Friday, July 11, 2014

A memorandum of Adam Cole

10 years ago around the beginning of July my life had completely changed. I had survived a near-death experience and I ended up requiring mechanical ventilation ever since. On this 10 year anniversary I thought to myself that I was happy to be alive and inside I was celebrating life. However I did not know what would happen until the day I always feared would occur, happened on July 10, 2014.

Instead of celebrating life I would end up mourning the death of my older brother Adam Cole. Like myself, Adam was diagnosed with Duchenne muscular dystrophy. Since he was older he dealt with the progression of the disability before me. I would see him progress and I would know I would follow that same path. So I looked up to him as a role model when I was young. We both shared many of the same struggles, in some ways we also differed in progression.            

Adam was the type of person that would show no fear and would give it no quarter. He could be one of the most caring people for others and at times he could be a bit awrny and only want things his way. Yet when it came down to the nitty-gritty he would take a bullet for anyone that he loved. Adam had the ability to watch others do things and by watching them he would live that moment as if he were the one doing whatever it was. His sense of humor leans towards one-liners, witty comments, and pulling pranks on others.

Adam was an avid gamer all throughout life and was also a lover of movies and television. He also had a major love for watching wrestling from the first time he ever saw it until his very last days. We shared many of these hobbies when we were younger and would soon find our own niche and I would play and watch different things then he would. Which as we became older I think we both felt a bit of shame that we did not enjoy each others company as much even though we were so close and always around each other. Yet we did have many good times together, whether it was going to a Metallica concert or just drinking together and talking shit about each other in fun. Sometimes out of anger, but that is a thing all siblings do.

Adam was a true inspiration to me not because he dealt with the cards that he was dealt. What he inspired in me was the will to figure things out and find a different way to do things with the cards that we were both dealt. At a very young age was when this occurred by watching him make adjustments as he got weaker and I was still ambulatory. The thing for me was the things that he did and not the things that he just had to deal with.

The last few years Adam has gone through a hell of sorts by struggling with the fact he would have to give up one of the things he loved and gotten much pleasure from. He would have to give up eating food and it was something he completely struggled with. Throughout my own life I have learned to be straightforward about things and just deal with it, while Adam was going through the struggle of not being able to eat I could be a bit harsh and tell him to just deal with it. I also did this because I know the younger Adam would have done it with no remorse and show the most strength when it was at its lowest.

Adam is more than a brother to me, sometimes he was a role model and in other cases a teacher whether he knew it or not. Due to the fact we dealt with many of the same adversities we had things we dealt with that other siblings might not have ever experienced. Yes sometimes I thought he was a absolute pain in my ass on occasion but I still always looked up to him and I always will. Before his 33rd birthday he was in critical condition and there was concern he might not make it. He pulled through however and came home and it was nice to celebrate another year with him. I just wish I could've known it would be his last, I would have found a way to make sure he had the best time he ever had. Although he would still say that MDA camp was the time of his life knowing him.

I feel now he is free of this earth and is now free to roam this universe yet with a constant eye on those he will come across once more. No one ever truly leaves anyone behind because everyone will always live on inside our hearts. For those that you hold on to and cherish they will always be immortalized in you and Adam will forever be with me.

Saturday, June 22, 2013

Open letter to Laughing at my nightmare!

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

Sunday, February 17, 2013

Universal dreams



No matter who the person is, we always look up into the night sky and look at the stars. It makes us think of our place in the world, we think of the vastness of the universe, we find a particular star and make a wish upon it, we dream about putting our arm up and grabbing the stars in a sense of reaching for our dreams. Many cultures have worshiped the stars, built monuments in unthinkable scale, to line up with a particular constellation with perfect accuracy. The cosmos brings out our hunger for exploration, it gives us a spark to want to learn and understand.

The universe has always been my faith, it inspires me, yet it makes me humble. I love the feeling of being so small in comparison yet feeling I am a part of it, thinking of it, trying to understand it. It shows out of random chaos, beautiful and unthinkable things happen. Out of dust and molecules, great and unimaginable things happen. I like to compare it to life that no matter how bad and ugly things can get, there is always a chance for great things.

I find it to be so inspiring, that we discover more and more things about the universe that surrounds us. Not that long ago the thought of there being other planets around all those stars to be something rare, it turns out planetary systems are actually quite common. More and more planets are discovered all the time.

One day I feel we will bump into another civilization, a civilization that just like us started by staring up to the stars, and being enchanted with that sense of wonder. At the moment traveling to these new worlds seems pretty much impossible. Some of our mainstream scientific theories pretty much make it impossible. However to me it always seems the impossible always end up being quite possible. As long as you are willing to push yourself, your boundaries will always break down and open up new possibilities.

Currently as a society our addiction to green paper, and our sense of instant gratification that is burned into our skulls has gotten in the way of our dreams. Buying valuables, and getting the newest iPhone to satisfy our hunger for new things in which we put this idea of value into. We are wasting money on war and death, fighting over resources, abusing said resources, putting value on food and water, people's right to shelter and warmth. Putting this fake value on everything yet we are finding less and less value into the sciences that involve space exploration, understanding the universe, and doing what we do best which is the impossible. Which in a sense it is a bit ironic, because these resources that we burned through at the expense of our environment, these metals in which we base value on, that are finite and will run out, but then we start cutting off the possibilities of getting said resources in massive quantities from asteroids where there is no environment to destroy.

It is nice to see two companies that started up recently that plan to mine asteroids and meteors in their future. I think we really need to all push these sorts of adventures, the development of spacecraft and the research of new technologies into different forms of propulsion and energy production have benefits way beyond their intended goal. The original Apollo missions created so many things in which we use today, and created the framework for the technology we use today.

If there is any investment to the generations of youth, to society in the future, to our grandchildren, our great-grandchildren and so on, it is the investment into the unknown and reaching for the stars we always dreamed of. We are part of a vast universe, filled with the most beautiful and breathtaking sights and sounds, objects, and things we could never even imagine. Our destiny is the stars as well as our future, pushing these boundaries will not only ensure the survival of our own planet, it will reignite the flames of exploration we all strive for deep down, it is also the best way for all of us to come together, to understand ourselves, and make reality out of our dreams.

-Steve Catalli

Wednesday, February 13, 2013

state of my union


State of my union


                When it comes to politics, I do not take any sides although I tend to bash Republicans more frequently. Me personally I think our democracy has become a joke compared to what it was supposed to be. It has become polarized and turned into a game of manipulation of the populace, public office has become a career instead of a civil duty. Corporations have taken a hold, lobbyists have spread like a cancer, and the dream is slowly becoming a nightmare.
                Our monetary policy has been put in the hands of a private bank called the Federal Reserve, our foreign policy has turned into a contest of measuring who has the bigger gun. Our infrastructure which was once considered to be state-of-the-art has become stagnant and out of date, yet our military has spared no expense. Not that I am against being able to protect ourselves, the soldiers that put their lives on the line are brave individuals and should be respected. However they should be rewarded with a country that holds no boundary with what it can achieve.
                I could go on forever with the things that are wrong with our country, I tend to do it a lot but mostly out of concern as to where we are headed. We are stuck with the same old ideas, and never any new solutions. I have always shared a few ideas with others about different solutions that I have come up with, that I would try to get implemented if I were a statesman or a civil servant. Which are the things I am going to focus on from here on.
                Our first main obstacle I see is the problem of career politicians, that usually tend to be law makers and lawyers, with a doctor here and a businessman there. Our founding fathers wanted people from all walks of life in public office. Our Senators and Congressmen, as well as the executive branch to be people who are scientists, teachers, engineers, farmers, business owners, doctors, lawyers, soldiers, builders, community organizers, religious leaders, philosophers, nurses, students, the elderly, the youth, the rich, the poor, everyone in between, so on and so forth. Having fresh ideas from all those different points of views would yield all sorts of ideas, not just the same old ideas, that have failed over and over.
                Not only do we need these fresh minds from all over the place, we need to get to the voting populace to learn about the people, and not worry about their political parties. In fact I think we should do away with political parties. What happens with our system of two parties, is anyone in the middle gets completely overshadowed, then you get two opposing sides that will not agree on anything or make much compromise. So many elected officials vote for issues strictly on party lines and policy, and less critical thinking for themselves, taking stands on their own grounds of morality.
                This is the 21st-century, the age of information and technology. People can literally access loads of information with a handheld device. This opens up so many doors for a democracy, it gives a chance for people to participate in self government in ways people could have never dreamed of 100 years ago or 200 years ago. We need to stop being afraid of changing things with the times. So here are a few things we should do.
·         Limit terms for all offices, including the Senate and the House, to just two terms just like the presidency
·         encourage people of all walks of life to participate in civic duty
·         eliminate political parties or at least their power when it comes to elections and debates
·         public funding for political campaigns where everyone gets the same amount of money, and allow no donations toward campaigns.
·         Leverage technology so people have access to information and more transparency than ever before



Another main issue that concerns me is our spending, I think we spend way too much money on defense. I think we can afford to slim down just a little bit and it would save loads of money. We do not need military bases all over the world. Ever since World War II other countries spend way less on the military's especially our allies, and let us spend all of our money to protect them. However I am not going to focus on this because I am no expert, and really am no armchair military genius or strategist.
Now a place where I have loads and loads ideas, comes with welfare, Social Security, Medicaid, Medicare, especially when it comes to the disabled. Which when people talk about these things they usually focus on children and the elderly, as well as medical expenses such as pharmaceuticals.
First I will talk about unemployment and people on welfare. We are currently in a job crisis where lots of people are unemployed. Our elected officials really just go with the two same answers, claiming that their solution works and the others solutions do not work. When in truth neither side's answers are actually working properly. That's why I like I stated earlier we really need some fresh blood, with new ideas and solutions. I think those will fix the short-term problems. However I foresee problems within the next 50 or 100 years. Probably even sooner these problems will arise.
For starters technology in manufacturing, especially with the complexity in which 3-D printers are becoming more and more advanced really quickly. In the future, manufacturing will be done pretty much completely by machines. This is going to cause a big gap in population and jobs available. Pretty much one day we are going back to come to terms with the fact there is not going to be a job for everyone. My idea for this is to change our food production systems, to be more locally based, where farms will be focused less on mass production on certain products that get delivered all over the place.
By simply having local farms focusing on local market to feed the populations, you open up a few more jobs in agriculture to try and maybe offset the jobs that will be lost due to completely mechanized manufacturing.
I also see another opportunity with people that cannot find a job and are relying on government assistance. There should be a system much like the military, that is a volunteer service for the government, but focused on development of infrastructure, like roads, highways, high-speed rails and stuff like that. And these people would get paid like soldiers do, and like soldiers they would be fighting for their country, but instead a fight to keep up with the rest of the world when it comes to infrastructure and making life easier for the citizens.
By doing it this way the government can control the pricing better, instead of contracting out these projects to private companies that charge extra money, and take their time for job security. There are lots of citizens out there that want to improve the quality of everyday life for themselves, their families, their neighborhoods, and near future generations. I think a system like this would also bring communities together, get people involved in working together, and promoting a sense of accomplishing something together.
Another big issue with all these people that are unemployed and need welfare, but are completely capable to work and for the most part want to work but have no jobs. I think we should set up programs where we open up volunteer work at national parks, and city beautification and cleanup, and things of that nature, instead of paying people to do those jobs we could have a system where people that cannot find jobs can do that work while they are on government assistance.
As a disabled person this next issue that I have an idea about has to do with Social Security and Medicaid. At the moment both of these programs were set up originally for the elderly that are going to retirement. It is also supplemental income for the poor and the disabled. Now as a disabled person that requires lots of medical care, but is completely capable mentally to work, and contribute to society I get stuck in the system.
Now you may be asking how does that happen, basically what happens is when you make over a certain amount of money or have over $2000 in the bank you will lose the services. Now the issue here is that fact that if I made say about $75,000 a year I would definitely not be getting Social Security and Medicaid. At that point one would not need supplemental income to live, however if someone lost Medicaid in my condition that salary would not be enough to cover nowhere near my medical expenses. For me to be able to be fiscally responsible on my own, and able to pay for nursing, medical equipment, visits to the doctor, transportation, stays in the hospital I would have to make over $400,000 a year.
This is the way this system does not work, I think for disabled people there should be a totally different system apart from Social Security but get similar benefits as Medicaid and Medicare but not so much salary based but based on the needs of the person. There are many disabled people out there that want to get out there and work and be a tax paying citizen but they just cannot get out of the hole they are in. I believe they should be guaranteed these benefits strictly when it comes to the health care portion. A disabled person did not choose their situation, but they have their right to make the best of what they have.

These are just a few of my ideas, I do not think they are exactly the answer to everything. However it is just a start and an example of how someone's ideas could come up with different solutions, in a future blog I might go into even more detail. For now however my brain has just put out a small portion of ideas. I hope everyone enjoys.

Thursday, February 7, 2013

my introduction to the blogverse


                As I enter into the world of blogging, I figure it is appropriate to introduce myself, even though quite a few people reading this probably know me. However for those that do not know me, I think it would be best to introduce you to my awesomeness.
                So exactly who am I? For starters we can go with my name is Steve Catalli, and I am 27 years old and I was born on August 19, 1985. I have always been a person to speak my mind, and have no problem sharing my thoughts no matter the content. My mind is always working and thinking about all sorts of things, I think mostly due to the fact that I am physically disabled. I have a form of muscular dystrophy called Duchenne. I could go into lots of detail about my disability however I have done it so much it has gotten to be redundant, and it is only a Google search away from everyone. I will however at least tell you all that it is a muscle wasting disease, and has left me unable to move any of my extremities, and I am on a ventilator to improve my breathing.
                All throughout my life I have been a fighter, pushing the odds, breaking the chains, and giving it my all. I am a very warm and loving person, however I am no pushover nor am I afraid to push boundaries. I love all things that deal with creativity, questioning the status quo, and just having a good time. I tend to be serious at times, as much as I also like to not take things seriously at all. I have dealt with so much, even though I am a man that cannot stand, I stand taller than most men. Yet some people cannot even see that either to their ignorance, or they are too scared to question their own values and existence, to let go of the fear and materialism that surrounds us every day and gets thrown down our throats.
                With this blog I plan on covering all sorts of things, whether it be just me sharing my thoughts about some obstacles I go through. I will also write about many topics of interest, from my thoughts of the universe, government corruption, disability rights, the prevalence of ignorance throughout modern society especially here in America. As well I will discuss my thoughts on life, whether it be a rant, or a deep meaning philosophical blog. I will also be taking on subject matter, that people request of me.
                I really look forward to sharing my journey with everyone. Hopefully everyone has a great day.

            -- Steve