Not trying

Living with low vision I've to every time question myself (not yet the tea spoons. sigh!), if there is a real limitation to a task due to my low vision or if I am not doing anything to get out of my comfort zone? It is easy to deny everything because it is difficult to see. Living in denial is easy, doing something despite the visual challenge means hard work, dealing with your own ego on a daily-basis
(setting up an incompatible, overdemanding timer to every activity. "Calendar: Read 200 pages today." Start. Fail. Whine. Let despair out of its hiding place. Repeat again everyday. Never learn.).

A lot of limitations we impose on ourselves have no basis in reality. Sooner I eliminate these false limitations from my life, better relationship I will have with myself.

I've not used my camera for a long time. I liked watching people, their expressions, capturing the detail. When it started getting difficult, rather than finding a new technique/subject, I simply stopped to take my camera with me. I have charged the batteries and I am going to take it out. And I will try to find new ways of capturing things.  Try and unlearn the "normal" way and adapt to "my" way. Defenestrate the excuses. Create something, even if it means creating distortions. Who said there is just one way of seeing??

No man's land

I am neither in an able world nor completely in a disable world. Like the characters in Sartre's Huis Clos who assumed hell to be representative of physical pain and torture, I also assumed years ago that the world would eclipse on me at the later stages of Stargardt's.

I can still read books (digital formats with magnification if not paper). I can recognize people by their countenance if not by their faces. I can do almost everything as normal people but I do it differently..

But I didnt know 10 years ago that I will be okay. I always thought of extremes. To learn braille, to find a job where I have to speak more and read less (interpretation), to adapt for some dark world, without colours.Lack of awareness about the diseasae, about adaptation, about LVAs.  

In India, doctors didn't help me. No teachers suggested about extended testing times. I lived with low self-esteem as my performance in exams started to get affected as soon as 9th grade. I didn't understand why I could not complete a paper or why my score in mathematics started to dwindle when I was positive I had made no mistakes. I didn't know then that Iwas "misreading" digits...


I was trying to assimilate my world with the point of view of a sighted person. And that was the big mistake.

If you or someone in your family has just been diagnosed with Stargardt's. Don't panic.  First step, find out what you are dealing with. With technological progress, everything is possible today. Find out which visual aids you can use. Try to meet or connect with people with SD who can help you with adaptation tricks that they learnt over time from experience. Make a list of do's and don'ts with the help of your vision counsellor. Living with Stargardt's is like living the same world differently. Everything is possible but the rules of sighted world do not apply. So, second step is to unlearn to see things from a sighted person's perspective. We panic because we have always been taught to understad sighted world as normal world and everything else is an anomaly. You need to unlearn this and start to learn the tricks and ways of being in a different world. Everything is still possible in that world but different.

I'm legally blind. And I have a normal job where I perform better than my "normal" colleagues. And soon when I am ready I will complete my Ph.D in French Literature. There are no real limitations in any of the day-to-day activities. Only limitation sometimes is unawareness.

Dry eyes

A lot of people with SD complain about dry/itchy eyes. Do not ignore it. Always keep your eyes lubricated. You can get a lot of good eye lubricants over the counter (for eg. Optive). It is also a good idea to ask your retina specialist to prescribe you some anti-inflammatory eye drops as well. Inflammation may not be always visible. You may just feel discomfort in one eye (due to eye strain).Anti-inflammatory drops provide immediate relief.

A portable digital magnifier for all-purpose reading?

I have been trying to find in Forums on how people with low vision can do extended hours of reading. Kindle for the time being gives me access to only editions sold by Amazon. I still miss on a lot of books and especially books where the typeface is fixed.

Some people suggested desktop magnifiers which range between $2500-$4500. But I thought that surely there must be something better out there than bulky devices like MyReader2. 

I also came across Intel Reader, which is a portable scanner/reader and comes at half the price of a desktop magnifier (Amazon lists the product at $845. But you can contact Intel GE Care Innovations to check for any ongoing discount). Doesn't fit in the pocket but you can carry it in your bag to to school,  libraries, supermarket (weight: 630gm). Just like desktop magnifiers it works on OCR technology but you do not need to put the print material under a scanner. You just point & shoot to capture the printed text (e.g., a book page, a newspaper article, a restaurant menu...) which gets converted to digital text. You can view this text in large font size, customisable foreground, background colours. Or you can choose to listen to the text using text-to-speech feature. The files can also be stored in mp3, DAISY,wav file format. Yes, it is compatible with DAISY. You can connect it to your Windows or MAC to download files.


I like the concept but it seems still too bulky. And the screen is too small for reading. 

Update - Intel GE Care Innovations has also released Achieve tablet which is similar to Intel Reader in terms of features but lighter, with wider LCD tablet like display (do not search at Amazon, it will  most likely give you vitamin supplements as search result :P).

Features:  

• 7 inch display with high contrast themes
• Dual-core 1 GHz ARM Cortex* A-9 processor
• Android* Honeycomb* 3.2 Operating system
• 5.0-megapixel camera to support photo capture of:

o   8.5 X 11 page 
support for two pages but can’t exceed 8.5” x 11”

o   150 lines per page

o   8-point, 350-dpi font

• File creation (DAISY, MP3, .txt, .jpg)
• Import or capture and read and/or listen
• High-quality natural speaking voices (Only English UK and US)
• Gesture-based navigation
• Achieve Software for Windows* or Mac*
• Supports DAISY 2, 2.02, and 3; NIMAS 1:1; .txt; Learning Ally Audiobooks; and Bookshare digital books. 

Price is not available but this site lists it for around $700.

Achieve Tablet is a good solution for students who need to read a lot of print material. I would have liked if it could support MOBI, ePUB and PDF formats and serve as an all-purpose reader solution. 

ZoomReader app for iPhone 4

For iPhone users, AI Squared's ZoomReader allows to magnify and read the text in the captured image. You take a picture of the sign you want to read, it magnifies and retrieves the text from the image using OCR technology and reads it out to you. And it is just priced at $20.

Kindle's Inaccessibility

I purchased a Kindle 3 a year ago. So far, the accessibility feature has been mostly adequate for me. Although text-to-speech and type face options depend on the publishers, which I find a huge issue. I always need to "try a sample" to ensure that I can "read" it!

After talking to some other people with low vision, I realised that Kindle still does not offer font option for page menu navigation. The Voice guide option (Menu - Settings - Page 2 first option) can help but it is not very reactive. By the time it reads out the contents, I am already squinting to find my way through on my own.

Still, I feel that e-ink does not strain my eyes if I read in enough light. When I purchased Kindle I could read easily in font size 5, now I rather choose font size 6. There are two more bigger font sizes that I can still choose.




I do not use text-to-speech option a lot, because the text-to-speech technology used in Kindle is still very basic. There is no pause between sentences which most of the times becomes very confusing.

Reading books

Thanks to Kindle, I could again read in 2009 after a 5 year disturbing hiatus. My reading speed is still limited and I finish a book in 2 weeks rather than 2 days but I can READ.Yet, it remains a completely different experience.

For me, reading has never been an isolated activity. I have always associated a book with the external material circumstances linked with reading - the cover of the book, how I got the book (hours of rummaging through a library or a specific bookstore or gifted by a friend), outside weather, and my disposition as a reader at a given time and stage in my life.

Now, with a Kindle, there is no cover, no physical "form", no old pages, no more hunting through libraries (just search title on amazon and download with one click),

I sometimes grieve for the loss of material aspect of the book. Earlier, when I read paper books, each one had a separate physical identity with a different jacket, size, weight, each having a different odour and procuring a "physical" life of its own in my bookshelf (Samuel Beckett's "Molloy, Malone Dies, Unnamable" soaked in rain and then dried in sun, some pages of Othello's Arden edition smeared with my pink skin allergy...). It was not easy carrying Musil's The Man Without Qualities".

Now, on a Kindle everything is black and white, and customisable - font, spacing, pagination. To my annoyance, some books no longer retain their original author-intended page format and space appropriation vis-a-vis the written text. Where would we fit some of the works of Perec here, all the ambivalence between subjective and objective space?

Yet, I cannot complain. At least, an e-reader like Kindle allows me to "read" again despite low vision. And I shouldn't complain about physical form so much because I cannot read print anyways :P

I sometimes use text-to-speech option on Kindle for non-fiction books when I want to read in bus or in public. Partly to avoid reading in a moving bus or to avoid other people peaking into the page contents or sometimes to avoid a situation when strangers tell me that I shouldn't hold a book so close to my eyes. The narrator in Kindle's text-to-speech utility often ends up skipping essential pauses leading to misinterpretation and confusion. In comparison ZoomText narrator is much advanced. Although, I still find narrator or audio books too intrusive for a solitary activity (reading).

I am also these days a bit annoyed with my brain processing everything wrongly due to limited visual picture that it receives. I misread a lot without knowing that I'm misreading.

How do you manage prolonged reading with low vision? Do you have better solutions?

To tell or not to tell

In my experience, most of the people don't care how difficult it maybe for you to live. We have all become insensitive to each other perhaps. And perhaps we all have our own set of woes to deal with on a daily basis. There is no space for others.

I've gone through phases in my life. When I was younger, people would think I fake it and they wouldn't believe I had a problem, because I was better at academics, my vision in the better eye was still 6/24 then. And usually there was never any problem with familiar places. I used to find it difficult to tell strangers (at fastfood counters or bakeries) that I cannot read the menu or tell the name of what I want. Five years back I had travelled for 30 days across Northern Europe alone with a zoom camera as my only aid. I didn't ask people for help then. 

Now I do not hesitate in telling people I've an eye problem and if they could help in reading out the menu, bus number, sign board etc. Although, I only talk about it if it is realy necessary. For e.g. at a department store, I prefer to be independent. I end up walking a lot if I am visiting a supermarket for the first time but once familiar I know where to pick what from. In case I need to buy a new product, I google the image to know what I need to look for. I'm really scared of cursive font and/or 20 page menus or the ones where the paper/font contrast is not good. In case I am not carrying magnifier, I ask them their best dishes out of starters/main course etc.


At Work

Personally, I feel you should never disclose completely about the progressive nature of your disability in a job interview or even later until you are sure that people will accept it and not create problems for you. You can state that you have low vision if you feel you would require your employer to purchase lowvisual aids for you (Screen magnifier/reader). If you can rely on windows accessibility, then you don't even need to mention low vision.

No one understands what it is to see like we see. Just like I can never fully fathom what kind of perception of the world a blind person has.

My teammates know that I've low vision and I use screen magnification (windows accessibility features). If I need to give a presentation to a client or internal staff, I prepare the slides in normal font but take printouts in large font for myself to present the slides. If other people are presenting, I ask them to provide me with large font printouts or email me their presentation before the meeting.

Recently I discussed in detail with someone from another team about my vision impairment. And this person thought that I should not be allowed to translate because I might misread and mistranslate something. I would have lost my job if this person had any authority to determine my eligibility for the role of a translator. I told him that our work is proofread before it is delivered and so far I've always had good feedback for my work and never any "misreadings" in the correction feedback tracker. I told him that I'm a proofreader as well still this person was not convinced that I should be fit for the job. 

How to explain others about Stargardt's?

(From wikipedia)

As only 1 in 20,000 people are impacted, most of the people are unaware of the condition. Also, it is difficult for the sighted to understand our condition. When my vision was better even I couldn't understand what was happening to me or what would be in store for me in the future.

   
First step is try to tell others that it is not some bad case of uncorrectable myopia.

Peripheral Vision 

You can explain to others that you are losing your central vision. For all human beings there is a central vision and peipheral vision. Central vision helps us to perceive details, to read, to recognize faces whereas peripheral vision (view not in direct line of focus) helps us have a broader view. You can hold your visiting card or identity card in front of them and show them if they are looking directly and using their central vision and are able to read. Then, ask them to look sideways (i.e. use peripheral vision) and see if they can read. They will tell you that they can make out the broader picture (that you are holding a card in front of them), they can notice the colour, shape but they cannot read. Explain to them that if they use their side vision, i.e. look straight ans try to perceive the view on their side they will be able to notice big objects, like trees, people walking, but will miss details about them.

Brain fudge 

Reading or recognition process is part visual and part processed by brain (association). As we can only see partially, our brain ends up guessing for us. Imagine a jigsaw puzzle with missing pieces, that's how we see the world. But for most of us, we do not see blank spaces for the missing blocks of view. Our brain recreates the blank space by filling in things from memory. So I will not see a manhole in the road sometimes, because my eyes couldn't spot it and my brain processed the image as smooth road. I misread words. In later stages of SD, some people also experience visual hallucinations - Charles Bonnet's Syndrome

Navigating in a new place

Anyone petrified of finding their way in a new place? Especially in India, where the cities don’t have a planned layout and block B may not be adjacent or close to block A or C but to block K and where no navigation device would accurately help, sometimes searching for a new address is almost like going to war! Grit your teeth and onward.


Still, my flatmate always found it odd that I know the exact order of stores on any given street when I cannot read a store name or sign even when I am directly in front of it.

But, it is just adaptation, as I cannot read I find other means, other details that act as “repères” (landmarks, reference points), a different set of associations from the sighted world that help me navigate.  I need to observe my surroundings more closely and memorise every detail to avoid the harrowing situation of wasting another 2 hours before realising that I was just 10 meters away from the spot when I started. 

In a new place, I would rather call up the store/friend and ask them for precise landmarks (located on which side of the road, closer to which intersection, which floor, near which metro exit, etc.). I find it reduces the area where I need to search and thereby the possibility of getting lost.

I used to feel terrified of finding my way in a new place. Over time, I've learnt to accept my limitations and ask for help. Now I'm not embarassed to ask people on the road for directions even if it turns out I'm standing right in front of my destination. I don't care what they think. I don't want to be psychologically terrified of a new address and I do not want to compromise my independene.

Dealing with isolation

Today, I was reflecting on how over the years I've come to be a loner. And how vision impairment has isolated me in my relationships and limited the possibility of a relationship with other people. I do meet interesting people with whom I've some connection but howsoever I try I cannot recognize them again. Sometimes even if I have met those people several times, I cannot distinguish them from the rest. They will complain that they waved at me, greeted me and I didn’t respond. They assume I am rude or I want to avoid them.

I try and explain to them about the disease, so that they know that they should come in my field of vision for me to notice them. But then, either they don't remember or understand “my” field of vision. They confuse me with a worse case of myopia.

In a way, it shuts me from the indifferent world. And I can argue that I end up interacting with only those who would really enjoy speaking to me. Eliminates me from just-so-i-saw-you-i-must-speak-to-you ;)

On another level, it is difficult even with family and friends. I stopped communicating to parents about deterioration levels when I realised it upsets them greatly. I cannot see them helpless, weak. With friends I feel I can still talk about fears related to career, independence, relationships but I get two kind of extreme reactions - some think that it is unimaginable how I do everyday things in "my" different way and then there are some who don't really understand that it is difficult.


Over time, I've stopped expecting people to understand. SD is a key element of my life, that defines me and everything I do. Yet, I cannot share it.