Thomas Mejia knew he had a brain abnormality 8 years ago, but due to lack of insurance, he left it unchecked. He never anticipated after those 8 years, he would not only find out he had one AVM, but two; plus a chiari brain and an aneurysm! Thomas is The NeuroNerds Patreon Donation Spotlight for this December and we are celebrating and supporting him by sharing his story below and donating a portion of our Patreon proceeds to support his final surgery and recovery. Details on how to support him at the end of this post. Now read on and be amazed by Thomas’ perseverance and bravery!
Thomas, pre AVM craniotomy surgery.
About eight years ago, I was skating down Bedford Avenue in Brooklyn, New York when a car ran a stop sign and hit me. I flipped three times in the air and landed on my back, slapping my head onto the concrete. To make a long story short, I eventually ended up in the hospital to see if there was any damage. Assuming that I was fine, I cleared it with the nurse and went home. Later that evening they called me and said they had found something in my brain. A curved linear growth of three quarters of an inch in the left region of my brain.
To make a very long story short, 8 years passed by without me doing anything about it because I was without insurance. After moving to California and being a part of the Union and having insurance, I decided to finally take advantage of it. After my first visit with my doctor, the same abnormality was found. They decided to do further testing via MRI which I could never afford due to the insurance. It showed that I had an AVM. They said that it was inoperable and too close to my communication center which would then leave me with the inability to understand language or communicate with people. They decided to move forward with radiation instead.
While waiting on my appointment for that, I went to my old workplace and spoke to the people who were supporting me in my time of need and explained to them that I could no longer work and that I would have to undergo serious medical treatment. One of the higher-ups by the name of Lance called me into his office and asked if I could share my results with him and his friend who happened to be Dr N Patel, the world’s second best AVM surgeon in Boston. I immediately sent my records and it was shared with the doctor from Brigham and Women’s Hospital in Boston who explain to me that what I had was completely operable and that the doctors that were looking at me where inept at what they do for a living. He assured me he could operate on me with minimal risk and full recovery.
Thomas’ wife Nicole, family and his surgeon Dr. N Patel
I decided to change my plans and booked a trip on a train across the United States to head to Boston. A few days before the train ride, I was hit in the head with an empty hard plastic ice cream container which then began to give me severe headaches. Now, I was used to headaches for most of my life which I now have come to understand were migraines, but these headaches were different because I could not get rid of the pain regardless of what pills I would take or how much rest I would have. I called my doctor and he told me to hold on tight because I was on my way to Boston anyway. We hopped on a train and it took four days to reach Boston. When I finally met with my doctor face-to-face after my results were in, he was in shock that I was able to even stand and talk to him because I had apparently been hemorrhaging for 11 days. According to my doctor that was the best news. My test also showed not only that I had a massive stroke due to my 11 days of hemorrhaging, but they also found a second AVM in my left hemisphere, a chiari brain, as well as an aneurysm behind my right eye. The doctor recommended that I stay in the hospital, but I opted to go home and spend time with my loved ones.
Thomas, post 3 craniotomy surgeries. One more to go!
Thomas’ right eye post surgery.
My surgery date came and after about five hours of surgery, they stopped. The next day was a day of rest and on the following day we continued my surgery, but it turned out to be an 18.5 hour surgery putting me at a total of 23.5 hours in two days. They had removed my right eye a few times to relieve pressure while working on my aneurysm and once they were done and sewing me up they told my family that I was almost done, but of course I wasn’t. My aneurysm ruptured which then led me to the 18.5 hours.
Unable to to reach the aneurysm in the existing craniotomy they were forced to remove and detach my right eye in order to reach my ruptured aneurysm. Simply put, they saved my life multiple times in a 24-hour period. My eye was reattached, but since I’m missing the bridge it moves and bounces with every heartbeat or movement of my mouth. Because of the sheer amount of time under the knife, they decided to wait to try to fix my other AVM on a later date which brings us to my present moment. I am now only a few days away from my fourth brain surgery and hopefully a properly placed right eye.
Thomas and Joe with their pups after his interview on The NeuroNerds podcast.
This past November, Thomas was interviewed by Joe on The NeuroNerds podcast and read the following poem during part two of that interview. Read it below and listen to him read it here (listen to the whole interview, but the poem is right at the end if you want to hear that first) – http://www.theneuronerds.com/ep-41
Hit Me With A Car And Saved My Life
A poem by Thomas Mejia
I guess the hardest thing is not having anyone to talk to. I know you’re reading this and thinking to yourself that you would be the one. That you would be the one to take the time. And I wholeheartedly appreciate that and believe you, but the truth is to me, how do I sit someone down and truly tell them that I do not want to die.
Who’s feelings do I have no regard for? Who am I willing to put through such a hopeless ordeal?
I only sit here alone and contemplate it. My dog is here and she truly loves me and I consider her to be one of my only friends, but even she, with her unconditional love cannot carry me through this burden. In fact, no one can.
Though there be tens, hundreds, thousands, maybe millions of volunteers, at the end it is only you that can carry it. And the fucked up thing is, every single one of us is going to have to do it. It just means nothing to you when it’s not your turn. But when it is your turn, there’s nothing that can take your attention away from it.
I must say that before I went in for my three craniotomies, the idea of dying was more artistic. I guess you can say, more obscure. I imagine dying or living are easy choices, but the inbetween is what has gotten to me. Unable to know if the things I do today are futile. Afraid that if I do futile things with my time now, I will regret them in the long life ahead of me. Lost in purpose. Unable to commit and willing to commit to either side. Eagar, I daresay. Funny. I lived day in and day out with debilitating headaches and migraines. And nowadays, the slightest pressure in my head sends me off into a creative chasm of despair and worry, understanding and acceptance and thankfully, repeatedly left unappeased.
I don’t want to face my maker right now. I don’t want everything to make sense. I don’t want the veil to fall. I just want to rest and feel at ease. Be peaceful. Left alone. Not that I shun my creator. I embrace my creator more than I ever have, I just don’t want to leave here yet.
Eternity, if it is that long, can wait a lifetime for me to arrive.
Honestly, I write these words boldly, but truly I’m helpless. As helpless as I was when John Enciu used to grab me and smash my head into the porcelain sink while at private school. I guess my situation makes death into a bully. Like John, always around the corner. Never knowing when it was going to happen, but knowing it was going to happen.
Today? No. Tomorrow? Maybe. Fuck you Thomas!
How about right now? How about right now, right now while you’re having the first good moment in weeks. Right now, while you’re laughing. Right now, while you’re dreaming about the things you can do. Right now, when your ego slips right in.
To continue to follow the Thomas’ journey, follow him at @tmejia111 on Instagram. Support his last craniotomy and recovery through TheNeuroNerds’ Patreon during the month of December and a portion of the proceeds will go towards his GoFundMe! You can also support his GoFundMe directly HERE. Connect with Thomas and more stroke and brain injury survivors on the YouSoRock Facebook Support Group at https://www.facebook.com/groups/yousorock.
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