How I see it … getting to know the new normal

As humans we constantly adapt, evolve and problem solve on a daily basis and most of the time I find that I don’t even notice myself doing this. In life, more often than not, this ability is valued and considered an advantage.

Over the last several months there have been some changes to my sight and I thought discussing them here may assist others facing a similar situation.

I have come to realise that the everyday adaptations, problem solving and automatic response have needed to become more overt, deliberate, considered and planned rather than as hoc.

For example, getting groceries, picking up a prescription or popping out for something that I forgot had been an automatic part of everyday life. Now these tend to be a source of frustration due to the hidden costs such as, increased fatigue, increased expense and increase time to complete these.

In particular the increase in fatigue and headaches, an intolerance of bright light, crowds and anything that was moving around me makes these things challenging. As a result I subconsciously stopped going out, avoided shopping malls, bus stations and events. I only ventured out with people I trusted and when I did go out was exhausted and did not enjoy it at all.

One of my first responses to the fatigue was to reduce my volunteer work which has been a big part of my life for over 20 years. However in giving this up to reduce fatigue there is a payoff of loosing something I value and enjoy.

Initially I did not associate this with my decrease in visual field. When I did make the connection it was obvious that what used to be a ten minute drive to teach at a local ambulance station has now become either 3 to 4 busses, 2-3 hours or $20 taxi ride each way.

At work I started taking more regular breaks (away from the computer screen), changed my glasses (expensive), and worked even longer and harder to be what I considered “better” at everything I did.

At first I didn’t connect these things to a change in my sight but blamed working long hours (which is and was the case), getting older (also the case) and my own constant need to push myself to keep up with being needed and to help those around me (usually the case). In other words subconscious denial and more self inflicted stress.

I kept my regular specialist appointments but also noticed that my brain was not filling in the gaps (blind spots) as well as previously and I was noticing the distortions and blind spots which my brain usually managed to hide. Again, I blamed, fatigue and age. However, on my third visit to the specialist which showed the same thing as the previous two visits (a decrease in visual field, changes to my optic nerve) I started to accept these changes and make connections.

An unexpected outcome was that I realised was needing to hold my head in a different position to maximise my field of vision. Ordinarily this is not a problem, however the side effect of positioning my head differently to maximise my visual field is an increase in headaches, visual fatigue which ended up causing a pinched nerve in my neck with related numb and weaker dominant arm. To date I am yet to find a solution to this issue.

In response to the effect of glare I have begun to carry my sunglasses on a lanyard with me at all times and wear my sunglasses when I need them rather than when it is expected for people to wear sunglasses. This includes inside and last week for the first time in a staff meeting that was held in a particularly bright room. None of my colleagues mentioned this to me at all. However, I was incredibly self conscious, as I kept thinking about how in giving myself the ability to see the room and some facial expression of those around me I was decreasing the value of eye contact and facial expression for others by wearing my sunglasses. The internal conflict here, is who is more important – me or others? My upbringing, morals and values tell me that others are generally more important when there is something that I can do or change that can make things easier for them. However, I am finding that to survive I am needing to focus on myself and my needs above others which is necessary but in doing this I feel very uncomfortable.

People who I have known for a long time have told me that I am fiercely independent and generally very resilient considering the path that my life has taken. This is often seen as a positive trait, however, this life path has also lead me to feel that reliance on others is not an option in many instances. Therefore, if I give someone my trust it means a lot to me.

While I generally play well with others, my recent sight changes have meant that I have needed to begin to rely on and put more trust in those around me both socially and at work which is not natural to me and at times my hesitation may seem odd to outsiders. The upshot is, often I need help with something but feel incredibly uncomfortable asking and until recently have tended not to ask or ask indirectly as part of another issue. Becoming more comfortable with asking and making my needs known is a work in progress and something that I have set goals around but am yet to fully achieve.

While working through this, the most overpowering side effect is the physical and emotional fatigue that relearning to work, live and socialise with a different view (pun intended) brings. Last week I was finding managing the emotional side of sight loss difficult, on top of a particularly stressful month or so at work, sick parents and an inability to drive to help. It took one small action from another person to normalize the way I was feeling by acknowledging how hard it would be for her and in fact any person to juggle stressors I currently juggle with family and work, let alone vision changes for me to realize that I was taking on unrealistic expectations based on opinions from others who only understand the tip of the iceberg. The normalization of this was a complete reversal of the usual reaction of many, for example, suggesting I become more resilient puts a negative slant on this situation making it emotionally less acheivable. This has been a good reminder of the importance of acknowledgement without judgement, something I feel is a strength in my job but something I had not applied to my own situation.

I would like to say that this year (finishing my PhD and getting to know my sight changes) has been my most year difficult so far, however, who knows what is around the corner, which makes acknowledging this and moving on a with life a very important lesson for me.

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”.