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 … #alttextforall campeign

Recently I have been involved with a new campaign created by Blind and Low Vision NZ. I am passionate about this cause as it something that I can relate to and have the opportunity to change in my role as a nurse, academic, geek and health informatics expert.

The alttextforall campaign is about making software and Internet services accessable for people who are blind or have low vision. During my PhD I worked with photographs and using the data in these and learned that photographs are not just pictorial representation but include hidden data that can be used in other ways. One of these ways is through alt text which is like a caption within a photograph. will be live until the end of October and is an online campaign that challenges Internet users, primarily businesses and social media uses to include alternitive texgt (alt text) in the photographs that they post so that people who use screen results came over what photographs include. The campeign website shows the background of #alttextforall, how to implement alt text in your photos online and outlines some of the services Blind and Low Vision NZ offers (the part which I was involved with).

There are number of videos but in the campaign, some of which show the impact of not having alt text for photographs others show her how easy it is to add it.

The main promotional video can be seen here: