The Shannon River

2008

2008-12-23T05:30:00.000-08:00

I can 't believe I haven't written in so long. I think it's because I've been so overwhelmed with how much I have to say that I just didn't bother. It kind of stinks because it's been a pretty incredible year...monumental actually. Between getting married, going to Ireland on our honeymoon, supporting and watching the first black President get elected! I wish that I had documented my thoughts along the way, it would have been interesting to look back on them in the future. Oh well, I'm trying to make up for lost time now. Not that I'll get to write in detail about all of my experiences throughout the year but I'll summarize.

First, my wedding and honeymoon were absolutely perfect! I really can't think of a better word to describe how well they went. The weather was beautiful on the day of the wedding, everyone that I wanted to be their was and everyone chipped in to make it a perfect day. Tom was so handsome in his suit and he is the perfect husband, I just love him soooooooooo much! The honeymoon was unbelievable as well. First, going to Ireland was just major in it self but going there on our honeymoon made it even more special. The country is just absolutely beautiful and the people were so friendly! Now I know how all those people feel in those sad Irish songs feel, they long for their beautiful Innisfree, Erin! Oh how I love thee! It was an entertaining and educational experience, my favorite combination :).

Lastly, Barack Obama. What can I say, he has inspired me so much! I was never a big politics person before I started following his career. I've read both of his books and was an avid fan of his election campaign. I was glued to the TV from the point that he was nominated as the Democratic nominee up until he was elected the President of the United States! What I love about him is that he knows that in order to fix alot of the problems that we have in our country today we have to fix our infrastructure. He has alot of common sense and I can tell that no matter what happens in his presidency he will be very honest with us. I hope that I continue to be inspired by him... 2009 will certainly be an historic year.

Different But Equally Valid

2008-02-03T13:14:00.000-08:00

This quote come from an article in a book called "The Ragged Edge: The Disability Experience from the Pages of the First Fifteen years of the Disability Rag". The "Disability Rag" which chronicled the early years of the disability rights movement. When I was reading this book I was moved to tears, anger and disgust in reading about what people with disabilities have been through for hundreds of years. It also inspired me to read about all the hero's in the movement who paved the way for the Americans with Disabilities Act. We still have a long way to go but it's good to know that there are other's out there who have fought and will continue to fight for equality in the future, and I hope to be one of those people. Anyways, I came across some amazing quotes in this book and I wanted to document them here in my blog. The first one is about diversity.

"If we've learned anything from other oppressed minorities it's that you gain nothing from efforts to assimilate into the culture that devalues you. We will never be equal if we accept token acceptance as slightly damaged AB's (Able-bodied people). Politically and psychologically our power will come from celebrating who we are as a distinct people. I'm not content being a pale version of the majority culture. I want to be a strong version of something else-different but equally valid."

I've always tried to fit in with the able-bodied people around me, mean while I was miserable. The minute that I accepted my disability for what it was and how it affects me, the easier my life suddely became. And now that I'm learning about my disability history and culture I don't feel so alone anymore. My feelings are becoming validated from others who have been in my shoes. I am different but I'm am definitely not a broken version of an able-bodied person. I am a strong version of someone with Muscular Dystrophy. I work, I travel and I contribute to my community. My muscles may be weak but my heart, mind and spirit are as stronger for it.

What is a good friend?

2008-01-22T16:14:00.000-08:00

Is it someone who always gives you a ride to work, goes to the night club with you every weekend, calls you all the time or knows exactly what you want for your birthday? For some people they would say yes to all of these options and others might say no to all of them. All of my life I've tried to figure out what makes a good friend and I tried to be that. In a lot of respects I think that I've failed in being a good friend and in other ways I think that I have been a good friend because I really tried to be there for them because that's what I would want in a friend. People's interests and personalities change through out there lives as they become more comfortable and confident with who they are as a person. Someone who fit into there lives before one transitional point might not fit into there lives anymore they've fulfilled there purpose , so to speak. Friends come and go in our lives, so to say someone is a good friend really depends on how long you have known them and what you've been through together. Although even if you have known them for a long time people can disappoint you and make you wonder why your friends at all.

Expectations
I guess I do have expectations in friends, and people in general. Things that seem to be common courtesy to me don't seem that way to others. My mom recently told me not to expect anything from anyone cause you will always be disappointed. It's sad, but true. People are generally out for their own best interest. School, work and various other activities generally keep people occupied and thus leave little time for the ups and downs of other people's lives, even there own friends. It might sound negative, but I've been through a few experiences to know that you really need to protect yourself.

Good News
The good news is not expecting anything from people makes for a few enjoyable surprises in the end. It also makes life a little less stressful when your not hoping and expecting something to happen. Most of the time if you want something then your just going to have to ask for it.

In the End...
The people who may need a little help in the being a good friend department also might have a little growing up to do. For now I'll try my best not to expect to much from folks and try to live as stress-free as possible. Cause really people... aren't friends supposed bring happiness into our lives instead of more UN-needed stress?

Crazy 2007

2007-12-30T16:38:00.000-08:00

2007 was a year of changes, good and bad. However, even if they were bad I tried my hardest to turn them into positives. In January I started my fellowship at ICI which I just successfully completed. The product of my hard work is a guide entitled "An Accessibility Guide to Community Technology Centers in Massachusetts " .I also worked on an accessibility brochure for UMass called "Accessibility Services for UMB Students" It was quite an experience to work on an entire guide by myself but now I know that I can do it. In the midst of my fellowship I somehow managed to graduate from college and obtain a Student Leadership Award. Before I went to CPCS I didn't know that I had a leadership skills in me. But one professor made me see that I actually did and her name is Lorna Rivera. I will always be grateful for her teaching methods which made me realize that I really am smart, I just learn differently than most people. Also, for believing in me when I didn't. Graduating from college was not an easy fete for me but it's something.

Before I graduated though, I discovered that I had diabetes :(. It was about a month before the end of the semester and I was really stressed out. I was also feeling like crap too. It got to be so bad that I ended up going to the emergency room were I told them my symptoms and they tested my blood sugar, which they found out was 530. And if you know anything about blood sugar numbers you know that is really, really bad! If I had waited any longer I probably could have slipped into a diabetic coma. Anyways they gave me some insulin, I started taking medicine and I had to change my diet big time. No more sugary products, especially not chocolate, which is my absolute fav! It was hard at first to adjust to the new diet, however once I got into the swing of things I realized that I didn't have to make drastic changes just little ones. For instance, diet soda instead of regular, splenda instead of regular sugar (and let me tell you there's a bunch of yummy products that they make now with splenda instead of regular sugar), wheat bread instead of white bread and finally I can have chocolate (and not that sugar-free crap either) I just can't eat it everyday. I also lost 20 pounds in the process so it's actually not all bad. Yeah I have to take a million different kinds of medicines and my fingers look like pin cushions now but at least I'm eating healthier.

I also went to Vermont in August with my sweetie for our 2nd anniversary. It was so beautiful and the B&B that we stayed in was so romantic. I also started planning for the wedding, picked out my gorgeous wedding dress and since we're doing an Irish themed wedding I got to find out more about my ancestry, which I will be writing about more in the future.

The very last thing we did in 2007 was move into our own apartment. I love that we have our own place now and I don't have to go up and down a million stairs either! The last couple of weeks of 2007 really reflected how crazy this year was. Between fellowships, internships, graduating, diabetes, traveling and finally moving. It's no wonder why my fiancee and I fell asleep before we even got to see the ball drop on new years eve. It was a crazy year and I think that 2008 will be filled with more crazy new things. Like starting a new job, getting married, going to Ireland on our honeymoon and hopefully getting excepted to graduate school. It's a really exciting time and I'm just happy that I get to experience all of it with my best friend and true love.

Wishing I Could Do More

2007-12-27T08:28:00.000-08:00

During the holidays mostly everyone thinks of the less fortunate. The homeless, people in third world countries suffering from the attrocities of war. However, it's not just something I think about during the holidays, it seems to be taking up more and more of my thoughts. I tend not to watch the news because of the philosophy that the media has of "If it bleeds it leads". Shootings, gang violence, war, poverty it's enough to make a person fall into a great depression. I'm fully aware of what is going on in the world,I may not know all of the details but I like to stay somewhat up to date.However, I don't like it shoved in my face every single day because I can only feel two ways about it either sad or angry, and I don't like to feel either of those. I have a history of volunteer work,I work for a non-profit, I donate my old clothes to charity and I give money to other charities whenever I can, so it's not like I'm doing nothing. I just feel like there is so much to be done in this world and I obviously know that I can't do everything but I feel like I should be doing more.

There is just so much injustice in the world and I just feel so sad sometimes for the people who have to suffer the worst of it just because they happened to be born in a place where people just can't get along. I've experienced some hardship in my life because of my disability but I just can't imagine having to fear for your life every single day.

Hopefully someday I'll have enough money to travel to places like the Sudan and bring books and school supplies to the children or be able to donate money to charities on a regular basis instead of just a few dollars here and there which is all that I can afford now. For now though I'll stick with my work in the community and hopefully continue to help people as much as I possibly can.

Haunting

2007-12-21T09:55:00.000-08:00

Time at this Point of the Year
by Cormac MacConnell

Time changes at this point of the year. These are Limbo days, hours, minutes, seconds. Time elasticates itself. It seems to stop. Or to move jerkily forward like an old clockwork grandfather's minute hand. Or to even run backward on a silent tick-tockery of Memory. Or to fast forward to a Christmas we may never see. Or to pulse feverishly on some frequency not related to our Time at all. Read More

On Making it Living With a Disability

2007-12-19T16:34:00.000-08:00

Another fabulous bit of wisdom from one of my favorite websites.

As I travel the country and world, the people I meet who are living with (and without) disabilities and “making it” are those that have three key attributes: First, they have an undying belief in themselves; in who they are. Like the Buddhists who ‘know’ they are sitting, walking or eating, these folks ‘know’ where they fit in the grand scheme. They pay no attention to the assumed limitations and restrictions placed on them by others. They blaze new trails, changing attitudes along the way. Second, they seem to have a great support system in family and/or friends; people with and without disabilities who see them for who they are. Third, they have an indefatigable (I’ve been wanting to use that word in a sentence for years) and bodacious sense of humor. They see their disabilities for what they truly are: a part of life; of the human experience and, therefore, subject to the “slings and arrows of outrageous fortune”.As I have said, for me, some of my funniest experiences have been directly related to my disability and that, quite often, it has had to do with someone else taking my disability far more seriously than I (my acute care doctor for instance). Now there’s a funny story ...To laugh is to survive...

On Relationships

2007-12-17T11:16:00.000-08:00

In an attempt to de-clutter my brain and actually get some of my thoughts down on some kind of medium, I'm going to right about my thoughts and opinions of things in my life and what I see going on around me.
My first rant is about relationships. Why some work and some don't. I believe that my relationship works because we have the utmost respect for each other and we have each other in our lives because we believe that we have something positive to give one another. In other words, we don't bring drama into our relationship, fights are resolved quickly, disagreements are met with compromises and I think this is how an adult relationship should work. Also, we both believe that life is hard enough and that drama is everywhere else in our lives that why would we purposely invite someone into our lives to bring more negative energy and stress. Why would somebody do that? I personally believe that drama in relationships only works on tv and that leads me to why I think relationships don't work.

The TV Couple
I love Lucy, Everybody loves Raymond, All in the Family, Married with Children. These are just a few tv shows that have dysfunctional but lovable couples. Always arguing, never really wanting to be around each other or the kids, complaining about one another to friends and other family members. We all grew up watching these tv shows and of course we laughed because the arguments we're ridiculous and it was just plain funny. We all love watching other people's drama that's why people watched these shows. However, I'm wondering if these shows had an effect on the viewers and in the way they act in relationships.
I like to observe people and in observing them I see how they treat their significant others. Sometimes I feel like I'm watching a sitcom with the disrespect people have for the person who is supposed to be their boyfriend, girlfriend, wife, husband, etc. The whole ball-and-chain attitude I never really understood. If you really hate this person then why are you with them? It could also be differences in personality as well. I'm a very laid-back don't really like drama in my life kind of person. However, some people are more hot tempered and they need that drama to survive. I'm not saying that I don't like drama at all I mean I love to watch all those sitcoms and all the reality shows like The Real World and The Hills were it seems like they just cast emotional hot-tempered people who are willing to fight over just about anything.

I guess I would just have to say that I don't understand drama in relationships because I think of a relationship as a place of love and serenity. That no matter what is going on in your life you can go to that person you love and they can make you feel like the world is perfect. That's what I have and I wouldn't trade it for anything in the world.

Aren't you a good girl

2007-08-07T11:20:00.000-07:00

That is what I nurse said to me when I went to a doctor's office. The nurse called me in and as I was walking towards her, cane in hand as usual, she says "what's wrong with you", I stopped dead in my tracks in total disbelief that a health "professional" would say something so ignorant. If I wasn't such a nice person I would have told her to go to hell. However, after I composed myself I told her that I have Muscular Dystrophy and she go's "oh aren't you a good girl". First of all what the hell is that supposed to mean? Second of all I'm 25 not 5, don't you dare talk down to me and treat me like a child because you feel uncomfortable around people with disabilities. That so pissed me off.
However, I was reading my favorite blog Arthritic Young Thing and she was talking about how disabled people it seems are supposed to heroic or brave just because of their disability. Here's what she says:

"Most disabled people hate being called brave, and 'an inspiration to the rest of us.' I have mixed feelings about it, myself. On the one hand, I do go through more pain and suffering than the average person, so it's nice to have someone tell me I'm handling it well. On the other hand, when an able-bodied person makes a big fuss about me just living my life, just like everyone else, it can get really annoying. I mean, sure, I do have more physical hardships than most people, but we all have our burdens to bear, ya know?

Categorizing all disabled folk as brave and heroic sets a dangerous precedent for the community. It's setting a standard that we're all supposed to live up to, whether we want to or not. Some disabled people enjoy the whole 'triumphing through adversity' thing. Yes, some of us do enjoy being pedastalized for persevering through our challenges. But there are others who don't want to be brave, who resent having to be brave. In an ideal world, disabled people wouldn't need to be brave, because the resources we need to live a good and regular life would be already there."

I've been called brave quite a few times and have for the most part been confused by it. Yeah, it's hard for me to get around and I do sometimes have difficulty with my learning disability, but I do it. I mean what other choice do I have? To just sit at home and do nothing. Hells no! That is definitely not an option for me. For other people who have more severe physical disabilities they might not have a choice in the matter. To me everything I do on a day to day basis is just normal to me, it's not heroic on brave. To me it's stuff that has to be and I don't see any other way around. I want to have a good job so I have to have a good education. I want to live on my own so I have to work. So far I've done all of those things, I have my bachelor's degree and I live on my own with my fiance. Sometimes it's hard but I think that everyone has their own issues to deal with mine just happen to be on display for everyone to see.

Exactly how I feel

2007-08-07T11:03:00.000-07:00

I found this amazing blog entitled Arthritic Young Thing, and it's all about her musings on having a disability and how she handles things. There was one particular blog entry that really stood out for me and it was called "Growing a thick skin". It's really hard for me to describe what my life has been like and how I feel about my disability, so I thought I would post this on my blog, because she is definitely more articulate than I could ever be about this topic :). I've bolded some of the things that I could really relate to and things I wish people would understand about me.

"When I was a little girl, quite a few people picked on me for being crippled, for being a brainy bookworm, for being shy, for being anything they deemed unacceptable. No one ever told me the bullies were being jackasses, no, I was told to ignore them, to 'grow a thick skin', to not let them get to me. No one exactly told me how that was possible. I've come to the conclusion that when almost everyone is against you, and you have little to zero support, it's impossible to not let it get you down. It's impossible to 'grow a thick skin' in those circumstances, and it isn't even the most appropriate thing to do. The bullies should be called on their behavior and punished for it, and that should extend well into adulthood. One should not have to grow a thick skin and take that sort of abuse without fighting back, without crying out against the injustice.

All through elementary and high school, I was rejected, outcast and alone. I counted myself lucky when people ignored me rather than notice me, because people who noticed me went out of their way to make me miserable. I learned how to make myself small and invisible. I learned not to do or say anything that would draw negative attention to me. The problem was, I felt haunted because I knew I wasn't being true to myself. Biting my tongue, not wearing what I wanted, not doing what I wanted, not being who I wanted to be, all for the sake of being left alone and ignored. I didn't like being that person, but I didn't want to go back to being noticed and bullied either.

In order to become the person I wanted to be, I had to grow a thick skin. I'm not talking about being silent while suffering oppression, or not being bothered by the verbal abuse I received from others. I'm talking about thickening my skin enough so that I could go out and be the me I needed to be, skin not strong enough to deflect criticism and hatred, but strong enough to keep them from getting in to my inner core where they would do the most damage. Before I became that person, I was skinless and fragile, and every little glance, every word, every sneer would wound me to the deepest part of my being. Growing a thicker skin did not mean that I stopped being bothered and angry when people did oppressive and cruel things to me. I don't think people should ever be silent and stoic about being treated that way. Growing a thicker skin meant I was better able to be myself, and stand up and fight against that cruelty and intolerance."