The Beginning of the Dark Ages
December 17, 2011 4:54 PM Subscribe
How can I adjust my work/life plans in the face of serious vision problems and recovery from surgery? (Details inside.)
This is a follow-up from this question.
I had my eye examination, including dilation and examination of the retina. My ophthalmologist found a case of slow, progressive retinal detachment in my right eye.
This is known as "vitreoretinal traction," because the vitreous humor (the jellylike stuff in the eyeball that helps it hold its shape) is pulling on the scar tissue that formed in my retinas from a condition known as retinopathy of prematurity. I was born twelve weeks premature; this was in 1970, when preemies were still given oxygen even though it damaged their eyes. The traction is slowly pulling my retina away from the back of my eye.
I can expect progressive deterioration. The recommendation is vitrectomy: a surgical procedure in which the vitreous humor is removed and replaced with a clear sphere of gas or oil that holds the retina in place. It is an invasive operation requiring general anesthesia, a week of bed rest (face down), and may take months to fully recover from. Vitrectomy does not promise improvement in vision in all cases; a possible complication is total retinal detachment. In short, there seem to be no miracles. I went through PubMed myself and verified this, as much as I am qualified to read medical articles.
My left eye is less affected (though it also has the original retinopathy) and so I expect to retain vision in that eye.
I am seeking a second opinion, of course. The time scale of the deterioration seems to be months; I was told that seeing another specialist after the holidays would be fine.
What I am most upset about (besides the possibility of eventual legal or total blindness) is what am I going to do about my job and the two academic projects that I am working on.
I work as a school librarian; it isn't an extremely demanding job, though the students are sometimes unruly or unpleasant, and I have good health insurance, so I would really like to be able to keep the job. That is probably a higher priority than the academic projects.
I have not yet told either of my project editors for the academic projects about my diagnosis. Will I need to bail out on them? Can I, since I signed contracts already?
I signed on to write a chapter for an academic "companion" work on a major classical author, 5500 words long and due in July 2012. I have some stuff written but have not finished all the research.
I am also editing a less academic encyclopedia on Greek and Roman warfare for a reference publisher. I'm editing the Roman volume. I find contributors, edit their submissions, and am required to write 10% of it myself (preface, chronology, etc. and some of the articles). The final submission date was originally July 2013, but may be pushed back to 2015 (the project editor's estimate, due to backlog).
Right now, reading academic articles is making my eyes and my head hurt, but I'm terrified that if I don't do it now, I won't be able to later, after the operation.
In the worst case, I'm familiar with assistive technology (having done a library school paper on it and prepared guides for the school library) such as Kurzweil 3000 screen reading and the build-ins in Mac OS X and the Amazon Kindle. For writing I could try speech-to-text software, such as Dragon Naturally Speaking.
At this stage (the diagnosis was Thursday!) I am barely holding down panic; the title of this post is only partly a joke.
This is a follow-up from this question.
I had my eye examination, including dilation and examination of the retina. My ophthalmologist found a case of slow, progressive retinal detachment in my right eye.
This is known as "vitreoretinal traction," because the vitreous humor (the jellylike stuff in the eyeball that helps it hold its shape) is pulling on the scar tissue that formed in my retinas from a condition known as retinopathy of prematurity. I was born twelve weeks premature; this was in 1970, when preemies were still given oxygen even though it damaged their eyes. The traction is slowly pulling my retina away from the back of my eye.
I can expect progressive deterioration. The recommendation is vitrectomy: a surgical procedure in which the vitreous humor is removed and replaced with a clear sphere of gas or oil that holds the retina in place. It is an invasive operation requiring general anesthesia, a week of bed rest (face down), and may take months to fully recover from. Vitrectomy does not promise improvement in vision in all cases; a possible complication is total retinal detachment. In short, there seem to be no miracles. I went through PubMed myself and verified this, as much as I am qualified to read medical articles.
My left eye is less affected (though it also has the original retinopathy) and so I expect to retain vision in that eye.
I am seeking a second opinion, of course. The time scale of the deterioration seems to be months; I was told that seeing another specialist after the holidays would be fine.
What I am most upset about (besides the possibility of eventual legal or total blindness) is what am I going to do about my job and the two academic projects that I am working on.
I work as a school librarian; it isn't an extremely demanding job, though the students are sometimes unruly or unpleasant, and I have good health insurance, so I would really like to be able to keep the job. That is probably a higher priority than the academic projects.
I have not yet told either of my project editors for the academic projects about my diagnosis. Will I need to bail out on them? Can I, since I signed contracts already?
I signed on to write a chapter for an academic "companion" work on a major classical author, 5500 words long and due in July 2012. I have some stuff written but have not finished all the research.
I am also editing a less academic encyclopedia on Greek and Roman warfare for a reference publisher. I'm editing the Roman volume. I find contributors, edit their submissions, and am required to write 10% of it myself (preface, chronology, etc. and some of the articles). The final submission date was originally July 2013, but may be pushed back to 2015 (the project editor's estimate, due to backlog).
Right now, reading academic articles is making my eyes and my head hurt, but I'm terrified that if I don't do it now, I won't be able to later, after the operation.
In the worst case, I'm familiar with assistive technology (having done a library school paper on it and prepared guides for the school library) such as Kurzweil 3000 screen reading and the build-ins in Mac OS X and the Amazon Kindle. For writing I could try speech-to-text software, such as Dragon Naturally Speaking.
At this stage (the diagnosis was Thursday!) I am barely holding down panic; the title of this post is only partly a joke.
I would suggest calling Lighthouse International (800) 829-0500 for resources local to you. They can help you with information, but also with adaptive and assistive technologies and put you in touch with a low vision therapist. My uncle, who has worked his whole life as a film editor, has lost more than 1/3rd of his vision to glaucoma. His story is here; he has also made a film called Going Blind. I understand the possibilities are terrifying here, but I hope it will help to learn how, even in the worst case scenario, you can have a really functional, full, employed life and career.
posted by DarlingBri at 5:15 PM on December 17, 2011 [3 favorites]
posted by DarlingBri at 5:15 PM on December 17, 2011 [3 favorites]
So sorry to hear about this; it must be very frightening for you.
Anyone squeamish about eyes might like to know that eye surgery is going to feature in the next paragraph.
In case it helps you at all, my dad had a vitrectomy done a couple of years ago. He had been suffering from a lot of retinal bleeds as a result of diabetes and is also in his seventies and thus of an age for retinal damage to become more of an issue. Things were getting pretty bad - debris from the bleeds was severely affecting his eyesight and although he was a bit vague about things I think there was a degree of scarring and possibly some further retinal involvement as well. He had the vitreous humour cleaned out and replaced with a synthetic substitute and, as you mentioned, a bubble of gas was created in it to help hold the retina in place afterwards. He did not have to have a full anaesthetic and was able to leave the hospital the same day (in at about 8.30, out by around midday). He said it was done quickly (maybe half an hour) and there was a bit of pressure on the eye as they went in and some bright lights (from the lasers they used to cauterise those parts of the retina that were still leaking) as they worked on it, and a strange sensation as they cleared things out, but no pain and very little discomfort afterwards. He did the sitting / leaning forward thing for a few days, with breaks (I think once an hour for a few minutes at a time). The bubble dissipated naturally after a few days - he said it was literally like looking at a spirit level bubble close to, with the main bubble slowing breaking down into lots of little bubbles over the course of the next few days.
The thing is, he was delighted with the result afterwards - he said his vision was improved beyond anything he could have imagined. The only side effect, which is probably as much to do with the significant amount of laser treatment he'd had previously for other bleeds, is that he is scheduled to have a cataract treated in January, which can be caused in part by the lasers they use.
posted by Martha My Dear Prudence at 5:34 PM on December 17, 2011
Anyone squeamish about eyes might like to know that eye surgery is going to feature in the next paragraph.
In case it helps you at all, my dad had a vitrectomy done a couple of years ago. He had been suffering from a lot of retinal bleeds as a result of diabetes and is also in his seventies and thus of an age for retinal damage to become more of an issue. Things were getting pretty bad - debris from the bleeds was severely affecting his eyesight and although he was a bit vague about things I think there was a degree of scarring and possibly some further retinal involvement as well. He had the vitreous humour cleaned out and replaced with a synthetic substitute and, as you mentioned, a bubble of gas was created in it to help hold the retina in place afterwards. He did not have to have a full anaesthetic and was able to leave the hospital the same day (in at about 8.30, out by around midday). He said it was done quickly (maybe half an hour) and there was a bit of pressure on the eye as they went in and some bright lights (from the lasers they used to cauterise those parts of the retina that were still leaking) as they worked on it, and a strange sensation as they cleared things out, but no pain and very little discomfort afterwards. He did the sitting / leaning forward thing for a few days, with breaks (I think once an hour for a few minutes at a time). The bubble dissipated naturally after a few days - he said it was literally like looking at a spirit level bubble close to, with the main bubble slowing breaking down into lots of little bubbles over the course of the next few days.
The thing is, he was delighted with the result afterwards - he said his vision was improved beyond anything he could have imagined. The only side effect, which is probably as much to do with the significant amount of laser treatment he'd had previously for other bleeds, is that he is scheduled to have a cataract treated in January, which can be caused in part by the lasers they use.
posted by Martha My Dear Prudence at 5:34 PM on December 17, 2011
I know a completely blind academic who manages his writing projects fine using a screen reader. Of course, he's had years of practice. So I think the best thing you can do right now is to begin getting used to assistive technologies while you can still kind of "cheat" using your eyes.
In my experience, academic writing projects frequently (maybe even always) run 6 months over schedule MINIMUM. Everything I've been involved with has ended up being pushed back a year or more. Encyclopedias and edited book volumes are the absolute worst for this. So if it's recovery time from the surgery that you are concerned about, contact your co-authors/editors and let them know, and see what they think. But don't pull out without having that conversation. You'll probably find they don't mind if you are going to need an extra six months or so.
posted by lollusc at 6:03 PM on December 17, 2011 [2 favorites]
In my experience, academic writing projects frequently (maybe even always) run 6 months over schedule MINIMUM. Everything I've been involved with has ended up being pushed back a year or more. Encyclopedias and edited book volumes are the absolute worst for this. So if it's recovery time from the surgery that you are concerned about, contact your co-authors/editors and let them know, and see what they think. But don't pull out without having that conversation. You'll probably find they don't mind if you are going to need an extra six months or so.
posted by lollusc at 6:03 PM on December 17, 2011 [2 favorites]
Reading through your question took me back years ago to my diagnosis of diabetic retinopathy and the many, many laser procedures that I endured. Following were subsequent surgeries for both cataracts and a major retinal hemorrhage that blocked about 50% of the vision in my left eye. I am most certainly not trying to scare you, but in fact the opposite. I now have very clear vision in both eyes (though I have lost a wee bit peripherally from the laser treatments) and can function normally when it comes to my sight.
As I read your note, I see that you are understandably frightened of the unknown and the impact that it may possibly have on your future. It is quite understandable that you are concerned and I completely empathize with your feelings.
Modern eye surgery can be sometimes quite amazing, and I have found ophthalmologists to be a very empathetic medical field. I recommend highly that you contact your local eye association (I do not know where you live) by googling that term. They will be familiar with your problem and will likely be of tremendous support before, during and post surgery. Many of these groups offer vision counseling and have a lot of knowledge about current and future visual aids and devices (should you need them). If you cannot locate one, your ophthalmologist should be familiar with any groups in your area who may be of assistance.
If you otherwise want or need to contact someone for additional support, please feel free to me-mail me at any time. IANYD, but I can lend an experienced, sympathetic ear if you want it. Please keep your head up. There is always a good possibility that things will go without a hitch and you will be once again "back in the light". Best of luck to you!
posted by konig at 6:54 PM on December 17, 2011 [1 favorite]
As I read your note, I see that you are understandably frightened of the unknown and the impact that it may possibly have on your future. It is quite understandable that you are concerned and I completely empathize with your feelings.
Modern eye surgery can be sometimes quite amazing, and I have found ophthalmologists to be a very empathetic medical field. I recommend highly that you contact your local eye association (I do not know where you live) by googling that term. They will be familiar with your problem and will likely be of tremendous support before, during and post surgery. Many of these groups offer vision counseling and have a lot of knowledge about current and future visual aids and devices (should you need them). If you cannot locate one, your ophthalmologist should be familiar with any groups in your area who may be of assistance.
If you otherwise want or need to contact someone for additional support, please feel free to me-mail me at any time. IANYD, but I can lend an experienced, sympathetic ear if you want it. Please keep your head up. There is always a good possibility that things will go without a hitch and you will be once again "back in the light". Best of luck to you!
posted by konig at 6:54 PM on December 17, 2011 [1 favorite]
Take a deep breath!!
It sounds like everything will be fine.
My husband has no usable vision in one eye. There a few very minor situations where he has to adjust (mostly just if I am sitting or walking on his bad side and he has to turn his head all the way to see me). So if your vision is your other eye is correctable then you will be fine, even if you lose vision in your troubled eye.
If you are in the US, your job should be safe (at least theoretically) - I am sure there is a policy on disability leave. Once you find out more, that should put your mind at rest on that part.
However, you will probably want to work before the surgery and during the recovery period. But you already know about assistive technology that can help you get some work done during your recovery. Furthermore, you might consider hiring a reader if learning and using new technology is too much right now.
posted by metahawk at 6:57 PM on December 17, 2011
It sounds like everything will be fine.
My husband has no usable vision in one eye. There a few very minor situations where he has to adjust (mostly just if I am sitting or walking on his bad side and he has to turn his head all the way to see me). So if your vision is your other eye is correctable then you will be fine, even if you lose vision in your troubled eye.
If you are in the US, your job should be safe (at least theoretically) - I am sure there is a policy on disability leave. Once you find out more, that should put your mind at rest on that part.
However, you will probably want to work before the surgery and during the recovery period. But you already know about assistive technology that can help you get some work done during your recovery. Furthermore, you might consider hiring a reader if learning and using new technology is too much right now.
posted by metahawk at 6:57 PM on December 17, 2011
As far as your job goes, get your eye doctor to refer you to an occupational therapist so you can discuss how this will affect the things you have to do, and identify techniques and technologies that can help you adapt. Once you know what these are, you can go to your employer, let them know that this thing is happening, it will probably affect X, Y, and Z duties, and that you have plans in place for how to address those. By law they have to make a reasonable accommodation, and I can't imagine that any of the technology you require would be considered unreasonable. You don't necessarily need to do the legwork in advance of the meeting, but it would be very reassuring for your supervisors to know that you have a plan in place and would probably also help you conduct the meeting more confidently.
Good luck. What a scary thing to be going through. I wish you all the best. I bet you'll figure out a way to make it work.
posted by elizeh at 9:54 PM on December 17, 2011
Good luck. What a scary thing to be going through. I wish you all the best. I bet you'll figure out a way to make it work.
posted by elizeh at 9:54 PM on December 17, 2011
I am effectively blind in one eye (while I have vision in both, due to a neurological issue I can only use one eye at once), and have non-great visual acuity to boot. Being blind in one eye affects my day-to-day life about as much as being unable to smell in one nostril would. I appreciate that it can take a little longer to adjust as an adult, but I can assure you, even if the worst-case scenario happens and you lose all vision in that eye, you'll still be fine.
Also, like lollusc said, it's really really common for academic works to run well over the initial deadline, especially when there are multiple authors. I'm involved in three at the moment, of which two are already months over deadline. Editors are very unlikely to have a problem with it if your contributions are delayed due to a health issue and you let them know in advance that this is likely to happen.
In the shorter term, I totally understand why you're freaked out about taking months to recover from the operation, and I think explaining this to your doctor and/or anyone they recommend you speak to about it is the way to go. Right now your brain is pouncing on your worst fears about the operation and exaggerating them to a point where it's both worrying you sick and actually causing you pain ('read all relevant material NOW, in case I lose the ability to read later!'), and addressing that should be your priority right now, for your own sake.
posted by Catseye at 1:29 AM on December 18, 2011
Also, like lollusc said, it's really really common for academic works to run well over the initial deadline, especially when there are multiple authors. I'm involved in three at the moment, of which two are already months over deadline. Editors are very unlikely to have a problem with it if your contributions are delayed due to a health issue and you let them know in advance that this is likely to happen.
In the shorter term, I totally understand why you're freaked out about taking months to recover from the operation, and I think explaining this to your doctor and/or anyone they recommend you speak to about it is the way to go. Right now your brain is pouncing on your worst fears about the operation and exaggerating them to a point where it's both worrying you sick and actually causing you pain ('read all relevant material NOW, in case I lose the ability to read later!'), and addressing that should be your priority right now, for your own sake.
posted by Catseye at 1:29 AM on December 18, 2011
This sounds really scary, and I'm sure you're really nervous about the future.
I have really poor vision in my right eye too, but I still drive and do most things that people with binocular vision do. I was born with poor vision, so my brain didn't ever learn to perceive depth - for people who lose the sight in one eye when they're older, I think they retain some of their 3d perception, so your life may not be very different from now, after you recover from the surgery.
I hope you can come to terms with the diagnosis and your operation, and that you have the best possible outcome. In the meantime, you might find this site helpful.
posted by mgrrl at 4:09 AM on December 18, 2011
I have really poor vision in my right eye too, but I still drive and do most things that people with binocular vision do. I was born with poor vision, so my brain didn't ever learn to perceive depth - for people who lose the sight in one eye when they're older, I think they retain some of their 3d perception, so your life may not be very different from now, after you recover from the surgery.
I hope you can come to terms with the diagnosis and your operation, and that you have the best possible outcome. In the meantime, you might find this site helpful.
posted by mgrrl at 4:09 AM on December 18, 2011
If you're going to keep vision in one eye then you may not need to go the whole way to using a screenreader, which can be very challenging. Yes, people with no vision at all read and write and work using a screenreader or magnifier and a computer. But it's a steep learning curve. If you have some sight you may be best trying to keep using that.
Your existing computer programs have many mechanisms you can use, like zooming in your web browser, using higher DPI in Windows, or zooming in Microsoft Word. This makes things bigger and easier to see without moving to a screenreader or screen magnifier. BBC site on changing your system for low vision. Microsoft accessibility features in Office and Windows And so on.
But in practical terms, the first port of call should probably be your work IT department, who probably have an approved list of assistive technology, and won't let you use alternatives without a struggle. So if they say "we have a site licence for WindowsEyes, but not JAWS" then I'd suggest using WindowEyes. Don't go buying something without doing that first. It's always a struggle getting AT deployed in a work environment.
posted by alasdair at 8:37 AM on December 18, 2011
Your existing computer programs have many mechanisms you can use, like zooming in your web browser, using higher DPI in Windows, or zooming in Microsoft Word. This makes things bigger and easier to see without moving to a screenreader or screen magnifier. BBC site on changing your system for low vision. Microsoft accessibility features in Office and Windows And so on.
But in practical terms, the first port of call should probably be your work IT department, who probably have an approved list of assistive technology, and won't let you use alternatives without a struggle. So if they say "we have a site licence for WindowsEyes, but not JAWS" then I'd suggest using WindowEyes. Don't go buying something without doing that first. It's always a struggle getting AT deployed in a work environment.
posted by alasdair at 8:37 AM on December 18, 2011
Response by poster: Thank you, people. I saw another retinal specialist today, a more experienced and higher up guy at the Wilmer Eye Institute at Johns Hopkins in Baltimore. He did not find detachment in my left eye, only scarring. He thought that some of the apparent retinal detachment in my right eye was due to the posterior hyaloid surface of the vitreous gel's detaching itself from the retina and looking like a retinal detachment, though I also have a small retinal detachment around the edges. He wants to watch it and see, though of course if anything drastic happens I must have surgery right away.
Of course, even if I lose sight in my right eye, I still have the other one, as those of you who commented have pointed out.
I am starting to think I have a phobia of blindness or of people tampering with my eyes, probably created in small childhood when I had a lot of examinations for my retinopathy of prematurity (though, in the early '70s, they couldn't do laser surgery to ablate it). I was actually put under general anesthesia at the age of 6 so the doctors could do a full retinal mapping, because I wouldn't cooperate awake.
posted by bad grammar at 6:59 PM on December 19, 2011
Of course, even if I lose sight in my right eye, I still have the other one, as those of you who commented have pointed out.
I am starting to think I have a phobia of blindness or of people tampering with my eyes, probably created in small childhood when I had a lot of examinations for my retinopathy of prematurity (though, in the early '70s, they couldn't do laser surgery to ablate it). I was actually put under general anesthesia at the age of 6 so the doctors could do a full retinal mapping, because I wouldn't cooperate awake.
posted by bad grammar at 6:59 PM on December 19, 2011
Response by poster: I do want to make long-range plans (including insurance of course) for possible low vision or loss of sight, but I want to be able to do it without the phobia; maybe I need therapy of some kind, or just time to adjust emotionally.
posted by bad grammar at 7:01 PM on December 19, 2011
posted by bad grammar at 7:01 PM on December 19, 2011
This thread is closed to new comments.
You said you expect to keep full vision in your left eye. I recently found out I have quite crummy vision in one eye and thus need glasses to drive. This got me curious if people who only have one eye can drive, so I googled it.
They can, in most states. I also learned from that website that beyond 20 feet, people with one eye see about the same as people with two. They're given a handicapped permit so they can park in wider spaces, but other than that they can drive fine.
So what I'm saying is, even in the worst case where you could only see from one eye, couldn't you go on about your work and your life more or less normally? I understand this must be very upsetting and I'm sorry, but I think even the worst case maybe isn't as bad as you think right now.
posted by drjimmy11 at 5:08 PM on December 17, 2011 [4 favorites]