Open letter to I originally wrote the following letter below just to start an open dialogue with the writer and creator of the following blog called laughing at my nightmare which can be reached athttp://laughingatmynightmare.1000notes.com/. Due to no response I figured the author is probably overloaded with followers on Facebook. So I have decided to leave this open letter on my blog for him and his followers. It's a bit of a dialogue and it is real and beats around no one's curtails.
hello there, how are you doing? After reading some of your blog posts and seeing some of the press you get I have noticed you had stirred a little bit of a backlash from the disabled community. I have a form of muscular dystrophy myself called Duchenne.
I totally get where you are coming from about living your life as much as you can even though you face an inevitable demise. When I was about 19 years old I thought about my future battle with death. Even though I would to stay positive about things and do my best it always loomed on my mind. There was a point in my life where I was doing really good in college, I was talking to girls and feeling comfortable in my own skin. Then the summer of 2004 came.
I seem to have always been tired and my appetite completely died. So I went to the doctor and my oxygen level was not too good. They tried a breathing treatment and there was no improvement. My doctor then sent me to the hospital. They immediately put me on oxygen and did blood work. My nutrition was a complete mess so they gave me a nasal feeding tube to give me some nutrition. There seemed to be a little bit of a energy boost and a little bit of improvement.
We discussed the options of getting a feeding tube. At first I told him I wanted to try and keep up my nutrition for myself for a few days to prove to them I would be fine and they could stop pushing the issue. They gave me that chance and I just couldn't do it. So I decided on getting that operation to insert the feeding tube.
Now with any surgery they put you under with a ventilator. Now after recovery they took the ventilator out of my mouth and I could not breathe on my own. So they had to put it back. A few days later I tried again and to no avail. So I was finally asked the question if I wanted to receive breathing support through a tracheotomy and a ventilator for assistance or should they just let me go if I am unable to come off of life support if I am unable to survive.
At first I told them I wanted to die, I thought my future was over, I would never have that job, a beautiful wife that I come home to everyday and gives me a nice blow job. The thought of having kids and being there for them throughout their life went completely out the drain. Now keep in mind I couldn't talk at this time either so I typed all of that out to the doctors and my family. Now a few days went by and I really thought of this very thoroughly. One night there was this time that I felt really warm and lightheaded and it was like I was totally flipping out and seeing things. Yet I started to have the visions of the futures that could be ahead of me. It was the beers thing I ever went through and I don't even believe in modern religion I kind of go to the beat of my own drum. So I finally told them that if I needed to be revived to go for it. Then I would go ahead and get the tracheotomy.
The next day they took me off the ventilator that was stuck in my mouth for weeks. It felt so good to get that out. I was feeling good I got up in my wheelchair. An hour later I got the urge that I really had to take a huge dump. I also started to get a little cold. So I had the nurses put me back to bed. The nurse noticed I was starting to get really white. They put the oxygen monitor back on and it was slowly going down. I was getting really really sleepy, they were telling me to keep my eyes open. The next thing I knew I had this warm loving feeling surrounding me. It wasn't exactly a presence of another being what it was more like I was one with the universe, I felt a connection between everything in existence. I saw that everything and everyone was connected.
After that I woke up to a bright light and my vision was very blurry. However once my eyes settled it was just the sun and my family were surrounding me crying.apparently they were having trouble bringing me back to the living world. They could not get the tubes in properly. However the nurse stayed on top of me and gave me CPR the whole time. The pulmonary doctor said she was the reason why I survived. They also told me she was screaming and cursing at muscular dystrophy. Afterwards she was even crying and they would not allow her to work with me ain because she got too attached. Something that I am quite talented at doing.
However what I am trying to say with all of this was that it all gave me some insight. You do not need to worry about death knocking on your door. It is something that happens to everyone, the healthiest person in the world that is a all-star athlete and has massive orgies with some of the world most beautiful women can easily get hit by a bus getting a cup of coffee. So just do what you're doing and live your life to its fullest, but try not to live it as a dying man. Live it as a man that takes no prisoners, that laughs at his own misfortunes. You seem like a really awesome dude and you are definitely bringing lots of awareness. Just be careful because I've noted people are seeing you as someone on a tough road and talking about how you are inspiring. Yet they do not respect you as a man and a warrior that you truly are. People do the same thing to me telling me I am an amazing person and how I raised their spirits and inspired them. Yet I asked the cute chick out on a date and she will make some kind of excuse. I see where you are coming from even though at first I thought you were being a bit too morbid at times. Then I started to remember I was the same way. I just wanted to share this story with you and maybe be friends.
-Steve Catalli
