girlfriend has terminal illness

confused013 · New User Joined: 13 Jan 2006 Posts: 5

This isn't actually about cancer, but it is about a terminal illness so I thought it applied. This is a rather long story so you'll have to bear with me here. I'm 17 and a junior in high school. A year and a half ago a friend of mine tried to set me up with her best friend. We talked online for a while, but when we met in real life it was awkward. She is my age. So a relationship between us never happened, but we stayed really good friends. She has a younger sister who is 13 and a half and in 8th grade. I don't want to, nor should I need to, defend the age difference. Purely by accident at the end of november we started talking (she was on her sister's aim account to do homework). On December 21st we got into a relationship. It had to be an online relationship though because her parents are insanely overprotective, and she didn't want to completely go behind their backs. Around the 25th her parents found out she was talking to me, and banned her from ever talking to me again. We kept talking some behind their backs, and a few days later her sister found an email from me in which I told her I loved her (not something I say lightly if almost ever). Her sister flipped out and banned my screenname from both of their accounts. So I got a new screenname, and have been talking to her like that since. The point of saying all of this is the fact that I can't have any communication with her family, and her family doesn't know about our relationship. I knew that she had some kind of incurable parasite which makes her immune system bad, and is also responsible for her having a bad heart and potentially a bad brain also. What I found out yesterday is that she is dying from it, and there is nothing anyone can do about it. She may have over a year, or maybe only a few months. The doctors don't know. We are extremely close though. We tell eachother everything. Since she told me that she was dying though, she has become very distant. She says she is afraid of hurting people, and she is not afraid of dying but of what she'll leave behind. She tried to break up with me for my protection, but I managed to dissuade her. She said she doesn't want to talk about dying, even though I know she needs to. I am the only person other than her parents and her sister who knows. She doesn't want to see me in real life because she doesn't want our relationship to become too real which will make her dying harder. I fear that she probably won't tell her friends trying to protect them despite the fact that her friends would really want to know. She needs support about dying, but she told me not to talk about it and I'm afraid she will shy away more if I do. I don't know what to do at all. She is sort of in denial. She knows it is going to happen, but she wants to pretend like it won't up until the last minute. I really don't think that is good for her or that it would help her. Any suggestions? Also any questions about things I haven't explained clearly enough I'll be happy to answer.

Roberta1

Sorry to hear about your situation. I know you're probably angry with her family. Try to see it from their side... Age difference aside she IS only 13 and most parents feel that is too young for any kind of relationship. Add in the factor that their youngest child may die and they are helpless to stop it from happening, they will try to "protect" her from anyhting they may think can cause her hardship. That being said, I also feel you are an important factor to her happiness at this point. She cares for you, it's obvious in the way she is trying to "protect" you. Respect her wishes for not wanting to meet you in person, but don't let her pull away from you completely. Research all you can about her disease, seek advice from support groups etc as to how you can be there for her. If you want to be there for her you gotta do it all the way. Be prepared for anything that may happen, and don't freak out on her when it does. Try not to push the issue, and accept whatever position in her life she is willing to give you. Let her know that no matter what you're strong enough to handle it and will always be her friend. She needs one to vent to, talk to, cry to when she's ready. You could also let her knoe, in a VERY nice way, that she's being a bit selfish in pushing you, and all her other friends, away. It's like saying she can love you, but you can't be there to love her. I would be completely devastated and angry if I found out one of my friends had been dealing with this and didn't even give me an oppurtunity to be there for her. The oppurtunity to cram as much memories, love and laughter as possible with whatever time she had, be it years or months. You are already taking big steps in reaching out for ways to help. Again the best way is to empower yourself with knowledge so you KNOW what you're up against. If ever you are confronted by her parents or sister that knowledge will be key in proving to them you truly care about HER and her situation. They may not take you or your feelings so lightly. If they won't allow you to be a 'boyfriend' you could always respectfully ask to be her friend. I think at your age, or more her age, the biggest issue with the age difference is the issue of sex. Come off respectful, and supportive, but stick to your guns. She needs you now more than ever. Good Luck I hope all goes well.
_________________
Love and Prayers
Berta

confused013 · New User Joined: 13 Jan 2006 Posts: 5

Thanks for all of the advice. It really is a tremendous help. I really do care about her, in the way that you only can when you love someone. Concerning what you said about being able to tell her parents how much I care about her if they ever find out. I was thinking of showing them what I wrote to her after she told me she was dying. I am pasting it below, and removing any names.

"I don't know entirely what to say right now so I'm just going to say everything. I know you don't want this to cause me pain, but it does. I do not regret for a second that you told me, and you shouldn't either. What you said about everyone is born for a reason. Your reason for birth was not to die. It was to inspire the rest of us. To bring the most amount of joy into the lives of every person that knows you. To make us want to accomplish great things in your honor. The most important people in history are not the people who do the great things, it is the people who inspire them. You will have inspired more great people than I could list. I know that anything great which (your sister) accomplishes she will dedicate to you, and I can tell you for a fact that I will. So will all of your friends. Do not think about the pain your dying will cause people, but think about the effect you will have had on them. You have made so many lives thousands of times better. That is your purpose. To inspire the rest of us who stay in this mortal world, and to make the rest of our mortal lives worth living in honor of yours. I say the term mortal so much because you are immortal in two ways. I know you will go on to a better place where you will watch over all of us. The primary reason I say immortal though is you will live forever in the hearts of those who have had the honor of knowing you. You will forever be a basis on how I live my life, and I will never stop telling people about you and how wonderful you were. In the amount of people who will tell so many people about you, you will continue to inspire people who will have never met you. Your purpose in life is the greatest purpose that anyone could have, and in spirit, in our love, and in those who you affect and will continue to affect after you're gone, you are immortal. I love you so much. You are amazing, inspirational, phenomenal, wonderful, incredible, kind, caring, beautiful, stunning, gorgeous, intelligent, funny, marvelous, astounding, awe-inspiring, extraordinary, fabulous, superhuman, brilliant, clever, creative, imaginative, quick-witted, understanding, perceptive, wise, incomparable, unequalled, unsurpassed, and one hundred percent flawlessly original. It may not be possible to be perfect, but you are the standard to which everyone else should be compared.

more love than words could express,
me"

Also I'm not angry with her family. She has wonderful parents, and an awesome sister. She loves them all, and it never ceases to be apparent how much they love her. I understand perfectly that they would want to protect her from me. I just wish I'd get the chance to prove they don't have to. I would ask her for some info about the disease, and I was thinking about making the comment about telling her friends. However I'm not going to bring up the topic again for at least a week because she needs some time to not talk about it. Even then I wouldn't try to have a big discussion with her, just mention a couple of points and let her take it from there. Right now I think she largely needs me as a source of happiness and stability, and she knows I'm here for her whatever she needs because I've told her countless times. Again, thanks for your help.

Roberta1

YOU are completely amazing. For someone so young to have the insight and compassion that you have shown after being with your girlfriend for such a short time is phenomenal. Not only are you blessed to have shared her life, she is truly blessed to have you. Your are completely correct in your approach, giving her space and time, and you're right in thinking she needs normalcy. Sometimes the easiest way to cope with being sick is forgetting that you are. Your letter to her was beautiful and eloquently put. I know people twice and 3 times your age who could not deal so well. If you do get the chance to share it with her parents, do so. It speaks volumes of your love for her, and the maturity you posess. Good luck with all, and know that the world is blessed to have someone like you.
P.S. try to search online for info on her condition before asking her, sometimes it's hard to vent about a problem when you have to explain the whole story. Just the thought of explaining it all is enough to discourage you from venting
_________________
Love and Prayers
Berta

confused013 · New User Joined: 13 Jan 2006 Posts: 5

I don't even know what to say. All of that means so much to me, and thank you. Although even that sentence doesn't really seem expressive enough. All of your advice and everything you've said is exactly what I needed to hear. From your understanding of the situation, and how it needs to be handled I don't doubt that the world is just as blessed to have you. Thanks again. I'll try doing some online research, but I can't do anything specific because I don't know the name. Actually I'm not entirely sure that she knows the name either. What I've been thinking about doing is I have a friend who she told. She started talking to him because I showed her this debate he made, and she wanted to compliment him on it. He is brilliant though. He has read all of the greatest philosophers. He is an athiest, but he read the bible just to get a new perspective on things. He's also only 15. I know she also thinks he's brilliant. She told him she was dying the night she started talking to him because she needed to tell someone, and it wouldn't affect him. So what I was thinking is with me what she needs right now is "normalcy," but from him they've only been talking a couple of days and I think she is able to talk about dying more easily with him because it isn't really affecting him and she doesn't have that need to protect him. In this way he might be able to discuss with her a lot of the things that I currently can't say without upsetting her. Of course he wouldn't pressure her, and he'd back off if she told him to, but I think it would work better than trying to force the subject up between her and I every so often.

confused013 · New User Joined: 13 Jan 2006 Posts: 5

I talked to her this morning. She says she spent the morning looking through old family photos, and watching the rain. It hit her really hard then that there wouldn't be more photos of her, and she wondered if she'd ever see the rain again. She says she told a friend of hers this morning, and that was awful enough. She doesn't want to go to a support group or anything, but she wants just one other person with a terminal illness she can talk to. Any idea how I can find someone for her? I don't really feel like saying much right now. When she said she hoped she'd see rain again it kinda hit me all over again.

brainman · Posted: Mon Jan 16, 2006 1:07 am Post subject: I have a suggestion for you

I have been following your post and am so sorry you and your girlfriend have to face the potential of death at such an early age!

I am responding now because I know exactly where you need to go: www.griefnet.org. Get in contact with Cendra Lynn and tell her that I, Jim Hawkins, referred you. Cendra and I worked together in establishing GriefNet. It is a series of moderated mailing list concerning death and dying. There is even a "Kids only" list. Cendra can put you in contact with someone who can offer your girlfriend support… even if it is via emails. I am sure her parents will not object once they take a look at the website.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

confused013 · New User Joined: 13 Jan 2006 Posts: 5

Thanks for the offer Jim. I will certainly look into the site, but my girlfriend asked me not to try and find anything for her because she wants to deal with this herself. So if she brings up the topic again I'll give this a shot. As for right now, she is in the hospital again, and the fact is every time she is in the hospital it's an if as to whether or not she will come back. In the meantime, through a weird set of circumstances, her sister is on the verge of finding out about us, and unless I get really lucky will know by the end of today. Then one of my girlfriend's best friends who I've been getting kind of close to is hitting a major depression, and doesn't even know that my girlfriend is dying yet. So I'm afraid of what she will do when she finds out, or worse if she finds out when my girlfriend dies. So in short I don't know how to handle myself, I don't know how to handle her sister, I don't know how to handle her friends, and I don't even know my girlfriend's current condition nor do I have any means of finding out or contacting her. I'm kind of clueless and numb right now. Thanks for the help though, and I will definitely look into the site.

brainman

[quote="confused013"]So in short I don't know how to handle myself, I don't know how to handle her sister, I don't know how to handle her friends, and I don't even know my girlfriend's current condition nor do I have any means of finding out or contacting her. I'm kind of clueless and numb right now. Thanks for the help though, and I will definitely look into the site.[/quote]

Hardly any of us knows how to handle a crisis like you are faced with. At times it feels like it is just too much. But with the support of friends and family, we can make it... you can make it. Dude, don't give up or give in.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Roberta1

Sorry haven't had a chance to check in the past couple of days.
Confused13- Sorry to hear your girfriend is in the hospital. Praying she pulls through and can go home soon. As Jim said, Hang in there. This is no small thing your dealing with. Take care of you first, you can't help anyone else if you can't help yourself. Is there anyone else that can help with your friend and her depression. Try to get her to see a counselor or look into any peer sites that may help. As for your girlfriends sister finding out, I believe things happen for a reason. Maybe this will be your chance to show her and their parents your true feelings and intentions. Opening up that relationship will take a lot of stress off of both you and your girlfriend. The less she has to worry about at this point the better. Then she can focus more energy on being well. Also opening that realtionship will allow you to stay current on her condition. It sucks to not know. I hope all works out for you soon. Remember you can't fix everyone's problems and right now you have your own to worry about. Be a friend to all, but don't carry their burdens. The weight of it all can eventually bring anyone down. Stay positive, you're in my thoughts and prayers.
_________________
Love and Prayers
Berta

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