Stripped Of Confidence

One of the worst things that has happened to me during my nineteen year incarceration in an institution is basically having my confidence stripped away from me. Very few of the staff members support the idea of someone like myself living outside of the hospital setting. In fact, I have actually had a few people laugh at the idea, which practically felt like a physical slap in the face. I know I shouldn't let that affect me, but it did knock my confidence down several notches.

Sadly, institutional bias is far more rampant than a lot of people believe. I know for a fact that there is a lot of ignorance regarding disabled people living independently. You wouldn't believe the number of people that I have encountered that don't think a person with a severe disability has the potential or capacity to live and thrive outside of an institution. It's exactly this kind of attitude that keeps people like myself from pursuing a life of freedom.

Back in 2003, I was extremely close to leaving the hospital and moving into the community. I ended up backing out because it didn't feel like I was going to be safe. The agency I was working with just didn't seem to comprehend the kind of living situation that someone who is ventilator dependent requires. However, some of the blame rests with myself because I was too timid to speak up and make a real effort to explain what I wanted and needed. Another thing that wasn't very helpful, was the fact that my social worker was constantly pointing out what could go wrong. Obviously, being the one on the ventilator I'm acutely aware of what could go wrong and I would take steps to minimize the possibility of something going wrong.

Now I'm at the point where I really want to make an effort to get out of the hospital, but it's not easy when you don't have the support of your own family and the people who care for you on a daily basis. Don't get me wrong, I do have the support of my fellow DMD Pioneers and others in the Disabled Community and I really do appreciate it. I just need to stop being scared of change and forge ahead regardless of the challenges I will certainly face.

I also need to give my local ILC a serious kick in the ass because for over two years I have been working with them and getting absolutely nowhere. Every time I feel I'm ready to take the next step, something happens within this ILC that completely sidetracks me. First, the guy I was working with nearly two years ago ended up having serious health problems and had to quit and then the ILC closes and goes through some sort of restructuring. The last time that I heard from them was in July. The Director of Services told me that they were still interested in working with me and that there were going to set up a time to meet with me. I know that I'm responsible to follow up on such things, but I assumed that they would start the ball rolling. Unfortunately, I haven't heard back from them even after I sent them an e-mail about two weeks ago. I'm not sure if I should send them another e-mail and give them a chance to respond or should I tell them to close my case and work with the other ILC that covers my area. All I know is that the longer I remain idle, the more hesitant and nervous I'm going to be.

Peace,

Chris

A New Direction

I have decided to take this blog in a somewhat new direction. Because I have lived in a rehab hospital for just over 19 years I have a good deal of experience with institutional living and believe that I have a lot to share with those who read this blog. I will still continue to write about other things that happen in my life, but I will focus more on my experience living in an institution. I hope what I write will be informative and helpful in some small way.

Something that has been happening to me for quite some time is that my doctor rarely if ever discusses things that he orders. I have tolerated it because I know I have the right to refuse anything. This past Monday, one of the nurse came into my room the CBS (Capillary Blood Sugar) machine and said that she had to take my blood sugar. I figured she had made some sort of mistake because she is not one of our regular nurses. I told her that I don't get my blood sugar checked. She then went to the charge nurse about it and she came into my room to tell me that my doctor had ordered it taken three times a week or two weeks because I had recently started getting tube feeds and he wanted to make sure it wasn't affecting my blood sugar.

I have no problem with such things being done, but it would certainly be nice if my doctor would take a couple minutes to tell me that he is going to order something and why. I honestly don't think that is asking too much. When he doesn't tell me, I feel like I have no control over my life. I will be speaking to him about this issue the next time I see him. Hopefully he will listen to what I have to say.

Peace,

Chris

Moving Towards Freedom

On April 28th I made a big decision, one I hope to follow through with this time. I contacted my local ILC known as Independence Associates. I informed them that I would like to look into the possibility of moving out of hospital and into the community. This is something that I have attempted a few times in the past, but fear has always derailed any real progress. I am rather nervous about the prospect of leaving the security of the hospital that has been my home for nearly 2 decades, but I have to make some changes in my life if I hope to find some real happiness and a sense of accomplishment. It's hard to keep my fear at bay, but if others who have DMD and are also ventilator dependent can live independently, there is absolutely no reason why I can't do it as well. At this point, I'm waiting to meet with the people from Independence Associates. I keep telling myself that I can do it and that my life will greatly improve.

Turning 41 And Other Thoughts.

Today marks my 41st year of life. I say it that way because I didn't actually celebrate this birthday in the traditional sense with a birthday cake and being serenaded with the birthday song. I'm not upset about it this fact, but I do wish I had made plans to go out and do something special. I will say that I celebrated my gratefulness to be alive and in good health. For this, I'm extremely thankful. My birthdays always make me pause to reflect on those who are no longer living. I can't help but feel a slight sense of guilt, but I know that I'm still here for a reason that I don't quite know.

During the past two weeks I have started to become close to someone that I considered to be just a casual friend. Out of respect for him, I will not divulge his name, but I will say that he was a member of two of my favorite heavy metal bands. We have been discussing spirituality and such. This isn't something that I have ever really talked about with another person. I've just never felt very spiritual in any way. Some may look at his views as somewhat crazy, but I have been able to relate to them. He is studying the martial art of Ninjitsu for a few months and he told me that the mental aspects of it had been very beneficial to him and have allowed him to forgive those that had wronged him in one way or another. He also said that he feels better than he ever has in his life. He has been giving me some great advice on how to avoid negative energy in my life and it has slowly begun to help me. I'm more aware of the negativity around me and find myself paying more attention to my thoughts and actions. For example, when I feel something beginning to frustrate me, I close my eyes and let myself relax and not give in to my frustration. I've been trying to be positive and I have noticed that unexpected things have happened. A friend of mine from school who I haven't heard from in about 18 years contacted me and I was thinking about taking another college course online and a few days later, my vocational rehab counselor e-mailed me to inform me that he is going to be retiring and he wanted to know if he should close my case. In my opinion, positive thinking really does work. It has also started me to think about working to leave the hospital and move out into the community despite my fear. With any luck, I will find a way to overcome being scared to follow a big dream of mine

Peace,

Chris

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

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

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