[Nfbc-info] on discussing medical conditions, pain etc. on this list

Mon Nov 9 21:32:54 UTC 2015

Hello Mary,

Although I can see how a list serve such as this could get cluttered with those who are seeking support from the Federation, I do disagree with your thoughts on taking medical issues off this list and other blindness related issues that individuals are having difficulty in processing. How would one know if a medical problem or an adjustment to blindness can be supported if they didn't ask the question on this list? There will be many new members that may be seeking this kind of information and the method that one seasoned Federationists have handled it or valuable resources may benefit not only the one that seeked help from the list. I'm only expressing my concern that if you don't want medical or other types of discussions on this list, than where can an individual go to seek support. 

Thanks for listening.

Warmest regards,
Eileen

Sent from my iPhone

> On Nov 9, 2015, at 12:16 PM, Mary Willows via Nfbc-info <nfbc-info at nfbnet.org> wrote:
> 
> Hello Everyone:
> I am glad that this discussion is taking place.  This gives me an
> opportunity to talk about the purpose of a list.  
> 
> I agree with you Lauren that we all can use a shoulder from time to time.
> This forum is a great place to meet people who are living life in a similar
> situation.  However, discussing medical issues is not appropriate for this
> list.  There is no law that says you cannot respond to a message from
> someone and suggest that they give you a call off list to talk more about
> their situation.  In fact, I recommend that you do that.  What a great way
> to get to know others with similar experiences.  
> 
> The purpose of this list is to share current information about issues
> concerning blindness and the National Federation of the Blind of California.
> If you go to the national website at:   www.nfb.org you will find a link for
> lists and discussion groups.  It is amazing how many different topics are
> covered there.  I don't know if there is one in particular about being blind
> and the medical situations that arise as a result but, I wouldn't be
> surprised if there is.
> 
> From time to time the list monitors find it necessary to remind people that
> we are not the only ones who are seeking information from our lists.  All I
> ask is that you be aware that there could be people hunting for information
> about blindness in California who would be really turned off by rather
> graphic discussions about medical issues that don't really improve the lives
> of blind people as a whole.  If a lister is looking for a shoulder to share
> personal stories, You can contact each other and have telephone
> conversations or email exchanges till your hearts content.
> 
> I hope this helps everyone to understand the purpose of a list.  If you
> would like the phone number of the person with whom you were sharing medical
> experiences, I will be glad to pass it along to you.  Or you can simply
> write back and tell him to give you a call.  I think you would be a good
> support to others.
> 
> Sincerely,
> Mary Willows
> 
> 
> 
> The National Federation of the blind knows that blindness is not the
> characteristic that defines you or your future.  Every day we raise the
> expectations of blind people because low expectations create obstacles
> between blind people and our dreams. 
> You can live the life you want; blindness is not what holds you back.
> 
> National Federation of the Blind of California (NFBC)
> 3934 Kern Court
> Pleasanton, CA 94588
> 925-462-8575
> 
> Thank you,
> Mary Willows, President NFBC
> mwillows at sbcglobal.net 
> 
> 
> 
> -----Original Message-----
> From: Nfbc-info [mailto:nfbc-info-bounces at nfbnet.org] On Behalf Of Lisa
> Irving via Nfbc-info
> Sent: Monday, November 09, 2015 11:37 AM
> To: 'NFB of California List'
> Cc: Lisa Irving
> Subject: Re: [Nfbc-info] on discussing medical conditions, pain etc. on this
> list
> 
> Hi Lauren, 
> 
> 
> I have a similar take on this topic. Let me begin with reminding all of us
> that the Federation and everything it stands for does so with, "Love, Hope
> and Determination". This, in my opinion, includes candid discussion about,
> enucleation of the eye; better known as removal of the eye. 
> 
> The first word in the short tagline, "love" means unconditional acceptance. 
> 
> The second word, "hope" is, "grounds for feeling hopeful about the future".
> Another definition of hope is, " someone (or something) on which
> expectations are centered" . 
> 
> Let's face it, losing your sight is a loss. We grieve loss, including the
> loss of our vision. My parent's generation, as a whole, lived by the
> philosophy, "pick up your bootstraps and keep marching". In other words, get
> over it; stop feeling sorry for yourself and just move on. Many of us
> working or volunteering in the Human Services field know otherwise.  
> 
> Lauren, I see room for meeting on middle ground, that is, curtailing
> blow-by-blow graphic descriptions of any surgical procedure may help listers
> to focus and hear the message; the issue. 
> Best-
> 
> Lisa Irving
> 
> -----Original Message-----
> From: Nfbc-info [mailto:nfbc-info-bounces at nfbnet.org] On Behalf Of Lauren
> Merryfield via Nfbc-info
> Sent: Monday, November 09, 2015 2:13 AM
> To: 'NFB of California List'
> Cc: Lauren Merryfield
> Subject: [Nfbc-info] on discussing medical conditions, pain etc. on this
> list
> 
> Hi,
> 
> I've been thinking, after a few comments asking us not to discuss medical
> conditions, pain and the like on this list; that it is a blindness-only, NFB
> list. I think differently about that issue. 
> 
> 
> 
> 1:I think that if we truly care about each other, we are willing to be a
> listening ear about other aspects of our lives besides blindness. Blindness
> is only one characteristic that we have that makes up the totality of who we
> are. Learning to be a listening ear is a good thing to learn.
> 
> 2:It is good for a person to be able to talk to someone about the things
> that are bothering them. It is therapeutic and a lot better than stuffing it
> in. 
> 
> 3:We can learn to have empathy with others. I have had medical and pain
> issues throughout my life so I do have empathy for others who do. 
> 
> 4:We don't see each other that much except on this list, so I think it is
> okay to share other aspects of our lives so that we get to know each other
> better and care about each other. If we only relate to someone's blindness,
> in a sterile way, there is no caring or camaraderie there. To me, when
> someone is intolerant of such posts, they are telling the rest of us that
> they don't care. That is sad. 
> 
> 
> 
> I, for one, have been able to help several blind people over the years who
> have lost an eye or both eyes. It is a traumatic decision for someone to
> make and I had to talk to other blind people first before I could make the
> decision to have it done. It is definitely a blindness issue and it comes up
> every now and then. I have been able to help regarding prosthetic eyes also.
> There are people who have never heard of them who need them. I am always
> glad to help make the situation less scary for the person having it done. I
> know some may think it is gross, but gross is not life or death; it won't
> hurt anyone. 
> 
> 
> 
> I was married to a guy who had one medical issue after another. I was a
> little grossed out when I first met him but I learned to tolerate and accept
> what he was dealing with. He really appreciated my acceptance of him. I
> learned not to be grossed out by some of his issues and he told me once that
> many people avoided him because of them. He passed on 8 years ago and I am
> relieved now that I knew him and that I allowed myself to get ungrossed by
> him and be there to support him. That support, from me and a few others,
> probably lengthened his life. 
> 
> 
> 
> 5:If I can do it, you guys can. I know I come from a lifetime of medical
> issues, however, I think that others can learn to become more tolerant of
> situations that they have not experienced. One never knows when it might be
> your turn, or a family member's turn, or a friend's turn, and you would want
> to be there for them, wouldn't you?
> 
> 6: When you're on your death bed, and, yes, sometime you will be, you aren't
> going to think about how many times you answered to the call of just the
> blindness aspect in someone; you are going to think about whether you cared
> about, or even loved, other whole people, warts and all, as someone put it.
> You might wonder if you lived your life well and made a difference while you
> were here. Listening to someone else's life stuff might take some extra
> time, but it is a way of making the world a better place, one person or
> issue at a time. 
> 
> Thanks and hope I don't get kicked off of the list for getting on my soap
> box. 
> 
> Lauren
> 
> 
> 
> Blessings in Jesus' name:
> 
> My digital evangelism blog is at:
> 
> www dot ask in jesus name dot org (you need to retype it) 
> 
> Psalm 34:1-2 I will bless the Lord at all times: his praise shall
> continually be in my mouth. My soul shall make her boast in the Lord: the
> humble shall hear thereof, and be glad. 
> 
> Advice from my cats:"meow when you feel like it." 
> 
> 
> 
> 
> 
> 
> 
> 
> 
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