To Those Going Through a Craniofacial Journey: It Gets Better
During any journey many moments can seem dark, but knowing things will get better can give you strength when you need it most. I’m here to tell everyone, children and adults alike going through a craniofacial journey that with strength, understanding, love, and support I believe you will come out on the other side better off in every way. My family was told that I’d be deaf, blind and mentally challenged. Now here I am at 29 years old, telling you my story. The only thing the doctor who made those claims had right was my vision, and he was only half right. So I’m here to tell you that if I can overcome the medical and emotional trials and tribulations that came with my journey, I believe you can too.
I was born with what has always been called a severe craniofacial condition: an extreme cleft palate and hypertelorism. Most reading this article have probably seen or read “Wonder” and know the story of Auggie Pullman, a boy born with Treacher Collins syndrome. Though my condition was a little more complex in some areas, to say I could relate to “Wonder” would be an understatement.
My diagnoses included: No bone structure in my nose, which meant I had no nasal airway. I had a severely underdeveloped left eye and the casing of my brain was collapsing. And because of my cleft palate, my jaw was severely misshapen. It was like a V as opposed to a typical jaw, which is more U-shaped. This meant if I didn’t go through the years of orthodontic work and eventual surgery, my teeth would have clumped together in such a way I’d have lost them by the time I hit 20 years old.
When I was born I was immediately transported to Cornell University Medical Center where I had a tube put in my neck to help me breathe. When they got my breathing stable, they took account of the rest of the issues caused by the craniofacial condition. I was lucky enough to have Dr. Gregory LaTrenta as my doctor for the first few years of my life; a doctor who literally held my brain in his hands during an operation. A doctor I wouldn’t be here telling you this story without.
It took me years to understand what was going on. It was just a part of life. Going from Cuddebackville, N.Y. to New York City all the time and getting poked and prodded by doctors was just a part of life. Surgeries were just a part of my life. What? Didn’t everybody live this way? No? Everybody wasn’t completely blind in one eye and partially blind in the other? Smelling? What was that? I didn’t miss it or anything else because life was good. Why miss what I never had?
I had a large supportive family including parents, my grandmother Mary and PaPa Jim, who were all my rocks. I went to a regular elementary school and had no problems with anybody because I kept to myself for the most part. Even if I didn’t know it at the time, everybody liked me. I was nice to everybody, but unless someone talked to me, I more or less kept to myself until third grade. I was shy and because of my appearance I thought if I went up and talked to other kids it would make them uncomfortable. Even at a young age making people uncomfortable was always my concern. Before I started kindergarten, my parents made a videotape of me and sent it to the school. They showed it to the kids. They later showed that same video to other schools as I entered middle school. I heard all about the video growing up and it was a great way to introduce me to my new classmates, although a little awkward at times.
Ironically, the only place I ever felt dejected was at a camp for the visually impaired. I thought it would be a great place to meet people because everyone had vision disabilities and nobody would care about my appearance. One day at lunch, a girl who was completely blind asked a monitor nearby if it was true that someone looked “like the elephant man.” That stung. Then to top it off we were given a lesson about how to walk around a mall and I was told to meet them at a spot, so I did. They met at a different spot and actually accidentally left me at the mall. Needless to say, I didn’t make it a week at that place. I wanted to go home.
I had family, a few good friends, and an obsession with professional wrestling that still exists today. It took me a while to get over the negative camp experience and to be able to explore life outside my house much. For a period of time I was one happy kid in my little bubble.
After seeing Dr. Latrenta for a few years, and after various long, risky operations on my head, Dr. Latrenta told us he was going to be changing his specialty. I will never forget all he did for me. After a year or two of looking around and going to a few different hospitals, we ended up at the very hospital Dr. Latrenta graduated from, NYU Langone Medical Center. The hospital where I’d be treated for the next 10 or so years of my life. I met the head of the craniofacial team, Dr. McCarthy, and Dr. Grayson the head of the orthodontic team at NYU, and they did many procedures to help my quality of life. From orthodontic work to reconstructing my nose. They had their hands full. They took skin from my forehead, cartilage from my hip, and other things I’m probably forgetting about to create my nose. Watching Dr. McCarthy look at me, study me, I truly saw that he loved what he was doing and was like an artist preparing to create.
My misshapen jaw called for a lot of orthodontic work. I had braces, retainers, expanders, and God only knows what else done to my mouth. It was all worth it in the end, and I’m grateful for the orthodontist Dr. Grayson and his team who did my mouth work. Even if it may have occasionally felt like cruel and unusual punishment, it was worth it. I won’t lie and say everything was painless, but it wasn’t as painful as readers may think. If I’m completely honest, the worst physical pain was a Foley catheter. I won’t go into detail about what that is for your sake, but ouch!
Overall, the worst pain was emotional and mental trauma, especially after recovering from one specific surgery. I woke up with a blue wax-like cast stitched into my nose. I had to have it for a month or two and wasn’t sure how my nose was going to look, but to say I was excited to get that thing off was an understatement. That procedure was one of the final surgeries, but it was a big one so I assumed my nose would look even better when the cast came off.
After a few weeks of eagerly waiting with the occasional nightmare that the cast fell off in the bathtub and my nose fell off with it, it was finally time to go and get the brace off. I went into the room and a fellow, a student of Dr. McCarthy’s, snipped the cast in two places and practically yanked it off. It stung just a bit as you can probably expect, and it wasn’t done gently. He practically shoved a mirror in my face and I felt the wind knocked out of me. The bone structure and everything was still there, but the skin from my nose was gone. I felt like I was in a horror movie and Freddy Krueger tore my nose off. They said it needed to air out and relax for a few weeks or something along those lines. The rest of that visit is a blur, because I couldn’t stop breathlessly sobbing as my mother hugged me.
I felt like a monster. The fellow was about to lead me out of the room after the appointment to wait to see Dr. McCarthy who hadn’t seen me yet and the doctor wanted me to wait in the waiting room with no bandage or anything over the exposed nose. I already knew people stared at me on a good day, which doesn’t bother me anymore. Instead I am eager to get asked questions. I believe that answering questions helps educate people who have no idea about what happened to my face. Plus it prevents them from coming up with their own reasons and I’ve heard some doozies. But at that point I was not in a place where I could accept being stared at, and the waiting room was full of little kids and I didn’t want to scare them. Knowing how I felt, my mother spoke up for me and demanded I have a gauze or something to cover it. Despite the appearance, Dr. McCarthy was happy with the way it turned out and said the next surgery would be one of the last big surgeries on my nose and after that would be fine tuning, but apparently things were going to plan.
During the time that the skin was off my nose, I did my best to avoid the world, but still had to face my family. My cousins all acted like everything was fine, and we went on playing video games and watching wrestling like nothing was different, but I was genuinely nervous about how the outside world would react. A month or so later, I finally went back to the surgeon, and we prepped for the final “big” nose surgery.
They needed to cut my forehead to make a flap for the skin on my nose. I once again came out of surgery, and instead of a nose, this time it looked like someone was playing with Play-doh and just plopped it on my face. It went from my forehead to my nostrils. It wasn’t perfect, but it was at least getting better. The real progress was during a “minor” surgery four months later where they took the skin flap and shaped it, and I finally had a nose. For the next year, every four months was another minor surgery where my nose was further shaped.
In between my nose surgeries, I had my mouth worked on and after years with braces, retainers, etc. and almost eight years of the discomfort, I was really getting tired. It says something when someone has surgery after surgery and handles it like a champ, but cries like a baby in a dentist chair. All of the dental work was leading up to a surgery referred to as a Lefort 1. They surgically broke my jaw and screwed a device into my skull and the roof of my mouth to reset my jaw in the correct spot. I didn’t care how it looked, but what I did care about was the discomfort. I had a mini fridge in my room for drinks during my recovery. One night I had a towel on my floor and went to pick it up. When I bent down and pulled, I didn’t know it was stuck in the door of the mini fridge and the door flew open and hit the device sending pain radiating through my jaw and forehead. At 21 years old I am not ashamed to say I sat in my bed literally rocking as I cried in pain. Once the device was off and my jaw was done, I was eager to see what was next.
A few months after all my nose procedures and a month or two after my mouth was done I had a meeting with the team. They told me that with every surgery there is a risk of losing the progress already made and they thought it was time to stop. Looking back I am pretty sure there was more to the story, but that was that. Even though I felt incomplete, and I still to this day wish I had more surgeries done, I accepted the finality of my surgeries. They told us they could continue, but wanted to make us aware of the risk. I knew the choice was already made for me. Even if the decision wasn’t technically made for me, when you tell someone who went through so much to get where he was that he could lose all the progress, it puts the fear of God in him. So I accepted that even if I didn’t necessarily feel finished, it was time to put the operations behind me and figure out what was next. If later down the road opportunity knocked to improve things further I won’t lie and say I wouldn’t consider it, but for the time being it was time to move on.
I started college but after a two and a half years, stopped when my grandmother had a massive stroke. My mother and aunt worked a lot, so I cared for my grandmother when they weren’t around. After all her years taking care of me and being by my side during surgeries, it was my turn to help take care of her. We all lived very close. Literally down a dirt driveway from my house was my grandmother’s house, so it made “running away” easy when I was little and mom or dad grounded me. I was grandma’s boy and proud of it.
One night about four years after grandma had her stroke, Mom offered me the night off to relax. I accepted the offer. I went back at 8 a.m. the next morning so my mom could go to the gym. The first thing I saw when I walked in was my grandmother turned over in her wheelchair on the floor. I tried to lift her up and looked to the left and in the bedroom was my mother, unable to speak or move. She was having a stroke. Doctors told us she wasn’t going to make it and told us to say our goodbyes. Years later she is still with us and is walking. She still struggles with speaking and impulses, but she’s still with us.
Caring for Grandma was rewarding, and it allowed me to work on my passion for writing. R.L. Stine, the creator of “Goosebumps,” was the reason I started writing. One day going to and from my grandmother’s bedroom I opened my laptop and happened to spot a Facebook post by R.L. Stine announcing he’d be at a writer’s conference across the country in Colorado Springs. Usually I’d think I couldn’t do it for this reason or that , but within an hour I got a sitter for my grandmother for the days I’d be gone, I bought the plane ticket, and I was set up to take my first trip alone… on a plane across the country. I was petrified from the moment I bought the tickets. That April I was off to attend the Pikes Peak Writer’s Conference.
I had never gone anywhere without someone I knew by my side, but I did it. I called the airport ahead of time and got special assistance assisting me to each gate because of my vision. Without that help, I’d still be wandering around an airport somewhere.
I was able to meet many other writers that weekend. They call writers a tribe and that is a great way to describe us, because when you meet other writers, it’s like meeting long-lost relatives. On the first day of the conference I was walking down the hall and walking toward me was the R.L. Stine. The creator of “Goosebumps.” A God of writing. The man who is the reason I started writing in the first place. I was split. Do I just smile, nod and walk on or do I say something? I found my voice, stopped him, thanked him and told him he was the reason I was trying to become a writer. It was so fulfilling being able to tell him. If that were the end of my interaction with him I’d have been content, but then that day I was in line outside the ballroom waiting for lunch. The conference organizer came over and asked me to follow her. She put me right at R.L. Stine’s table for lunch, and I actually got to talk to him and listen to him and his wife, an editor, tell stories about their careers and life together, and I felt very at ease. Not starstruck, but like I was talking shop with a fellow writer.
That weekend when I was standing outside waiting for the cab to take me back to the airport to go home I smiled and said to myself “I’m a writer” and for the first time I felt complete.
My grandmother passed away this past July. After caring for her for about nine years, I stood at the grave and said my goodbyes. I promised her that anything and everything I have achieved or will achieve is because of all that she taught me, and I meant it. A few months after she has been gone I’m still trying to find myself. I’m still a work in progress and am struggling with weight loss, but am working hard at fixing that. The big thing right now is trying to find work in writing.
I have a complete small town psychological thriller that is a start of a series and an autobiographical novel based heavily on my life in the works. Neither have been picked up by any agents or publishers but I’m hopeful that they both will. Maybe even on TV or movie screens someday. I am the most self-deprecating person you will ever meet and even I have to give myself credit because both books have serious potential. While I wait to get my books picked up and published I’m hoping to find a job in writing online or a job that pays you to write while you travel. Or even better a job writing for the WWE in some capacity.
Trying to find a paying writing gig is hard, but finding a good one is like finding a needle in a haystack, so I have to be rational. If I can’t find a job in writing anytime soon I’m at least hoping to get a 9 to 5 job to gain some income while I work on achieving my dream of becoming a published author and getting a place of my own. I’m confident that it is only a matter of time before you see my name on bookshelves. I am also seeking out filmmakers on the off-chance they’d like to help me turn my story into a documentary.
From a very sheltered boy who was predicted to be deaf, blind and intellectually disabled, to traveling across the country alone to meet my idol, to writing a psychological thriller and caring for my mother and grandmother, I am the perfect example that you make your own destiny and that with dark there is light soon to follow.
When I was 16 or 17 years old and my days at NYU were coming to a close, I saw young kids starting their journey, and parents trying to hide the nerves racing through them. I have always wanted to tell them that it gets better. I hope this article shows them just that: things will get better. So anyone going through a craniofacial journey, or any journey for that matter, just hang on, and keep going.
It gets better.
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