Sorry for the cross post, but this topic came up on another list, and it  
seemed really pertinent herre too.
> -----Original Message-----
> From: Hydrocephalus Info & Support [mailto:[log in to unmask]] On  
> Behalf Of Kendall David Corbett
> Sent: Wednesday, December 02, 2009 10:27 AM
> To: [log in to unmask]
> Subject: Re: [HYCEPH-L] denial ie relationships

> Christopher, Ingrid, Chris and StacyAnn,

> After my reply to Stacy I went back and read the thread. Everything that  
> Ingrid and Chris said is so true. My first serious relationship was with  
> a girl who had Hodgkin's disease, a form of lymphatic cancer. After I  
> found out that she had it, even though she was in remission, I broke off  
> our relationship. Even though I was 15 at the time, I was as honest with  
> her as I could be. I told Kay that I wasn't ready to get involved with  
> someone who might die. My biggest mistake was trusting my own ability to  
> research information on a disease/condition, which I'd started to do for  
> hydro. I looked up Hodgkin's disease in my Dad's med school text books,  
> which were 20 years out of date, and used that information to base my  
> decision on. When I started asking for info on hydro, Dad had sent me to  
> the hospital library, as he knew his texts were out of date. Kay was  
> healthy at the time (1975), but I looked at those 1950's text books, that  
> said survival rates were around 15% and panicked. I regret to this day  
> doing that. Shortly afterwards, she moved about as far from Wyoming as  
> you can get and stay in the US. I often thought about her, and tried to  
> contact her to apologise. About 25 years ago, I ran into her, and we  
> talked briefly. I wish I'd had the courage to talk to her then or get her  
> phone number so we could have talked.
> Fast forward another ten years (1995) to when Janet and I got together.  
> Janet has CP, as I do, and so I was determined not to let our  
> disabilities get in the way of our relationship. At 35, we both got  
> around fairly well, but both of our physical capabilities have declined  
> in the intervening years. I've gone from a manual wheelchair to a power  
> chair, and Janet's in the process of transitioning to a chair. Our house  
> is set up well for this but we both need help with ADL's (activities of  
> daily living) that we didn't before. Things get tense from time to time  
> when I can't help her with something I used to, or she can't help me in a  
> similar situation. We're learning how to deal with that but it's a  
> painful process (sometimes physically, as well as emotionally). When you  
> do find someone to develop a relationship with, I hope that she is as  
> patient with you as Janet is with me..

> Kendall

> 49 year old trilobite diagnosed in November 1960, shunted in April 1961,  
> diagnosed with spastic diplegic cerebral palsy in 1963, intraoperative  
> stroke during a shunt revision in 1977, resulting in left hemiplegia.  
> Shunt free since 1978 (fenestrated cerebello-pontine angle cyst) -  
> the "silver lining" to the stroke and an infection in 1977. I've worked  
> in the disabilities field for the last 20 years, and have been married to  
> Janet, IMHO, the most wonderful woman in the world, since 1997.
> -----Original Message-----
> From: Hydrocephalus Info & Support [mailto:[log in to unmask]] On  
> Behalf Of Ingrid Exner
> Sent: Wednesday, December 02, 2009 8:00 AM
> To: [log in to unmask]
> Subject: Re: [HYCEPH-L] denial ie relationships
> Hi Christopher,
> Back in university, I had a boyfriend who I was very compatible with. He  
> was
> fun loving, spontaneous, caring etc. We dated for some time and had great
> times. Then, my shunt broke.
> He was as supportive the best that he could be given his age, background
> etc. But, the revision was complicated and I ended up with multiple
> infections. It was hard on him; I was told by friends that he would go for
> walks in the evening, cry, scream etc. His mother was a registered nurse  
> and
> knew more bad stories than good about hydrocephalus. Needless to say, we
> broke up when I got better. And, I was bitter for a while (but it didn't
> stop me from dating others.) It took a while to get over the bitterness  
> and
> for me to realize that it was probably the best thing that could have
> happened to me. For a while, I still dated people who probably couldn't
> accept me and the hydrocephalus- it is a big, complex and mysterious
> package! And, in fact, the true test, I think is when the shunt fails and
> must be revised (my current husband hasn't been through this.) I don't  
> know
> how he will react. What I ca say ad do know is that he accepts that I have
> limitations and that this entity called hydrocephalus ca at times cause m
> great distress. However, saying that, the hydrocephalus has made me the
> sensitive person that I am. Had I not had the experiences that I have  
> had, I
> would not be the person that he currently is and wants to be with. So, how
> can he deny that?
> I hope some part of my rambling resonates. I do think that people have to  
> be
> accepting/ inquisitive and wanting to learn of the hydrocephalus if they
> want to be accepting of us (especially for more romantic/ long term
> relationships). Is it difficult when I am rejected because of the
> hydrocephalus- absolutely and do I get bitter? Yes. But, I also think that
> there is a time and purpose for everything. Not everyone is meant to fully
> understand or get it, and that's okay too. These people may just be casual
> friends- nothing more.
> I hope this helps.
> [PS: I may have also chewed out that person (unless her sole intent was to
> reconnect to apologize) or atleast I would have made it really clear to  
> her
> the affect she had on me in the past and the need for acceptance moving
> forward.)
> Ingrid
> -----Original Message-----
> From: Hydrocephalus Info & Support [mailto:[log in to unmask]] On
> Behalf Of Christopher Range
> Sent: Tuesday, December 01, 2009 10:03 PM
> To: [log in to unmask]
> Subject: [HYCEPH-L] denial ie relationships
> Has anyone ever encountered someone, be it, either someone they wanted
> to be romantically involved with or, someone they were involved with,
> that expressed fear about your health as, being a reason to either, end
> a relationship, not get in a relationship or, as an excuse for a poor
> reaction, when your health took a turn for the worse?
> I know I am being ambiguous. But there is a reason.
> Back in 1998, a year after my (ex)wife left(separated) me, she told me
> that, she had wished for a long time, that my health problems would
> 'just go away'. I found that to be egregiously ignorant on her part,
> since she had all the info about my health, before we got
> married(1992). When she told me that, that is when I finally decided
> to divorce(2000) her. In 1995, I had a seizure in bed and, she just
> stared at me.
> Then, Today, I got an IM(Instant Message) request from a woman I had met
> online back in 2001, via a Christian dating website. When I told her
> back in 2001, about my health problems, she said right from the start,
> that she couldn't deal with them. Today, I approved her, only for the
> purpose of chewing her out. She accused me of lecturing her. I told
> her, I had held the hurt in for a long time. I got off my chest, how
> she hurt my feelings.

> Christopher

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