How I see it … getting to know the new normal

As humans, we constantly adapt, evolve and problem-solve daily and most of the time, 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 realised 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 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 and intolerance of bright light, crowds, and anything moving around me make 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 losing something I value and enjoy.

Initially, I did not associate this with my decrease in the visual field. When I made the connection, it was obvious that what used to be a ten-minute drive to teach at a local ambulance station has 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 is 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 and noticed that my brain was not filling in the gaps (blind spots) previously. I was noticing the distortions and blind spots that 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 needed 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 numbness 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 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 giving myself the ability to see the room and some facial expressions 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 need to focus on myself and my needs above others which are necessary but in doing this, I feel very uncomfortable.

People I have known for a long time have told me that I am fiercely independent and generally very resilient considering the path 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 achieve fully.

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 found managing the emotional side of sight loss difficult, on top of a particularly stressful month 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 achievable. 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 want 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 with life a crucial lesson for me.

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