I am terrified of death. Quite honestly, I think it’s bullshit. The whole concept seems really bizarre to me. I don’t like it one bit. As you may have learned, if you have read my latest article “Two Years in an Instant” on Ghost Parachute, that most people with my disease don’t live past thirty years old. I just “celebrated” my twenty-seventh birthday last month. It makes me feel like my time is short when I already feel that time is short in general. It’s a frustrating aspect of life. A lot of people have tried telling me that there’s nothing to be afraid of because there’s nothing you can do about it. Isn’t that the worst? The uncontrollable and the unknown are classically feared. I don’t want to be afraid anymore.
What do I do moving forward? Do I bitch and complain about how short life is and hope somehow it will make me feel better? Do I scour the internet and the book stores and learn all I can about life, death and the afterlife and try to find some definitive answers? Maybe I simply just ignore it, realizing that since it can’t be changed that I shouldn’t change my life because of the inevitable outcome. I don’t know what the right answer is and I know there are a lot more options out there. I just need to reach a point where I can make it through a day where I’m happy and not in fear.
Is there anything you do to help you cope? Have you found religion? Do you follow science? Do you believe in the stories of near death experiences? I would love to hear your beliefs and opinions.
I find it humorous that I’ve become the one person online I get annoyed with the most, the blogger that never updates. There are countless webcomics that have long been abandoned by their artists and writers with no explanation as to why. This is me reassuring everyone that I’m not dead. This is me telling myself that I’ve still got things to say and safe place to write it all where people may or may not listen. Six months ago I made my last post and so it would be safe to assume that a lot has changed in my life in that time, so here’s the scoop on what has happened to me in the past half a year.
First off, I’ve been debating whether or not to share this information with everyone publicly, but I feel as though it’s healthy for me to express my thoughts on the subject, so here it goes. A few days before my birthday (which is March 2nd, the same as Dr. Seuss) I was diagnosed with a disorder called Dyskeratosis Congenita. DC is a very rare and progressive bone marrow disorder. If you research the disorder online, you will come to find out that there are currently 10 known genes that cause DC, however in some blessed miracle I won the lottery. I have the 11th gene. It’s a slightly surreal feeling knowing that you are the part of history in such a way. As of right now, I seem to be as healthy as I can be, but the disease has many factors that can lead to complications. Studies have shown that a majority of people with the disorder die around the age of 16, so I guess I should be feeling pretty lucky since I just celebrated my 25th birthday last month. Wearing a medical alert necklace has become a standard practice for me now. My own mortality is something I’ve often thought about and feared, but now that I know that I have something as serious as this, everything doesn’t seem as frightening. It’s oddly comforting in a way. It’s like I finally know something about the unknown. I suppose in my mind I view it as narrowing down my possibilities of dying. Even though that may be silly since I could easily get hit by a car tomorrow getting a sandwich from Subway or slip and crack my head open in the shower, I’m still comforted.
I also got into a small car accident in December, moved from my apartment, got hit with tons of medical bills and now I’m moving again. It’s been quite a ride.
Onwards to lighter things, I’ve started plotting out new projects and I’m pretty excited for them. I’ll be making separate posts in the near future for them individually so hopefully you’ll check back in.
Before I sign off, I just want to say that the one thing that’s strange is it just feels like everything has been dormant inside me for so long and I’m just now waking to all of this energy. Maybe it’s the diagnosis, maybe it’s just the timing of everything in my life. Let’s hope this energy sticks around.