Path: utzoo!utgpu!news-server.csri.toronto.edu!cs.utexas.edu!yale!bunker!hcap!hnews!129!89!Maggi.Weslager From: Maggi.Weslager@f89.n129.z1.fidonet.org (Maggi Weslager) Newsgroups: misc.handicap Subject: Re: response to your mess Message-ID: <14862@bunker.UUCP> Date: 9 Oct 90 20:26:22 GMT Sender: wtm@bunker.UUCP Reply-To: Maggi.Weslager@f89.n129.z1.fidonet.org Distribution: misc Organization: FidoNet node 1:129/89 - BlinkLink, Pittsburgh PA Lines: 93 Approved: wtm@bunker.UUCP Index Number: 11009 [This is from the Blink Talk Conference] JK> Tom,I appreciate your feedback.I don't think you're being "hard JK> on me",just realistic. John, I'm glad to see that your taking a positive attitude towards Tom's suggestions. Some twelve years ago, when I first learned to use a cane, I was embarrassed to use it. I used to leave my house and walk to the bus stop with my folding cane hidden in my purse and then when I would get off the bus at my destination, I would whip the cane out and then begin to use it. The thought of using it in my own neighborhood where everyone who knew me could see that I needed it made me uncomfortable. Well, the joke was on me 'cause they knew I needed it long before I admitted it. JK> I feel different than all of you JK> because I can still see pretty good.I mean,I still drive during JK> the day! I can empathize with you a little because my RP has left me with less than a three degree of vision in one eye and I sure use that little tunnel as much as I can. Just the other day I was telling Mary Lou and Willie that because of this residual vision, I sometimes override what my guide dog is telling me, a bad habit for sure but a hard one to break. Unfortunately you are in that gray area which finds you sighted in some situations and blind in others. This can be quite a strain at times, not to mention the mixed signals which you are sending to the public. People start to ghink that there are all sorts of things wrong with you because of your reactions. jk> My father has told me several times how,"sorry",he is jk> about the RP.I have two children,one is a boy. I knew ahead of JK> time that he risked getting RP also,but it's not the worst JK> thing he would ever have to deal with. Parents and siblings are a funny lot to deal with at times. There are five children in my family, four girls and a boy. Two of my sisters and I have RP, the other sister had retinal blastoma when she was two years old and had to have her eye removed and my brother has no visual problems. My parents never talked about our RP and I can remember being embarrassed because my two oldest sisters were blind. They lost their sight faster than I am losing mine. My parents musst have put alot of responsibility on the two sighted children because even today I get the feeling they avoid me and my two oldest sisters so they won't have to "take care of us". God, families can certainly be a trip! John, I'm getting the impression that you believe your male child will possibilly develop RP and your female child will not. There is no hint of RP in our familytree except for my sisters and I and I'm wondering what you are baseing your belief on. You mentioned that blindness may not be the worst thing that your child would ever have to deal with. Well, that reminds me of an incident which happened to me recently. A fellow busrider was admiring my guide dog and asking me all the usual blindness questions when he made the statement "It must be such a drag to be blind". I told him that it is all in what you get used to. During the insueing conversation I learned that this guy was unemployed and I stated that it must be such a drag to not have a job. He said "It could be worse, I could be blind". My response was "Yes, but at least I have a job!" You should have seen the smile on my face, I felt so good and my response was so natural. JK> I want to set a good example for them as this progresses.If that means using a cane JK >a cane then that's what I'll do.It's just a hard thing to admit I'll JK> need one. It sounds like you are on the right track to set a good example for your kids. Admitting that you need some kind of mobility aid is a damn hard thing to do and trust me, it doesn't get easier real soon. Last weekend, while I was on the way to a wedding reception, I was thinking to myself how calm and relaxed I felt about going to an unfamiliar place because I knew that my precious guide dog, Fudge, wouldn't let me down. I feel so very confident because of this little mutt, a confidence that didn't grow overnight. I can remember back on times as an early cane user when I would feel so helpless and "handicapped" and every excursion was such a mental strain but now get out of our way buddy 'cause we have places to go and people to see! John, this has got to be the longest message that I have ever left anyone! I feel that you are reaching out to us for support and suggesions and I feel that I can speak for everyone here and tell you that we are here for you! Right gang? Because of the amount of your residual sight, you can't possibly accept blindness and it's accompanying adaptations as yet but you seem to have a good foundation and I'd like to see you build upon it as you need to. Good luck to you John and keep in mind that you have a wealth of support at your fingertips...Maggi -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!129!89!Maggi.Weslager Internet: Maggi.Weslager@f89.n129.z1.fidonet.org