This is my letter to @taylorswift and I hope she can see it. I’m disabled with a brittle bone disorder & epilepsy, I’ve been through so much and just her reading it would mean the world. I need all my Taylor Swift friends to help me get this out there! I made a Tumblr just to get this done and to join in on the fun!
I’m sorry for all the run on sentences and grammatical errors you’re about to read, I’m typing this quickly and from the heart. I’m really a much better writer than this will suggest. My name is Sean & I am a probably one of the biggest fans of Taylor and I pray that my letter comes across as genuine as I mean it. To start I’ll tell you a bit about me, which number one thing is to know, I am severely disabled. I was born with something called Osteogenesis imperfecta or simply OI, OI is a brittle bone disease that is usually passed on genetically but can sometimes be spontaneous mutation and in my case, my biological father had it as well. I had my first fracture when I was two weeks old and to date have had well over 200 of them. All throughout growing up I was in and out of hospitals, three major surgeries to put titanium rods through a few bones, I was in a double blind drug study and was diagnosed with asthma, sleep apnea, scoliosis and more along the way. It was rough but to be honest, I became very used to the medical side of things, it was my personal life that wore me down.
When I was a child I was bullied severely and it never has truly stopped. I was beaten up, threatened, picked on and since an early age, I developed depression, by the time I was 10 I had already attempted suicide. I had no real outlet for my pain, I couldn’t go out and “play” so I sat, festering in the horrible thoughts my mind kept producing, it really was a scary time, looking back. Around the age of 12, I started getting into music. Unlike most of the people who view music as a fun past time, I saw it as an escape from reality where I could feel a sense of normalcy, to live in another world and then bring back some peace of mind to figure out the problems in my own life. In music I wasn’t in a wheelchair, no one hated me, I could do anything.
Music was and is one of the only things that make life worth living, driving me to be creative and actually allowing myself to get better hand-eye coordination, amongst other physical things.I remember as I got older listening to Taylor’s first record, I really dove into headfirst - it came at a time where my personal life was crumbling even more, I had graduated high school, couldn’t find work and was realizing that the bullying aspect of my childhood wasn’t going away but merely adapting to the outside world in the form of pure bigotry. I played that album all of the time to escape when I discovered it I was actually, again, contemplating suicide, I started it up and immediately remembered what creativity could do. Since then I’ve been a die hard fan and I have found myself really surviving from the inspiration she gives me. She not only stands for what her music says, but also never shies away from defending all who need it.
Now what I am about to say is what happened to me in the last two years, it was very scary and I’m lucky to be alive.
In March of 2017, I suffered two grand mal seizures without any prior history of epilepsy. I went into complete respiratory and cardiac arrest, was transported to the hospital and awoke with no knowledge of who or where I was. The emergency room doctors didn’t believe it to be a seizure and twelve hours later, I had another that was stronger than the first. These seizures, mixed with my brittle bone disorder, caused four broken bones with two so severe I required emergency reconstructive surgery. The second seizure also put me into cardiac and respiratory arrest where I was without any brain activity for two minutes. I was on life support for two weeks and now after the surgery, I’ve lost most functionality in my left hand due to extensive nerve damage. I’ve already spent my life in a wheelchair and now most of what little I could do on my own has been stripped from me.
I spent six months in a reclining wheelchair unable to move, lost my job and apartment and sold off everything I have to try and pay off the tens of thousands in hospital bills. I had no insurance when it all began and when I was approved for Medicaid, they wouldn’t cover all of the past costs, neither did they cover completely any of the new ones. I had nothing left of myself and depression had come back tenfold. I felt worthless and a drain on my family, no longer able to really do anything for myself. Now eventually I did regain some independence, getting back in my wheelchair and being mobile, but still unable to work, make a living or do half of what I used to. It seemed like things were finally on the upswing.
February 5th, 2018, I went back into the hospital after having a petite gran mal seizure caused by influenza A. I was admitted with a severely high carbon dioxide level and was put on an oxygen mask. That night, at 2:04 A.M., I again went in complete cardiac and respiratory arrest. My family got pulled away and they were told I had no pulse, the nurse wasn’t hopeful, and the doctors thought it finally was over. Miraculously I was revived after 4 minutes being lifeless on the hospital bed. I woke up two days later with a breathing tube down my throat like before, I had multiple bone fractures and was kept sedated and under heavy pain medication. Doctors worked hard to figure what if anything could bring me back to normal, not even knowing if I’d even be able to speak again. By another miracle, I came off the ventilator with full cognitive function, all that remained were the bone fractures and fear of more seizure activity. I now have thousands in debt and can’t work, I’m trying every day to make it better and I can say without her work she does to keep me inspired, I would not be here anymore. I’m living off of my GoFundMe which is here bit.ly/seanshealth .
I can no longer really play guitar, which I did for ten years…with the extensive nerve damage, the layout of the neck for me just doesn’t work. I create in any way possible because it’s so important to me, it’s something people don’t understand is so important to me, but it really is. That’s why I wanted to reach out to you and thank you. Taylor, for the work she does. The world can be beyond cruel, so many people don’t care at all for the wellbeing of others and finding your place in the mess is a challenge, she gives me that focus and inspiration to be okay no matter what. I would not be alive without her work and that’s a fact. Most people would find that pathetic but inspiration is an inspiration.
Due to the epilepsy diagnosis, I know I can never live out my dream of seeing her live, the lights are no longer anything that I can handle. On top of that because I can’t work and my massive debts, I don’t own any of her music/items as I can’t afford them, nor do I think I’ll ever be able to live out my biggest dream of meeting Taylor. It’s a sad truth that I’ve had to come to terms with but I thought passing along this letter may be my one shot to get my message across and maybe make some friends in the process.
I suppose all in all I am just saying thank you to her for everything, for making me believe in myself, for making the world a better place with her work. I know firsthand of the darkness this world can cast but it’s how we react and how we treat others that can define us. I know so many people share my sentiments and I hopefully speak for everyone when I say thank you to her for saving lives, for being who she is and I hope to realize my only dream one day of shaking her hand but most importantly, just knowing she may have heard my story is great enough… I hope everyone knows the impact everything you do can have on one person. I will continue to fight on.
