Sunday, April 5, 2009

Frustration and lathargy

My mother always is telling me how I live such a "cushy" life and how I have no right to complain. She tells me how so many others are suffering from hunger in other countries, and goes on and on and on...look, I know I have it a lot easier than others. But when for 10 years of your life, although still impacted to some extent from the first surgery, you've lived a fairly normal life, only to have it taken away from you, it's hard not to dwell on it. Everyday I'm tired...really tired...and my body can't regulate its temperature correctly so I'm hot all the time. I don't produce testosterone, and due to new liver problems that have been discovered, my doctor has had me discontinue using it. So lacking that is yet another reason I feel like crap all day everyday. How can I be optimistic when I can't even feel healthy? I act miserable not out of pity, but because I am literally miserable. What's so hard to deal with is how others automatically assume that I exaggerate everything I'm going through. Worse still is that my family does this most out of everyone I know. It's hard...I understand that unless your going through what I am, you couldn't possibly know what it feels like. But I swear my mother tries to be ignorant of what I'm feeling...every time I try to appeal to her empathetic side, she acts as if she in fact has it far harder than I do. She works all day, while I sit on my ass all day long, how could I possibly have it worse...

Living at home has become a chore. Everyone here makes me feel like a burden. Every time I can't do something, like today when I wasn't able to help my Dad lift a 200 pound 50" inch TV up the stairs from the basement (we're selling it), I get a guilt trip about it. That's an extreme case though. The smallest things I'm given grief over. And when I bend over backwards to do whatever I CAN do for my family, like running errands all day long for them...going out of my way to make them happy in any way I can, whenever I ask for the smallest thing I automatically have crossed the line and am asking way too much.

Now my life has become doctors visits, and avoiding dealing with my life as much as possible through video games, movies, chat rooms, whatever means possible. I know it's bad, I know it's wrong...but nothing ever seems to get better. I feel trapped and entertainment provides an escape. It's the only time I can not live this miserable existence that has become my life. And although I may not feel happy when I escape my life...I'm not miserable.

I had friends while I was at college, and for the first time in my life, I felt liked...appreciated. One of my friends that I met this year actually called me to go to dinner every night. He cared about what I have to say, and seemed to genuinely care about what I felt and what I am going through. No one, not a single person, has taken the time to call me more than once or twice to do anything. It's not just that, it's the fact that he actually wanted to be around me...the most my own family does together is sit around and watch an occasional TV show once a week, if that often. We hardly talk, and when we do if it is of any significance (for example, a decision regarding my health that has to be made) it ends in an extremely heated argument. There's been four so far that have lead to me taking off because of how psychotic my mother gets. She literally screams at the top of her lungs at me...all because I have my opinion on what course of action should be taken in my health. I don't make demands, I just offer my opinion, after all, it's my health isn't it? I'm used to it by now. No one ever asks my opinion in my family, no one bothers to spend any time doing anything meaningful or fun...they just order me around and expect me to obey and shut up afterward.

I had to withdraw from classes this semester because I needed to have surgery for sleep apnea, and with any luck will be having gastric bypass before my liver reaches cirrhosis. I have steatohepatitis...a.k.a. fatty liver disease. If I don't a lot of weight, and fast, my liver will have serious irreversible damage done to it. Of course my insurance company is going to make my life a living hell before they ever approve I can have the surgery, so I may not even get it.

I worry about my future...I'm not sure I could ever put into words why I do...but let's just say after having two brain tumors you have issues that make working and studying a lot harder for you than others. The location the tumors were in also regulates being impulsive. So I tend to get emotional a lot more easily than others. I'm often categorized as a crybaby, or any number of things...in addition to fat boy.

I feel like I'm just a spectator to my life. I can't control anything that happens in it. Everytime I think I've got one thing beat, something else pops up to take its place, or I never get over the original problem. I found out this year I most likely can't have kids...one of things that I always thought "at least one day I'll be able to do that".

There's so much more I'd like to say...but having to dwell on how miserable I feel and the reasons why makes me nauseous. I hope someone out there cares, someone understands... 

2 comments:

  1. I am so sorry for what you have to go through in life. I am sure it is an uphill battle every day. I think it is great that you reached out to help the family of Carly Grace. If any good can come out of what you have gone through, it is that you can help others with the same condition. Stay strong, and keep reaching out. You were given this path in life for a reason, it just may take time to find that reason. Good luck.

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  2. You have definitely not been dealt the easiest hand, and I know that few (if any) people really understand all that you have to deal with and what it feels like to live with so many things out of balance. You obviously have a very caring heart, as you reached out to us as another family dealing with a craniopharyngioma. Thank you for keeping Carly in your prayers, and know that there are people out there that are thinking of you. There is a lot that you can teach to other kids that have to deal with hardship, and I have a feeling that you will make a lasting impression in many peoples lives. Sending you strength.

    Carly’s Dad
    (Brad)

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