The stability of a person's vision depends on a number of factors. ROP is associated with several complications which can cause temporary or permanent vision loss. Changes in the retina can also occur as a person's eye grows and ages, and these changes can cause vision loss.
The following posts from the ROP list illustrate these points. The ROP list was moderated by Dr. Scott Richards until August, 2002. The list has closed now. For more information about lists of interest to people with visual impairments, please visit the email list index.
Date: May 4, 1998
From: Sarah J. Blake
There are some other conditions which often develop secondary to ROP, namely cataracts and glaucoma. I developed glaucoma in my left eye as an infant. I had cataracts removed from my right eye when I was eight years old. My right eye is the eye with vision. My left eye was considered unusable, and the possibility of removing it if it became painful has always been available to me. It has so far not been removed.
After my cataract surgery, I was fitted with reading glasses and a contact lens. I used these for about two years, until it was determined that my lens was not helpful and reading print was not the most efficient method for me. (Thank God I had learned braille and print side by side from the beginning!)
During my teen years, my vision deteriorated very gradually--so gradually that I did not realize anything was happening. I was given glasses at age 16, and they did prove useful for quite some time. I did notice periods of vision loss that would last for several hours. They were frightening. I remembered knowing a girl who had glaucoma and who suffered these periods of total blindness. I was finally told that I was having ocular migraines. I did not learn the truth until 1991. By that time my vision was completely gone and had been gone for several weeks. At that time I was examined while under anesthesia, and the fact that I had glaucoma in my right eye was discovered.
The first avenue of treatment was medication. It did nothing as far as I could tell. My vision did not return. I questioned my doctor about this, and he admitted that he did not know if my vision would ever return.
My treatment was started in December, 1991. In January, 1991, I began to regain my vision. Within three days I had regained what it had taken five months to lose--and then some. I had another exam a few days later which revealed that the pressure in my eye was still extremely high. I continued to use the drops until May of that year.
At that time I was referred to a glaucoma specialist, as my pressure had not changed. He recommended emergency surgery, saying that my vision was in a very dangerous state and that I could lose it at any time. The surgery was designed to relieve the pressure by draining fluid from my eye and, in relieving the pressure, preserve my vision by minimizing the risk of damage to my optic nerve. This procedure was not supposed to improve my vision.
My vision did improve, though. Strangely, I also began to have light perception in my left eye at that time. I was 20 years old and had never seen a thing with my left eye. Later this new vision was confirmed by an optometrist. This same optometrist gave me a new contact lens for my right eye which did help.
Over the last year, I have been experiencing vision loss again.
My pressure has also been somewhat elevated, though not nearly to
the degree that it was when I had the surgery in 1992. I have
again been experiencing periods of total blindness. I have an
appointment with the doctor who has been seeing me since my
childhood in the morning. (I should be in bed.
Date: May 5, 1998 This is weird!
My pressure is usually in the 20's (too high). Today it is 3 in
the right eye and 19 in the left. He says to stop my Betagan. He
doesn't remember my having surgery in 1992. It doesn't surprise me
in a way because he was not actually the one who did the surgery.
He just sat in and observed. I have to go in next week and have an
ultrasound. I get to keep my eyes closed. Yay! That light he
uses to peek inside hurts! I don't have any answers as to why I am
losing vision or what is going to be done about it. I'm tired and
pretty confused. I did talk to my optometrist yesterday. He says
the fluctuations I experience are normal because as my pressure
changes my cornea gets cloudy or clear which is what causes the
changes in my vision.
Date: May 6, 1998 Well, it is officially all gone. I could not see one single
thing today. Needless to say I am very, very disappointed. I don't
even see any point in going back to the doctor for my appointment
next week. He can't bring back my vision. There is nothing worth
preserving now. He has always thought this was inevitable anyway.
I just wish it wasn't this way. I wish someone had done a little
more checking when I was 14 and supposedly having ocular migraines.
That wasn't what it was, and even the folks at the summer program
at the school for the blind thought I was using this as an excuse
to get out of doing things. Shouldn't they have known better? But
no one questioned anything until six years later. Would earlier
treatment have made a difference? I don't know. Why do I care
anyway? It isn't like I have to relearn anything. I've been using
braille since age five. The only thing my vision was good for was
seeing if lights were on and noticing huge objects in my way. Not
that much to lose, is it?
Date: May 7, 1998 Well, today is a good day visually. These fluctuations are so
confusing! Today was one of those days I could take a walk and see
tree branches in the way. No pain. It would be nice if it would
stabilize for a while or keep on the upswing.--Sarah
Date: May 11, 1998 I have not found information pertaining to secondary glaucoma
associated with ROP in regard to low vision utilization, either.
As an ROP person with glaucoma--and I still recognize that each
person is unique in visual needs--I have also found outdoor
lighting to be the most helpful for visual contrast. I can see
better in my bedroom when it is sunny (not sunlight glaring through
the window) but a sunny day where some sunlight is coming through.
There have been some occasions, when I visit dad, where I will go
into the bedroom I have at his home and sit by the window and read
a bit. I still require high magnification, but I do get more
contrast and clarity.
When reading about glaucoma in general, I have read that higher
wattages of light tends to improve visual contrast. With ROP, it
is a unique situation due to other types of complications such as
cataracts, uveitis, some corneal problems, loss of central vision,
loss of peripheral vision. What I'm trying to say is that each ROP
condition can be unique with a number, or one, or none of the
secondary complications. As a former Rehabilitation Teacher of the
Adult Blind, I learned that various eye conditions require
different degrees of lighting and different color schemes to
maximize useful vision, as well as to provide comfort. I wish that
more information were available on persons with ROP with various
complications pertaining to low vision. A start might be if some
of us adults on the list could share information about what he/she
finds most suitable in regard to lighting, print size, foreground
and background contrasts, tips regarding travel, and daily living
skills hints. Again, we are all unique, but a pool of ideas and
suggestions may help to generate information that would not only
help each other but could lend to future research and literature on
this subject. Thus, this would also help parents with children who
have ROP by providing helpful information, tips, and ideas.
Date: May 12, 1998 I've just gotten home a little while ago from having my exam.
I had my pressure rechecked, and it was high like it usually is.
It was higher than it's been since my surgery in 1992. The cause
of my vision problems right now, my doctor thinks, is my cornea.
He wants me to have a corneal graft. The catch is that he
anticipates that I'll need three to six months of follow-up, and my
family is planning a move. I did find out that Medicaid transfers
with me. I have a call in to him to find out how risky it is for
me to wait two to three months to have the surgery. Having the
surgery is a risk in itself, but I am planning to stick with my
decision. He seems to think that having a clearer cornea would
improve things quite a bit. If I have this done here in TX, I have
to see another doctor for the actual procedure, and my own doctor
could do the follow-up. But it looks like I will probably need to
wait until after the move.
Date: May 18, 1998 I've actually had quite a bit of improvement since getting back
on my drops. I never thought I would look forward to putting drops
in my eyes! Date: June 2, 1998 I remember when I mistook a field of hay for a field of cows.
I just saw dark spots and figured what it had to be. How about the
time I smashed a spot on the counter with my shoe because I thought
it was an ant. One dead spot.
Interpretation is a great part of low vision. You think you see
what should be there. I actually think that this is a very useful
skill. We see with our brain, not our eyes. I am also a whiz at
memorizing telephone numbers. It is a lot easier than looking them
up. (just a note for those who don't know it--directory assistance
is free to visually impaired people and telephone bills are now
available in large print and braille. Just call the phone company
and ask)
I think the one thing that is difficult now is that my vision is
slowly decreasing and no one understands how frustrating that is.
A lot of people feel, well you couldn't see before, what is the
difference. To them blind is blind and I have 'nothing to loose'.
There are certain thresholds that you pass. Not being able to
read print in any form is most frustrating. Changing from a 10x to
a 20x magnifier and running out of power. Switching to a CCTV when
a magnifier once worked. This is especially a pain with price
tags. You can bring a magnifier to a store but not a CCTV. I have
also lost color detail. When I go to the fabric store I have a
hard time telling dark colors apart. It could be navy, dark green
or brown and they all look the same.
I think my orientation is better than a sighted persons because
I am always thinking about where I am, how many turns I've taken,
how many steps there are, how many doors I've passed. etc.
I once thought I would try to change the attitudes of the people
around me towards blindness. I think this is almost impossible. I
think all I can do is carry myself as a competent blind person and
walk with determination with my white cane. I know people see me
and perhaps just by showing my ability they will see past my
disability. That is why I picked my signature quote.
If you parents are enjoying these stories I'm sure we can come
up with a bunch for you. If you have specific questions about
specific situations then just ask.
JODY
"WE MUST BE THE CHANGE WE WISH TO SEE IN THE WORLD" --Ghandi
Date: June 2, 1998 Jody,
Good comments again. I don't really know when I first had high pressure in my useful
eye. It was discovered in 1992, but I'm sure it was there long
before, as I remember having the same kind of visual
inconsistencies at age 14 that I do now at age 26. I remember
complaining to the staff at the school for the blind that summer
about the 3 and 4-hour periods of total blindness. Staff and
students alike accused me of trying to get out of activities and
chores. I was terrified of not being able to orient myself because
I could not see any buildings. I was finally taken to a doctor
there who said I was having ocular migraines. Inderal helped.
Hmmmm... No wonder. It's an oral beta blocker. I'm now using
Betagan instead.
Sometimes I feel like I talk too much about all this, especially
lately. My parents don't respond much at all to my musings about
what helps my visual functioning and my fears of what could happen
while I'm in limbo waiting for this move and a new doctor who can
do the surgery. It's hard for me to ask the questions I want to
ask my doctor because I get all emotional. I think it's more fear
and frustration than anything--fear that maybe I won't get that
best-case scenario this time like I always have in the past and
frustration because I want one person in the health-care community
to be real with me. He's very good, I've discovered recently,
about explaining things to me, but this was my first time to relate
to him as the person responsible for decisions about my treatment.
He's been seeing me since I was 4. I have two other significant
conditions, one of which has been ignored and passed off as stress.
Going to the doctor is very stressful for me. Oh, yeah, I don't
have a lot of control of which direction my eyes are looking. I
hate the slit lamp because it always means I'm going to have to
look down which is the most impossible thing one can ask of me when
that light is in my face. I've gotten to where I can anticipate
when he's going to pull that thing over and I try to ask ahead of
time which direction I need to look. But sometimes he throws a
left at me instead of down.
Oh, one more story. When I was 7, I went to Nebraska with my
grandparents to visit my great-grandparents. This is the only
memory I have of my great-grandparents, and it's very faint. One
of the things I remember is that my grandfather caught some
grasshoppers in a jar so that I could look at them up close. This
is the only time I've ever seen an insect. I remember the
experience, but I cannot recall what the grasshoppers looked like.
Date: June 3, 1998 Hi. I am a 50 y/o teeny preemie (2lbs-13 oz in 1948!). While
I have severe vision problems (well, not compared to you all), I do
have my sight. I am about 20 diopters in each eye depending on
whether I am wearing my contacts or my glasses. In the last few
years, I have been noticing a real deterioration in my vision after
a long period of stabilization. I now cannot even see my face in
the mirror (up close!) without my lenses. A lot of things I took
for granted are now becoming difficult. There are a lot of folks
like me out there in the late 40's/early 50's age bracket.
We are the babies that got no assistance except light, warmth
and oxygen (maybe blood transfusions). Consequently while we may
have vision problems or ROP, most of us don't seem to have the
neurologic problems of the preemies born in later years. In some
ways, our vision is harder to deal with than your blindness - I
know you don't believe me! We really do seem "normal" and get
little or no assistance unless we ask for it. However, it doesn't
seem to bother us (or anyway, me) to ask for help as much as it
seems to grate on people who are actually blind. If I can't see the
numbers on the panel in the elevator, I pipe up - "I'm blind as a
bat, could you hit seven for me?" I think because I am "sighted"
and realize how easy that realm has it, I feel no compunction about
asking for assistance. However, as to long-term, intimate
reliance on someone else, such as my "seeing eye" husband, that is
a real hard pill to swallow. I could care less if I have to ask a
total stranger to read me something because I cant see it, but I do
feel guilty about the (unfortunately) real possibility that I will
become totally dependent on my husband $$ wise, etc. It used to be
that the docs told me that I was never going blind, but that isn't
brought up much since my left eye seems to be acting really weird
these days.
Have to go back to work (lunch hour), but thought I would
finally post something.
Date: June 3, 1998 I think part of why the dependency issue bothers me is that when
I have to ask for help, it is usually a lot more involved than a
quick thing. I do ok with asking for help with some things, but a
lot depends on the effect I think my needs will have on the other
person's life. I've gotten better about this example I'm going to
give, but I'll give it anyway. When I was taking a lot of classes
at the university, I used to want to get something out of the
vending machine. I memorized the codes for some items, but
occasionally one would get changed or be empty, so I got to where
I would ask for help from someone else who was also getting
something. I lost a lot less money after that. :) Anyway, a lot
of times people go to the machines in between classes, and I would
sometimes worry that I would make them late. Most people didn't
mind, but there were a couple of people who would spend more time
pointing out that they were in a hurry than it would have taken to
help with the machine. When I am in a position of being dependent
on someone, it's very hard to judge what is an honest inability to
help because of realistic time restrictions and what is an
assumption that helping would be a major inconvenience. I don't
think most people intentionally try to get out of helping, but I do
think they sometimes assume that helping would be a hindrance in
their lives without realizing that taking the time to explain all
the things they have to do that day ends up stalling them more.
The other thing is that my dependency is a chronic thing. I'm
sure you can relate with your fears of being dependent. I am
reminded of this a lot because of the number of things I need help.
Perhaps most people don't think much of asking for help because it
is not something they have to do every time they turn around. I
use the example often of people in my family asking each other to
hand them things. We get each other drinks of water all the time.
In an environment where I can reciprocate like this, I don't mind
asking for help. It is things I can't reciprocate that cause a lot
of frustration. With transportation, I often offer to pay the gas,
but sometimes gas is not the concern of the other person.
Sometimes time is the concern, and that is something I cannot
return.
Date: June 4, 1998 I'm so sick of the inconsistent vision! I'm back in another
period of seeing grey and nothing. I was told a month ago that I
needed another surgery, but I can't get it until after we move
(around the end of the month). Even then I anticipate having to
wait a few weeks because of having to change my Medicaid coverage,
find a new doctor who's willing to deal with me being high risk,
deal with scheduling, etc. My ophthalmologist says this is not a
threat to my vision, but right now it really feels like it. I went
to bed at 10:00 PM. My mom asked me to do some things tomorrow
during the day just as I was going to bed. I've had sleeping
problems off and on for several months, probably because of not
really having much to do outside the house lately. I woke up at
1:15 and thought it was 1:15 in the afternoon. Never mind that it
was dark outside. It's been impossible for me to rely on that as
a time indicator because there are days I have to actually walk
outside before I can see how it is out there, or open the blinds
all the way, or whatever. In this phase turning the lights on does
no good either. I thought this might have to do with my pressure,
but I've been told that the pressure changes wouldn't have much
effect on me because my vision is so limited in the first place.
I have no idea if this is a correct assumption. I don't think my
pressure is very controlled with the Betagan, although I've only
been back on it for this last month. I don't know what other
options are out there that could help me in the meantime because I
have this suspicion that other med types would cause additional
problems with my vision and that may be why the Betagan is being
used. I need to get back in to see the ophthalmologist one more
time before the move. I'm feeling really frustrated with all this
timing stuff. Part of me wants to just pick up and stay with my
uncle or a friend up there for a few weeks so that I can get on
with finding a doctor. I've mentioned this to my parents, but to
them waiting three weeks is nothing. To them my doing something
like that would be imposing on whoever I stayed with. Well, we
certainly can't have that. Date: June 4, 1998 Fluctuating vision is no picnic to deal with. The instability
of not knowing what the next day may bring can definitely be
psychologically draining. It's so hard to explain this to persons
who are fully sighted or those persons with high partial vision
that remains stable. I'm sure this is an isolating and lonely time
for you--except for having persons who do attempt to understand and
having persons on this list that can relate.
I can relate to the level of vision that you have described.
When I had cataract surgery on my right eye in 1990, I experienced
a hemorrhage in my right eye as well as the lens becoming
dislocated. It was weird. That morning, I remember colors and
some detail seeming so clear. My close friend, Sue had been with
me during surgery and was spending some time with me a day after
the surgery to be of support and help me with some things I did not
feel comfortable doing right after the surgery. On Sunday morning,
when we took Sue to church, I noticed that I could see some of
blades in the grass--what a concept when I couldn't see this for
years! Dad and I took a short trip to Twelve Oaks shopping mall.
after we dropped Sue off at her mom's church. (Sue came in from
Chicago that weekend). When we arrived at the mall and started to
browse in Hudson's, I began to see smoke-like swirls in my eye that
had surgery. I told dad that I had to put my head in really
awkward positions to see around this smog. After a short time, I
told him that I wasn't feeling well and needed to go home. Of
course, he understood. I laid down for a nap, as I felt really
tired. When I woke up, every things was dark; only a small amount
of light came into the eye. I was terrified! I went downstairs
and told dad what had happened. The next day, I had an appointment
with the cataract surgeon. He told dad and I that the eye had
hemorrhaged and that the lens capsule was also becoming cloudy
again. For a month, I could not see out of this eye. I relied
upon a very small amount of vision with a 10 degree field of the
other eye to navigate. I don't want to come across as not
appreciating what I still had nor am I trying to be a martyr. I
can say it helped to have my other eye as a backup, but it wasn't
the same as what I was used to. Once the blood cleared from my
eye--and it was freaky to see red blotches floating in the eye--I
experienced double vision in that eye. It was nerve wracking!
That summer was very tense for me while traveling in public. I was
startled by various sound, but I did learn to rely on them and use
echoes and direction of sound to find mall entrances, escalators,
and small passages. For the next several, I lived in a world
that sounds similar to what you have described. In August of 1990,
the surgeon did go in and relocate the lens. This did correct the
double vision but did not provide very clear vision. My vision was
around 20/600, 20/800 and became lower as the months progressed.
The anticipation of future laser treatment to give an opening in
the lens capsule for clearer vision seemed like an eternity! It
was exhausting to deal with this day by day. Boy, I can appreciate
how finding it hard to wit out the time until you move and possible
additional time to find an ophthalmologist who is willing to do the
surgery must be psychologically exhausting. I can say that I was
not the easiest person to be around during this time. My moods
drastically fluctuated, and some of my friends, including Sue, had
a hard time understanding what was going on within me. I think
some of this was the attitudes, as mentions in a post on the ROP
group, that this should not be so dramatic for me, since I have
been legally blind all of my life and "should" have adapted to it
right along. What these persons did not stop to think about was
that I had quite limited vision to begin with. It's like taking a
quarter of a quarter of a piece of pie as compared to taking this
amount out of a full piece of pie. The less one has, the more that
amount is going to present a loss. I also told those persons that
no matter what level of vision one has had, any loss is a loss, and
a persons will grieve over this loss since being accustomed to what
the person once had.
I did have laser in 1991 in this eye and also had it in the left
eye as the cataract started to grow back in this eye as well.
Before the laser treatments, I was at the point where it was hard
to distinguish sidewalk from ground, and I'd end up in the street
when trying to negotiate wheelchair ramps. Once I had the laser
treatments, I did regain a small spot of vision in the right eye
that was comparable to what I had when I was younger. The 20/200
spot helped while I was looking at letters at a sitting position--
reading some signs letter by letter, but this was not especially
useful during travel. The treatment in my left eye minimally
helped. I never did regain what I had after the first cataract
surgery and first laser treatment for the couple of months it
lasted. I never did regain that clarity from the second laser
treatment.
Within the past year, I have noticed less clarity in my right
eye. I learned that the cataract was growing back for a third time
in the right eye. My Retinal Specialist and a Retinal Specialist
in Grand Rapids, Michigan, both confirmed that surgery would be out
of the question, as it would impose risks that would not outweigh
any benefit. Both specialists were skeptical about laser
treatment, but indicated that this could be done when I reached a
pointed where the cataract was greatly impeding my visual
functioning. Within the last month, I've noticed, especially, that
it is becoming very hard to focus, and print becomes blurred
shortly after I use my 12x and 14x low vision aids. I've briefly
mentioned this to dad. However, it caught me off guard yesterday
when dad said, "You're not seeing as well lately, are you?" I
said, yes, and told him things have not been as clear. I asked him
what he noticed or observed that caused him to bring this up to me.
He stated that I had to get extremely close to things to see them.
His quote was "It seems that you have to practically be sitting on
what you are viewing or reading to see it." In humor, I had to
laugh while I told him he was on track. It seems that my ability
to move about is pretty close to what it has been for the past
three years, but I have noticed that I've had to be a bit more
cautious when traveling in areas where I do not frequently travel.
The other day, I went up stairs and found, to my amazement, that
there was a yellow ribbon indicating some for of construction. I
noticed this when I was about a foot away. It was quite a
surprise--ha! Had I been any closer, my cane would have gotten
under it and I would have felt it; or, I would have tripped over
it.
I'm just so happy to have this group to share my feelings with.
I really appreciate your input and what you have shared about your
vision changes. Today, I was telling a couple of readers how much
this group has been of support to me. I also shared this with my
friend, Liz, who is totally blind from ROP. We both looked at how
I have grown from the time I had visual changes in the late 80's
and early 90's and am able to apply this experience to what I'm
beginning to experience now. I think the main culprit is the area
of cataract that is continuing to grow. But, I think that I may
have experience some pigmentation increase on the retina that is
causing the feeling of things being more spotty. As you mentioned
about medications causing additional visual problems, I'm not
overruling the possibility of the allergy meds I'm taking (Allegra
and Allegra D) as contributing to these changes and fluctuations.
It seems that I've noticed these change more since I began taking
Allegra D. I see my Retinal/Cataract Specially on 6-15. We'll see
what he says, and I'll proceed from there.
Date: June 5, 1998 I know what changes in vision can do to your psyche too. I
liked Pam's comment that it is like a piece of a piece of a pie.
You appreciate that tiny piece more than someone with 'normal'
vision. Sometimes I feel like someone is standing over me with a
hammer and I anticipate it falling. I know people who had diabetes
and they felt the same way about their vision. Some said that when
they finally lost their vision it was no big deal to what they
anticipated. When their hammer hit, they were almost relieved. I
know that sounds strange, but true. Sometimes I surprise myself
when I get around better at night (when I am totally blind) than I
get around during the day when I have so many visual distractions.
I am not saying I would prefer being totally blind, but I guess we
just have to stop for a minute and think of all the totally blind
people we know and how they still get around and get everything
done and are OK.
I was also thinking of the parents of totally blind children who
subscribe to this list. They must find all this talk about low
vision very frustrating.
Date: June 5, 1998 My pressure was 30--higher instead of lower. I asked if there
were any other medications to try. He added Alphagan to my drop
regime, so now I have two drops to put in each time. I go back
next Friday to see how it's working. I asked whether it would
constrict my pupil. Can't deal with less light when things are
already so grey. He said he would never give me anything that
would constrict the pupil and that he thought the constriction
would cause more pain.
Date: June 12, 1998 Last Friday my pressure was 30, creeping up in spite of meds.
I got a sample of Alphagan to try for the week with my Betagan.
It's like a miracle happened. Today it's 16, back to normal! This
is probably the lowest it's been in two or three years. Now I'll
just have the new doctors to deal with in July. Hopefully I'll be
able to have the surgery soon after the move. I did find a little
out about how the Medicaid transfer works. I won't have to wait
for it to go through. I can go to the office and get them to
arrange for Indiana to bill Texas Medicaid. I have some decisions
to make about exactly what procedures to have done. There is a
possibility that in addition to the cornea thing something could be
done to repair some of my retinal detachment. The doctor here
suggested I just have the cornea taken care of first and see how
much improvement I have. At the same time, I'm worried about the
risks of putting my eye through two surgeries when something might
be able to be done in one. I'll have to think on this one. I did
find a group up there with six specialists on staff, including the
three that I need. This will be a new experience for me. Even
here in a major suburb there are only two specialists on staff at
the center where I've been going. Six in a center seems pretty
uptown for a smaller town.
Date: June 23, 1998 Many of my friends in their late 20's and early 30's have been
told that they should not have any vision left. I was never told
this in so many words--just that there was a chance I could lose my
vision. Ironically, their vision remains stable and mine
deteriorates. Go figure! I would like some stats on this stuff,
especially for the book, and I cannot find many articles about
adults with ROP. Reading the journals almost feels like once the
impact is over in early childhood the ROP cases get forgotten or
something. There's just nothing there. That was one of the
reasons I wanted to write the book. What happens to us when we get
older? What is the prognosis for those of us who had stage 3 and
4 ROP which was not treated in infancy and early childhood? What
determines the stability of the state of the retina? Do we have
any control at all over the progression of this condition?
I have to admit that I'm having a really hard time right now
with not knowing whether my loss is permanent or not, not knowing
what is because of corneal scarring and what is because of retinal
detachment, not knowing if anything can even be done about it, etc.
I'm in a stage now of hiding my feelings about this for the most
part because there's nothing to do but wait until I get moved and
can have the surgery, and I figure that nobody wants to hear about
it all the time. But I am not doing that well.
Lately I'm totally blind again. I wrote this as an expression
of the things that are going through my mind. It has religious
content. I know that not everyone who will read this believes the
same things I do. That's ok. It's not the point. The point is to
share how I'm coping with the situation. You can forward this if
you think the content might be encouraging or helpful to someone.
Just please include the copyright notice and my email address.
You're all so wonderful for putting up with my rambling updates and
everything.
The words to the above are copyright 1998 by Sarah J. Blake.
Please contact me at grayce@iquest.net for permission to reproduce.
Date: June 27, 1998 I remember when I was 13 I met a girl who I think had glaucoma.
She was losing her vision very slowly. She would have periods of
nothing, and she always said she never knew if it would be
temporary or not. When I started having these periods in 1986 (the
year after I met Eirin), I feared them secretly because of what she
had said. I was told they were ocular migraines and let it rest.
No one ever checked my pressure, and now the thing that I feared is
reality. I can see light when I'm outside or in a room lit by
windows, but inside I see absolutely nothing. I keep praying,
"God, please don't let it be my retina. Please just let it be the
cornea." My mom's eyes are so big, and mine are so small! Were
they always like that, or are they going to atrophy like my
friend's did? I don't think I could take that. I can't lose them.
Then there wouldn't be any more hope. My friend who lost her eyes
doesn't have any memory of having vision. But I do, and I go into
a room and visualize it and think I can see it, only to realize
that I can't see it and experience this all over again. Does it
ever end?
It's late at night, and I'm awake and not busy posting about
anything else. This is always the time it bothers me. Maybe I try
too hard to be strong because I think people around me don't want
to hear it, or I have to preserve the image of being totally
accepting of my blindness. I think that is why I have so much
trouble with the NFB philosophy that it is respectable to be blind.
I know that I'm not diminished as a person because of my blindness
and that I can still accomplish many, many things. But there is
never any opportunity to grieve, to acknowledge the pain and the
fear. It's those feelings that make me feel like I am failing
others with visual impairments. No, that's not true. It isn't
even the feelings. It's hiding them because I have gotten the
message that this is just how life is and it's not worth crying
over--feeling like I have to deny my pain in order to preserve a
false image of strength--that makes me feel diminished. So it goes
away, deep inside, during the day and comes upon me in the night
when I'm alone and don't have to preserve that image. And that is
the time I need people most, and it is the time I will not find
them, because the people I need--my family, my friends, my fellow
blind citizens--are thinking that I am strong and in control, that
I've really got a handle on this blindness thing. I am not strong.
I am not in control. Not right now. And I really don't have a
handle on this blindness thing--at least, not the kind of handle
people think I have. I don't know if I would feel differently if
I had never had vision. But I've had it, at least to a very
minimal degree, and I used it and am glad I could use it. Now I'm
losing it, and having learned all the alternative techniques in
existence since age 5 didn't stop me from using my vision and
doesn't stop the pain now.
Like I said, I'm glad that I had the opportunity to use my
vision and wasn't discouraged. I learned braille at age 5, cane
travel starting at 7 (young back then for cane travel), and have
lived life as a tactual learner. But the truth is that I am
extremely visual, and nothing can change that. I had lunch a
couple of weeks ago with my first VI teacher. She made the comment
that I used my 20/4,000 vision much better than one of my
classmates used her 20/200 vision. I don't know what makes people
have preferences for learning styles. If it's possible for a kid
to learn equally from both sources of input, I fit the model. I
never refused to learn alternative techniques or even to use them.
They were normal for me. But so was looking around and taking in
what little I could. I think that's another pet peeve I have. I
cannot imagine the fit I would have thrown if my teacher had put a
blindfold on me. I did have to work at night when I was training
with my guide dog because my use of vision interfered with trust,
but I took this well and had even requested it. No one ever
discouraged me from using what I had. They just encouraged me to
take advantage of every type of input that I had. No particular
focus was ever put on vision, although I was allowed to try the
magnifiers, CCTV, etc.
So what am I trying to say? I think I'm trying to say that from
the standpoint of going through this, we need to not ignore the
vision loss issue, to not sweep it under the rug by teaching
alternative techniques and assuming a person is equipped for life
as a totally blind person when she's been using vision naturally
all along. I don't know why it's important for me to say all this.
It just is. I feel out of place in the low vision groups because
I have much less vision than they do, but I feel out of place in
groups with light perception only or nothing at all because, up
until the last couple of months, I have been extremely visual
despite efforts on the part of myself and others to plan for life
as a blind person. To most people the amount of vision I had is
insignificant. I cannot relate to having been able to read print
for anything important, traveling without cane or dog guide, etc.
I did these things to a very limited degree, but only during very
early childhood. I appear to have all these alternative techniques
down to the letter. What else could I need?
...
How long is my eye going to tolerate not being able to see
before it just gives up? What if the transplant doesn't work
because my optic nerve dies? Is my left eye really compensating,
or is the idea that there was vision there just in my head? How
can I ask this after having it confirmed three times? I can't see
out of it now.
Date: June 27, 1998 Hi Sarah,
I am an 'inactive' member of the NFB. I agree with the
philosophy of the NFB. I agree that 'alternative' techniques and
the right training can 'even the odds' for blind people. I am not
saying that I can play a game of tennis or drive a car, what I am
saying is that I would prefer to think of all the things I CAN do
in spite of my blindness. It all depends on if you think the glass
is half full or half empty.
I don't know for a fact, but I bet there isn't a single member
of the NFB who hasn't had a good cry now and then. I have my days
too. I usually get frustrated or angry. Usually when some 'well
meaning' person sets me off. An example: one day I was waiting to
cross the street when a gentleman got out of his car in traffic and
came over to me and literally dragged me across the street. I was
only waiting for the walk buzzer to go off. I was humiliated
because he didn't see me as a wife and mother of two, gardener,
cook and house cleaner etc. etc. He saw me as a poor blind lady in
need of assistance. When I came home ticked off I received
comments like 'he was only trying to help' That set me off even
more. I called a blind friend of mine and told her the story to
vent my anger. She started to laugh at me. I said 'what's so
funny?' She said 'boy if that guy only knew you had a black belt
in judo and could have thrown him across the street, I wonder what
he would have thought.' I must admit I started to laugh too.
I remember being able to read print and now I can't. So what do
I do? I work on my braille. Blindness is an opponent that is
always trying to knock you on your butt. Every time you get up it
will knock you down again. So what do you do? You come up
fighting twice as hard as you did before. You can cry all you
want, but you can never give up. We are lucky to be alive and
blindness is the price. How many people have lost something to
gain something else?
I think the true fighters cry the most because they are alive
and in the middle of the struggle. If you give up you sit on the
sidelines and aren't involved with anything. You don't cry because
you have not tried. You are a fighter, I can tell by all you have
written.
The people I have met in the NFB sum up this attitude by saying
it is respectable to be blind. What that means is that blindness
is only a condition of the eyes. Nothing more. In order for an
insult to be given it must be received. If someone 'puts you down'
because they perceive you have a problem, it is their attitude that
is a problem not yours. I once thought that I could change
peoples' attitudes. I can't 'change the world'. I can expect to
be treated with respect as anyone is. That is where my signature
'We Must Be The Change We Wish to See in the World' comes from.
Read what Ghandi and Dr. Martin Luther King wrote and you will know
what I mean.
When assistance is offered I graciously thank the person and if
I need assistance I accept. If a person is pushy about it then I
am pushy back with explanation. The next time someone tries to
drag me across the street I will remember my friends comment and
smile. I will plant my feet and say I don't need assistance thank
you. We all learn from our mistakes.
Don't give up and for every fighter there is a good cry.
Warriors Weep the most. You will come out a winner.
...
Dr. Richards,
Would you please explain why there seems to be a 'time line'
with ROP? It seems to follow the same pattern as Sarah is
experiencing. It followed the pattern for me and many other ROP
adults. Why should a condition that has been stable for years all
of a sudden develop glaucoma when a person reaches their 20s?
Date: June 27, 1998 Sarah,
The middle of the night is a hard time to deal with things-I
think the monsters under the bed from our childhood are now
transformed into thoughts we over-analyze or let our imaginations
run wild with.
Everyone needs and is entitled to times when you lean on someone
else and let someone else be the strong one.
You are certainly the strong one often for this group and for
yourself. Even admitting your fears and depression is a sign of
strength as you are willing to share your pain -showing others they
are not alone.
I certainly agree that your blindness is a part of who you are
but find nothing wrong with your wanting to hold on to what vision
you have. I share your philosophy rather than NFB's in this area.
Vision loss is a LOSS. Grieving for a loss is a normal human
reaction and part of the healing process. As long as you can move
through the process and continue to move forward with your life,
your on the right track--you certainly appear to be with all the
projects,plans,etc. you have expressed and are working on. Enjoy
the conference, relax after the move and we'll be here when you get
back.
Date: June 27, 1998 Your post really struck a nerve with me! As the mother of a
disabled child (hydrocephalus, vision impairment, CP, retardation)
and as a potentially disabled person myself (multiple sclerosis?
stroke? the MRIs are inconclusive) I can relate to the burden of
feeling the need to appear brave and accepting of whatever fate
deals out. In reality, *no one* actually feels this way. We all
need to grieve!
I can't help but think that the pressure on us to say what we do
not really feel comes from the need to preserve the peace of mind
of the non-disabled who can't bear the idea that "bad things happen
to good people" (and, in time, will happen to them). Also, we are
often told that if we complain, this will threaten the self-esteem
of others who share our disabilities. I think this is oppressive
and wrong! If we can't be honest, this destroys an important part
of who we are, and it doesn't help the many others who share our
problems and, if the truth were told, would like to be able to be
honest along with us!
We all need to be able to say how we feel (with the
acknowledgment that this can change from one day to the next). As
the parent of a disabled child, it is politically incorrect for me
to say that my son "suffers" from cerebral palsy, although in
reality , HE DOES SUFFER! Anyone who doubts this can come spend
time with us while he is recovering from orthopedic surgery! He
"suffers" horribly from his hydrocephalus, yet if I admit to this
in public, it is likely to bring down the wrath of the "politically
correct."
There are precious few *honest* accounts of parenting a
handicapped child, but there are two that have made an impact on
me. Both were published in_Exceptional Parent_. I think they are
also relevant to *having* a disability. I'd like to quote from
them:
The first is from "Surviving" by James Elliott (December 1995),
father of a premature baby (blind, severe CP -- can't sit or roll
over, hydrocephalus, seizures, microcephaly and other medical
disorders) Here is an excerpt:
"Parenting children with disabilities can be brutally difficult.
Each of us must deal with this fact on a daily basis, though most
of us find it hard to confront. How many times do you hear or read
about this side of our lives? The harsh realities that find us
privately raging against everything? The media usually offers
inspiring, hope-filled stories about sick kids and their brave,
loving parents. These stories don't paint a complete picture.
Would reading any of these stories prepare new parents of a child
with severe disabilities for what lies ahead?
"The lives we live as parents of these kids are routinely
portrayed as a-okay, as long as 'we show a positive attitude.' The
truth gets lost in people's need to maintain a strong, socially
acceptable, outward appearance. This need brings people too close
to the edge of total denial."
The second series of quotes also comes from _Exceptional Parent
_, but I don't have the date --
It is entitled "The Dark Side" by Jennifer Hamilton. Below are
some excerpts:
" 'I hate being retarded,' my son, Andy, declared passionately
the other day. Well, I didn't say it then, but I will now: 'I hate
being the mother of a retarded child.' Why should I feel the need
for such an announcement? Because I believe that many parents,
myself included, have allowed themselves to be pressured into
saying, and often thinking, things they don't really feel.
"Our society frequently prefers to sidestep painful or negative
issues...When I mention Andy's condition to a new acquaintance I
can almost count on the response: 'But he's happy isn't he?' It
isn't merely a conventionally polite question; I sense the real
anxiety behind it. The 'dumb but happy' notion is one way of
avoiding confrontation with painful and complex realities.
"But it is not really the questions people ask that disturbs me
as much as it is my reaction to them. Because I am aware of
others' need for reassurance I find myself offering the comforting
lie. 'Oh, he's just as happy as can be!' Then I smile confidently
and quickly change the subject.
"The trouble is that if one lies often enough in this fashion,
one starts to believe one's own falsehoods. I have known mothers
so conditioned to being brave that they have practically convinced
themselves that their child's disability is a blessing... It can
be argued that looking on the bright side of things enables us to
live within an otherwise intolerable situation... [However] when we
lose touch with our true feelings we lose the ability to see the
total picture [including the bright side]...I wish there were
opportunities for us to share some of our fears, our rage,
bitterness and frustrations. Perhaps in doing so we might discover
an important new source of strength."
I have to agree with both of these parents' observations. It is
important to be able to tell the truth and honestly confront the
painful and complex realities in order to move beyond them and make
genuine progress.
Date: June 27, 1998 Hi, Jody.
Thanks for writing. I can't ever give up. It's not in my
nature. But I think I need to shed the idea that I cannot express
the pain, because it gets bottled up and is ten times worse than
the blindness itself.
...
I'm sure you all know that moving stirs up a lot of dust that
tends to settle in the home. I've had a lot of trouble with
allergies as a result, and massive headache around my right eye.
I remembered an experience a friend had after getting her
prosthetic eyes. She was having a lot of pain which most doctors
assumed was psychologically based, as she did not have her eyes to
be causing her pain. An optometrist who was working with her on
caring for her prostheses sent her for an X-ray, which revealed she
had a sinus infection which was the cause of her pain. I took some
sinus medication, and the pain is gone. This helps with at least
the fear that my pressure was elevated again. It doesn't really
change my feelings about my vision, but it does help to calm me a
bit so that I don't get quite so keyed up thinking my condition is
worsening out of control.
I really appreciate all of the responses and support people have
sent. It has been so helpful to read everything you've had to say.
I want to say something else just as a matter of pointing something
out in regard to the adjustment process. Both the NFB and the ACB
encourage exposure of visually impaired children to "competent"
blind adults. This is so vital. I did not get this exposure until
I was into my teens. I was exposed to other blind children with
varying amounts of vision in my resource room and at camp.
However, until my teen years I did not have consistent exposure to
blind children or adults who were functioning well. Most of the
children in my resource room either had much, much more vision than
I did and I saw them basically as sighted kids who just needed
special sizes of print and special glasses, or they were children
with severe disabilities such as autism and mental retardation.
The only totally blind child I was exposed to for any length of
time was also autistic/MR. She was a very sweet child and I counted
her as a friend, but this first impression has stayed with me, and
it takes a lot of exposure to blind adults and a whole lot of
concentration to counteract the image of this child which gets
brought to mind when I think of total blindness. I was a teenager
before I ever met a totally blind person who could travel
independently, take care of personal affairs without a great amount
of assistance, etc. I think that on some unconscious level, these
things affected me, even though I never really thought about the
fact that I could lose my vision until I was 14 or so.
Again, I really appreciate everyone's support as I'm going
through this. There is a lot of uncertainty for me about whether my
loss will be permanent or not. My ophthalmologist seems to think
there is a good chance for improvement with the surgery. I've
thought of just giving up and adjusting, but I can't bring myself
to do it. I've felt since the beginning of this mess that I need
to at least try for the improvement. I'm struggling with feeling
like this means I am unwilling to accept my blindness, but I don't
really think it means that. I can certainly adjust, but I don't
think anyone who had the choice would choose to live this way.
Maybe some people would, but most wouldn't, and I don't have to
choose it while there is still a chance. I'm having to relearn
travel skills because, although I know how to use the cane and have
a guide dog, I inevitably used my vision to find certain landmarks,
and that is just not possible right now. I've bumped into walls
and boxes all day because I couldn't orient myself to the changes
in the house. No, normally I don't bump into walls even at night,
but it happens when the layout of the familiar environment is
altered and there is no easy way to judge the new amount of space
available for navigating without some time to familiarize.
I asked my mom for some time to explore the layout of the new
house before things get unloaded. She thought this was a good idea
and said it would be very workable. This will also give me a
chance to assess what amount of vision I do have left, if any, and
communicate better with the new eye doctor. It's hard to know what
I am working with here because sometimes I think I visualize things
instead of seeing them. It helps to get into unfamiliar
environments where I can look first without having the knowledge to
visualize.
Date: June 29, 1998 Hey Sarah,
I'm so glad that you could be open with us about the feelings
your are dealing with in relation to your visual changes and
further loss.
I honestly believe that society conditions all of us to "be
strong" and to "make the best of a given situation." Growing up
with these beliefs--even if they are conscious or
unconscious--conditions us to be the "martyr" and not let others
down--who may not be able to deal with our grief.
Well that's one "hell" of a load for anyone! It is not easy to
adapt to visual changes, and it is very painful to remember how
things once were. That does not mean that such grief is stating or
results in not working with the situation and moving on to acquire
adaptive skills and psychologically cope with this loss. I believe
it takes a lot of courage to be able to express the feelings you
have expressed. Let me put this in another way without
disregarding what I said. You shared you inner feelings--showing
your fears and frustrations as a fellow human being with honesty
and sincerity. At the same time, you have continued to move
forward with your writings, web page, music, and this upcoming
move. I see a person who is genuinely working with God to make the
best of her life and is willing to fight while also being open and
honest about her fears, future concerns, and ambivalence about what
the future does hold in terms of vision and career.
This weekend, I happened to look over some past articles that
were written about me and some accomplishments when I graduated
from high school, graduated with my Master's degree in
Rehabilitation Teaching of the Adult Blind, and one article
explaining some instruction given to one of my clients with a bit
of personal history about my blindness. As I looked back at these
articles, I saw myself falling into the same trap as what society
would want. I was open about what I enjoyed doing and how I loved
working with others. However, I over emphasized my positive
attitude toward my visual impairment. Maybe, part of this was due
to pressure of talking with new reporters and not wanting to do
poorly or give them a bad report. Perhaps, I didn't want to let my
agency co-workers down or even sound negative around my parents for
fear of appearing that I was not coping or accepting my visual
impairment. Your letter, combined with reviewing these articles,
helped me to come to terms with the importance of being human, open
and honest about feelings--being myself in regard to my visual
impairment--while continuing to hold onto the positive strengths I
have as a person and to continue with being compassionate to others
and helping in the way God would want me to be involved.
Glad to hear you are getting situated. However, it is "not fun"
to learn the layout of a new place. Even with a little more
vision, I found the first few days frustrating when dad and I moved
to Kalamazoo. The extra boxes spread all over the place certainly
do not help! I had to gage distances and learn the layout of our
house while adapting to my poor depth perception and spotty field
as I negotiated around objects and gaged doorways and closeness of
walls. I did get the "hang" of it in a few days, but the unpacking
and getting organized was a different story. It took a month or so
to totally unpack and get my belongings where I wanted them to
permanently be placed.
Date: July 3, 1998 Jody Ianuzzi wrote:
"Would you please explain why there seems to be a 'time line'
with ROP? It seems to follow the same pattern as Sarah is
experiencing. It followed the pattern for me and many other ROP
adults. Why should a condition that has been stable for years all
of a sudden develop glaucoma when a person reaches their 20s?"
I really don't know. So many medical conditions follow a time
course or "life cycle", and we often don't have a good
pathophysiologic reason for it. I suspect that in ROP it has to do
with the growth of the eye. As we go through the teenage years,
the eye grows along with the rest of the body, causing more
nearsightedness as the eye gets longer. This would theoretically
cause the retina (which can't grow in the sense of adding new nerve
cells) to stretch to cover the inside surface of the eye. This is
thought to be why ROP patients are at risk for retinal detachment
in teenage years - because the retina tries to stretch but is held
into place by the laser or cryo scars peripherally, so it tears
loose. The angle closure glaucoma may be due to the lens of the
eye growing larger and closing off the angle where the drainage
meshwork is, causing the pressure to go up. The cause of the
glaucoma is less clear, at least to me.
Date: July 7, 1998 When I was growing up the possible risks were already known, but
the subject was very 'hush hush'. The only thing my parents knew
was that they should look for any signs of blood shot eyes. They
didn't know why. I was never told there was any risk or possible
changes in my vision. As a result, I never thought about my 'eye
strain' headaches as anything else. I suffered acute glaucoma
attacks for almost ten years without realizing they were not eye
strain. If I had know to look for unusual changes as I grew up,
then I might have been alerted to this earlier. I also think that
when you realize that your child's vision MIGHT change, then you
can work appropriate skills into their IEP. If I had realized that
my vision would have gone from 20/400 to 2/400 I would have learned
Braille as a child and not waited until I was 35 to start learning
it.
Having grown up as a legally blind person, the changes in my
vision have not been as traumatic as they would have been if I had
grown up with normal vision. If your son's vision does change it
will not be as drastic to him as you might think.
I am sorry this has been upsetting. Not all people with ROP
experience these changes. I did, perhaps because of the nature of
my ROP. Perhaps the RLF generation experience different effects
then the ROP generation, because of a difference in oxygen levels.
I don't know. I don't want you to be upset.
Date: July 11, 1998 I suspect that the outcome for the kids may be better than it
has been for us adults. I just got back from the ACB convention.
What I saw was that most of the people there who were over 45 or so
had either lost their vision or never had had any. Those of us who
were younger seem to have had better outcomes, which I suspect has
to do with how aggressively we have been monitored and treated.
For me, the key seems to be making sure I keep up with regular
exams and take medications correctly, as well as paying attention
to my visual functioning and any pain I experience. I think that
perhaps the complications don't have to be irreversible, but they
will be if treatment isn't sought.
I am in my fourth week or so of taking the combination of
Alphagan and Betagan and a strange thing has happened. I don't
know how long these medications take to really kick in or what the
general consensus is in the medical community on this, but I have
noticed that my doctors comment a lot more on the cloudiness in my
cornea when my pressure is up, I don't take my drops, etc. Over
the last week I have experienced a dramatic improvement in my
vision, even to the point where a couple of days ago I could tell
that a lady in an elevator where there was kind of dim light was
wearing a shirt that had yellow in it. I think I was 16 the last
time I identified yellow, and before that I was about four. I
don't understand what is going on, but I'm certainly not
complaining. I'm experiencing functioning this week that is
equivalent to or better than where I was six and ten years ago.
Date: July 12, 1998 Two weeks ago I had no usable vision. I could see the sun, but
that was about it. I had barely any usable vision when I got to
the convention on July 4. To be honest, I was terrified of trying
to navigate the hotel, even with my dog. On Sunday, I discovered
that wearing my glasses was helpful. They hadn't helped in a
while. The only bad thing was that I got a rash on my face from
wearing them. There were times when I didn't care and wore them
anyway, but it was very uncomfortable.
Around the middle of the week, an interesting thing happened.
I was in an elevator which was lighted fairly dimly compared to the
first floor, where there were a lot of windows and open spaces.
There was one lady in the elevator with me. I found myself looking
at her shirt and asking if there was yellow in it. Yellow was
always the most difficult color for me to differentiate. I had no
color vision except a few shades between ages 6 and 16. Why I had
some at 16 I don't know. It may have had something to do with
getting my glasses and having clear vision while wearing them. But
I have not recognized yellow reliably since then. In fact, the
last time I recognized any color reliably was 1992--it was pink.
To my surprise, there was indeed yellow in her shirt.
Yesterday, coming home, I even found that I could follow the
person who was assisting me if he stayed within five feet or so.
It's been a long time since I could see well enough, let alone
focus well enough, to follow anyone. I still found that I couldn't
do this in a crowded area because of the input from my peripheral
vision.
Now I've come down with a cold and am finding that all of my
senses are distorted, diminished, etc. I'm having trouble with the
sinus pain, but at least I know what it is. My mom even said my
face is swollen. I'll be glad when this is over.
Date: July 29, 1998 I am still experiencing some interesting improvements. I am
beginning to get some benefit from indoor lighting, especially in
the bathroom. I did find one article which discusses improved visual function
related to lowering of intraocular pressure in a patient with ROP.
Actually, it is a letter. There is no abstract available via
MedLine, but I may be able to find it this weekend and post about
it if anyone is interested. I have asked about this at my doctor's
offices before, and they never offered me any sliver of hope. I
suspect that they did not want me to get my hopes up because they
felt that the odds were so low. In May I had gotten interested in
learning about glaucoma and lifestyle changes that might help. My
optometrist felt that my visual functioning was too low to respond
much to changes in pressure. I guess he was wrong.
Date: July 30, 1998 I just thought I would share this because it was so neat. My
sister and I went walking on this trail thing at the park near my
house this morning. There are squirrels all over the park, and a
lot of times they'll let you get within a few feet. I happened to
have gone without my dog this morning. My sis got interested in
seeing how close the squirrels would come, so we stopped and got
down on the ground. We stuck our hands out to see if they would
come up for a sniff. She had heard that people go and feed them
sometimes.
Well, two squirrels came right up and sniffed my hand, and
several of them got close enough that I could see them and tell how
big they were. It was my first time to get a glimpse of a
squirrel. We tried holding pears out that we had gotten from trees
in the park, but the squirrels weren't interesting. Tomorrow we're
thinking we might take some crackers or something.
It was really a neat experience! I asked my sis to describe
them. She was really interested in telling me about their colors,
the shape of their tails, their ears, and their size in terms of
my cat. Since I couldn't actually touch them, it was good to have
her compare them to something I was familiar with and also show me
with her arms spread apart how long they were. She also saw a
chipmunk and described it in terms of the squirrel that she had
already described. It was neat.
Date: August 1, 1998 I spent today at the medical library reading more ROP stuff and
related stuff. I had a really good time learning. One thing stood
out especially to me. In one of the articles I read, the author
was discussing improvement of vision after lowering pressure in a
person with ROP and glaucoma. This was interesting to me because
I have personal experience in this area. The author was saying
that apparently high pressure affects the cells that influence
motion perception and that those cells might be the only active
cells for a person with severe ROP. It was really interesting and
validating for me to read this. There was a lot more that was
interesting and encouraging to me, but that was what stood out the
most.
I was doing some experimenting to see if I could see any of the
pictures in the journals. Some of them had a lot of pictures of
eyes illustrating what they were talking about. My dad was so
great and sat there pointing out which pages I didn't need to scan
because they had pictures. He was probably glad he just didn't
have to read. :) Anyway, I noticed that I could see where some of
the print was, but it just looks like dots to me. I was very
conscious of my eye movements, though, because it looked like the
dots were jumping around on the page. It was annoying!
When we left, it was early in the evening. My dad brought the
car out of the parking garage so we wouldn't have to take the
scanner so far on this really bumpy sidewalk. I have one of those
portable scanners, so it's really convenient to take it along and
scan right there at the library instead of making copies and then
scanning at home. We still had to walk a ways to get to the car.
We were walking down the sidewalk, and I pointed and asked if that
was the car. It was still about 50 feet away. Dad said that he had
never known I could see anything that far away. I didn't know it
either. It's weird news to me. Makes me wonder how long I've
needed my glaucoma treated. It's been a long time since I had
anything very useful.
Date: August 5, 1998 Well, I got an appointment with Dr. Trese for October 20. For
those who don't know, Dr. Trese has done a lot of work with ROP in
both children and adults. The waiting list is not that long, but
that's when it worked out that I can go. I still don't have
Medicaid. If it comes through before then, his office can apply to
be a provider for the state of Indiana. If not, they will put me
on a payment plan. Hopefully the Medicaid will come through, but
if not, this is worth it to me.
I've been having a lot of mixed feelings about this whole thing.
On the one hand, I would like nothing more than to have some
answers about the condition of my eyes from someone who is so
familiar with ROP and associated complications. I would also like
to have the maximum amount of vision that is available to me. Back
in May, when my cornea was so clouded over that I could not see at
all and my pressure was so high, my doctor in Houston felt that
once the pressure was lowered and the cornea taken care of, there
might be some possibility of doing something for my retina that
might result in some improvement. He wanted me to have the corneal
graft, but I suspect because of the dramatic improvement I've
experienced since then that the cornea has cleared up a lot with
the lowering of the pressure.
On the other hand, part of me still questions whether I am
really seeing or just guessing. You'd think that having the
validation of others who have seen the improvements in my
functioning, confirmed things that I thought I saw, etc, would stop
me from questioning this. I guess I've inherited some of my mom's
skepticism. I don't want to present false pictures or hold out
hope for something totally unrealistic, but at the same time I
don't feel right about just sitting here and doing nothing in the
case that there might be something to do. I hope all that makes
sense. Part of me feels like I should just adjust to what I have.
But I'm feeling like I've lost a lot of vision needlessly over
the years because of not having regular exams when I was a child
and adolescent, the misdiagnosis of glaucoma as ocular migraine by
a doctor who saw me for 15 minutes when I was a teenager, and my
own negligence with managing my glaucoma as an adult. Maybe I'm
trying in some ways to make up for all that, and it may not be
possible. But every little bit of improvement is precious to me,
and I am educated enough and have the chance now to have some small
bit of control in the rest of the course. Maybe if I know that
I've done all I can, then I can accept whatever happens that is out
of my control. It may not happen, but if it ends up that I still
lose my vision someday, at least I will know that it was the course
of ROP and associated conditions and not my own or someone else's
negligence. I think that at least it could help dissolve some of
my pain and anger and feelings of being at the mercy of life and
other people in regard to the care of my eyes and preserving of my
vision. I know that my parents made choices that they felt were
best in my very early childhood. I do think a lot of people just
gave up on my visual functioning when I got into my teens because
I was too difficult to examine. I wish that I had been examined
under anesthesia sooner and that my parents had been given more
information about what might indicate changes in my visual
functioning. I wish that I had been educated about caring for my
eyes and what things I needed to tell the doctors. I never told
them anything because I always thought my eyes were just kind of
there and stable. I remember Mom talking about the possibility of
my losing my left one if the glaucoma couldn't be controlled and
was too painful, but that's all. So I always just paid attention
to pain until I started having the episodes of having no vision at
all. Then I got scared.
Sorry to ramble so much. The fact that I have been able to go
through 8 weeks as a totally blind person at two separate points in
my life and have any vision today baffles me, and I have to admit
it gives me a little bit of hope.
Date: August 6, 1998 Now that I've unloaded all that negative thinking, I'm feeling
a lot more free to be excited about the appointment and finding two
months a long time to wait. It's like I've found a wonder drug or something with the
Alphagan. I'm seeing things that I haven't seen since I was a
little girl, and it's just baffling me. Last night I got a brief
look at my 12-year-old cousin's face. For the first time I feel
like I have been able to define some concept of what is pretty to
me. It's hard to put into words, but someday I want to put it in
words. I can't see any real details, but something is striking me
as pleasing about certain things.
Date: August 17, 1998 I am 46 years old with ROP and have had cataract surgery in both
eyes. I also have experienced a narrow angle glaucoma episode in
the left eye in 1975. In 1983, I learned that my neuclear
cataracts were developing and that I might require surgery in the
future.
Well, the cataracts did continue to progress in both eyes. In
1988, I had the cataract removed from the left eye, and in 1990, I
had the cataract removed from the right eye. During the time while
the cataracts were progressing--and afterwards--I've continued to
have periodic check-ups with a retinal specialist to monitor the
progression of the cataracts to to continue to evaluate my retinas.
The three retinal specialists I saw, Dr. Nesbaum, Dr. TReese, and
Dr. Trittschuh, all aggreed that I not rush into the surgery until
I reached a point where my vision was no longer functional. The
main concern was avoiding any retinal detachment.
I did not experience any retinal detachments in either eye. In
the left eye, I did end up having to have a couple of post-yag
laser treatment, as the cataract membrane continue to resurface and
grow on the lens capsule. With the yag laser, the ophthalmologist
was able to make a small opening in the lens capsule to allow
clearer vision to return. I have to say that I did experience
benefit, at first. However, I have some pock marks on the lens in
this eye, and my vision is not as clear as it first was after
surger.
In regard to my right eye, I did experience a hemmorhage shortly
after surgery. I did not lose any vision, but I was unable to see
out of the eye for about a month. Almost immediately after
surgery, the lens clouded over again, and I had to wait several
months until I could receive yag laser treatment on the right eye.
Presently, I have a membrane forming on the right eye. Unless it
fully covers the lens and drastically impairs the vision I have,
the retinal specialist, Dr. Trittschuh, and another specialist from
Grand Rapids, MI, also feel that nothing should be done at this
time. There is a concern of retinal detachment and vitreous
complications due to the former surgeries in that eye.
After the laser treatment in the left eye and surgery in the
right eye, I did experience increased interocular pressure in each
eye. However, it was able to be controlled by increasing my .25
dosage to .05% of Timoptic in each eye to be taken twice daily.
Thus far, my pressure has remained stable within the past eight
years.
I would recommend, if you already haven't done so, to seek the
opinion of a retinal specialist in your area. Also, if your
opthomalogist does not feel comfortable in performing the cataract
surgery, you should seek at least two other opinions from cataract
specialists who are willing to take time and explain the risks and
benefits to you, who seem to be genuinely interested in your
situation, and not one of those who perform surgeries by the
thousands and run a "machine shop" per day. As this was
recommended to me with surgery in my right eye, facoemulcification
(excuse my spelling) seems to be the safest type of cataract
surgery. The lens is broken down into small pieces and "vacuumed
" out. Thus there is less trauma to the eye as well as a smaller
incision. There may be newer techniques that I'm not familiar with
now and would be worth checking into.
If you are in need of a retinal specialist, I would recommend
Dr. Treese in Detroit (Royal Oak Beaumont Hospital) as he is well
known for working with patients of various ages who have ROP. Dr.
Trittschuh, my retinal specialist, in Kalamazoo is both a retinal
and cataract specialist. He did my second laser in the left eye
and first one in the right. I have to say I've been pleased with
his results and trust his judgement with my present situation.
Getting all the information you can about cataract surgery as it
relates to your ROP condition is the key point before making your
decision.
Date: August 19, 1998 About a week ago, I got a letter from Medicaid saying they had
not gotten the form back from my ophthalmologist in TX with
information about my diagnosis. You know, no matter what they see,
they can't establish that I am "blind enough" to qualify for
whatever Medicaid Blind is. (How it differs from other Medicaid I
still don't have a clue, but they sure did emphasize the "blind
enough" part enough!)
I called my doctor, and he said he had faxed it back the same
day. I left a message on the Medicaid lady's voicemail and waited
for a call back. I waited six days and didn't get a call.
Yesterday I called and talked to someone at the help desk. When
I asked what the problem was and why the form had not been found,
she responded nonchalantly, "Well, this is a large office, and
things do get lost. Oh, and sometimes faxes don't come through
correctly." It was like it was no big deal.
Well, I have in my hands a copy of the very form that shows that
the fax was successfully transmitted. I talked to my former
optometrist today. He monitored me for four years before I moved to
Houston in April, and then from April until June I was monitored by
my childhood ophthalmologist. Anyway, I told Dr. R. that I had
found out that I could get my pressure checked for $50.
"You don't have $50 eyes," he said. "Your eyes are fragile."
He went on to tell me that I needed to stress to them the fact that
my condition is very serious and unstable and that if it is not
monitored and treated I could lose my remaining vision. He said
that he felt I could withstand pressures of 30 for a short period
of time but that I needed to not go more than 3 to 6 months without
follow-up because my pressure has been so unstable and because of
the way that all of my conditions work together. I've already gone
two months without follow-up, and I was getting follow-up every two
or three weeks in May and June.
I didn't realize how serious this is. I knew it was serious,
but it just never occurred to me how much follow-up this med change
would require. Yes, I've been doing well, but these two meds are
not recommended to be taken together, and I didn't know this in
June. I know that Dr. H. wouldn't have given them to me if they
weren't necessary, and they have been a tremendous help, but the
follow-up is so important.
So tomorrow I'm going to go in and talk to a supervisor. When
I applied on July 24, they told me it would take 30 to 60 days.
It's been 26 days and nothing has been done. So what I want from
them is assurance that this will not get pushed back an extra 26
days. Doing the math and allowing for the 60 days, that means it
will be late October before I get to the doctor, making it over 4
months with no monitoring. It's just not a risk worth taking for
me. I can wait that long to see Dr. Trese about my retina. I
can't wait that long to have my meds monitored, and it is just
crazy to have to spend 10% of my income for one check. That's not
even assuming I need refills. Right now I'm living on samples
which Dr. H. is sending at my request.
Date: August 20, 1998 Just wanted to write a quick update on Rachel's eyes. This
morning she had an eye exam under anesthesia with Dr. Goldbaum, her
retina specialist. We had all wondered what was going on with her
eyes, since she has apparently lost even light perception. What Dr.
G's exam revealed was that there has been some bleeding inside her
right eye (her "good" eye) due to the degree of scarring. This has
caused the vitreous fluid inside the eye to become cloudy. This
appears to be the reason behind her loss of light perception. Also
because of this, the doctor was not able to see inside the eye to
assess the condition of the retina itself. He was able to take some
ultrasound pictures, but felt that they were inconclusive.
Tomorrow Rachel is scheduled to have another type of exam. This
one measures electrical activity in the brain in response to a very
bright light and should let us know whether the retina in her right
eye is working at all, and if the optic nerve is receiving any
information. If this is the case, there is the possibility of a
procedure that would clear the vitreous fluid and allow Rachel to
have some sight again. It would not be a lot of vision, considering
the state of her retinas, but it would be enough to aid in her
mobility. I am trying not to get too excited about this, but it
would be so awesome!!! Need I tell you, I am on pins and needles.
Date: August 21, 1998 I
talked with the caseworker from the Medicaid office this morning.
She acknowledged receiving my form both by FAX and the one my dad
delivered in person yesterday. She apologized for the upset the
letter caused me and said that she would get my paperwork in the
mail to the review committee today. I asked her to write a note
about my need for follow-up regarding my medications to accompany
the application. She said she thought it would take about three
weeks but that since it was a blind application she hoped that it
would be processed faster. So if I don't hear anything in another
few weeks, I plan to check back and see how I can find out what's
holding it up. She did say that nothing was missing from my file
and that this should speed things up.
I had started having some bad eye days earlier this week, and
now I have that nasty bronchitis that I just had about a month ago.
It's a chronic thing for me, especially if I don't get treatment,
and of course with the Medicaid delay I haven't gotten any
treatment. I had never realized how blurry my vision gets when I
get this bronchitis. I don't know if it never did before or if I
am just very sensitive to the changes in my vision now because of
how unstable my eyes are lately. I'm also starting to wonder if my
frequent illnesses are related to some kind of preemie thing. Not
that I want to have more labels or something, but no one in my
family is as susceptible to illnesses than I am. It's like my
reactions to anything foreign in my system, whether it's
medication, food, or allergens, are extremely severe.
Date: August 26, 1998 Hi everybody. Here is the latest on Rachel's eye exams. Again,
I am cross-posting, so if you get two or more of these, just hit
delete! It's kind of long.
As I already mentioned, Rachel had an exam under anesthesia
(EUA) last Thursday. What the doctor found was that the left eye
was pretty well shot - we have known this for a long time - and
also that the pressure is up in that eye. He plans to consult with
the glaucoma specialist as to how to deal with the rising pressure
in that eye. He mentioned that since the left eye is completely
non-functional, basically hopeless, there might be certain
treatments to consider. He did not go into detail, and we did not
press him. We assume that we will discuss this with him at greater
length after consulting the glaucoma doc. My assumption is that he
is considering a prosthetic for Rachel, and that is not something
I am yet prepared to deal with.
The vitreous in the right eye is clouded due to bleeding. This
seriously limited Dr. G's ability to examine the retina, and he was
not satisfied with the ultrasound pictures he obtained. However, he
told us that, if the retina is still functioning, there is the
possibility of another treatment to help restore some small amount
of vision.
Well, Friday we all trotted back up to the Medical Center for
the other exam. I don't recall the exact name, but it is the test
which determines whether there is any electrical brain-wave
activity in response to a bright light. Putting the electrodes on
Rachel's head was a true adventure, and I was glad Dan decided to
come with us because we needed his help. I brought a little tape
player and headphones plus some of Rachel's favorite music (a tape
of organ music, and Asleep at the Wheel - she is very eclectic in
her musical tastes), hoping that it would help to distract her. Boy
am I glad I did! Thankfully only four electrodes were required!
Well, there was trouble with the equipment (!!!), and the doctor
wants to run the test again in two weeks with a different machine,
but we all saw the graphs on the screen and we believe Rachel is
getting some information with her right eye. It isn't official
until the next test, however. What Dr. Crutchfield told us is that
there is a strong indication that the right eye is getting
something, but she doesn't want to write her report until she has
better figures than the ones she was able to get on that particular
machine.
So the saga continues.
Now, I know I make a lot of assumptions, and that is definitely
something God is working on with me, among all my other faults! But
here is my understanding of what could happen next, and I solicit
any information anyone has on their experiences in this regard.
What I believe Dr. G wants to do is to perform another vitrectomy,
which would mean removing the vitreous fluid from that eye, and
replacing it with either the gas bubble, as I believe Vicki's son
Matthew just had done, or a heavy liquid that Dr. G told us about
some time ago - something to replace the vitreous, at any rate. I
also assume that at that same time he would need to cauterize the
vessels that are bleeding inside and causing the vitreous to cloud,
probably via laser. Am I on the right track? I know that I will be
talking to the doc soon, but not soon enough, as far as I'm
concerned! I would also like to ask Vicki whether Matthew's
treatment required a hospital stay, of if he was able to go home
the same day.
I am also curious as to your own experiences with glaucoma and
non-functional eyes. Should a prosthetic be our last resort? Is
there a point at which the glaucoma might become too painful and
non-treatable and a prosthetic would be necessary? Rachel's left
eye is also slightly smaller than her right, and I am concerned
about the future possiblity of facial disfigurement. Right now, the
difference is not noticeable, but I don't know if that can change
in the future. I know that there are strong opinions regarding
prosthetics, and I truly want to hear from your hearts on this
matter.
Date: August 30, 1998 My son is 19 years old. He was a 30 weeker and had lots of
health problems. He also was a twin - his brother died before
birth.
His ROP was identified early but he didn't start having trouble
with detachments until about 5 years ago. Up until then he was
seeing at about 20/80 in his right eye when is it was "corrected".
He wears contact lenses.
He's had 4 laser surgeries on his right eye. Those were
successful. He regained all his former vision until June this year
when he had a scleral buckle and then a few weeks ago the
vitrectomy because of tears and detachments. We do not know yet
what the outcome of the surgery will be.
His activity has been very limited after the surgeries for 2 -
3 weeks. Most people are told to keep their face down after a
vitrectomy. His doctor told him he does not need to do that, but
his best position is on his right side.
We have been seeing Dr. Perkovich and Dr. Scattergood at the
Green Bay Eye Clinic in Green Bay, Wisconsin which is about a 4 1/2
hour trip for us. We live in the northern part of the Upper
Peninsula of Michigan. It is called the Copper Country because
years ago it was a great copper mining area.
To see Dr. Trese is about an 11-hour trip for us, but we have
family in the area. We will be seeing Dr. Trese on September 22.
What is scary now is that my son thinks he may be having trouble
with his left eye (his "good" eye). He's been seeing at about
20/40 in this eye with his contacts.
Date: September 17, 1998 I'm wondering if any of you have had problems with your corneas
and had to stop wearing contacts. I have worn one since 1994, and
up until this year it was very helpful. I actually preferred it
over my glasses because it enabled more use of my peripheral
vision. Besides the fact that it's time to have it replaced, I've
noticed that it is absolutely no help at all now and actually seems
to make things worse. I've been having some major problems with
decreased vision since early this week and originally thought I was
catching another cold. But I wore my contact ens on Sunday and am
wondering now if this was a bad idea and my cornea is now just too
sensitive to tolerate the lens. This is the first decrease I've
had since June except for the time when I was running a fever and
had the bronchitis. Even then it wasn't this bad.
I'm hoping to get an appointment with a doctor soon and will
probably know whatever I need to know then, but I wondered if any
of you had any experience with this stuff.
Date: September 17, 1998 I had major problems with wearing contact lenses. It wasn't
that it irritated my corneas,but the lens in the right eye would
never stay straight. At that (in 1984) I had a high degree of
astigmatism and required a very steep lens to accomadate this.
However, I couldn't get a lens to fit properly in my right eye.
After anywhere from about one half hour to two hours, the lens
would rotate, and my vision became extremely blurry. It was like
wearing an entirely different prescription, and I saw much worse
than without the contacts. I tried about three different pairs,
but nothing would work. I would have appreciated the contacts, as
they do allow better us of peripheral vision. I felt that I could
move my eye to keep objects within my islands of vision, whereas I
can do this to an extent with glasses, but the frames sometimes get
in the way. Now that my vision is spottier, the frames seem to
further restrict my vision as I cannot move my eyes and scan as
well as without glasses.
In your present situation, it's so hard to say whether this has
to do with any change in prescription. Also, I'm wondering if you
may be experiencing anything similar to my situation of the contact
not remaining in place, or if your cornea is much more sensitive
now combined with having to get used to a contact in your eye
again. I'm sure once you can see an opthalmologist, some or all of
these questions will (hopefully) be answered.
I'm sorry to hear that you've been experiencing more problems
with your vision within the past week. I can appreciate how
frustrating this must be for you. Also, I'm sure it is
disheartening, stressful, and fearful as it creates fear about the
"unknown" and anxiety in adapting to these changes. Fluctuating
and decreasing vision are definately "no fun." It's a constant
roller coaster of emotions and working with various adaptations.
My support is with you.
Date: September 23, 1998 I'm just now starting to get anything useful back after wearing
my contact lens a couple of weeks ago. We have stepping stones out
in our yard. It was a big deal to me to be able to peer at the one
directly in front of me, to be able to see my cat eight inches from
my face, and to be able to tell the differences in the brightness
of my lamp (the only lighting in my bedroom) without having to
judge by the degree of heat when I changed the setting. Three
weeks ago these would have been huge steps backward, but today they
are steps forward. I won't be wearing my contact lens any more,
and I'm really sad about that because it was such a big deal to me
to get it in the first place and to be able to tell the doctor that
it made any difference at all with the amount of motion I could see
and with distance perception. Hopefully my glasses will help again
at some point, but they are, in fact, more limiting than my lens
was because of the frames. I know a lot of people who at one time
or another refused to wear their glasses or use their low vision
aids. I never did. I wanted them all the time, and it hurts to
have to give one up and to think that even if anything comes of my
appointment with Dr. Trese--if I get the referal in the first
place--it may not be wise for me to wear contact lenses because of
the condition of my cornea.
Date: October 2, 1998 Well, my cake is sitting in a glass case across the room, and
I'm hunting for the key.
Dr. Trese's office told me that I need a referal. I got the
referal. But because I am not in an HMO, the referal has to come
from Medicaid, not a doctor. I kept getting asked if I had seen a
primary care physician. I had called several doctors a few weeks
ago and couldn't get in very soon. They asked what I needed. I
said a referal to an ophthalmologist. They said, "Just go."
So I went, and now it doesn't matter except that I got my meds.
Getting my meds is a good thing, but it doesn't get me any closer
to seeing Dr. Trese. I could pay for the office visit myself, but
I wouldn't be able to have anything done at the hospital without
some kind of insurance.
I did find out that Dr. Trese even has an Indiana Medicaid
provider number. It doesn't matter, I suppose. My Medicaid worker
didn't know what I should do. She only deals with eligibility.
She finally told me to have Dr. Makris' (where I was yesterday)
office submit for me to get prior authorization. Dr. Makris'
office doesn't know where to call. "Am I supposed to call the
Medicaid office here in town or where?" I don't know, I'm just the
patient, and all I want is to find out what needs to be done so I
can see a light in the house like I could a year ago! I'm tired.
My mom is upset because it's not my job to know who they're
supposed to call--she's right. I'd say I just don't care, but it
would be a lie. I want this done because I'd like to, believe it
or not, go back to school in January if at all possible.
Date: October 3, 1998 My son Matthew (20 years old) has had a scleral buckle (6/4/98)
and a vitrectomy (8/4/98) done on his right eye, and as I write, it
seems he is experiencing another detachment in the same eye. (He's
beginning to have symptoms and I will be calling the Green Bay Eye
Clinic to see if I can find his doctor within the hour.)
The last time he saw his doctor, he was told that if another
detachment occurs, he will probably need another vitrectomy with
either another gas exchange or an infusion of silicone oil.
I have some questions that I know you can answer only in general
terms, from your experience, and that may or may not be applicable
to Matthew's situation.
1. Is another vitrectomy the usual course of action? How many
times can this be done? What happens next time?
2. Both subsequent detachments occurred about six weeks after
the surgery. Is this a critical healing point of some kind or
simple coincidence? Should we/they be doing something different to
avoid this next time?
Date: October 21, 1998 First of all, I apologize to anyone who gets this twice or who
is already familiar with some of what I'm going to share.
Yesterday I went to see Dr. Trese in Michigan, who is one of the
leading researchers on ROP, to discuss procedures which might be
able to restore some of the vision I have lost over the last year
or so. Most of the day was spent driving and waiting in the
office. My appointment was for 1:45, and I didn't see him until
4:30. He was very nice and answered questions I had about various
procedures I've read about in the journals. There is a small
portion of the front of my eye which is still clear and gave him a
glimpse of my optic nerve and that portion of the retina. It was
still attached. He could not see other portions of my retina
because of the deterioration of my cornea. He did say that he
believes the huge greyish-black thing that I keep seeing in front
of me and which really is not there is my own cornea.
At some point I will be having what is called an open-sky
vitrectomy. My cornea will be removed, and the detached portions
of my retina (if any) will be reattached. I will end up with a new
cornea out of the deal as well. There is still a lot of paperwork
to be done with Medicaid to get me approved for surgery in
Michigan. The cornea specialists who would be able to assist don't
necessarily take out-of-state Medicaid. So I am back to waiting
for a phone call. The surgery will be done on a Friday afternoon
and I will be able to go home the next day. I don't know what
limitations I will have in terms of activity, but I'm sure there
will be some. At least I won't be in the hospital for a long time.
Date: October 30, 1998 I don't even know if my question has an answer, but I need to
ask to say that I asked. Supposedly all this vision loss is
related to corneal damage and there is some tiny spot which Dr.
Trese could see through and see that my retina was attached at the
optic nerve and that my optic nerve was healthy. But I'm in
another one of those phases where things just get darker and darker
every day. I don't even open the curtains now because it doesn't
matter and just frustrates me that I cannot appreciate the daytime.
Vast difference from two months ago when I saw the squirrel a
couple of feet away. Anyway, I'm just wondering if there could
come a point when it would be too late for the graft to do any
good. I just want to know if I'm being afraid of something
irrational. The surgery keeps getting pushed back, mostly because
of Medicaid. The corneal specialist who would be working with Dr.
Trese wants to see me in the office and then order a cornea. How
long does it take to get one after he sees me? Today I was told it
probably will be at least December before I have this done. I've
just been waiting since May, and it doesn't seem to matter that I
cannot see reliably even to tell if my lamp is burnt out. No, it
doesn't technically keep me from getting things done, but it hurts
so much, especially to know that there's some glimmer of hope that
keeps getting pushed farther and farther away. I'd settle for
having the cornea done here in the state, but nobody thinks it's a
good idea to have two surgeries when it can be done in one, and I
can completely understand why.
Date: November 2, 1998 "Anyway, I'm just wondering if there could come a point when it
would be too late for the graft to do any good."
Not having seen your eyes, I can't be sure. In general,
however, it doesn't matter if you wait for a while to get a corneal
graft. It's like a dirty window - it can stay dirty for a long time
and still not damage the contents of the room. However, delaying a
graft can have some negative impact if it makes it difficult to
evaluate the retina due to the poor view in or out, or if the
cornea degrades to the extent that it perforates.
Date: November 4, 1998 Hi everyone. Marianne could you please explain what you mean by
first and second wave? Do you mean kids born in l940s and 50s with
ROP as 1st wave and '70s as 2nd wave? If so then I'm a first
waver born in 1948 who didnt have really serious problems until my
30s which I guess is unusual. I was very nearsighted,
astigmatic,and had strabismus but relatively ok with glasses. I hit
33 and then had over the years vitreous separation and hemmorhage,
detached retina, and cataracts. When I was a kid my parents had no
clue about my vision-doctors didnt discuss things and/or my parents
didnt ask. Its good to see how involved parents are now and
treatments are available now. Thank G-d for intraocular lenses!
Dont give up!
PS- I had to fight my HMO to pay for my 2nd cataract op! I won
though. Judy
Date: November 13, 1998 Yesterday I saw the cornea specialist who will be assisting Dr.
Trese with the surgery. To put it mildly, it was a very
frustrating experience.
For the purpose of giving background related to this, I've never
really seen colors reliably, especially red and blue, and colored
lights are a waste of time. People describe certain forms of color
blindness in which the person can see shades of contrast but not
identify the colors. That is how I've always been able to see. I
said all of this because probably the most painful thing about the
visit came about because I can't see colors. He asked me to tell
him what color a light was. Of course I couldn't. He launched
into a speech about how my problem is really my retina because even
people with really damaged corneas can still see the color red.
This after three doctors have told me that my cornea is creating a
dirty windshield effect which is likely to be causing my problem.
I told him I had never seen red. He started explaining the risks
of the corneal transplant. I appreciated his honesty, but it was
so negative that I felt like he was saying not to do it. He
finally got right to it and said, "You could lose everything, and
even a little bit of vision is better than none."
I told him that a year ago I might have agreed with him. But a
year ago I could see a pole or some other object that was in my way
and make a sort of accurate judgment about how far away it was.
Now I can't do that. On a cloudy day I usually cannot tell it's
daytime. That is not useful.
He kept on about how even if the surgery was a failure I would
have to come back for follow up. Well, duh. That's just the way
it goes. I wanted to ask him if he knew how to present facts
without using them to influence me. The whole time I was in there
I got the impression that he thought I was some poor blind girl
looking for a miracle and that I didn't understand my own
condition. I know that he doesn't know what I've lost over the
last year or two and he wasn't in on the conversations with my
childhood retina specialist who saw me for 16 years and knows how
crucial it is that I have a maximum amount of light available.
In the end, he said it's Dr. Trese's call and that Dr. Trese
can't do anything with my retina unless I have the cornea. Then
it's really a moot point, isn't it? I am obviously really counting
on Dr. Trese. I did tell him that regardless of the risks, I have
to know that I tried. He obviously didn't give me any prognosis of
what things would be like if it was successful. I don't know that
I'd believe him if he did. Maybe people with healthy retinas can
compensate somehow for the corneal damage by looking through the
clear spots. I don't know. I just know that the doctors who have
followed me since childhood said that the cornea was the obvious
change when I started complaining about vision loss but were also
hopeful about something being done about my retina. I'm really
unhappy about someone who's only seen me once talking like they
don't know what they're talking about. Something just doesn't sit
right about it with me.
I know it really doesn't matter. The important thing is that he
does the surgery well. But this had some really strong emotional
effects on me, and they're not going away that easily.
Date: December 30, 1998 Guess what! It finally got done. I know you all listened to me
gripe about red tape for months, and some of you are getting the
more detailed updates via the update list. I thought I would post
this here since it's particularly relevant, and also to say thank
you to everyone for all your support over the last eight months.
(Good grief! Has it really been that long?)
I ended up having the corneal transplant and the vitrectomy done
at the same time. The vitrectomy was done by Dr. Trese, and the
corneal transplant was done by another doctor. They didn't give me
anything much to hope for. I found out later that my parents felt
pretty discouraged after hearing them outline all the risks and
offer no guarantees as I was about to go into surgery. When I woke
up, I was in a lot of pain and wondering if this had really been
worth it. I kept reminding myself that it was the fact that I
tried that was important.
I had a traction detachment in the macula area which was
repaired successfully. I didn't even get the gas bubble. Also,
the corneal specialist said that I had the worst-looking cornea he
had ever seen. Even with these factors, I was not given any
guarantees. It's supposed to take six months for me to get the
maximum benefit.
I am only 12 days out of surgery, and I feel like someone went
back in time, took the eyes of the 15-year-old me, and gave them to
the adult me. We're not talking reading vision, but definitely
something functional beyond anything I've had for several years.
I'm beginning to be able to see the outlines of small objects
(2-inch or so) at a few inches' distance, and the blurriness is
clearing up quite a bit. I am hoping that this is a really good
sign. When I talked to my former optometrist, who had asked for
updates, he seemed very encouraged by this. I'm also getting some
benefit from my glasses, although I plan to look into getting new
ones in a few months.
Date: February 10, 1999 I'm not that old, but none of the treatments for babies were
around when I was born. They didn't even screen babies back then.
By the time my ROP was discovered it had already done its damage.
I ended up having some light and form perception which my parents
discovered when I was near your twins' age. I used it to its
fullest, but it wasn't always going to be with me. I've had three
emergency surgeries in my lifetime, attempts to scramble to save
what I had and, this last time, to restore what I had lost. I rode
with the flow for the first two. The last one was such a hard
decision to make, and although it was successful it has made me
think a lot about why it was so important to me. I don't function
any differently now than I did when I had no vision for a period of
time--not really, anyway. I couldn't pick my mom out of a group of
people and never have been able to. I can see her features from 12
inches away, but most of the time I don't understand what about
those features makes her look different from another person of the
same height and build. Now that I have some of this vision back, I've found myself
doing a lot of comparing of what I can see now to what I could see
two years ago, seven years ago, etc. All I come up with is an
opinion that visual reality is so changeable, so unreal. I could
never accept this until today. I was spending all my time thinking
of all the things I could not do as easily as everyone else. Those
things are still true, but equally true is the fact that what is
seen is not always what is real. It is only a perception of what
is real. That doesn't make it less important, but it does let me
know that it is ok to have a different perception of what is
real--a perception based on the fact that I see things differently
with my eyes or not at all with my eyes and instead through my
other senses. I know that for the sighted parents of blind
children blindness can seem like an awful thing. It makes you stop
and realize what you have and how precious your ability to see is.
I think what I'm trying to say is that your kids will enjoy their
lives immensely, especially if you are giving them the message that
you know they can enjoy it--and I know you will. It takes time to
adjust to this stuff, and it's ok for you to take that time. That's
so much of what this group is about: taking the time to go through
that adjustment process. We're all at different points in the
process, whether we're parents or adults, but we do all care and
understand the process.
Date: February 11, 1999 Rachel has had vitrectomies in the past. I am embarrassed to say
that I don't remember exactly how many - things were so nuts then
and it seemed like I barely had her home at all, and then she was
in and out of the hospital every other day! She had laser as soon
as the ROP was diagnosed, then scleral buckling, and then the
vitrectomies started. This poor kid was a lot like yours, I think,
in that the ROP just seemed to show up all at once and there was
nothing they could do to stop it. I think the biggest heart breaker
was having the nurses in the NICU telling me it was no big deal -
the laser would stop it and all that would happen was maybe some
strabismus that could be corrected, or she would be nearsighted and
lose some peripheral vision. The doctors, on the other hand, were
very frank with us right from the start. We were told that she had
it bad, and that if the laser and buckling wouldn't stop the
progression of the disease and they had to go to vitrectomy,
chances of her keeping any degree of useful vision were very slim.
But as you know, we had to try. To sit and do nothing at that point
would have been to guarantee she would be totally blind. Rachel had some object perception a while back. Not much, but
enough to help her maneuver around the house and even in strange
environments without walking into walls and such. Then there was
bleeding inside her right eye which clouded the vitreous fluid, and
she lost that. We only knew because of her behavior. She stopped
getting out of bed by herself, stopped walking through the house
unassisted, etc. She really regressed. All they plan to do with
this procedure next week is to flush out the eye. They aren't going
to do anything else to the retina at this point. I believe a large
concern now is simply preserving the integrity of the eyes, since
they have already been through so doggone much. Rachel's left eye
has a detached and torn retina, with scarring all the way into the
iris, so the doctor doesn't plan to do anything more with that eye
at all. Right now Rachel can see bright lights, but this is not
anything that she uses. She responds when the doc shines the
pin-light into her eyes, but that is about it. Her doctor, by the
way, is Michael Goldbaum. He works out of the U C San Diego Medical
Center. I know that he is acquainted with Dr. Trese (who I believe
you said was your retina guy), because he consulted Dr. Trese about
Rachel's case on at least one occasion. I know what you mean about wanting your kids to see what you
see, to see your faces. It is really hard to get past that stage
where you're not just crying every time you see a sunset. My
husband is an artist and knowing that Rachel will never see her
dad's drawings of her is difficult. We go to the museum and I want
to have her reach out and feel the sculptures, but I don't think
the docents would appreciate it! I would like to try to arrange
some kind of special tour for Rachel, though, where she could
experience the art in a way that is meaningful to her. Maybe when
she is a little older. I also wanted to just quickly comment on something you wrote
about feeling at times that "this is the worst it can be." It is
hard not to feel that way, especially when they are so small and so
much of learning comes through sight in the early stages. But I
want to tell you some of the things I have seen lately at the Music
Conservatory where I take Rachel. I've been wanting to share this
with the list anyway. There is a Braille Music division at this
school, and on Saturdays the place is full of blind kids. At five,
Rachel is the youngest. Then there is a little boy who is six. The
rest of the kids range in age from 10 years old to one who is a
college student. Some are musically gifted. At least one of them is
tone deaf, but I believe he still benefits from the discipline of
learning to play the piano. The school is funded by donations, and
right now the teachers are doing this for nothing. That is right -
they are there all day Saturday working with these blind kids, and
they do not get paid. The kids go off to the midi class, working
with electronic keyboards and computers. Then it's a listening
class where they listen to and talk about different kinds of music.
Meanwhile, they are also taking turns being pulled out for their
individual piano lessons and braille music code lessons. Us moms
and other caregivers sit in the lobby and drink coffee and yak, and
I have been learning so much from these other moms. I mean, I
thought I had it bad! One child was born with cancer. His mom was
told that he would be a vegetable if he survived, but she refused
to give up. She brought him here from Italy in order to get better
care. Her husband abandoned them. Her son is now 10 years old and
a very active kid - he's all over the place! He sees only shadows
and light, but that does not seem to slow him down at all! Another
10 year old had a brain tumor and literally has half a brain now.
I heard him in the recital hall last week singing first the major
third, then the minor third as other blind kids played the tonic
and fifth. It was wonderful! I mean, there are people with complete
brains who can't do that! I know you have to grieve what we all
want our kids to have, and that takes time, but I just want to
encourage you - even though they can't see like "normal" kids, they
can still do many, many things. And with a mom and dad who care,
their chances are soooo much better! Hang in there. You're doing
the right thing. Date: February 13, 1999 It has really been quite an experience reading everyones
comments. I can identify with Sarah and Katey and Pam somewhat,
but it appears I am REALLY one of the old ROP preemies. (It's hard
to believe I am 50!! Sounds too old to me!) I was born in 1948
before the doctors really knew what was going on about premature
babies' eyes. I remember my mom always said it was a miracle that
I even lived. It really makes one appreciate God's wonderful
grace. My mom told me that when I was born, I was almost 3 months
early, was 11 inches long, and the doctors didn't weigh me until I
was two weeks old. At that time I weighed 3 lbs. 2 oz. (Parents
of little ones with ROP...believe me, they will catch up with their
weight. I tease and say I still like eating every two hours!!) No
one even thought about checking or treating my eyes at birth or
after the several months I spent in an incubator. When I was home
after a few months my mom noticed a white clouding in my left eye.
The pediatrician thought it was cancer and referred me to an
ophthalmologist. Then my condition was diagnosed as RLF
(retrolental fibroplasia). The "old" term for ROP. I am totally blind in my left eye with no light perception at
all. I was always very nearsighted in my right eye, but was
corrected to 20/68 with glasses. Other than several bouts of
elevated pressure, things maintained status quo until I developed
a cataract in my right eye when I was around 42 yrs. old. My
vision got increasingly worse to 20/1000. Finally when I was 46
years old I had the cataract removed and an intraocular lens
inplant put in. THis was a wonderful surgery for me. Even though
my peripheral vision is quite limited, my right eye with glasses is
now corrected to a visual acuity of 20/25+in the part of my right
eye that is not affected by the areas of retinal damage and
scarring. I am able to drive and am able to do quite well. It is interesting to see that the grownups with ROP who post on
this list all appear to have received training and education in
"helping professions". I am a social worker with Child Protective
Services, and others like Sarah Blake, and it sounds like Pam and
Katey, also are in the counseling field. It also seems like people
with ROP are feisty and achievers as we have dealt with the various
problems faced with our various degrees of visual impairments. It
also appears that we have an extra dose of compassion for others. It has been neat to see the numbers of parents who are dealing
with these issues our parents faced years ago, and these new
parents have many more procedures and resources available to them
for their little ones. I hope all of you are encouraged by hearing
from ROP survivors that your little ones, in spite of their
struggles and limitations, have a future and a contribution to
make. In reading about little Rachel, I know her God-given musical
talent will not only provide her with a means of expression, but
will bring joy and encouragement to others. I have really enjoyed my e-mail friendship with Sarah Blake for
almost a year. I met her off of this support group Because of her
diligent research and insights, I have learned more than I ever
knew about ROP. Even though I have been to college and graduate
school, I never knew there were others struggling with ROP. I
never even really knew what my vision condition was. The doctors
never told me. I've learned a lot from Sarah's hard work and now
when I go see my eye doctor, I have numerous questions for him
regarding my own ROP condition. I never was even told about the
stages and zones. I really appreciate this support group because it helps with
some of those feelings of frustration...both as a person with ROP
and for you parents whose children are affected.
Date: February 15, 1999 "Other than the periodic visits to the Pediatric
Ophthalmologist, are there any warning signs to watch for that
might indicate diminishing vision in a yet non-verbal child?" Just signs of decreased visual function in daily activities
(i.e. inability to performs tasks that they were able to do before,
hesitancy in walking or crawling, less visual attentiveness, etc.) Date: January 7, 2000 Penny wrote to Debra:
"Are you blind due to ROP?" I was wearing glasses since the age of 3. I was very
nearsighted, had a lazy eye. I went to a regular school, just
barely got a drivers liscense. When I was 34 my serious eye
problems began. It started with a retinal tear in my better eye.
After many surgeries I have 20/500 to 20/800 in my right eye. My
worse eye which had always been functionally blind due to the lazy
eye developed retinal detachments and then developed sympathetic
opthalmia with much pain. My specialists could not get the
detachments to stay repaired and the pain was uncontrollable and
they were worried the infection would jeopardize the other eye so
I had the worse left eye removed. The pain wa gone in 2 days. We
tried every medicine to control the infection and nothing would
work. I could not put up with the extreme pain any longer either.
Date: January 8, 2000 Hi Debra! Were the problems that you encountered later in life
due to being premature or was it just something that can happen to
anyone? What are your feelings on being sighted and then going blind?
I would think that the good thing would be that you once saw the
whole picture and maybe any new experiences would be easier to
understand. I am assuming that your computer tlks as you type? How does that
work? We have been so involved with the early parts of having a
blind child that we haven't really gotten into the technology part
of it. How big of an inconvenience to you find it for you being sight
impaird? Do you work?
Date: January 9, 2000 The problems I had at this later age are due to ROP and my early
birth. I wasn't happy at first and didnt know how I could manage. But
with time and help from Hadley school for the blind I have come a
long way. It sure helps to meet personally with other positive
blind people. I met some wonderful people who are members of The
National federation of the Blind. My computer talks and has a screen enlarging program The things
that
are out there computer wise are just like cars , some you will like
better than others. One drawback is they are very expensive. I really was hurt by not being able to drive my car anymore. I
even gave up my bicycle when the vision got worse. I miss not
being able to recognize people from afar off. I am not employed.
Date: January 16, 2000 Hello, There has been a thread here going and I would like to add my
own observations. As an adult now who once had vision 20/40 in the
right eye and 20/200 in the left eye due to ROP I can say that I
did not have many problems until I was age 34. It seems the ROP was
in regression I think the term is called. Then I had many surgeries
and it was dissapointing when they did not hold. I wanted t
From: <"mailto:ropgirl@growingstrong.org">Sarah J. Blake
From:
From: Sarah J. Blake
From:
From: Sarah J. Blake
From: <"mailto:ropgirl@growingstrong.org">Sarah J. Blake
From Jody Ianuzzi
From: Sarah J. Blake
From Kathleen Langstaff
From Sarah J. Blake
From: Sarah J. Blake
From: Pam Berryman
From: Jody Ianuzzi
From: Sarah J. Blake
From: Sarah J. Blake
From: Sarah J. Blake
Give Me Your Peace
Verse 1
I'm hiding the pain I feel, pretending to go on.
But You can see right through it. You know I'm not that strong.
You can hear the silent cries so deep within me,
You know the pain, and You know just what I need.
Chorus
Hold me tight. Carry me through this time of sorrow.
Give me strength to go on until tomorrow.
I need You to show me You are my God and forever will be.
Give me Your peace, my Lord.
Verse 2
You hold the keys to life abundant, full, and free.
No matter what I lose, I can always have Your peace.
So in this time of loss, please comfort me
And help me to know that You're all I need.
Chorus
Hold me tight. Carry me through this time of sorrow.
Give me strength to go on until tomorrow.
I need You to show me You are my God and forever will be.
Give me Your peace, my Lord.
From: Sarah J. Blake
From Jody Ianuzzi
From: Beverly
From: Helen Harrison
From: Sarah J. Blake
From: Pam Berryman
From: Scott Richards
From: Jody Ianuzzi
From: Sarah J. Blake
From: Sarah J. Blake
From: Sarah J. Blake
From: Sarah J. Blake
From: Sarah J. Blake
From: Sarah J. Blake
From: Sarah J. Blake
From: Pam Berryman
From: Sarah J. Blake
From: Jeanie Flowers
From: Sarah J. Blake
From: Jeanie Flowers
From: Vicki Mikkola
From: Sarah J. Blake
From: Pam Berryman
From: Sarah J. Blake
From: Sarah J. Blake
From: Vicki Mikkola
From: Sarah J. Blake
From: Sarah J. Blake
From: Scott Richards
From: Judy
From: Sarah J. Blake
From: Sarah J. Blake
From: Sarah J. Blake
From: Jeanie Flowers
From: Kathy Burkleo
From: Scott Richards
From: Debra
From: Penny
From: Debra
From: Debra