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

Fri Oct 18 17:02:40 UTC 2013

I agree with Colleen.  Sometimes it helps to have another pair of ears
at these meetings.  Especially, if you are getting a lot of detailed
information.  It also helps to go in with a set of questions written
out.  I have done both of these at times.  Does her family nearby?

On 10/18/13, COLLEEN ROTH <n8tnv at att.net> wrote:
> Hi Kaitie,
> I think that you are right after reading the newest post.
> She may not lose more vision, it does seem like things are up in the air.
> Sometimes when we go to a doctor's appointment we get some much information
> we are overwhelmed.
> Your friend could ask someone to go with her and see if she can see the
> doctor to ask questions.
> This is not saying anything about her, many people do take someone with them
> to an appointment.
> There is sometimes a lot to absorb. The other person can take notes for
> you.
> I have gone to appointments with other people. It isn't because they aren't
> capable, it's because they have so much information to obtain and some of it
> is overwhelming.
> It also helps to write a list of questions so you can remember them when you
> go to an appointment.
> You are right to steer clear of Religious Beliefs because some people are
> not open to new thoughts in this area.
> Your roommate has time to learn skills she needs should that become
> necessary.
> I will keep her in my prayers.
> Colleen Roth
>
>
>
> ----- Original Message -----
> From: Kaiti Shelton <kaiti.shelton at gmail.com>
> To: NFB of Ohio Announcement and Discussion List ohio-talk at nfbnet.org
> Date: Thursday, October 17, 2013 10:47 pm
> 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
>> > 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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>> >
>> >
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>>
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-- 
Marianne Denning, TVI, MA
Teacher of students who are blind or visually impaired
(513) 607-6053