How I see it …. a matter of perspective

I thought that I would continue along the theme of assumptions we make and judgements associated with these along with a narrative about resilience being a rollercoaster ride.

This reflection stemmed from an interaction with a healthcare professional today. I saw her with mild but relentless eye pain. She asked me how things were going and how my last specialist appointments went and about my MRI results. I relayed, the results, discussions and a plan of having eye surgery on the next available theatre slot for this (January) in an attempt to preserve my remaining vision. I proceeded to explain the surgery, risks, benefits and success rates related to my conditions as well as what I was putting in place to promote the best possible outcome based on the research I had read. For this, I got the label “science geek”. At the time this seemed like an excellent complement, but in hindsight, my response was rather superficial and detached.

When I got home, I recalled my blog post last week, where a member of the public told me I was “amazing” for managing to walk around a rubbish bin that was on the footpath. At the time, I was a little taken aback and quickly pushed this aside as something simple and applied own assumptions of what I considered amazing, such as getting my PhD, being published, loving my job and passing on my knowledge. 

This not only prompted me to analyse an earlier conversation with a healthcare professional but also made me rethink my reaction to the difference in perspective about success. 

The earlier conversation covered planning my needs post-surgery as I will not be able to see much (which will prolong the uncertainty around the success for some weeks after). In this conversation, I was asked what I needed help with. On face value, this question seems simple, however, even as an experienced nurse, I found that I wasn’t really sure what I would need. I could guess and as a result, kept unconsciously relating things back to how I see now and not what it will be like post the surgery. This included thoughts of I can do that, I don’t need help with that or someone might need assistance more, or there is always someone worse off, which are my go-to responses.

It wasn’t until she used more concrete terms and bluntly pointed out that she thought that I needed “urgent” referrals for daily tasks that I began to realise this wasn’t going to be as easy as I thought. Changing my mindset started with being asked the following two questions: 

  • Do you think you could make toast safely when you can’t see the toaster?
  • Have you ever made a cup of tea without any sight?

To both of these questions, I paused and then replied – “I don’t know”. It was not until this moment that I began to realised practice, tips, tricks and techniques were required before the need for them. As a nurse, it is logical to forward plan and assist others to prepare for their recovery as much as possible. However, applying this to myself as a patient who had not previously experienced total blindness was not as easy as I initially thought.

She then asked about how I would get to followup appointments and even after the above realisation my automatic problem-solving response was, I will get a taxi. Then she asked me if I had thought about how I would get into the building from the taxi on my own with no vision? To which my automatic response was that I already use a long cane and will be OK, but the truth was that I had not thought about it until that moment. What had not sunk in was that I use the cane with some vision, not with no vision, and these were two different experiences requiring different approaches.

Perspective

At this point, I noticed my thinking was as a nurse, not a patient. My mind was speeding through multiple potential problems and analysing these to find the best solution. As someone who is usually independent and confident in what I do, this conversation and analysis made small tasks such as making toast uncertain and seem impossible.

In fact, a more robust approach would have been, turn off “nurse mode” and slow down, start asking questions to gain a better understanding of what to expect and then formulate a plan. 

Yes, Shayne – if you ever read this – we discussed this just today in another context.

Writing this has shown me that we all make different assumptions and what we do with these is the important part. Perhaps I will now need to start changing my focus so that the smaller tasks such as making toast and navigating a rubbish bin on the footpath are seen as a success.

How I see it … what we do with our assumptions

I was reminded several times in the last week, just how our assumptions can influence and impact others. There are two examples of this I would like to discuss. The first was challenging my own beliefs when I went to a Christmas Concert featuring the Auckland Symphony Orchestra among other performers. The second was the assumptions of others.

At a Christmas Concert on the weekend, I found myself wearing sunglasses when I usually would not have needed to. It made me recall some assumptions I made as a child of around 13 years old. I typically associated a blind person as someone who could not see anything, wore boxy blacked-out glasses indoors, at night as well as outdoors and needed to tap around a white cane and had to have help with “everything”. Over the years, I had learned that this assumption was not the norm, however, at times, thoughts creep back in, and I need to remind myself that my assumptions are not necessarily generalisable. This experience caused me to reflect on why I was wearing sunglasses when I was wearing them and how much these helped me.

Two of my multiple pairs of sunglasses.

What isn’t apparent in my story so far is that I was wearing my sunglasses at night when it was dark. There was a method to my madness in this instance, as the glare from the oncoming traffic, street lights and concert lighting coupled with a crowd of 3000 – 5000 people was a little overwhelming, and the sunglasses made visual stimuli and using my vision manageable.

My realisation was that I was “just like” the assumption my 13-year-old self made, which was slightly confronting and made me consider how I wanted to be perceived. Which is a confident, independent and well rounded person who just gets on with what she needs to do without brining attention to herself.

This led me to reflect on how I wanted to be perceived and why I was so afraid of being recognised as a blind (or low vision) – or in a nutshell as different. I came to the conculsion that this was because of societal perception of blindness as a deficit (as an aside, I am an academic who is struggling not to link this blog post with a theorist, model or research but continue it as an informative story of life). In true academic fashion, this led to more questions than answers, so I decided to present the beginning of my list:

  • Is low vision actually a bad thing?
  • Why is it often depcted in that manner?
  • Why do I often believe it is “bad”?
  • How much has society had to do with this assumption?
  • How and why did society come to those conclusions?
  • Why do I revert to believeing these societal norms?

I didn’t want to be known as the person with “low vision” or the person who “can’t see” because this mindset is one of a deficit, where society seems to hold different standards.

For now, I will park the theoretical component of these questions and explain how these concepts relate to my experiences. Over the last six months, in particular, I have noticed my visual field getting smaller and have not been seeing some things around me. Interestingly, I feel I have been conditioned not to let those around me know or help when I am finding things difficult and get on with things myself. For example, in a crowded meeting today people got up and moved towards the door leaving a wake of scattered chairs which i promptly fell over. My response was to get up and continue with my day and fly under the radar.

A prime example of lower standards occurred when I was walking to work on Friday (rubbish collection day). There are usually multiple wheelie bins on the footpath. While these make annoying obstacles (and I need my sunglasses to even see them) they are a necessity of life in the community. As a response, I tend to use my cane more to determine how far away they are. During my walk I was passed by a woman and smiled, saying good morning and kept on walking. About 20 metres down the road, she stopped me and said with conviction: “I think you are amazing” going on to say “I watched you get round those rubbish bins … you are just amazing”. I didn’t know how to respond and opted to say thank you and kept walking.

This person had made a few assumptions in her statements, and I was left feeling that I was being judged for my low vision (I do acknowledge my assumption here). I thought about this for the rest of my walk to work, and it cemented how much that assumptions that are prevalent in society can influence your own self-perception and in-turn self-esteem. I would like to think that I am amazing for what I contribute to the community rather than navigating around a rubbish bin. While I measure myself against my contributions to society as a person, academic, nurse, volunteering, project work and as a leader in my own right, it would appear based on assumptions others may have much lower standards.

Tattoo with binary code that says "I am enough"

This comes full circle to how I respond to these assumptions, in other words, what I can control and what I can not. I have concluded that all I can control is how I choose to perceive myself and decide to promote myself to the world. I would like to be honest and acknowledge that my response to this is that self-perception and esteem is impacted societal assumptions, and I often set myself very high expectations to counterbalance the deficit model described above.

To remind me of the influence of society, I recently got a tattoo where I can carry a message to myself as a constant reminder. I will let the readers decode the tattoo, be aware that I have left the first four digits off of each row.

How I see it … the changing landscape

Today I would like to talk about the changing landscape both figuratively and literally.

After finishing a long day at work today I had three events to attend for professional organizations I support related to my job.

Two of these were in the city. I do go to the city campus of my workplace at times, however, the campus and vicinity is familiar and I don’t generally venture far from it.

Generally I’m fairly confident navigating my way around, finding where I need to go and getting myself there. However today was a very different and confronting experience.

It was the first time I had been to this particular area in the city for around 18 months. The landscape had completely changed.

Over the last six months my visual field has decreased significantly (you can read about this in my previous post). While I knew the area I was in, it was very unfamiliar. I had been there before it was when I had much better vision and in my mind I expected that the experience of this area and the layout would be very similar to the last time.

This expectation was far from truth and my experience was considerably different. I knew where I needed to go but getting there was challenging and physically and emotionally exhausting.

Imagine when you are tired yet your environment continues to overstimulate you. You try to track everything around you to ensure you remain safe while navigating with one eye closed and looking through a cardboard tube with the other.

One thing that particularly frightened me was the addition of painted bike and scooter lanes (on the footpath). Where people and fast moving vehicles darted unexpectedly to avoid each other. I tried to keep track of everything around me but found so over stimulating and visually challenging that I just had to stop for a while before setting off again.

To combat this, most of the time I navigate my environment systematically but today this approach did not work.

I finally arrived where I was meeting friends and colleagues, I entered and walked the perimeter of the rooms to find my friends. I couldn’t see any of them. I did another circuit and decided to go outside and call, no answer, texted and waited 15 minutes. it was cold and windy outside so I decided to find somewhere warm, get a drink and wait fir the next function to start.

It struck me just how isolating restricted vision can be – particularly when technology can’t help. What began an easy adventure had become challenging because of the changes in my vision.

I eventually did manage to meet my friends, they were sitting in one of the rooms but I did not see them despite walking past. I couldn’t express just how fatigued I was just getting there and cried when I found them.

What this has reminded me of three things. Firstly, the need to conserve the use of my vision. Secondly, the expectations I have of myself and my ability to thrive in busy, crowded and unfamiliar environments might need to change. Lastly, that these changes aren’t a failure but a new beginning.

How I see it … the new normal !?! (Version two)

A reader reminded me that I had not posted a blog entry recently. When reflecting on what I wanted to write about, I decided to start with just how vital noticing things and looking after yourself is when you often care for others.

In the time between entries, I have found it very easy to go on to the next task/thing/thought without taking note of what I need. Some might respond that this is a typical nurse, woman, academic, and you may be somewhat right. I challenge society to rethink the social pressures which influence this mindset while challenging those that are a product of it to reconsider their priorities.

Reflecting on the last six months made me realise just how enormous some of the life events have been and take a step back to regroup. As an example, this year has included caring for a parent, losing a parent, probate, clearing and selling a house not to mention falling out with family members when trying to do what a will asked. Not to mention having more surgery and working through a worldwide pandemic (and all that brings).

The life event I want to talk about is a rapid visual field loss. You may already know that my right eye has had no usable vision since I skied into a rock in the 1990s. At that time, I had multiple retina detachments in my right eye as well as several retina tears in my left eye, and for many years the resulting vision was considered the “normal” and more or less “stable” for me.

In April 2020, I noticed some small intermittent visual anomalies, such as increased light sensitivity, ghosting of images and grey areas. I put this down to being tired and my brain not filling these in as well as it used to. I kept up my regular screening and just kept on going with all I had to achieve. After a small change in my field, I was diagnosed with normal-tension glaucoma and started taking eye drops to control this. At this point, the visual field in my left eye was almost normal; I kept on thinking things were well controlled.

Most people seem to think of deteriorating vision in two extremes, for example, vision becoming blurry and needing new glasses (annoying but manageable until you get a better prescription) or seeing nothing at all. While this perception could be accurate in some instances, there is a lot of variation between these that often does not get discussed or goes unnoticed. What I have learned is that one day is always different from the next, and one small thing, such as bright sunlight or overcast day can make a huge difference to how I experience the world.

I am going to describe my experience of rapid visual field loss for two reasons. First, if I had noticed or insisted sooner, I may have more field left, and secondly, it may help others who have a similar experience.

Over the last six months, I have noticed my reading getting slower and in particular, becoming more tiring and as an academic reading is a large part of my job. Without noticing, I compensated by spreading out my marking load across the time I had and only marking about 3 – 5 essays a day. This meant I did not overdo the reading on any one day and resolved the severe headaches, neck pain, nausea and vomiting overdoing reading/eyestrain causes. I did not explain the extent of this at work as previous responses from my peers had things like “we are all tired”, “I wear glasses and can’t see it’s not that bad” or “another headache?”.

Being a computer geek with a PhD in computing, some might ask why I didn’t get the computer to read it aloud. This is for another story about the inaccessibility of some software solutions which use overlays to allow drag and drop that does not work with screen reading software.

The other things I have noticed on reflection that should have been a sign were: more injuries from tripping over such as, many bruises, a broken-toe, back, neck and shoulder injuries, actively avoiding crowded places like, supermarkets, shopping malls, parks or busy traffic areas or any place where there was any unpredictable movement around me. To compensate, I always chose to walk to the right and slightly behind my peers so I could keep them in my field of view and know to walk where they did to avoid tripping on things.

It is very hard to explain how I see compared with how someone else sees when I don’t know different. My visual is shown in the photographs below – this is my left eye (central 30 degrees) with darker areas representing field loss. The photo on the left is six months ago, and the right was around a week ago. I did not realise just how much had changed until putting these two photos side by side last week.

In trying to explain this to a friend, I went looking for ways to simulate and found the following simulator. I typed in my information (visual acuity, mapped out my visual field test and added glare sensitivity and floaters to come up with the photograph below.

The photograph below is a simulation of what I see. Kudos to Dr Peter Jones at the University College London for his initial development of OpenSimVis with an online prototype allows you to simulate visual field tests overlaying a photograph while adding glare and other symptoms.

 

I think the biggest realisation in all of the reflection is how much harder I need to work to see things than I used to which all takes time, energy and brainpower. The new normal is going to include tripping over, taking longer to do some things and managing fatigue in a dynamic environment.

It also involves acknowledging that these things will impact every other aspect of my life, and it is how I view this and manage it that is the most important. I suspect taking the time to focus on this / myself will make all other aspects of my life – like my job more manageable.