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[Incognito]

(from my journal)

...when i'm buzzing, or drunk.

i'm pretty confident that i've screwed up with another girl. yet another girl i like i've managed let to slip through my fingers...

why?

i know exactly why. it goes like this,

me > you. it's not how i meant it to come off, but that's how it does, and it always ends up screwing me over -- and monumentally. especially over the last year and a half or so.. just one fuckup after another. if i were baseball player, my ass would be sent down to single a cuz my average is terribly abysmal.

i've grown up the past few years with the constant pounding of my family and doctors, "YOU, YOU, YOU..LOOK OUT FOR ONLY YOU!" and sadly, that mantra seems to have effected my personal life to the tune of damaging results.

the past year and a half, i've screwed up... and constantly. they know who they are, and i'm sorry. what's the saying?

"you have to like yourself before you can truly like anyone else?"

well, in a sense, i believe that applies to me. especailly as i grow older.

i don't like where i'm heading. i cannnnnot stand the fact that my illness is becoming more and more the focal point each passing day. i can't stand the fact of being out of breath walking between classes, or even walking up two flights of stairs.

i can't stand the fact that missing two days of treatments sends me into a tailspin. i can't stand the fact that i have to deal with my immortality. i cant stand the fact that most likely, i won't be alive past 40, and kids are out of the the question.

i trust no one.

i cant stand the fact that i have a stomach tube that pumps 3,000 calories into my stomach as i sleep, and more often that not, the fucking tube, and the gaping hole surrounding it, leaks damn near everynight.

i can't stand the fact that i want to be something, yet my illness keeps interrupting the proccess. im in class, and im not paying attention. not because i dont want to, but because my cf is acting up and really bothering me and coughing like i usaully do elicits questions from the peanut gallery.

i cant stand the fact that at 16, i was told it was better to have leukimia as i'd live longer.

i can't stand the fact that my friends, who after spending $50 a month for a gym membership, see noticeable results. meanwhile, my parents fork over $500 a month for my trainer, and i've got nothing.

i can't stand the fact that my arms are so fucking torn up from the limitless amount of IV's that my doctors want to place a port in my chest. yet another object that protrudes from my body.

i can't stand that fact that when i'm admitted intot he hosptial, i have to DEAL WITH FUCKING IDIOTS WHO KNOW NOTHING OF MY PLIGHT, OR EVEN CF. i hate, hate answering to these fuckign morons.

i hate being with friends, and not being able to drink because it physically hurts to do so.

i hate all the scars on my stomachs and arms.

i HATE being dependent on my parents. i'd trade EVERYTHING for a normal life.

i hate the people who come to my apartment and say, "i'd like to trade lives with you."

and there's been two people who've said that.

and most of all, i hate how i feel guilty when i fall sick. i feel like a complete and utter failure. i've built up this image where nothing can possibly bother me anymore. and it's ruining my life.

i hate for my friends to see me sick, lying in my hosptial bed, being adminstered IV meds.

i'm not alive because of god. i'm alive because of science.

i hated the feeling of having two stomach tubes pulled out with no pain meds, bigger ones placed in, then lying in my bed wondering what the fuck is the point of even living.

I HATE WILFORD HALL.

i hate being told to eat, because i'm skinny. guess what asshole. it's a product of my disease. don't fucking question me or order me around. i'm trying my goddamn best.

i hate hearing about other CF patients, younger that me, dying.

then i think.

how lucky i am. am i?

i have a great family, awesome friends, great material possessions. but i dont feel good.

this has been bothering me for quite awhile, and i dunno why it's coming out tonight. if this disturbs you, sorry. but it's bothering me a hell of lot more. everyday, i think about calling my personal nurse and asking her to get me back in touch with my pyschologist. but i'm deathly afraid of that.

i dont want my parents knowing.

i dont want my friends knowing.

i dont want more meds.

i just want people to fucking understand. life is not getting easier. it's getting incredibly tougher, and as of this point, i dont know how to deal with it.

the only thing i glean joy from is politics. i know exactly why, too. all i have to do is read about it, learn about the problems, and then allign myself with a viewpoint.

nothing is expected of me.

behind the smile and laughs, is someone wondering what the fuck is going to happen to them. wondering every goddamn day where they'll be in 5-10-15 years.

i respect all my friends and family. all the people who work and or attend school, you're living the life I WANT.

my brother, a workaholic, and a person who goes to school 15 hours a week. beautiful, caring gf that's always with him

that's the life I WANT and yearn for.

at the rate i'm going, though, it'll never happen.

to understand the lenghts at which i hide things, know that NOT even megan knows about my stomcach tube, and the fact that i receive nightly feeds. i'm scared to tell her, and this a person i'm moving in with in a MONTH.

when people throw fake punches at me, i flinch the instant i see their arms move. why? my body over the years has been terrorized.

i'm getting sick again, and IM DOING EVERTYTHING I CAN TO STOP IT. it's not working. school will be a problem, YET AGAIN. i cannot CATCH A FUCKING BREAK.

i'm not weak.

just worn the fuck down, and tired of everything.

this is me. accept it, or move on.



ps. sorry for the grammar errors and spelling mistakes. i dont really give a fuck tonight.

 

[fennec fox]

Sorry

 

[Ill Saint]

Solidarity.

 

[Deleted member 1235]

That really sucks dude.

I'm one of the morons that knows nothing about CF. Sorry.

 

[nitewulf]

i'm sorry man. try to..hell i dont know what to say...i'd hug you if was there.

 

[Fifty]

Not sure how to reply...But after reading it, you sound like less of an ass than before. Sorry.

 

[norinrad21]

Cheer up bro

 

[Ned Flanders]

While we're on the topic of "me me me", I have to say that this thread is a timely bit of perspective for me given my recent batch of mild depression. My troubles most definitely seem trivial after reading all of that.

Though I have my high moments, and I wouldn't consider myself clinically depressed, I'm generally pessimistic and negative about a lot of stuff. So I can offer you no conclusive answers. The only thing I could suggest is to try not to value your life based on the standards of others. You're not meant to have the life of your brother, or your friends, and while you suffer considerably more than the average person, you've probably experienced a lot of things that give you an advantage in perspective. What you do with that is up to you.

There's no easy way to stay sunny, and I have no clue what makes me genuinely happy (or what genuine happiness even is). But you gotta take another day as another opportunity to find exactly what that may be. Stay tough and try to be thankful with the blessings you do have. Good luck..

 

[Grizzlyjin]

I honestly don't know what to tell you. All I can say is that it is good you're not giving up.

 

[miyuru]

Damn man, just always know that we're always here for you. At least, most of the decent posters are.

And it hurts listening to how you feel. I don't want to blame you for how you feel, well no shit. Just when you say, you feel guilty feeling sick. I know that feeling, feeling guilty, when you know realistically it's not your fault. I don't know it to your degree, I can only imagine, but at least I can relate. I'm sure most of us can.

And I know what it's like to hide things, because you feel ashamed, you feel pressured regarding what others will think, and so on.

IT SUCKS.

I hate it man, and I feel for you. I wish there was something I could do, something to make a difference. There isn't...so I guess this post is all I can offer.

And I want to tell you to take it easy, but at the same time, I don't want to BS you either. I just hope, by the end of your life, you'll be able to say that, really it was worth living.

 

[J2 Cool]

I don't care who you are, everybody wonders where they'll be 5-10-15 years down the road. Everybody has fears of never ammounting to anything, of being a failure, of being left in this state of wishing you were somewhere or someone else. It's in everybody including those you look to and wish you could trade with. Somehow, everybody has something and at the same time have so little.

I believe though that everyone has a story. We're always listening to others story of glamour and accomplishment. They make us wonder, inspire us, scare us. But we never realize that we ourselves have a story to write. It's not going to fall in our laps. I mean, sure, it will, but it would be very low key. We have heard so many stories in our life though, you need to realize that the one most important story of them all is your own. Nobody is going to tell that tale but yourself.

We are all dealt our cards and need to play them in the most right way possible. Go with what you have. Nobody is going to look down on you unless you remain at this point of reflection and foreseeing a bleak future. I completely understand it and sympathize though I don't know the details of your everyday. I do know though, that you need to keep making every situation that comes about in your life, as great as you possibly can. If you sit there without hope and simply watch things go by, it will be as if you never existed. You have an insight on life, everyone does. You have a uniqueness. Let it be known and let others make the judgement. Trust me, if you live life as who you are, an individual without fear of being, there will not be another like you. All the joys of life you look for and greatness, will come with this. What you have to deal with are just details. Stay strong man.

 

[norinrad21]

Just tell her about you, how are you planning to continue to hide it from her? Eventually she's bound to find out and you might probably regret not telling her.

 

[Mike]

That's terrible. I'm sorry to hear it.

 

[Teddman]

Whoa, this is the first time you've gone into the full extent of your CF... I know you've never really glossed over how tough it's been at times for you in the past, but some of those details are pretty gnarly.

Is this your first year in college? School was tough enough, I can't imagine how hard it'd be to keep up if I had a condition like yours. Hang in there...

 

[deadhorse32]

You and i have been around here for awhile. Keep on fighting man.

 

[tree fiddy]

I'm not sure what to say... I know you listened and cared when I was at my lowest point a few months ago and I really appreciate that. You have my support and I'll continue listening to what you have to say.

 

[Loki]

Well that just sucks. Hang in there-- hopefully you can find meaning in your life somehow; that really seems to be what's missing, as trite as that may sound.


As patronizing as it may sound, I really believe that people show who they really are when they're in the throes of illness. My aunt, who passed away last summer at age 50, had terminal cancer and was in a hospice. I went to visit her a few days before what turned out to be the day she died; she was emaciated, weak, and could barely move her lips to talk, yet she was so caring, and so other-centered, that it made you want to cry. She never dwelled on her condition, and always asked about how others were doing, or what was going on in so-and-so's life. Then again, that's how she was even before the illness took over; this is what I'm trying to show you. When you have a solid core and firm, considered beliefs, you stand a much better chance of being able to deal with the despair and chaos that accompany chronic or terminal illness. That's what I feel you need to find, for your own sake. My aunt was a great lesson in charity, empathy, and sacrifice even in her dying days, and all of us will remember that forever. You, too, have learned much from your travails, though you might not be able to focus it into a coherent whole right now due to the circumstances of the moment. But take the time to try to do so and I feel you'll be much better off. Decide for yourself if you want to be remembered as a rock, as someone who, despite his suffering, was an example for others as to how to live. You certainly can't get much more agitated than it sounds you already are. Try as far as possible to think about what's truly important in life-- focus on that, make it yours; what is essential to people is not their "normalcy", but the fashion in which they bear their sufferings, and in what lessons they learn from their failings.


If that sounds overly vague, it's because the truth, and the lessons, that I speak of are different for everyone. It's not my place to tell you what sort of specific thoughts or conceptions will help you find peace-- that's for you to find out. I just feel that what you're going through-- not the physical, day-to-day stuff, which I'm sure is incredibly difficult-- is something that all people go through at some point in their lives, either consciously or subconsciously-- the search for higher meaning, whatever it may be. Certainly, to look at one's own life in isolation can lead to despair; that's why it's sometimes best to view yourself in relation to others (family, friends etc.). It will give you strength, if only because of your love for them. I think that we all go through this underlying search; your illness just brought it to the forefront due to the realization of your own mortality at a young age. Believe it or not, most people nowadays don't struggle with these existential questions until they're well into middle-age (hence midlife crises). I think you can do it, but I also know from experience that it will be the hardest thing you'll ever do, and its difficulty will only be compounded by your illness and what it requires of you, which is something I can't even begin to fathom.


These are not mere platitudes, LS. I'm not preaching; in fact, I'm not quite sure how I'd respond if I were placed in your shoes-- I'd like to think that I'd be strong, and retain my core beliefs, but really, who knows until they're experiencing it? But if given a choice, I'd like to be like my aunt, and like the type of person that I'm sure you can become if you sincerely search for meaning. It's a very sad thing to witness a man who has never found his center, his truth-- whether it's in the case of an illness, or a middle-aged guy who wrecks his marriage because he's going through an identity crisis and starts cheating on his wife or boozing it up; these are all manifestations of an inner deficiency, one that can only be recitified through introspection. Read great literature, read philosophy, get back to nature, spend time with those you love; eventually, with continued thinking upon these things, I feel that your own truth will come to you. When you find it, there will be a peace there that is unshakable, and an integrity and strength that will make you respect yourself all the more. Best of luck to you; God bless.


I leave you with a couple of favorite quotes of mine-- one from (where else ) the Bible, and one from Ralph Waldo Emerson:


"Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things." -- Philippians 4:8


"What lies behind us and what lies before us are small matters compared to what lies within us. " -- Ralph Waldo Emerson

 

[Incognito]

thanks for the kind words, everyone.

loki - the way your aunt handled her disease shortly before she died has been the same way i've handled my problem for 21 years, and it's starting to catch up to me. it's just been about me, and putting out the best possible image to stave off crticisms, pity, or sympathy. tons of people have said that i don't even look or act like i have a terminal illness, but because of the charade, i feel like i've become a person who cannot trust anyone with my truth.

one thing i forgot to mention in the first post of mine was how i've been forever scarred by reading a few pages out of my personal medical records. in there, i found two-three misplaced pages detailing the accounts of my parents with personal pyschologists, who up to two years ago, were struggling with the "truth." one quote, in particular, rattled me. from my father:

"i've let my business become ruins."

thankfully, he had more than enough startup money to set things straight, but in the back of my head, i feel like i have to always be "fine," or put off this great image or it'll send my parents back into a tailspin..

 

[Vennt]

...one quote, in particular, rattled me. from my father:

"i've let my business become ruins."

thankfully, he had more than enough startup money to set things straight, but in the back of my head, i feel like i have to always be "fine," or put off this great image or it'll send my parents back into a tailspin..

Speaking as a dad of a child with a likely lifelong illness (although now known to not be life-threating) I can say you'd have to be careful of reading too much into soundbites in your medical notes.

If questioned by a stranger about the effects of my sons illness on my life I would probably describe the external effects in a fairly sterile manner, moreso even than the single example given here as if you read that line again you'll notice it starts "I've let..." - That right there shows you a choice, undoubtably made without much regard for other options.

Thats how, at least in my experience, parenthood goes, My child is the first priority in my life, Fun, Career, Hopes & Dreams and even relationships with long-term friends all have been sacrificed at various points of my sons first 6 years because of my love for him. If somebody asked what I had sacrificed I'd probably list many of the things that many consider a staple of life, yet I would finish the statement with "...and I would sacrifice it all over again 1000 times, it really is worth it."

 

[AlphaSnake]

I'm not a man of sympathetic words. I'm not good at telling people that everything will be alright, when I don't if it will be. I do really wish that they find a cure for CF, or something that'll set back it's course considerably allowing for a longer life span. Everytime I hear something about CF all I think about is a funny dude I know in Texas. I can't imagine how tough the shit is...but you've gotta' hang in there, man.

In the great (though slightly altered) words of Frank The Tank: You're my boy, Stephen! You're my boy...

 

[Loki]

loki - the way your aunt handled her disease shortly before she died has been the same way i've handled my problem for 21 years, and it's starting to catch up to me. it's just been about me, and putting out the best possible image to stave off crticisms, pity, or sympathy. tons of people have said that i don't even look or act like i have a terminal illness, but because of the charade, i feel like i've become a person who cannot trust anyone with my truth.

Maybe you misunderstood-- with her (and many other people who suffer illness bravely) it was not "just about (them)"; it's about others, and it's about knowing what's truly important in life. This only comes through introspection. The question of motivation also comes into play-- yes, you put on a brave face for people, and may go through the motions of being kind and caring etc., but do you really feel it? Judging by your posts, it sounds to me as if you're still struggling to find yourself in that sense, which is why I made the post I did. We all know that feeling (at least eventually) of "coming undone", when everything you thought was true is seemingly proven to be false or irrelevant; for someone in your position, I'm sure that that feeling must be all the more acute, since the inevitability of the disease ultimately forces you to come to grips with these issues, whereas others can just "push them off until later".


I really want you to try to understand what I was getting at in my post, because I honestly feel that that's the only way you're ever going to find some measure of peace for yourself, what with all the swirling emotions and the wearisome physical demands that the CF places upon you. I'm sure that I'm not the only person who read your initial post and saw someone struggling to find themselves, to find their center; this is not to say that what you've already accomplished isn't a tremendous achievement, and admirable (because it is)-- it's just to say that what you could still accomplish, for your own benefit, is all the greater. After all you've endured, you owe it to yourself to at least try to find meaning and truth and peace, for your own sake; this will invariably improve your relationship with others as well, which is something you seem to be concerned about (trust issues etc.).


Seriously, I wish you the best.

 

[Litigation Manuel]

I'm really sorry to hear all this. I don't quite know what to tell you. All I can suggest, is to find something to believe in. And I don't necessarily mean a religion, but find something to give a focus to your life. Believe in people, believe in math, believe in music, believe in charity, but just something. Give a focus to your life, a foundation. I'm not quite sure what I'm saying, but everyone needs meaning in their lives. Maybe this doesn't apply to you, but it's worth a try.

It's good you're keeping a journal, you need to get these feelings out. It's not right to keep all these emotions locked up inside you, so keep writing, express yourself.

What you said gave me some insight, thank you for sharing this, I'm sure it was difficult to do. I hope things will work out for you.