How I see it … there is not a concrete question, answer or solution

I want to reflect on a couple of things in this post. Over the years, I have posted a lot about sight loss and reached a point where my vision was pretty stable at 10 degrees. Until it wasn’t, I would like to reflect on some of the experiences I have been unable to express in the hope that they will assist others on their journey.

As a predominantly quantitative researcher and science geek, who thrives on neat, orderly processes and streamlining systems, I gravitate to the concrete, proving something is possible, and look for solutions. Over the years as a teacher, nurse, computer scientist, I have learned to work more and more in the grey areas, particularly with my patients and students. However, I never really stop trying to find solutions.

This week the fact that science could no longer stop my sight from deteriorating sooner rather than later hit home yesterday. The hard-hitting moment started with a clinician’s comment about my Guide Dog, along the lines of you will need her even more now. With my clinician’s brain, I had somewhat guessed based on symptoms such as increased glare, seeing through what looks like dirty glasses continuously instead of the intermittently and the increase in variability of vision on a day to day basis made me think but not process what this meant.

The most recent symptom was any sort of detailed work on the weekend made work on Monday more challenging. However, it wasn’t until there were differences in three tests over more than three months that I believed my clinical resining. The words from an expert, “there is nothing more I can do scientifically to stop this”, made this more concrete yesterday rather than abstract and distant.

My frustration is that I have rarely found something I could not adapt to or find a solution for or be successful at or with. Modus operands have usually been to work harder, take more time, factor in transportation, and try and do better than those around me to compensate. Some examples include taking more time to complete tasks, embracing public transport, doing visual hobbies only in my holidays (e.g. painting), taking work home and finishing it there or spending over two years crocheting the blanket I planned to finish in one winter. Slowly I have been adapting all areas of my life subconsciously and until this month, this process has served me well. However, my brain isn’t filling the gaps as well as it used to and for that reason, if I overdo visual tasks, I am finding I need to stop, take a break and perhaps finish that task the next day. I have spent 11 years building a career and social life I love, yet to continue this, I need to account for visual fatigue in all I do, meaning giving up other things I value. It feels like robbing Peter to pay Paul.

On an emotional level, this is challenging and fatiguing in itself. I wonder if it is time for the world around me to adapt more to my needs rather than my continual focus on trying to fit the mould of societal expectations around life and identity. I have long been a supporter of advocacy and rights around disability and over the last year, become more vocal. However, I have found it easier to apply this principle to others and have concluded that I need to shift that focus to myself.

One of the catchphrases that floats around is to do things differently, which sounds easy when it rolls off the tongue, but change is not something that I and those around me find easy. One reflection in considering this is that things are challenging in the status quo and I recognise the need for change, but figuring out how to adapt what I do is something I can’t always do alone.

On reflection, I have known my vision would deteriorate, but it had always been something that was in the future. I had anticipated things would stay how they are where I have some useful sight until after I retire, at least. I have made considerable roads into acceptance of disability and vision impairment up until now, to the point that I consider myself blind (I do meet the MSD criteria as totally blind).

Until recently, those around me would have seen me as someone who couldn’t drive and stopped all of my extreme outdoor activities (diving, water-skiing, skiing and more), but other than using a cane, guide dog and large print and asking for an office away from windows, I just get things done.

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