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The day my sister died

The day my sister died. Today my Sister finnaly died, she had a serious genetic disease. She was my little angel and slept peacefully into her death. We waited

Today my Sister finnaly died, she had a serious genetic disease. She was my little angel and slept peacefully into her death.
We waited 2 years while she was bedridden, it were dreadfull days but now its finnaly over.

I just wanted to share this with some people maybe you guys can just talk with me ask stuff or share your own stories.


The day my sister died. Today my Sister finnaly died, she had a serious genetic disease. She was my little angel and slept peacefully into her death. We waited

I live with this curse and maybe with a lot of bad luck my own kids will contract the disease and my parents lost already a kid before i was born.

en.wikipedia.org/wiki/Cystic_fibrosis

EDIT: I just wanted to reply to some things i read here now after sleeping,

First of all to all the people going "HURR **** YOU this is supposed to be funnyjunk not sad stuff" and the guys acussing me of thumbwhoring, just **** you :^)

Another comment i read often was the question how old she was, she just turned 19, 3 months ago and yeah she had a very fullfilled life before she got bedridden

and lastly the why have kids when you´re carrier of a genetic disease, with new technology it is possible to determine if the kid will have CF or not already in the Womb, and if needed perform an abortotion.

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Views: 26926
Favorited: 17
Submitted: 01/07/2016
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+154
User avatar #3 - vincentvalkerii (01/07/2016) [-]

I wish I could say you get used to people dying. I never did. I don't want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don't want it to "not matter". I don't want it to be something that just passes. My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can't see.

As for grief, you'll find it comes in waves. When the ship is first wrecked, you're drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it's some physical thing. Maybe it's a happy memory or a photograph. Maybe it's a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don't even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you'll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what's going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything...and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it's different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O'Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you'll come out. Take it from an old guy. The waves never stop coming, and somehow you don't really want them to. But you learn that you'll survive them. And other waves will come. And you'll survive them too. If you're lucky, you'll have lots of scars from lots of loves. And lots of shipwrecks.
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-27
User avatar #113 to #3 - norkasthethird (01/08/2016) [-]
welcome to fj, land of tl;dr
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#145 to #3 - gloriousthighs (01/08/2016) [-]
I'm not quite sure what happened to me but I was once terrified of death, both the death of those I loved and my own end. I would randomly cry at night occasionally to the thought of my dog dying when I was a kid, couldn't handle the thought. Then I guess my brain started to put up defenses. Death no longer affects me, it gets no reaction out of me. If I go to a funeral and cry it would be because I would see how sad everyone else is rather than actually being sad myself. My granddads best friend breaking down during a speech was difficult but actually loosing my grandfather was not.

Any ideas?
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User avatar #146 to #145 - vincentvalkerii (01/08/2016) [-]
I think you're right,
on the putting up defenses,
Because we're all afraid to die.
For the longest time I wouldn't sleep, or close my eyes without passing out from sheer exhaustion, Because I was afraid any moment would be my last.
But It comes to the point, where you just have to live. And take everyday as if it is your last.
Don't worry that you don't cry anymore, and you're not afraid.
It's natural.
It's a defense to help you keep going on.
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#147 to #146 - gloriousthighs (01/08/2016) [-]
Hopefully. I don't mind missing out on the pain of death it just gets worrying when it might mean not only do I miss out on the negative emotions but also the good. My longest relationship broke down in part because I had trouble feeling love and I'm not sure if that was my fault or what. Perhaps it was just a case of not knowing you were in love until it was gone which sucks now when it won't go away.
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User avatar #150 to #147 - vincentvalkerii (01/08/2016) [-]
We all struggle with the complexity of emotion in daily life,
I've always found it impossible to make myself happy, and keep another happy.
One of many reasons that I find I work better alone.
I had the same problem when I was going through my death obsession,
I didn't wanna eat, Didn't wanna game, Didn't wanna talk.
I just kinda turned off all emotion and ability to live beyond basic survival.
It was pretty soul crushing. But with enough time it normally will pass,
Because living like that, isn't living at all.
And to lose something you love, and hold dearly.
That's a pain that never goes away.
But it's a pain you learn to embrace and learn from.
It takes a lot to keep going, Because living is hard.
Even without including the stress of work, love, and just making it daily.
Keeping yourself happy, and alive. Is hard.
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#152 to #150 - gloriousthighs (01/08/2016) [-]
I like when people actually have similar experiences and understand these things. It is hard and I've really not found any solutions to make these things better other than patience. Waiting for it to pass even when it feels like it never will is usually the only thing that can be done.
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User avatar #153 to #152 - vincentvalkerii (01/08/2016) [-]
You're very right,
Patience is the easiest way through it.
Most of the time, all you can do is wait.
And hope you can pull yourself through it.
But like I said prior.
You don't have to do it alone.
It takes strength to ask for help.
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User avatar #151 to #147 - vincentvalkerii (01/08/2016) [-]
But you shouldn't worry so much friend,
What got me through it all,
Was finding someone that pierced straight through all that worry, and fear.
Be it a friend, Or a lover.
It's always wonderful to know there is a hand to reach out to, When you can't pick yourself up.
Life is a journey, And we don't have to do it alone.
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+15
User avatar #6 to #3 - tsukami [OP]ONLINE (01/07/2016) [-]
It kinda helps, i can just learn from all of this and not sink into my depression hole again.
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#21 to #6 - jaythreetee ONLINE (01/07/2016) [-]
Wish I could help, man. If you wanna game I'm here other than that I can just feel with you. I don't have anything to say that would make this hurt less, but I can say that you're a great brother for feeling this much. You can at least feel better that her pain is over now.
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User avatar #9 to #6 - vincentvalkerii (01/07/2016) [-]
You'll always have family here, Buddy.
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User avatar #10 to #6 - vincentvalkerii (01/07/2016) [-]
So, If you need someone to talk to.
I listen well. Alright?
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#4 to #3 - vincentvalkerii (01/07/2016) [-]
Not mine,
But I thought it might help you.
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User avatar #98 to #4 - superffuzzylogik ONLINE (01/08/2016) [-]
That's was absolutely beautiful and accurate.
I'm saving this.
Thank you.
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User avatar #131 to #4 - fuckscreennames ONLINE (01/08/2016) [-]
where did you get this from if it's not your's? because that is quite possibly the greatest way to describe loss i've ever heard
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#134 to #131 - anon (01/08/2016) [-]
Think he got it from an older gentleman on reddit. Seem to recall reading this a month or 2 ago, try copy pasting it in google and looking for a reddit post
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+43
#133 - anon (01/08/2016) [-]
< Wee woo, FJ police reporting in. Who the **** is OP trying to kid? I seen this same post on 4chan earlier except it was about huntington's disease and NOT cystic fibrosis.

Nice try thumb whore, 0/10. Try harder.
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User avatar #181 to #133 - thejusticar ONLINE (01/08/2016) [-]
still kinda believe op but its really suspicious Damn theres so many similarities.
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User avatar #180 to #133 - wtfduud (01/08/2016) [-]
People keep falling for this **** , It's like they didn't learn their lesson after that one guy got 2500 thumbs, then wrote in the comments it was ******** .
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#160 to #133 - anon (01/08/2016) [-]
**anonymous used "*roll picture*"**
**anonymous rolled image** I'm so glad I actually didn't read beyond the first sentence
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+39
#16 - ocdrawer ONLINE (01/07/2016) [-]
As someone with cysticfibrosis, i'm sorry, mate.
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User avatar #32 to #16 - shadowkingdr (01/08/2016) [-]
how bad?
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User avatar #35 to #32 - ocdrawer ONLINE (01/08/2016) [-]
I almost died 4 times before I was 10, I had a superbug which is the type that's immune to antibiotics and pneumonia at the same time but somehow lived through it. I spend most of the day taking, sterilising and mixing my medications and then waiting through the periods between to take them.
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User avatar #36 to #35 - shadowkingdr (01/08/2016) [-]
if you dont mind me asking, how long do you have?
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User avatar #37 to #36 - ocdrawer ONLINE (01/08/2016) [-]
CF isn't terminal, I made a big recovery after the introduction of Dnase due to me taking my medications militantly and weightlifting for over 3 years. CF doesn't have an official severity distinction like diabetes but it has light, moderate and heavy symptoms, my doctors class me as somewhat moderate but primarily because of my dedication to keeping healthy.
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User avatar #114 to #37 - aerius (01/08/2016) [-]
that's really inspiring man. I've got a chronic condition too and your determination makes me feel better. Keep it up
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User avatar #136 to #114 - ocdrawer ONLINE (01/08/2016) [-]
I appreciate it, man. You keep it up too and feel free to talk to me if you need to ask anything.
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User avatar #38 to #37 - shadowkingdr (01/08/2016) [-]
well yeah but the severity of CF does effect lifespan dramatically
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User avatar #39 to #38 - ocdrawer ONLINE (01/08/2016) [-]
It's as terminal as life is, it purely depends on your current health person by person. Lifespan of CF has expanded dramatically over the years, I used to be told I would only survive until 20 years, now they say average spans can be up to 40 with consistent medical care.
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User avatar #58 to #39 - greyhoundfd (01/08/2016) [-]
I've got at least some good news. They're resuming tests with genetic therapy, and the creation of Crispr Cas9 Highly advanced, accurate, non-invasive, and safe tool for genetic modification means that soon we may see it grow in popularity and ability. You just may live to see your disease cured, especially if you continue to dedicate your life to staying as healthy as possible.
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#64 to #58 - safetyhazard (01/08/2016) [-]
GIF
As a student going into biotechnology CRISPR is going to be a big thing in gene therapy.
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User avatar #65 to #64 - greyhoundfd (01/08/2016) [-]
Theory or practice?
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#66 to #65 - safetyhazard (01/08/2016) [-]
some students in ASU are now using it for testing
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User avatar #67 to #66 - greyhoundfd (01/08/2016) [-]
No no, I mean are you going into biotechnological theory or practice? Are you going as a scientist or an engineer?
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#70 to #67 - safetyhazard (01/08/2016) [-]
Scientist
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User avatar #71 to #70 - greyhoundfd (01/08/2016) [-]
Cool. Have fun, publish papers, don't die.
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#72 to #71 - safetyhazard (01/08/2016) [-]
Thanks English was never my strong point
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User avatar #75 to #72 - greyhoundfd (01/08/2016) [-]
Nah, it's an unusual expression.
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User avatar #63 to #58 - ocdrawer ONLINE (01/08/2016) [-]
Oh neato, we can all only hope it paves a new path for the future. Thanks for sharing!
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#86 - harleyquinzel (01/08/2016) [-]
I don't want to sound cold, but loss is a part of life. Your sister wouldn't want you to mourn her passing, but celebrate her life. Smile, if not for yourself, but for her.
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User avatar #129 to #86 - tittylovin (01/08/2016) [-]
Pretty presumptuous to assume you know his sister more than he does.
This kind of meaningless advice is less than worthless to someone grieving. Go **** yourself.
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User avatar #165 to #129 - alfonshister ONLINE (01/08/2016) [-]
every time i see your avatar it's along with a rude heartless comment.

You need to work on that man.
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User avatar #195 to #165 - ohemgeezus ONLINE (01/08/2016) [-]
tittylovin is right this time, it's wrong to assume how OPs fake sister that doesn't exist would feel >>#133
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User avatar #209 to #195 - alfonshister ONLINE (01/08/2016) [-]
At that point our bro in >129 either didn't know that. Or at least he could have proven his opinion.

And still. That's no reason to start insulting. It's not even the first time, that guy has some anger issues.

"Go **** yourself". Hey thanks man, that's really helpful in a conversation.
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#175 - bwiedieter (01/08/2016) [-]
whythe **** ulyin.webm
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#210 to #175 - plantain (01/08/2016) [-]
OP, why are you such a ******* faggot?
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#206 to #175 - huffe ONLINE (01/08/2016) [-]
notenoughtortillas pls
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User avatar #207 to #206 - notenoughtortillas (01/08/2016) [-]
idk man it'd seem bad to put in a comp cause there's a chance it's real and then I'm the biggest asshat in the world.
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User avatar #213 to #207 - thatoneiranianguy (01/09/2016) [-]
It's probably not given he swapped the type of disease.

I highly down it's legit, besides it doesn't matter.
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#148 - seras ONLINE (01/08/2016) [-]
Umm, guys?
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User avatar #149 to #148 - seras ONLINE (01/08/2016) [-]
Date is the same, so I don't know, really. Anyone knows more?
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User avatar #174 to #149 - thatoneiranianguy (01/08/2016) [-]
Seems questionable, mostly because here he posts a link to cystic fibrosis and in the 4chan one the link is to Huntingtons Disease.
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User avatar #73 - godshandshake ONLINE (01/08/2016) [-]
Sorry to hear that, man.
I hope she gets well soon.
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#83 to #73 - machomustachio (01/08/2016) [-]
She's dead mang. Didn't you read. inb4 it was reference to get well balloon, which is a bit out of taste.
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User avatar #141 to #83 - godshandshake ONLINE (01/08/2016) [-]
it was a reference to a post titled "FJ being FJ".
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User avatar #214 to #141 - machomustachio (01/09/2016) [-]
Turn loose the valve then because if i I didn't see it I haven't been getting my dose of dank memes. My bad
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+14
#1 - anon (01/07/2016) [-]
**** , that's kinda sad
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+4
#173 - vladi ONLINE (01/08/2016) [-]
Chin up dude. There's always that chance for a zombie apocalypse.
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User avatar #166 - empithree (01/08/2016) [-]
well.. look at the bright side. Joe's business is getting better.
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+6
User avatar #18 - heartlessrobot ONLINE (01/07/2016) [-]
That's one thing I don't get. If you've got a serious, lethal genetic disease that you're guaranteed to pass on, why in the ever living **** would you still have children?
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User avatar #119 to #18 - tsukami [OP]ONLINE (01/08/2016) [-]
To clear some **** up, yes im a carrier and there is a chance i will pass it on, but with new technology it is possible to determine if the will have CF or not already in the Womb, and if needed perform an abortotion, my parents have had 4 kids in a whole and 2 were infected and passed away by now
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User avatar #33 to #18 - dshayatopkmn (01/08/2016) [-]
I'm no geneticist, but it may not be a 100% chance of getting it, or maybe there's still a chance of them living a pretty full life before passing. I mean OP is the sibling of the deceased, and they've live at least long enough to learn to use funnyjunk. One in a million chance is still better than no chance at all.
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#54 to #18 - safetyhazard (01/08/2016) [-]
Most people who have these genetic disorders usually have no idea that they have it and go on through out their lives having no difference to a healthy person.
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#57 to #54 - safetyhazard (01/08/2016) [-]
and also some genetic disorders will be just a random mutation even though both parents are just fine.
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User avatar #55 to #54 - heartlessrobot ONLINE (01/08/2016) [-]
Yeah but he clearly knows he has it.
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#60 to #55 - safetyhazard (01/08/2016) [-]
genetic disorders are very rare with cystic fibrosis there's 1 in 4 chance of you being affected hopefully he tested himself and his children of being a carrier or affected. Then treated it at the young age before it got worse.
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User avatar #59 to #18 - greyhoundfd (01/08/2016) [-]
Cystic Fibrosis is a recessive disorder, which means that there is no guarantee that you can actually transfer the disease to your children. New genetic testing standards will certainly reduce the chances that he'll pass it on, if he's sure to screen both himself and his partner. In addition, his parents are likely both heterozygous recessive, which means that there is a 25% chance he will never pass on the disorder.
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User avatar #17 - midnitetokerz (01/07/2016) [-]
Not trying to be a douchebag or anything, but don't have kids if there's a 2 out of three chance they will be afflicted with this disease. Adopt there are tons of little ones out there who deserve a good home and parents. Sorry for you loss, get better!
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#95 - fyaq (01/08/2016) [-]
I'm sorry for your loss.


As a socially retarded person on the internet, take my condolences and a comic about a horse committing sexual assault.
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#13 - tryg (01/07/2016) [-]
I want to say so many things to you, but I don't know how. I'm so sorry for your loss and I hope you will feel better soon.
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User avatar #14 - lean ONLINE (01/07/2016) [-]
everlast - sixty-five roses

Bummer dude. Genetic diseases are no joke. My grandmother was diagnosed with MS 45 years ago, and is failing at the age of 74. I and my siblings do not have it, but carry the genetic markers meaning it can simply occur in reaction to as yet unknown circumstance. My children will potentially be carriers as well. Have a tune and a hug.
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User avatar #15 to #14 - tsukami [OP]ONLINE (01/07/2016) [-]
Damn dude thats fate i wouldnt want to live either, but i guess everyone has his own package. some heavier ones some ligher ones
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User avatar #31 to #14 - gabsmatags (01/08/2016) [-]
I didn't realize someone had already posted this song. Your pain is all too real when strangers can feel it through a computer screen.
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#84 to #14 - pyersamid (01/08/2016) [-]
Me too, my mom has probably it and two of my uncle got it, I know your feel...
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#56 - greyhoundfd (01/08/2016) [-]
Oh Jesus, I am so sorry. One of my best friends and my crush has CF. Probably the only reason I haven't tried to make a move is that I don't want to have it be a really good relationship for both of us and then I have to leave for college or she dies, and that **** is painful to watch happen, especially with a disease like that. At least with, you know, a car accident or something it's fast. Watching someone waste away is just... it's **** man. I'm rooting for you to get through this.
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#176 to #56 - anon (01/08/2016) [-]
Sucks to hear, for both of you. I hope you change your mind and decide it's worth the risk: living alone, with either CF or an unspoken crush on your best friend, is horrible. You live in a stagnant state and nothing changes.

Unrelated, tell her to look into Orkambi. It's a new oral medication that's having amazing effects for a LOT of patients. It requires a couple visits to doctors but the medication should be cheap if she has decent health insurance, which I'm assuming she does since she has CF and is still alive in highschool. I've got decent insurance myself and it's a 30 dollar copay for the meds. It dramatically improves lung function, if she's got the most common CFTR mutation. Definitely encourage her to ask her pulmonologist about it.
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User avatar #78 to #56 - theasexualgamer (01/08/2016) [-]
Same situation here, bro.
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#183 - ninjasinthedark (01/08/2016) [-]
**ninjasinthedark used "*roll picture*"**
**ninjasinthedark rolled image**
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#144 - anon (01/08/2016) [-]
**anonymous used "*roll picture*"**
**anonymous rolled image** LOL get ******
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#143 - gramarkal (01/08/2016) [-]
**gramarkal used "*roll picture*"**
**gramarkal rolled image**
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#140 - anon (01/08/2016) [-]
I'm still waiting for my sis to die, can't wait
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