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.

How I see it …. bursting bubbles?

After two weeks in lockdown to prevent the spread of COVID-19, I have left my home a total of three times.

Once to pick up a prescription and once to buy vegetables and once to go for a walk. In these times, I have come closer than 2m to three people who are outside of my isolation “bubble”, and in all cases, they were wearing some form of PPE.

While the process of isolation is a change to the life I have become used to there are positive aspects, for example, I can, for the most part, work from home. My work has been less interrupted and at times, more productive. At home, there is also less traffic noise at night which means getting to sleep is easier.

Socially we have adapted, we now have virtual coffee, virtual drinks and today a virtual afternoon tea for a staff member who is leaving. A further example of adaptation is related to grocery shopping. Instead of more frequent visits to the supermarket, I find myself waiting up until midnight to get delivery slots for groceries instead of same-day order and delivery before lockdown. Even though ordering over a week in advance is a new thing for me, it is not a big problem.

Overall, I would consider myself pretty resilient, a problem solver and someone who strives to make the best of most situations and logistically isolation has not been as hard as I expected it to be. However, I did underestimate the emotional toll of loneliness, uncertainty, fear and loss of family contact.

My isolation bubble is small and consists of myself and a flatmate. My family have two other bubbles in NZ. The first is my mother and brother (who also have the same genetic respiratory condition). The second is my father, who is in a bubble of his own with Hospice staff.

Today my morals were challenged. The hospice Doctor discussed the fact that I could visit my father in his last hours which could be soon. Currently, the COVID-19 lockdown means no visitors other than compassionate at the end of life.

While it will be fantastic to spend time with Dad, the context is not the best. Over the last few weeks, I have been finding not seeing him or helping with his care very challenging, but this is with the knowledge that in breaking the rules, I could cause harm to others.

The dilemma I face is the safety of others versus my own and my father’s desire. Just how many bubbles do I burst to spend time with him versus the risk of harm?

Having low vision means that I can not drive. For travel, there are usually other means, such as rideshare, taxi, busses, friends and more but in lockdown, options are more limited by availability, cost and time.

There are a lot of things to weigh up. I really would like to see my father, just as he would like to spend time with me. However, there are other factors in play, such as cost, time, emotions, lockdown, the potential spread of disease, and putting others at risk.

As a nurse, and personally helping others is important, this includes my father and the others I may encounter. In lockdown, helping myself and my father means not assisting others, in other words, both options are mutually exclusive.

My father is in a hospice that is 35 minutes drive from my house. It would take me 3 to 4 busses and at least 1 hour 35 minutes weekdays. In taking this travel option I would potentially burst at least 5 bubbles (not including other passengers). Taxi companies have quoted around $220 for a 35 minute trip with three bubbles burst (mine, the driver, my father).

Asking my brother to take me is an option; however, his car has no warrant and registration, and the local testing station is only open for essential vehicles making this a less viable option. While there may be compassionate grounds around the warrant and registration, this is a risk my brother is not willing to take. It would also burst three bubbles.

Typically, organisations such as Hospice, Cancer Foundation and Blind and Low Vision may have volunteer drivers for visits like this. However, in lockdown, these options are not available.

What I have come to realise is that no matter what option I take here, there is a cost whether it be timing (e.g. the time it takes me to get to hospice to see Dad in his last hours), financial (the price of a taxi), emotional (not seeing Dad or putting others at risk) or risking spreading COVID-19, travelling outside of my local area (breaking the law).

What writing this post has reminded me is one of my personal and professional values is around showing compassion for those around me and myself when we are all challenged by the world that we live in.

How I see it … Seasons

I realised today that it had been quite some time now since I wrote a blog post. While, there have been a number of family issues that have needed my attention over the last few months, the beauty of the summer is noteworthy.

Takapuna Beach from the boat ramp.

What struck me today was the impact of the seasons on my life. For example, summer has been fantastic, it is lighter for longer each day, and there is more time, the weather is better, being outside is much more enjoyable, and in this environment, I feel much more relaxed.

Trees in bloom at Milford Shopping Centre.

The reason that I noticed this so much today was that it appeared to get darker earlier than it has lately, which made getting home from work more challenging.

Recent changes in my vision mean that too much light often decreases my ability to see detail; however, this is usually alleviated by wearing sunglasses, a hat or facing away from the light. What I had forgotten was the other extreme, at dusk and night where the brightness decreases, taking away the detail and the halo and flaring effect of light coupled with the glare.

Over summer, the impact of this was minimal, and I rarely needed to use my cane as it was light for longer. My confidence in getting around had grown, and there were even a couple of times I thought to myself that I was confident and perhaps safe enough to drive again (although this isn’t an option as my visual acuity does not legally allow this).

What this illustrated is just how much of an impact the environment can have on the quality of life. In particular, for me around mobility and therefore, independence.

I believe that noticing this phenomenon is worthwhile as in the moment (winter) when getting around is more complicated, it allows more natural separation of what is within my sphere of influence and what is not.

… And just because I can, I have added a photo of my cat Katie (2005-2020) that I took several weeks ago.