My Year Two Major Writing Project

My year two essay is a continuation of my story of personal adaptation and experience in coping with deterioration vision.

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Visual Interface: Resources for the Visually  Challenged

    In the last few years I’ve come to accept that my vision isn’t going to stabilize. After eight years of receiving treatment for diabetic retinopathy, and accompanying complications (including cataracts,) there has been no improvement or slowing of deterioration. 

    Last month they operated to remove the cataract on my right eye. The change in my vision in that eye is amazing – the new lens has changed the “light” from a dingy yellow caste to a bright white. This change makes me realize how bad my left eye is and, luckily, surgery is now scheduled. 

    For years I’ve had difficulty with colour identification. I lost the ability to tell brown and purple apart, and many shades of green and blue were indistinguishable from each other. I now realize that the yellowish caste that the cataracts (and age) had caused was the culprit. With that yellow filter removed I hope to get back my ability to identify colours by sight, which is important in my creative endeavours.

    While removal of the cataracts has removed the fog that only allowed me to see dark or light blobs, it won’t change the effects of the retinopathy.  To deal with that, and the subsequent complications, I continue to research and adapt to my new reality, to figure out how best to manage my life and work.

     The RNIB and Macular Society publish leaflets about all aspects of diseases of the eye, symptoms and conditions, as well as emotional and practical support. At the Royal Eye Infirmary there are racks in all the waiting areas stocked with a wide variety of leaflets. I find these publications provide so much more information than I get from the consultants and treatment specialists. 

    In reading through the RNIB leaflet Understanding Eye Conditions Related to Diabetes, I discovered more about the complications. I had a basic understanding of retinopathy, but now know a lot more about it and how it relates to my other issues.

    After my regular appointments at the Royal Eye Infirmary, they send a letter to my GP and I get a copy. According to these letters I have been diagnosed with all the complications listed in the leaflet:

- Diabetic Retinopathy – both eyes

- Background Diabetic Retinopathy – both eyes

- Pre-Proliferative Diabetes Retinopathy – both eyes

- Diabetic Maculopathy – both eyes

- Clinically Significant Macular Oedema – both eyes

- Cataract – both eyes (surgery now completed for both eyes as of  March 2024.)

    This was somewhat shocking to me. The only reason I was diagnosed with Type 2 Diabetes in the first place was because of my annual eye exam in December 2015 (which, I admit, was a couple years late,) where they discovered the retinopathy. I was immediately referred to an ophthalmologist and told to see my family doctor. Two days later I was informed I was a Type 2 Diabetic and put on Metformin. 

    I immediately took control of my diet and within four months had my blood sugar down in “normal” range and am healthier than I’ve ever been in my life. I stopped taking Metformin in early 2019, and am now off blood pressure medication as well.  My regular blood tests indicate I am “not” diabetic which means I am in remission, maintaining blood sugar levels of a non-diabetic. All due to cutting out carbohydrates and sugar from my diet.

    In 2016 I started getting injections in my eyes; which the eye clinic staff only referred to as “procedures” – I had to demand they tell me what that entailed. After a year or so of regular injections with no real improvement, I asked the doctor if this was going to be happening for the rest of my life. He told me that in 80% of patients their conditions stabilize, and, as long as they keep their blood sugar and blood pressure under control, they can stop getting injections. That was in 2017.

    But my eyes did not improve and have continued to deteriorate.  I’ve been controlling my blood sugar for close to nine years, which, according to the literature, should have helped to stabilize my vision. I can only assume that I had been diabetic for years before diagnosis and the damage to my eyes is irreversible. At least there are treatments: an uncle went blind at the age of 19 as there were none available in the 1960s.

    The injections are to treat the macular oedema – which is swelling caused by the leaking of fluid and blood into the macula. The drugs used are called anti-vascular endothelial growth factor (anti-VEGFs). There are two drugs in use for this: Lucentis® (which is what I received in Alberta, Canada until 2017) and Eylea® (which I’ve been receiving since 2018 in Ontario, Canada and here in the UK.)

    I find that the injections will clear up my vision (by drying out the “leaks”,) short term. I get around three weeks of being able to see more clearly, with less blurring and sometimes the blind spots will lessen or move away from my central vision. But, after six weeks I am back to where I was prior to treatment. My chart says I am supposed to receive treatments six to eight weeks apart… I typically end up waiting 10 to 18 weeks between them and have severely restricted vision for the balance of my wait for the next treatment.

    The other information leaflets are published by the Macular Society. I find their publications really useful as they concentrate on one specific issue in each one and it makes it easier to read. Their leaflet on Diabetic Macular Oedema lists the symptoms - and I’ve got all of them. Typical.

- Dark spots like a smudge on glasses, particularly first thing in the morning.  Every day – I constantly am cleaning my glasses to get rid of those smudges.

- Objects you are looking at could change shape, colour, size, and move or disappear. Which is why I don’t like traveling on buses or at night.

- Colours fade. This has been a problem for me for years, can’t tell certain colours apart.

- Bright light and glare is hard to handle. They are blinding and physically painful.

- Difficulty reading. Well, ah, duh.

- Straight lines can appear bent or distorted. I haven’t been able to see, draw or cut a straight line for at least six years now.

    In a strange way, it is somewhat comforting to know I am so consistent. Textbook one could say.

    RNIB’s leaflet on Cataracts contains a lot of information. Again, I have all the symptoms, which all overlap the symptoms of my other complications. In the case of my right eye, the cataract was so bad I was legally blind in that eye – vision was “CF” meaning counting fingers. I couldn’t read anything from the eye charts, even the billboard sized one stuck in front of my face. But the nurse waved her hand in front of me holding up two fingers and I was able to say how many she was holding up. Yet, I was still legal to drive with the lousy vision in my left eye alone. That is crazy (not that I have any plans to drive, don’t worry!)

    Both the RNIB and Macular Society have leaflets about Visual Hallucinations (Charles Bonnet Syndrome.) This was fascinating as I had been experiencing this (I covered this in last year’s essay.) I saw the leaflets at the Eye Infirmary so grabbed a copy. Totally amazing condition, really. The brain wants visual stimulation so it creates its own. Blew my mind. Only issue was, as noted in the literature, once you understand what is happening, the visions often stop. I was, still am, really disappointed that I’m not having private showings of historical epics and fantasy tales anymore. I still get little flashing lights and occasional floating orbs, but no more interactive characters.

    There is a plethora of leaflets for the practical and emotional aspects of dealing with sight loss. I picked up two from the Macular Society: one is Emotional impact of sight loss and the other is Support Groups. I only picked these up for reference use for this essay. I’m a self-sufficient and pragmatic type and don’t dwell on the stuff I can’t do anything about. I just get on with coping the best way I can. I certainly check out my options, but have never been one to seek out emotional support from strangers. I’m quite open about my vision problem and not afraid to ask for help when appropriate. However, the information provided would be invaluable to those needing support.

    The leaflet, Registering as sight impaired is excellent. The Macular Society lists everything you have to do to be registered if you have a permanent visual impairment. There are two categories: sight impaired and severely sight impaired. There are many benefits to getting registered: free services, equipment, blue badges, allowances, housing benefits, tax reductions, Universal or Pension credits, etc. 

    The information for the practical needs are very good. I picked up Lighting, Using Technology and Low vision aids from the Macular Society. In particular, I found the Lighting leaflet to be extremely useful. It explains that a 60 year old with sight loss will need nearly six times the light of a sighted 20 year old! For a 60 year old with normal vision, they need three times more light. I didn’t realize age caused that much of a difference.

    The leaflet goes into a lot of clear detail about the different types of light, how to make your home better functioning for your requirements and safety. I have really noticed the improvements myself after following several of the suggestions. It explains different light types, types of bulbs, colour temperature, task lighting. It also gives recommendations on how to use magnifiers with lights – how to hold them, and distances, etc. This leaflet has been the most useful to me in a practical day-to-day way as I have used the information to make changes around home and improved my ability to function.

    Using technology offers lots of options and tips. However, I have real issues and concerns with much of the technology available. Many of the options require that they are linked to the internet to operate using smart speakers and smart phones. I have always kept myself and my information off the grid as much as possible (for someone who uses a computer daily at home.) I don’t use a mobile/smart phone. And as far as Google Home, Alexa, etc. and other smart speakers are concerned – not interested in something that can spy on me without my knowledge. 

    I have adapted my computer (which is almost 10 years old.) I’ve got the text magnified, upped the contrast, and other features. When I need to get a new one I will be getting an illuminated keyboard, and any other assistance options available at the time of purchase. 

    Manual magnifying devices, including multiple strengths of reading glasses and book page size hand held magnifiers are littered around the house, and with me all the time. I can usually get by with those, if not, I ask people to let me know what the labels or forms say.

    I was given a demo of a transportable magnifier which is a digital screen/camera on a stand that can scan printed material you lay under it and reads the text out loud. But it won’t save the material. I didn’t see that as super useful to me. I can convert text to audio on my computer… Paying close to £4000 for a one trick pony did not seem reasonable to me.

    The Macular Society offers a Connect by Tech service to help people with all the different technology, enabling the visually impaired to make the most of whatever they are using, which would be a great help to anyone.

    Low vision aids covered some of the technology mentioned in the other leaflet but also went into detail about low tech aids and resources, such as: handheld magnifiers, stand magnifiers, Brightfield/Flatfield magnifiers, binoculars and monoculars, magnifying/reading glasses, etc. The leaflet explains how to use the various tools and offers suggestions for daily items: large print publications and games/cards, talking microwaves and watches, products that use colour contrast and/or are larger than normal. Instructions are provided on how to use most of the tools as well.

    This leaflet included contact information for low vision services in the community, as there are programs that will assist with daily living skills and referrals to other services.

    The last leaflet I currently have on hand is Travel put out by RNIB. This is a comprehensive volume of 60 pages covering everything from canes to guide dogs, mobile GPS to the Access to Work scheme. There is a lot to know about your rights to access and what assistance there is. Mobility training is available through local social services if you are struggling to navigate the world.

    I found it interesting to learn that there are three types of canes: the symbol cane, the guide cane and, the long cane. The symbol cane is simply held to indicate to people that you are blind or partially sighted. I often noticed people carrying a folded up white cane and didn’t realize it was for that purpose. The guide cane also lets others know you are visually impaired but also works to find obstacles in your path. Long canes have various tips that help you to get around safely: roller tips, roller ball tips, and pencil tips. Training is needed for guide canes and long canes. Canes that are white with red bands indicate the user is both sight and hearing impaired. 

    In relation to travel and use of technology: during my trip to Prague and Vienna last autumn, I covered a lot of miles in museums and part of my mission was to seek out what aides for the visually impaired were available. I rented the audio guides (if they had them) and used them extensively.

    In Vienna, the Upper Belvedere Palace audio guide rental was €5. They gave me a piece of paper with information and explanation of how the system worked. Their machines were the oldest of the ones I used but that was not a problem.

    Selected works had a symbol and number on the cards so you punched in the number to hear about the work you are looking at. Sometimes I found the cards hard to read - they would use the same background colours as the walls, low contrast printing and mounted them quite low in many cases, so it was often hard to see the number.

    There was one exhibit that was deliberately designed for visually impaired. It was the only one I saw that was done in this manner (in any museum,) and I covered every floor and every gallery. 

    Unfortunately my photos are not that clear, but they had created this display, creating larger versions of the relief carving for people to touch and had it all in Braille as well.

    At the Art History Museum Vienna (Kunsthistorisches Museum Wien) the rental of the audio guide was €6 and they only gave me a floor plan/map. The machine was much newer technology and more of a mobile phone size.

    This museum was the most challenging as the cards were not well lit and the symbols and numbers were pretty small. I had to get very close to be able to see if there was a symbol and number available for the work.

    Overall this museum was the most difficult for me as I walked into rails and the edge of displays often as the lighting was non-existent - they only lit the objects. I ended up with several bruises and a sense of relief that I didn’t knock anything over. It would be very difficult for people whose vision was more impaired than mine.

    I went to the Leopold Museum which houses one of the largest collections of modern Austrian art in the world. This one was nice as it was very well lit (modern art means colourfast paints maybe?) and the cards and symbols were much larger and more prominently placed. Rental of the audio guide was also the least expensive at €4, but they were the only museum that required you leave your ID with them for security. The device was the most up-to-date one I rented the whole trip.

    They had three streams of audio clips to listen to - adults, youth and kids which was very cool! I listened to all of them. They were very well done - the kids' versions were usually in the first person and relatable to a kids' frame of reference.

    As you can see the symbols were very prominent and the numbers large enough I didn't have to strain to read them. 

    Previously, the only other time I’d used an audio guide was at the Museo Picasso Málaga in 2018, it was great. I honestly don't know why I've been so slow to get them at every museum that has them - it really improves the experience, particularly when you can’t see the cards.

    There are a lot of options available to the visually impaired – both in resources and physical aides/technology. It is just a matter of getting access. The RNIB and Macular Society appear to be doing an excellent job at publishing the information – although the only place I have seen any is in the waiting rooms at the Royal Eye Infirmary. It would be more helpful to have them given to you at GP appointments or even by the people you meet with concerning disability accommodations and other services. 

    I continue to move forward with my life, and strive to be as artistically and creatively active as I have always been. Using the information I am researching regarding my condition, and sight loss in general, is providing a foundation for progressing past the frustrations. As my own visual interface has altered so significantly, other pathways have to be formed. I feel I finally am forging new route to my own creative satisfaction through knowledge and experimentation. I feel that the work I am producing now is some of the most satisfying I’ve done, which is a huge step forward for me on this journey I am on.

 

Bibliography

Macular Society, (n.d.) Emotional impact of sight loss, Macular Society.

Macular Society, (n.d.) Lighting, Macular Society.

Macular Society, (n.d.) Low vision aids, Macular Society.

Macular Society, (n.d.) Registering as sight impaired, Macular Society.

Macular Society, (2016) Support groups, Macular Society.

Macular Society, (n.d.) Using technology, Macular Society.

Macular Society, (2018) Visual hallucinations, Macular Society.

Macular Society, (n.d.) Your guide to diabetic macular oedema, Macular Society.

RNIB, (2016) Confident Living Series: Travel, RNIB.

RNIB, (2019) Understanding Series: Cataracts, Edition 3, RNIB/The Royal College of Ophthalmologists.

RNIB, (2014) Understanding Series: Eye conditions related to diabetes, RNIB/The Royal College of Ophthalmologists.

RNIB, (2021) Understanding Series: Visual Hallucinations – Charles Bonnet syndrome, Version 001, RNIB/The Royal College of Ophthalmologists.

Images

All photographs are by the author.