Monday, December 22, 2008

Family Christmas Party And Some Random Thoughts

Well, as usual, my family Christmas party, which was this past Saturday was a success. Everyone that was expected to attend was there despite the nonstop snowfall. My cousin Stacy was the first to arrive along with her husband and their two sons. As I was showing my cousin where the party was going to be held, she told me that she was going to kill our uncle David because of a little prank he had played on her. She had called him when she arrived at the hospital and asked him where he was. He told her that he was laying on his couch watching football. My cousin asked him what he was doing at home when the party was today. He said that the party wasn't scheduled for Saturday, but rather Sunday. After he said this, there was a long pause of silence before my cousin responded saying that her aunt was going to kill her for giving her the wrong date. My uncle wanted to continue with the prank, but apparently he couldn't contain himself and finally told her that he was on his way. He really had her going for a few moments

Everyone in my family has a great sense of humor and love to laugh. There are never any arguments among members of my family. Sure, there are definitely disagreements, but not to the point of voices being raised or feelings getting hurt. Everybody gets along extremely well. I have heard of families that can't get along and are constantly arguing. I'm very grateful that my family is respectful and civilized to one another

After my cousin Stacy and I entered the room, other people began to trickle in. Before I knew it, most of my family was there and the kids were running around and having a great time with one another. I was getting tired just watching them. As I told a friend of mine, if we could harness the energy of children, we would never need to rely on oil again.

There was plenty of food, but unfortunately I had difficulty chewing most of it, so I didn't have very much. I really can't complain because I'm nearly 41 and I'm still able to eat by mouth and not need a feeding tube, which I once had before getting trached and had removed shortly thereafter.

This may sound strange to some of you, but for some reason I never feel completely comfortable around the children of my family. Don't get me wrong, I really enjoy seeing them, but I get very self-conscious about my disability and become rather quiet day. This has been an issue for me for some time now.


Anyhow, a good time was had by all and we all look forward to doing it again next year.

Before I end this post, I want to wish all of you that read this a Merry Christmas. I won't say happy holidays because I find it ridiculous that there are people in this country that are offended by others traditions. It's time that people grow up and stop whining about somebody somewhere having a nativity scene in front of their home or what have you. I'm not exactly a religious person, but I have never been offended by how others celebrate their respective beliefs. I live in a Jewish rehab hospital and I don't take issue if I see a menorah. Although I'm a bit steamed about the hospital deciding that Christmas trees cannot be displayed at the nurses stations, but only in patient's rooms. Well, I rambled on long enough and kind of got off topic.

Peace,

Chris

Wednesday, December 17, 2008

Unexpected Encouragement

I was speaking with Scott Sands briefly last evening on Yahoo Instant Messenger. He asked me why I haven't blogged recently and I told him that I feel that I never have anything interesting to write about. His reply really got me thinking. He said to write about uninteresting things. He's absolutely right! I don't have to have something spectacular happen to me to write. And it just now occurred to me that the title of my blog is about life with Duchenne Muscular Dystrophy. What he said was certainly unexpected encouragement.

I plan on trying my best to write something at least once a week. Hopefully I will be able to start making blogging more a part of my life as it should be. I can't let World of Warcraft become the only thing that keeps me occupied. Just because I live in a rehab hospital doesn't mean that I don't have something worthwhile to write about. I would say that my living in an institution should give me a lot to share with those of you that read my blog.

Before I end this post, I would like to share something good that's happening this coming Saturday. It has become somewhat of a tradition for my family to have a Christmas party here at the hospital. We have been doing this for about 5 years now and it's something I always look forward to because it's one out of two times a year that I have the opportunity to see family members I don't see very often. It's always a good time. I plan on blogging about it.

Well, the clock is close to striking 10:00pm, which is the time that the nurses come to get me into bed for the night, so I must say farewell for now.

Peace,

Chris

Thursday, October 16, 2008

Feeling Hopeless

I know it's been nearly 2 months since my last post, but because I live in a hospital there's never anything of interest happing to write about. I mean I don't exactly have what one would call an active social life. Sadly, I spend much of my time in my room playing World Of Warcraft these days. It certainly helps keep my mind off of things I'd rather not think about, but I know that's not very healthy. It's like people that drown their sorrows or what have you in a bottle. I may forget my troubles for a while, but they are still there after I finish playing. I suppose that I'm beginning to feel hopeless about changing my situation. It's difficult to find the motivation to make serious changes in my life when I don't really have people in my life that support me as far as pursuing independent living goes. Don't get me wrong, I have people I know online who have been rather supportive, which I really appreciate, but it's not the same as having someone you see in person. I could go on and on about this, but I don't wish to bore you, the reader of this blog.

Peace,

Chris

Wednesday, August 27, 2008

Death Magnetic

For many heavy metal fans worldwide, September 12th is a much anticipated date. It's the day that Metallica will release their 9th studio album entitled "Death Magnetic".

Metallica has been ridiculed by numerous fans for the direction they took their music in 1991 when they released their self titled album "Metallica" also referred to as the Black Album.

Subsequent releases have veered away from traditional old school heavy metal to become more commercial and radio friendly if you will. Sadly, a lot of Metallica fans have come to call the band sellouts. Now I have an issue with this term. Is it really selling out to experiment with one's music style and try to evolve their sound? In my opinion this is certainly untrue. Many bands in the past and present have done this. This is the natural process of creating music.

Without treading into unexplored territory, a band can easily become stagnant and uninventive. Certainly there are bands that stick with a distinct sound and rarely if every stray from a formula that works. AC/DC comes to mind and they have been very successful. However, this isn't always the case as anyone who listens to music knows all too well.

Many fans, including myself find Metallica's earlier albums to be the best work put forth by this iconic metal quartet. However, unlike these fans, I have enjoyed every album they have released and have the utmost respect for their decision to go in a different musical direction. Does this mean that I like every song? Hell no! There are some songs I simply don't like, but I don't say they suck or other such things.

Two of the new songs on the upcoming album, "The Day That Never Comes" and "Cyanide" can be heard on YouTube. Both songs are very good, but "The Day That Never Comes" really grabbed my attention. It sounds like Metallica has rediscovered their roots while maintaining some of their newer sound to some degree. Will this be Metallica's return to their old school metal sound? We will find out soon enough.

Peace,

Chris

Monday, August 4, 2008

A New Love

I have a new love in my life now. No, I'm not referring to a new girlfriend. Although, I would just about kill to have her LOL. She is Simone Simons of the Dutch symphonic metal band Epica. Not only does she have the voice of an angel, but she is also extremely beautiful in my opinion. I have a thing for red hair and a pale complexion. Don't ask me why, but I do. Anyhow, here's their song "Higher High" accompanied by a slideshow of Simone herself.

Peace,

Chris



Fireflies are flying higher
They draw their wings up in the sky
Something I cannot read now
For my vision is blurred

We are all ruled by our fears below
Higher high
We are stuck and can't get out again
There's more than we deny
And there's more than meets the eye

Fortune, fairytales; we've all been told
Our pattern, never built, never begins (?)
I can tell you there can't always be
A happy end to every tale

We are all ruled by our fears below
Higher high
We are stuck and can't get out again
There's more than we deny
And there's more than meets the eye

We are all breathing the same air
That we share
We all just have to live
We are all equal
No matter black or white

We are all ruled by our fears below
Higher high
We are stuck and can't get out again
There's more than we deny
And there's more than meets the eye

Wednesday, July 23, 2008

In Memory Of Cody J. Namesnik

This song is by the heavy metal band Manowar. Although the video has nothing to do with Cody, the words that accompany it are my dedication to him.

Peace,

Chris


Tuesday, July 22, 2008

Rest In Peace Cody

It's difficult to believe that yet another friend of mine with Duchenne Muscular Dystrophy is gone. Times like this make me wonder why I'm still here. Don't get me wrong, I'm extremely grateful to be here, but it seems that those with so much to offer are taken away from us far too soon. I'm thankful to be a survivor so far, but it's so painful to see this merciless disease strike down friend after friend. Sometimes it's almost too much to bare, but I go on because I know that's what my fallen comrades want me to do.

I wish I had known Cody better, but I'm happy that I did know him. We would talk occasionally on Yahoo Instant Messenger. The conversations were never very long, but they were always meaningful. I could tell that he genuinely cared. He had been helping me try to resolve a wound care issue that I have been having for some time now. He had the same issue and we talked about what approaches we were taking to care for our wounds. He was extremely helpful and knowledgeable about such things.

We had played World of Warcraft together a few times, which I really enjoyed. I will definitely miss our conversations and game time. My deepest and most heartfelt condolences to go out to his family and all of his friends and acquaintances.

I won't say goodbye because I know that we will meet again one day. May you forever rest in peace my friend.

Peace,

Chris

Saturday, July 12, 2008

A New Look And A New Beginning

After not posting anything in about six months, I decided to delete my previous blog and start anew. I kept the same URL and blog title, but everything else is brand spanking new. Why the drastic change you might ask? I was reading some of my old posts and saw a lot of negativity in them, which I really didn't like. Yes, they were real events that occurred, but I was falling into a pattern of focusing on the bad things, especially the breakup with my girlfriend, which is the past and needs to be buried.

Another factor in my decision to start over with my blog was the fact that others I know who also blog are living in far better environments than myself and are actually making something of their lives. I want to be somebody making something of his life instead of wasting away in a rehab hospital. I have to face my fears and overcome them if I truly wish to have a chance at a somewhat normal life beyond the comforting walls of this institution that has been my home since August 14, 1990.

I took a major step in making a new beginning for myself by a finally speaking to my pulmonary doctor about seeing a ENT specialist to find out if there is something that can be done about the air leakage around my trach stoma. I'm trying to remain positive that he/she will be able to find a solution to this long time problem. Although it's only a consult, I have been having some anxiety about it. I actually went as far as trying to change the time of the appointment because it's scheduled at 8am, which is very early for me and means that the daily routine that I've become accustomed to will be shaken up a bit. This is something that I'll need to get used to I really want a shot at living in the community one day.

Everyone in the world is faced with inconveniences and they manage just fine. Now it's time for me to face some inconveniences of my own and join the rest of the world.

Peace,

Chris