love with her best friend. I asked him if he wanted to be my boyfriend in a tiny cramped kitchen of our friend's house. After I said the words, his smile slowly transformed into an enormous grin exposing all his teeth, and his green gentle eyes stared into mine. We kissed, and that was it. I knew from that moment on there would never be another. It would always be him. We have been through many ups and downs since then. It's hard to believe that the high school days when we were just friends was almost twelve years ago. We have experienced so much together and individually since then, but always side by side. Just as I have moments that haunt me, there are moments that haunt him as well. I eventually learned that behind that hard look there is someone still weaving through the tangle of emotions trying to break through. But just as he has held me up when all I wanted to do was crumble down, I stand with him. Side by side, we are like two leaning broken pillars holding each other up, stronger together, and without one the other falls. That is what drew me to get these bracelets for us. We are both currently at a moment in our lives where we are both facing our own adversities. Just like my father, I now need brain surgery to remove my own meningioma that grew as a result of NF2. Meanwhile my best friend, who I now call husband, is battling his own type of battle. I will have to leave him for a few days while I have my surgery, and because of this pandemic we will not be able to see each other until I am released from the hospital. I hope he looks down at this bracelet whenever he feels lost and remembers that while we are temporarily apart, I am still with him, rooting for him, and loving him. I hope it reminds him just as I know it will remind me that he is safe, and he is loved. I will be his light in the darkness just as he has been mine. We are stronger together."
Story by VW Photography AZ