All of us have expectations about life and the world around us. Some are societal and cultural, some we learn from friends and family, some we figure out for ourselves. We grow up with ideas about what life ‘should’ include and be like. For example, you might have grown up feeling it is the norm to get married and have a family. You might have grown up with expectations around what makes a good career and the importance of financial stability.
When life meets the expectations we have developed, we feel secure, in control, even. This is one of the reasons loss can be so devastating: it is life veering from the script, and we don’t have the right lines. So not only is there grief for what is gone, there’s also fear for what might be to come in the future.
The experience of sight loss is what we call a ‘nonfinite loss’ in that it may occur as a single event, or a gradual change, but the repercussions are ongoing – and may interrupt or derail what you thought your life would be. Even if you are sight impaired from birth, you still might have absorbed ideas about a so-called ideal life and experience grief for the bits that seem to be missing from that for you. In exactly the same way as a child who grows up without a parent still feels a sense of loss, even though they never knew any different, your feelings of grief are totally valid.
In a very special in-person meeting in London on Saturday, members of Eyematter new and old generously shared their experiences of the life expected versus the life lived now. Everyone is at a different point in their sight loss journey but it became apparent that it’s possible, in fact it’s important, to hold two conditions at once: on the one hand, acknowledging the very real grief for the life you might have lived, and on the other, enjoying the positive aspects of the life you live now – including experiences that would not have happened without sight loss (like joining Eyematter!)
As well as acknowledging the loss and focusing on the positive, what else can you do to help with nonfinite grief?
Embrace adaptation – let go of the concept of ‘acceptance’; it’s loaded with pressure and implies you can reach some sort of zen state with your sight loss and that means you have somehow reached the end of your grieving process. If that works for you, wonderful, but for the vast majority, life is more nuanced than that and it’s likely that learning to continually adapt is a more realistic goal. You can read an earlier blog on the cycle of adaptation here.
Face your fears and hold onto hope – you may need to redefine what hope means for you in a world that includes sight loss. There may be some hopes you need to let go of and mourn, but the chance are some new ones can take their place. Equally, maybe once you address what your fears really are, you’ll find that the barriers are only in your mind (or worse, in the perception of others). This is one of those areas where peer support can be so inspiring.
Ask yourself what are your hopes right now? If you always imagined a life full of travel, sport, creative pursuits, or socialising – there’s no reason these can’t still be a part of your experience, it just means they take a slightly different form.
Happy hoping! Until next time, JW