How I see it …. reflections on my PhD progress

In my job, one of the most important things in my career has been keeping other people safe, as a nurse, as a mentor and as a teacher. I have always looked out for everyone else, as an educator I help my students to navigate their way through their own study, as a mentor in a youth programme I guide young people to learn life skills with feedback showing that I am competent and capable.

In both of these situations, I have the big picture and I am the guide who is helping others to navigate their way through the quagmire. This week, with around a month to completion of my PhD I have been grappling with some of the same issues my students do. Self-doubt, I have been doubting the quality of my research thus far (four years) and doubting my ability to complete my PhD, in other words questioning my competence and capability.

Many wise colleagues have said obtaining a PhD is not always about just finishing a thesis, it is about the journey you took to get there, showing that you can be an expert in that area and that you are capable of completing research. The problem is when I am immersed in writing it does not feel like the journey is as important as just finishing.

Remembering these comments about the journey triggered me to take a step back and ask myself what I could do to change my doubts. I came to realise that I had been spending 12-16 hours a day writing so that I had time to help out my parents. This meant going back to basics, good sleep, good nutrition and Yoga (which helps the neck and back pain from writing). The thing was, these changes would help me to get back on track but still didn’t fully appease the self-doubt but it did let it take a back seat.

What helped me the most was this morning, at coffee one of my colleagues said, “you can do it, you are doing so well”, “you are almost there”, and I can read a chapter for you if you like. As humans we are quick to judge and critique ourselves and others, to be quite honest, writing a PhD and working in academia requires you to critique yourself and others continually. To have someone encourage and give of themselves without any expectations in return made all the difference and was refreshing.

This has reminded me that progress is not just measured on the finished product, but the journey and I can do a lot of things along the way which can make this run smoothly. Furthermore, encouragement at the right moment in time makes a difference and I plan to ensure that I use these skills to guide others on their academic and life journeys.

How I see it – PhD submission is looming

With my PhD submission getting closer this post discusses my experiences of getting the best out of the technology that I use and along with this finding the perfect sunglasses. You might think that PhD, sunglasses and technology don’t go together – I beg to differ.

With between 1 and 2 months until my proposed submission date writing is in full swing. I am finding myself spending 12 to 16 hours a day in front of my computer. This amount of screen time is challenging. While a good proportion of my ordinary working day is spent in front of a computer screen, I have strategies to make sure this amount of time is manageable. In this post I will explain why the writing up period is particularly difficult, give an overview of the technology I use and then reflect on strategies associated with the use of this.

For those who have not read my previous posts I suggest that you read the section called my vision. This will give you an insight into how I see the world and some challenges which reading, writing and the environment around me bring.Until recently I have been using assistive technology with some success. I have a MacbookPro and up until the end of last year used ZoomText and Dragon Dictate. On contacting the developers around some issues with stability of both applications on Apple hardware I was informed that both of these applications are no longer supported on OSX.

For those of you who do not know these applications, ZoomText enlarges the screen using an overlay system and offers speech of the text that is on the screen. Dragon is voice recognition software which allows you to dictate what you are writing. While Apple offers accessibility options as a part of their operating system that replaces most of the functions of these applications, there are certain aspects which are not as advanced in the accessibility features built into OSX.

As I have monocular vision with multiple complications this means that my sighted eye does double duty and gets “tired”. The term tired has multiple meanings, for example, my vision becomes more blurred as the day goes on and the muscles around my eye hurt. The glare from the computer screen becomes more irritating, and any fluorescent light causes a hazy environment with bigger halos around lights. The extra reading with my PhD has exacerbated the “tired eyes” to the extent that at the end of the day I read by the shape of words which makes proofreading a long and drawn out process. Furthermore, these symptoms cross over into everyday life, and I have found myself walking along a corridor with colleagues and walking into a door frame then tripping on a ledge.

On beginning my PhD I somehow overlooked the fact that undertaking this research meant more reading. In hindsight I was so enthusiastic about my topic that I didn’t even think about reading and writing but now reality has set in. Dragon would be particularly useful at this moment in time as I am writing up results and discussion and those who know me well, will also know that my grammar and spelling need a little polishing at the best of times. When using Dragon the voice recognition removes many of the spelling errors which is one less stress making writing and proofreading easier with less eyestrain.

One of the strategies I have been using to cut the glare is to wear fit-over glasses on top my reading glasses that filter the light making the screen and fluorescent lights less of a problem. Until I extended my time in front of the computer these worked very well. However, these glasses are not the best fit and finding others that meet the requirement (64% amber that fit over reading glasses) in NZ is near impossible. The more I wear these fit over the more the frame presses on my face causing skin irritation and blistering. As a result, I have been trying to get some clip-on glasses of this, but unfortunately, I have been unable to locate these in NZ. I have been able to find what I am looking for overseas but the providers often do not list the percent of light they let in making selection of the right clip-on difficult when using services such as AliExpress.

One positive thing to come out of wearing the over the top glasses for glare is that I am no longer embarrassed to wear sunglasses inside and I have expanded my range of sunglasses to cut glare to a light grey for indoors and a dark grey for outdoors. The only drawback of these is that they are non-prescription. However, they work well when I do not need to see details.In my research into sunglasses I have located a company that makes prescription wrap around sunglasses that fit snugly around my face cutting a lot of the glare. Even better these are polarized and available in progressive or bifocal glasses. The company which makes these Maui Jim is based in Hawaii and run their own lab to produce the prescription lenses. The frame which works best for me is called the Ho’okipa which are amazing to wear.

Another strategy that I use is to enable the speech on my laptop, but instead of having the computer read the entire screen I select the text that I want to read and use a key combination to start or stop the reading. This method means that I can target the information that I want read rather than waiting to hear the portion of the whole screen. The speech function is particularly useful in proofreading as it means that even if I am reading using the shape of the word there as an alternative audible backup which has proved invaluable thus far.

I hope that this post has given some insight, tips or tricks in both studying with a vision impairment and the importance of selecting the appropriate sunglasses.

How I see it … improving my work environment

In my previous blog post asking for assistance was discussed.  This post will explain why anatomical irregularities in my eye exacerbate glare and how this affects my vision. After this, in the hope of helping others, I will describe some of the changes I have made to my work environment to manage glare.

After a cataract removal, I became more sensitive to light and glare. Even though I was aware that glare may be a temporary side effect the extra light exacerbated some existing problems in my eye causing permanent issues with glare and halos around all light sources regardless of the time of day.

Previously, an episode of acute angle closure (glaucoma) that would not respond to medications meant that I needed to have an iridotomy to equalise the pressure between the anterior (front) and posterior (back) chamber of my eye. While the procedure saved my residual vision, it left a permanent hole in my iris. Due to the position of the iridotomy and the shape of my eye, extra light enters through the iridotomy and causes flaring inside my eye (imagine a flare of light in a photograph or movie).

When I look straight ahead, upward or into the distance, the extra light in my eye causes a band of glare that distorts what I see. This usually means that the majority of my visual field is covered with bright patches. Imagine looking through a dirty window with a bright light shining through it directly into your eye with only a small segment at the bottom of your visual field that is clear.

A side effect of the cataract surgery led to the need for a posterior-capsulotomy as my vision had become cloudy. I had previously had a vitrectomy which meant that the capsule could not be entirely detached, what this means is that in the upper left of my vision I see debris floating when I move my eyes or head. If an overhead light source is present, this causes a spinning flare of light which distorts my vision (imagine a disco ball spinning in your eye).

The first changes I made were to my work environment. My colleagues usually like to have a “window seat” or in other words a desk by a window. However, I want to be away from the glare which means being away from windows. I was fortunate to already have an interior office which had kept the light consistent without glare.

When I returned to work after the posterior-capsulotomy, I immediately found that the light above my desk caused a swirling flare of light each time I blinked. The flashes of light distracted me from my work, and I found that it took more time and concentration to achieve tasks. I worked for several weeks feeling more and more fatigued because of the extra effort to concentrate and ended up wearing a baseball cap in my office. While this cut the glare from the overhead light, it wasn’t the optimal solution as it made my visual field smaller.

One day I was asked by a colleague why I was wearing a hat inside, and he said, “why don’t you just get the light moved away from your desk?” I was lost for words (which is very unusual) as I had not even considered this as a possibility and it seemed like a far better solution than the baseball cap.  At my workplace, moving one light that is mounted in a ceiling panel is straightforward and was completed quickly.  This one change to the environment made a considerable difference. I was less fatigued, able to concentrate, work faster and achieve more.

I realised that subconsciously I had been trying to change myself in an attempt to keep the attention away from the difficulty I was having seeing my work.

On reflection, the reason I was changing myself rather than my environment was that I did not meet the criteria to be considered legally blind. However, I was having difficulty seeing with many of the side effects and problems that those who are legally blind have.  I needed to come to terms with the fact that my vision had deteriorated enough to impact my job.  However, Internally I felt like a fraud because I was having a light moved and engaging with other assistance provided by the blind foundation yet I was not considered legally blind.

Changing the position of the light in my office meant that colleagues began to ask why the light was moved, and I needed to come to start talking about vision impairment with colleagues.

Discussing my vision was difficult, and even today there are only a handful of colleagues that I discuss this with.  The critical breakthrough I made was to begin to describe the variability of my vision from day to day or room to room as well as the impact the environment has.  Furthermore, people started to respond more positively when I discussed the strategies I use.  For example, always walking on the right of another person, sitting with my back to windows and more.

I hope that the experiences that I have shared in this post assist others in similar situations.  The next post I will talk about finding the right pair of sunglasses (and yes there is sport wrap-around prescription sunglasses.

How I see it … asking for help!

This post will be a little different to my usual education related blog posts.  I have had some recent changes in my vision which have resulted in variable visual acuity and no longer being safe to drive a car.  I will talk about my vision changes, adaptations I have made and thoughts and feelings associated with this in upcoming blog posts in the hope that others will be able to learn from my experiences.

My name is Sally and you can find out more about me and my vision by clicking on the links in this sentence.  If you read the title of this post – “how I see it” you may think that sight and blindness are concrete or black and white in nature, in reality, this is far from the truth.

I have been on the boarder of the vision impaired world since I was a child.  At school I received assistance to read the blackboard and ordinary sized print – at this time corrective lenses were not advanced enough to correct my visual acuity enough to learn without these adaptations.   Around 20 years ago optometry had advanced enough to provide specialised contact lenses that would correct my vision so that I could drive.

Driving opened up a new way of life for me, in that, I could pursue a career as an emergency nurse, work in the ambulance service and spend a good deal of time volunteering in my community.

Around 8 years ago I noticed it becoming more difficult driving at night and as a consequence made the decision to stop working in the emergency department and in front line ambulance as night shifts in this area were a necessity that was not open for negotiation.  I moved into the education sector and as time passed I made the decision to completely stop driving at night.

In early 2017 I noticed some significant changes in my vision where my visual acuity was consistently below the level to drive.  I had a cataract removed which corrected some of my central visual acuity but in turn created other vision issues, for example, increased glare, floaters and “sparkles” (I call this static in my eye) and while colours were brighter the definition of objects in certain light decreased and distortion caused by my retinopathy became more prominent.  You can read more about the affect of these changes in the section called my vision.

Despite corrected vision, I had difficulty reading small print at work, was making mistakes in my reading and writing which colleagues were beginning to notice.  What I did not realise at this time was how tiring and stressful reading in particular had become.  When colleagues would ask how I was, I would say that I was tired, not linking this to my vision.  It was not until one of my friends pointed out “you are always tired, everyone is tired” that I began to make the link with vision changes.   I came to realise blind spots and distortion were more obvious in close up work and my eyes needed to work harder close up to compensate whereas at a distance my brain found it easier to fill in the gaps.

On reflection this was a cycle, I would make mistakes and be hard on myself, colleagues would notice mistakes, mention them and I would be hard on myself again repeating the cycle.  At this point, I did not meet the criteria published in the health industry to be considered vision impaired, although I was experiencing many of the issues associated with vision impairment for example, monocular vision, retinopathy, glaucoma and associated side effects.

This made me question myself, for example, am I imagining vision changes?  Each time I felt my vision changed, I visited my optician, we went through eye testing, at times we came up with changes to my prescription at other times we did not.  I went through trying different types of glasses, progressive, bifocal, plain, tinted and different makes of lenses in an attempt to improve my acuity.  The result was headaches, eye pain, nausea, frustration and many sets of glasses, different types of contact lenses (including occlusive ones for glare) and a rather large bill of over $4500 one year on glasses alone.  Unfortunately there was no significant improvement.  The lesson I learned from this was, that although it is frustrating my vision is variable, one day things will be easy to see and another they will not and although I did not realise this at the time, accepting this variability was the key.

I was left feeling unsure where I fitted into society, my visual acuity was not bad enough to be considered vision impaired and not good enough to function without adaptation.  There seemed to be no place in society for someone in-between normal vision and being considered “blind”.  My mindset at this time would not allow me to consider the learning opportunity around vision impairment that this gap provided (to be discussed in future blog posts).

In healthcare we talk about functional assessment, however, all of the documentation I could find online as well as information via opticians and specialists seemed to rely on the measurement of visual acuity to define vision impairment and therefore the entitlement to any vision related support.   One of my biggest fears is “failure”, interestingly, what constitutes “failure” seems to be a moving target.  At this time, I saw asking for help as a sign of “failure” as I did not fit into the mould of someone who was entitled to assistance.  This left me feeling even more “in-between” and excluded from both the sighted and vision impaired communities.

After a frustrating day, full of reading small print and making mistakes at work, I self referred myself to the Blind Foundation asking for assistance, I explained the situation and how I did not fit the criteria opticians and specialist advised but was having many of the issues associated with my eye conditions that make functioning in my workplace difficult.  

To my surprise, after providing appropriate documentation and my own account of difficulties by email, even though my central left visual acuity was OK the effects of my eye conditions with reduced visual field meant that I could utilise the Blind Foundation services after all.

Future blog posts will outline my journey in living with, adapting to and accepting the “in-between”.