[nabs-l] Blindness is scary-how to teach otherwise while still being compassionate

Wed May 21 02:19:00 UTC 2014

Hi all,

Wow, I wasn't expecting this thread to continue after being dormant
for so long, but thanks for your messages.

I think she's kind of accepted it by now.  She can still read print
without modification, drive, etc, so the big thing for her is just
preventing neurological deterioration so it doesn't get any worse.
Our interactions did get better; once she started actually doing
things again, and not doing the "woe is me" thing, things got mostly
back to normal.  It was funny, because my other roommate was the one
who really said, "You have two choices; you can waste all your time
thinking of the worst possible scenario happening to you, or you can
carry on and, if it does happen, at least you would have made the most
of what you had while you had it."

Like many of you, I have never known a life without visual impairment.
 I may possibly have one memory of actually being able to see out of
both of my eyes, but it's very fuzzy because I was really young when
my one retina detached.  I grew up knowing that I would probably lose
what sight I had at some point, and my parents taught me that was
okay.  My friend and I are common in that we are treating for
prevention of further loss, but the attitudes at least were really
different.

The good news is that her condition is curable.  Most people take meds
for a year to a year and a half, go to regular check ups with
neurologists and eye doctors, and are otherwise fine.  If I recall
correctly, somewhere between 20 to 30 percent of people relapse within
ten years, but the majority of people have it as a one time thing.

I have tried to be careful on getting her into the blindness stuff,
because she still doesn't think of herself as even being that way.  I
think that especially since she can drive still, that she just doesn't
think much of it.  Granted, I know people with conditions like
albinism who have conditional drivers licenses that allow them to
drive when they can adequately see to do so, and even completely
sighted people who are in the NFB and love it.  I did attend our state
NFB convention a few weeks after she received her diagnosis, and
although I didn't push her to make her think I was evangelical about
the organization, I was open about where I was going, and what I would
be doing there.  It also helped that my college marching band was
asked to perform in the welcome portion of the convention, so I could
also tell her what people in our marching band of which we are both
members were going to do.  She also knows that on Friday nights when
I'm talking on the phone to a bunch of people that I'm in student
division meetings, but I didn't want to push her into it if she wasn't
open to the idea.

There's a fine line you kind of have to walk, and I've learned that.
I think her attitude could benefit from meeting blind people other
than me, but taking her to a group function full of blind people, when
she's resistant to the idea of identifying herself as visually
impaired, won't do any good.  I'll do what other federationists have
done and invite when it feels right, and let her choose what she wants
to do.

Thank you all for your advice, comments, and support.  I have learned
a lot from this experience, and I am grateful to have awesome NABS
members who contributed their perspectives and ideas.  You all are
awesome.

On 5/20/14, Alana Leonhardy via nabs-l <nabs-l at nfbnet.org> wrote:
> Hi. Don't let her isolate myself. I lost both eyes three years ago and
> didn't get the support I needed. For someone who had vision, losing it is
> frightening. It takes time to accept it and even more time to realize that
> you aren't less of a person. Get her connected with the blind.
> Best, Alana
>
> Sent from my iPhone
>
>> On May 20, 2014, at 9:21, Ali Steenis via nabs-l <nabs-l at nfbnet.org>
>> wrote:
>>
>> Hi there,
>>
>> I can only imagine how difficult it must be to go through something like
>> this. Because I have been visually impaired since birth I cannot fully
>> understand. But I did lose the majority of my sight in my junior year high
>> school and I admit it was the hardest year in my life. I'm curious if you
>> can pass on some books to read for her. There are lots of good reads out
>> there that I think may help.
>>
>> I encourage you to look up a guy who is a major spokesperson for Guide
>> Dogs for the Blind. Not sure of his exact name but his handle on twitter
>> is @belloism. He is a young journalist who was fully sighted until his
>> twenties when he lost his vision all at once. He has a book that details
>> his story of going from life with sight to life without. He is a highly
>> successful journalist and author and has really embraced his new life.
>> If you think reading his book might be good for her then please shoot me
>> an email. I would love to talk more about stand be sure you can find the
>> book.
>> I also understand how this can be hard for you to watch. All you can do is
>> be supportive. To us, because we are used to life without sight, it
>> doesn't seem to be as big of a deal as it may be for them. All you can
>> really do is be supportive and be a resource if she chooses to reach out
>> to you to learn.
>> Feel free to email me if you'd like to chat more.
>>
>> I will be praying for you and your friend.
>> God Bless,
>> Ali
>> Ali Steenis
>> Seattle Pacific University
>> 2014 - 2015 New Residence Hall/Emerson Hall Senator
>> steenisa at spu.edu
>>
>> Perseverance is a Habit.
>>
>>> On May 20, 2014, at 8:31 AM, Bridget Walker via nabs-l
>>> <nabs-l at nfbnet.org> wrote:
>>>
>>> Hi Kaiti and all,
>>> I have both been through the challenge of deteriorating vision and have
>>> friends who have gone through it. From what I remember my vision loss the
>>> drastic anyway took a few years. I just got used to it. My brain would
>>> not process  the messages sent from my eyes after so many years and here
>>> I am. I'm  not totally blind but, nine times out of ten whatever residual
>>> vision I have is not functional.
>>> Anyway, what do you do? I got help. I received all the help I could get.
>>> I needed to be educated about my neurological condition and how it will
>>> effect me each day.
>>> When my friend went through it I was like an emotional support. I was the
>>> person they called saying you will never guess what I did today and go
>>> off on a rant about all the challenges they faced through the day.
>>> Sometimes I could offer tips. That was all about reading my friend that
>>> point. Is it the right time to give my two sense?
>>> As hard as it is to see sometimes you have to watch the person fight
>>> through it. That is the only way they will learn. At one point I refused
>>> to use my cane during the process. I guess my thought was I have always
>>> had vision loss so what is a little more from my acuity.
>>> I can't put all of it in one post we would be here all day. If you would
>>> like to talk at any time feel free to contact me.
>>> Bridget
>>>
>>>
>>>
>>> Sent from my iPad
>>>
>>>> On May 20, 26 Heisei, at 8:01 AM, Carly Mihalakis via nabs-l
>>>> <nabs-l at nfbnet.org> wrote:
>>>>
>>>> Good morning, all,
>>>>
>>>> Hell, if we had to live as a sighted person, it would be equally
>>>> disconcerting. Try laying that on your friend.At 09:33 PM 10/13/2013,
>>>> Kaiti Shelton wrote:
>>>>> Hi all,
>>>>>
>>>>> I am confronted with an interesting situation.  A very close friend of
>>>>> mine may/may not have a neurological proglem which, if left untreated,
>>>>> could cause damage to the optic nerve and therefore blindness.  I'm
>>>>> trying to be a good friend and be supportive, because what she's going
>>>>> through is definitely not comfortable or easy by any means, but she
>>>>> doesn't even have the test results or know of a treatment plan and
>>>>> she's already thinking about the what ifs associated with going blind.
>>>>>
>>>>> It's really difficult, because I realize that it is scary to think
>>>>> about; I probably would not be a happy camper if my vision drastically
>>>>> changed, and that's even with the knowledge that it could do so in a
>>>>> way that would further limit the sight I have/make me totally blind at
>>>>> any time if the right thing were to go wrong having been drilled into
>>>>> me since childhood.  I would imagine that discomfort/annoyance would
>>>>> be at least ten-fold for a person who has spent nearly two decades as
>>>>> a sighted person, with little to no contact with a blind person until
>>>>> they met me in college.  Yet, I feel somewhat awkward because I know
>>>>> that blindness is not the worst thing that could happen to a person by
>>>>> far, and that I've shown her by example that one does not need sight
>>>>> to do well in school, to cook and clean around an apartment, to have a
>>>>> job, or to be successful in general.  I realize that seeing someone
>>>>> else do things differently and imagining yourself have to do them a
>>>>> different way is terrifying too, if I had to suddenly switch to using
>>>>> a foreign language or sign language to speak I'd definitely be
>>>>> freaking about the ramifications of being out of the loop, and perhaps
>>>>> that is what this is like a bit.
>>>>>
>>>>> I'm just trying to think of ways that I can be supportive while still
>>>>> showing her that even if the worst does happen, things can be
>>>>> done---just differently.  I feel like that is one of the best ways I
>>>>> can be supportive, because I have the knowledge about the subject that
>>>>> others around her do not, and since blindness has such a bad
>>>>> connotation, it is possible that those who don't know much about it
>>>>> are not helping the situation by panicking themselves.  I'm trying to
>>>>> be empathetic as well, because although I have lost vision in chunks,
>>>>> I am probably the only person she knows who has experienced any form
>>>>> of vision loss, and there was a time in my younger teen years when I
>>>>> was terrified of losing all of my vision in which I had to put
>>>>> blindness into perspective and realize that much worse could happen to
>>>>> a person, too.
>>>>>
>>>>> So far I've been telling her to not freak about it is she doesn't even
>>>>> have test results yet, which I realize is much easier said than done
>>>>> but I thought it was the best I could do.  I've also reminded her that
>>>>> even if she does have this condition there are treatment plans which
>>>>> could prevent vision loss, so even if she were to receive the
>>>>> diagnosis it is not a death sentence for her sight.  I do not know
>>>>> what else I could do at this point but remind her of those things,
>>>>> since the rationalization seems to help for a while once she thinks
>>>>> through it.
>>>>>
>>>>> I would love to hear from people who have had similar experiences
>>>>> and/or lost sight later in life.  If you are the latter and you knew
>>>>> there was a possibility of blindness before it happened what specific
>>>>> aspects about blindness bothered you the most?  What, if anything, did
>>>>> others do that made you feel a little better about the situation?
>>>>> What do you wish others would have done to help you?  What would you
>>>>> suggest I do to help my friend?  Did contact with other blind people
>>>>> help you durring that time?  (The thing I'm worried about is her
>>>>> saying, "Well you can't empathize because you don't know what it's
>>>>> like," because in terms of having the sudden shock I do not, but
>>>>> everything else I do).  Any thoughts?
>>>>> --
>>>>> Kaiti
>>>>>
>>>>> _______________________________________________
>>>>> nabs-l mailing list
>>>>> nabs-l at nfbnet.org
>>>>> http://nfbnet.org/mailman/listinfo/nabs-l_nfbnet.org
>>>>> To unsubscribe, change your list options or get your account info for
>>>>> nabs-l:
>>>>> http://nfbnet.org/mailman/options/nabs-l_nfbnet.org/carlymih%40comcast.net
>>>>
>>>>
>>>> _______________________________________________
>>>> nabs-l mailing list
>>>> nabs-l at nfbnet.org
>>>> http://nfbnet.org/mailman/listinfo/nabs-l_nfbnet.org
>>>> To unsubscribe, change your list options or get your account info for
>>>> nabs-l:
>>>> http://nfbnet.org/mailman/options/nabs-l_nfbnet.org/bridgetawalker13%40aol.com
>>>
>>> _______________________________________________
>>> nabs-l mailing list
>>> nabs-l at nfbnet.org
>>> http://nfbnet.org/mailman/listinfo/nabs-l_nfbnet.org
>>> To unsubscribe, change your list options or get your account info for
>>> nabs-l:
>>> http://nfbnet.org/mailman/options/nabs-l_nfbnet.org/bearboy153%40aol.com
>>
>> _______________________________________________
>> nabs-l mailing list
>> nabs-l at nfbnet.org
>> http://nfbnet.org/mailman/listinfo/nabs-l_nfbnet.org
>> To unsubscribe, change your list options or get your account info for
>> nabs-l:
>> http://nfbnet.org/mailman/options/nabs-l_nfbnet.org/alana.leonhardy%40gmail.com
>
> _______________________________________________
> nabs-l mailing list
> nabs-l at nfbnet.org
> http://nfbnet.org/mailman/listinfo/nabs-l_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> nabs-l:
> http://nfbnet.org/mailman/options/nabs-l_nfbnet.org/crazy4clarinet104%40gmail.com
>

-- 
Kaiti