[NAGDU] {Spam?} Re: {Spam?} Cataracts, Surgery, and Having a Guide Dog -- LONG

[Tracy Carcione]

Tami's message reminds me of Dr. Jernigan's Nature of Independence speech,
one of the greats.  It says, paraphrasing, independence is going where you
want, when you want.  How you accomplish that is nobody's business but
your own.  And he adds, don't pretend you don't want to go because you're
afraid your skills can't handle it.  If you don't know the way to the
lunchroom, don't pretend you're not hungry anyway.  If you want to do
something, learn what you need to know and find a way to make it happen. I
still think about that sometimes, when I want to do something new and
might feel anxious about it.
I'm sure the speech is available on nfb.org.  It's worth a read.
Tracy


> Lisie,
>
> It seems like you're facing a big transition and difficult decisions
> right now. It's the sort of thing that wreaks havoc with emotions, so
> don't beat yourself up about your reactions for awhile. Well, don't beat
> yourself up ever, but especially as you deal with this and try to find
> the logical decisions, let yourself have the emotions, too.
>
> As for cataract surgery, how to use your dog, all that... You gotta do
> what you gotta do. It's your decision, no one else's. Period. It doesn't
> matter what people think. People won't be dealing with the consequences
> of whatever decisions you make. You will. As for social norms... Are
> there social norms for a situation like this? I doubt it.
>
> If the cataract surgery won't yield positive results and is highly
> likely to yield negative results, then not having the surgery is the way
> to go. If you decide not to, you may get a lot of push back from people
> who think you're foregoing a miracle cure, but it's not their decision
> to make. Sounds like you would be traiding one version of blindness for
> another, and sticking to the vision you're used to makes sense to me.
> You'll need to adapt still to the new changes you're facing right now,
> and you're the best one to decide how to do that.
>
> If using your dog to guide, whether it's sometimes or all the time,
> improves your mobility and lifestyle, then there you have it. If you're
> mobile without special training, then that's fine, too. The important
> thing is that you can go where you need to go and get there and back
> again safely, using the tools that work best for you. If someone feels
> insulted by your choices, I just don't know what to tell them. Lack of
> mobility training might impact getting a trained guide dog through some
> of the programs; others seem to evaluate your mobility on its own
> merits. Since you're training your own dog, it's not a factor.
>
> Public access with a dog under the ADA depends on the handler being a
> person with a disability. Since you're using your dog as a hearing alert
> dog, I'm assuming that whether you've crossed the line to legal
> blindness or not is not a factor there.
>
> I have progressive vision loss and can assure you that transitioning to
> a new level or type of loss is never easy. It's especially rough when
> the changes cause a significant difference in how you function, so you
> have to make a lot of decisions and learn new ways of doing things while
> your brain is sorting out the lack of information it's used to using.
> People around you will try to help, and some will actually be helpful.
> Others, not so much. It's hard to sort through all the advice and
> admonition when the world has gone all weird and stuff. I think the best
> you can do is remember that you are the one who will live with your
> choices, including whether to follow any given piece of advice. If you
> choose to stay home at night and are happy with doing that, then do it.
> If you would rather be out doing, using your dog to guide you, or using
> a cane or whatever, then be careful during the learning process, but do
> it. And so on.
>
> hth,
>
> Tami
>
> On 07/16/2016 05:43 PM, Lisie Foster via NAGDU wrote:
>> This is long. I'm sorry. I tried to make it shorter but I failed
>> miserably. Please feel free to skip over it because it's long and
>> probably whiny.
>>
>> I know I don't post much but I really need help with figuring something
>> out, so I hope it's OK I'm posting this to the list.
>>
>> I have progressive/degenerative myopia, with only light perception
>> vision at night and in dim light. My dog and I trained with and
>> graduated from a service dog training program as a team a while ago.
>> And, since I have trained working dogs before, and because I've studied
>> guide dog training for years ( I originally wanted to become a guide dog
>> mobility instructor, but continued studying when I was told my vision
>> might progress to the point of legally blindness). So, I trained my
>> dog's guide work and he's now been working beautifully for months. I can
>> go out after dark again, and I've gained a lot of confidence and
>> independence because of him.
>>
>> My near-total loss of vision in dark conditions has always been
>> attributed to the fact that I have a high-degree, progressive,
>> not-fully-correctable form of myopia (it's considered an eye disease,
>> different from simple nearsightedness, as it usually leads to other
>> vision changes and loss, and it typically reaches a point where it can
>> no longer be fully corrected).
>>
>> Yesterday, I had my first appointment with an ophthalmologist in a
>> different practice than my normal one; he was my second opinion because
>> I never felt like the other doctor took me seriously.
>>
>> So, the new doctor found that, in addition to progressive/degenerative
>> high-degree myopia, I also have two other things going on: one is
>> something new, but minor, called "convergence...something", which can't
>> be corrected but isn't a big deal. The second thing he found was that
>> I've developed unusual forms of cataracts in both eyes. He said these
>> cataracts are responsible for at least part of my near-total loss of
>> night vision, my partial loss of color vision, the problems with severe
>> glare, etc.
>>
>> When I asked him if it was a matter of having a simple surgery (like
>> almost everyone does at some point in their lives, at least in the
>> U.S.), he paused, then said carefully that I wouldn't have the same
>> outcome as most people do with cataract surgery. Most likely, I'd lose
>> close & mid range vision to a low or mid partial level that may or may
>> not be correctable. He doesn't know if the myopia would continue to
>> progress; but, he said the surgery might help, at least for a while,
>> with regard to my long distance visual acuity.
>>
>> He told me having surgery would help eliminate some of the issues with
>> glare, and would improve my night vision to an extent. He's not entirely
>> sure that these cataracts will stay fully within the lens of the eye,
>> because they're different from typical ones; they are a lot like
>> cortical cataracts, but aren't age-related, (I'm in my early 30's), but
>> they can form in or around the lens, and sometimes invade surrounding
>> tissues. They're totally benign, thank goodness, but the dr said surgery
>> may not be able to stop the later development of more of these in the
>> area that would surround an artificial, implanted lens. He said my
>> insurer wouldn't pay for surgery right now, anyway, since the cataracts
>> need to be larger before they'd even consider it. My insurer's criteria
>> for surgery isn't related to functioning, but by objective measurement.
>>
>> Last night, I decided that since I only had cataracts, I had no reason
>> to have my dog work as a guide anymore. I'd planned to simply stay at
>> home at night, stop working my dog as a guide, and undergo surgery
>> whenever that will be (it could be six months, or it could be a couple
>> of years). I decided that, since cataracts are treatable, it was an
>> insult to people with eye conditions that aren't treatable to ever
>> consider letting my dog guide again, and that it would be wrong of me to
>> stay on guide dog lists like this one.
>>
>> I finally slept, after two days on two hours of sleep, and hope I'm
>> thinking more clearly today.
>>
>> After what my doctor said, I don't even know that I want to have
>> surgery, primarily because of the drawbacks and the likelihood that it
>> would do as much harm as it would do good. He was clear that having
>> surgery will destroy the vision I rely on most (near-to-mid range),
>> which may not be able to be corrected at all.
>>
>> So, do I sound like a horrible person for not jumping at the chance to
>> wait and have cataract surgery? What if I decide not to have it? Do you
>> think I'm almost obligated by social norms to have the surgery, no
>> matter how it impacts my vision, and whether I want it or not?
>>
>> I mean, would any of you -- people who are REAL guide dog handlers,
>> people who have their dogs due to far more significant and much more
>> valid reasons for vision loss than I have -- consider it selfish or
>> wrong of me to choose against surgery under these circumstances? Would
>> you personally be offended if I continued to allow my dog to work as a
>> guide at night, and if I were to keep using my cane in dark/dim
>> conditions, at least for the time being (until surgery was possible and
>> I made a decision)? Would you think of me as abusing the system? Would I
>> be abusing it? If I don't have the surgery, will I seem like an
>> ungrateful idiot?
>>
>> I know that, without the surgery, I'd become legally blind both day and
>> night sooner than I would from progressive myopia, alone. But, not
>> having the surgery would mean I'd be able to retain a fair amount of the
>> type of vision I use most -- close/mid-range vision, despite being
>> legally blind.
>> (I only qualify for certain types of surgery due to the other
>> conditions, so there is no way to get around the side-effects on my near
>> vision). But if I allowed the cataracts to progress in order to preserve
>> near vision, would you regard me as someone who should NOT ever be
>> considered blind, and as someone who should NEVER be allowed to apply
>> for a guide dog, because I didn't have the surgery?
>>
>> I'm rambling. A lot. I hope maybe some of this made sense. If anyone
>> might have any advice or thoughts here -- even if it's to say I'm a
>> total idiot for ever thinking I had a reason to teach my dog to guide,
>> that I had no reason to ever have had O&M training at all, or to say
>> that I'm a complete jerk for using a cane to navigate at night before my
>> dog was fully trained -- I'll be grateful to you.
>>
>> Having thought for years that my night vision, or lack of it, was due to
>> one thing, it's really confusing to suddenly learn that oh, it's also
>> probably because of something that surgery might help, but that same
>> surgery would be done at the expense of other aspects of my vision that
>> I value more.
>>
>> Help? Please? Thank you if you made it this far! I didn't mean to
>> re-write War and Peace on the listserv, but I just did, so I'm sorry if
>> I broke the list in doing so. Haha!
>>
>> Thank you!
>>
>>
>> Lisie and her funny sweetheart of a dog (who keeps trying to get his
>> mommy to stop typing and get his leash for a walk)
>>
>>
>> Sent from my iPhone
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>
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