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

Fri Oct 18 02:47:29 UTC 2013

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 example.
> 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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