[Ohio-talk] Advice for helping others cope with vision loss

Dawn dlanting at bex.net
Fri Oct 18 04:06:10 UTC 2013

Sorry I don't know what I hit  but  after being blind  I talked to Barbara
Pierce  she enlightened my whole world  I was never aroung blind people
before  and was very scared  what I was gonna do  she made me laugh  she
told me of all the things she has done  andabout the N F B  I listened to
tapes of the brail monitor  I learned  I could be the same person I always
have been  happy  loving life  andmost of all I could do  most of the things
I all ready did  but in a different way  I still am learning  and want to
learn brail    so take it from me a person who could see before aand is in
total darkness  she needs to be aroung other people  people who don't feel
sorry for themselves  she needs the N F B  just the way I feel  Dawn

-----Original Message-----
From: Ohio-talk [mailto:ohio-talk-bounces at nfbnet.org] On Behalf Of Kaiti
Sent: Thursday, October 17, 2013 10:47 PM
To: NFB of Ohio Announcement and Discussion List
Subject: Re: [Ohio-talk] Advice for helping others cope with vision loss

Hi all,

Thanks for the advice so far.  I'm gratified to know that I have been doing
a lot of what was suggested already, but sometimes it helps to hear advice
come from third parties.  Here are a few things that might clarify some of
the situation; I think in my haste to learn what I could do to best help, I
left out some details.

The carrying limit is a result of the treatment, which involved a lumbar
puncture.  My friend was told an old wives tale that drinking caffeine helps
the spinal tap recovery process go faster, and to an extent it does because
it adds a little pressure back to the brain which was taken away by
releasing spinal fluid.  However, since the cause of her condition is having
too much fluid in the first place, and the doctors never said it was a myth
that would actually put too much pressure on her, they needed to put a blood
clot into her back to stop drainage of excess fluid and keep things stable.
The carrying limit, as well as a limit on anything that would cause strain,
is in place to keep the blood clot from coming loose.  She should be able to
carry more after a few weeks, and be able to return to a little more
physical activity as she won't need to protect her back.  Making it tough is
that she's not supposed to try anything very strenuous for 3 weeks, and we
have exactly that much time left of our marching band season.

Some other symptoms, however, are due to the new meds she's on.  Some of
these include fuzzy memory, sensitivity to cold, tingling sensations in
extremities, and a few other things.  They're supposed to help with the
headaches by releiving pressure, but especially since she is still adjusting
to them they're not helping with that much at this point.  They are,
however, making her have some of the other side effects.

Making the situation worse is that she still doesn't know much herself.  She
went in for treatments, but the docs didn't really tell her much.  So, she's
turned to the internet to learn more about it and has formed some of her own
theories about what might happen.  I'm surprised that the doctors did not do
a lot to inform her of what is going on, what causes the condition, etc.
All she knows is that she's on the medicine commonly used to treat this
condition, and if it doesn't work there is a risky surgical procedure.  The
web sites I've found on this condition appear to be very vague, and some
provide information that others do not, making knowing what to believe hard.
Mayo Clinic's web site did not appear to have a positive prognosis listed,
or much of one at all, but Medline Plus said that most people recover after
about 6 months, about 20 percent of people report relapse, and only a very
small percentage of people have such a severe case that they lose all sight.

Preventing vision loss is one of the main goals of treatment, but chronic
headaches seem very troubling to me, especially since they're so intense.
And, because they're from pressure, there really isn't much she can take to
help them as standard pills like Tylenol won't treat that sort of thing.
It's also kind of confusing for me and my sighted roommate to follow what's
going on, because the meds are changing things.  (E.G, before taking them
she said her headaches weren't auditory-sensitive, and after one of our
music classes the other day she remarked that one of the listening examples
our professor played was a bit loud and made the headache worse).

The other thing to consider is that before this she was pretty healthy.  Her
family has a history of neurological problems, but she was really active and
busy as a student and member of several clubs/organizations on campus.  I
think perhaps worse than the fear of losing vision right now is the sense
that she has lost control, because she's in pain, tired, and doesn't like
the effects of the meds she's taking at all.  She feels like her activity is
restricted, and I could see how that would be very troubling when coupled
with a lack of understanding for what is going on.

Karen and Colleen suggested that I get her involved in the NFB.  I don't
think right now is a good time to do so, as she is going to need time to
adjust, but if she's willing in the future I think it has potential to be a
very empowering thing for her.  It's very interesting to see how people from
different backgrounds receive the NFB; my mother, being the parent of a
blind child, was the same and liked the assurance the NFB could provide her
about my future.  A lot of congenitally blind receive it well because it
supports their goals of being independent and on equal footing with sighted
colleagues.  I'm not sure if she will receive it so well at least for a
while.  Knowing about the stages of grief, she'll probably want to distance
herself from blindness at some point, and would feel really out of place if
I took her to a chapter meeting durring that time.  She knows I am involved
with a blindness organization, and since marching band will be over I will
begin going to Dayton chapter meetings in November, so she will know that I
go to meetings.  Rather than invite her along though, I'll just wait and see
what she wants to do.  If there comes a time when she wants to go I will
take her, but if not that will be fine too.

Her mother and grandfather are supportive it seems, but they have met me
before, and I don't know how things were when she was at home this weekend.
The really negative comments I've seen via facebook have come from extended
family.  I still think that could be really damaging to her self-image as a
person with a visual impairment, but I will just have to see what can be
done to educate them.  Mom might be the most receptive person for me to talk
to, as I think she'd welcome any advice that might help.  I am not going to
force myself on the family, as I think I should give them some time too
since this has to be tough for them to watch unfold as well.

Perhaps the worst thing to watch though is that my friend and her extended
family members think that this is sort of like a punishment.
They're very rooted in a really conservative form of Christianity.  My
mother thought I should point out that I and the other blind people who are
born without perfect sight were not punished in the womb or the day we were
born to make her be a bit more realistic, but I also don't want to
disrespect her beliefs because although they're a bit extreme for me
personally, I  respect that they are important to her.
On 10/17/13, Barbara Pierce <bbpierce at pobox.com> wrote:
> Dear Kaiti,
> It is early days for your roommate. She is going to have to adjust to 
> this spectacular loss. She knows full well that you deal with the 
> situation without thinking twice about it, but at this point that 
> probably  just makes things harder for her. You are going to have to 
> be patient. Grab the family if you can to warn against pity-motivated 
> helpfulness. You want to build a support community that is 
> understanding but confident in her ultimate ability to cope.
> I am worried about the headaches and the carrying limits. These strike 
> me as potentially more limiting. I would concentrate on trying to work 
> out coping mechanisms for these troubles. This is not easy for you, 
> but you are bound to be good for her in the long run.
> Good luck,
> Barbara
> -----Original Message-----
> From: Ohio-talk [mailto:ohio-talk-bounces at nfbnet.org] On Behalf Of 
> Kaiti Shelton
> Sent: Thursday, October 17, 2013 10:29 AM
> To: NFB of Ohio Announcement and Discussion List
> Subject: [Ohio-talk] Advice for helping others cope with vision loss
> Hi all,
> I'm asking for advice, because I have very little experience with 
> this.  My friend and roommate, due to some odd medical circumstances, 
> was diagnosed legally blind last weekend.  She still has the vast 
> majority of her vision, (she lost some peripheral, but not enough to lose
her driving priviledges).
> Nevertheless, the diagnosis has her freaking about about the potential 
> for going blind some day in the future.  She is on treatment now so 
> it's possible that her vision won't decrease further at all.  She's so 
> upset about it though that she's fixating on it rather than the other 
> neurological symptoms associated with her condition, which are 
> effecting things like her ability to concentrate , and her ability to 
> walk long distances and lift things above a certain weight is 
> compromised by the treatment she is on.
> She also gets really bad, migraine-level headaches, which are so 
> painful that they'll take her out of commission from whatever she's doing.
> My other roommate and I are a bit unsure of how to handle this.  The 
> other roommate is sighted, but had a grandparent who went blind later 
> in life and still managed to be independent.  Both she and I know 
> blindness is not the worst thing that could happen to a person, and 
> are far more concerned with the other symptoms than the vision.  We 
> feel for her circumstances, but we're caught in the middle because 
> even my roommate knows blindness is not really something to be pittied 
> from seeing her grandparent pick up and continue after losing sight.  
> But, The roommate who was diagnosed did not know a single blind person 
> before she met me, and although I have shown her I personally don't 
> fit the poor, helpless blind person stereotype, she still perceives 
> blind people at large in that way.  (For example, rather than 
> independent she calls me "high functioning" and has a tendency to help 
> at times because she thinks it's what I need).  I don't really talk 
> about things like blindness philosophy with my roommates, so I didn't 
> place much of an emphasis on really teaching otherwise.  I might have 
> said things here and there about how I'm not as independent as some 
> other blind people, or that a lot of other people are independent too, 
> but I never really dispelled the myth that I was extraordinarily 
> high-functioning for being blind, or that other people were not lower 
> in functioning because of their blindness.
> I just figured that I should do what I normally do, politely deal with 
> the unwanted helping, and go on with the hope that I would be a good
> I
> really did not give it a lot of thought beyond that.
> First I tried to empathize with her, but I am finding that as a 
> congenitally blind person, it is difficult for me to really empathize 
> because I have grown up with my parents always being honest about my 
> vision, the potential for total blindness at some point, and positive 
> role models to show me that should that happen I can still lead a 
> fully happy and productive life.  My parents also worked to develop 
> blindness skills I can use, and as an adult I have even taught myself 
> a few adaptive techniques to pick up where my mom and dad left off.  
> But, I do not understand the sudden shock of receiving a diagnosis 
> later in life, nor do I not have the slightest idea of how I would 
> continue should something happen to my vision, as I have needed to 
> make changes to accommodate decreases before.  I also realize that 
> seeing someone else use adaptive techniques is far different from 
> imagining yourself doing them.  I can understand that she might be 
> thinking, "How will I match my clothes?," or "how will I cook?," even 
> though she sees me do both things and others on a daily basis.  These 
> things might seem like relatively small things to me as I know systems 
> for dealing with them, but to someone who doesn't know they could seem 
> like impossible tasks to perform without sight.
> This has been especially weird for me, as she has been condemning 
> blindness so strongly the past few days.  I know that her experience 
> is totally different, as she has had full sight to this point in her 
> life and has those negative perceptions to go off of, but I have 
> trouble separating her woe statements from statements about me or 
> blind people in general.  I do not want her to continue pittying 
> herself, nor do I want to force positive philosophy on her because she 
> isn't ready for it.  This is still very new for her and I know I need 
> to give her some time to work through some of these issues on her own.  
> However, I also feel that if she really does have these very strong, 
> negative feelings about blindness, that the sooner she gets rid of 
> them the better she'll be should further vision loss occur.  I feel 
> like the longer she believes blindness is to be pittied, the more 
> likely it is that she will feel that she is to be pittied, and that 
> will not make coping with her condition any better.  It doesn't help 
> that the family, in their ignorance, seems to be pittying her as well.  
> As we know, that is probably the last thing she needs, which is why I 
> think giving her a positive view of blindness will be really 
> important.
> Any thoughts on how to find a happy medium?
> Kaiti Shelton
> University of Dayton---2016
> Music Therapy Major, Psychology Minor, Clarinet
> Advocates for Sexual Assault Prevention (ASAP), Vice president
> Ohio Association of Blind Students, Secretary
> NFB Community Service Group, Service Project Committee Chair
> Sigma Alpha Iota-Delta Sigma, Usher Coordinator
> UD Music Therapy Club
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