During the Oogcongres on 9 November 2019 Prof Manu Keirse, professor emeritus in coping with loss, gave a lecture about ‘living loss’; loss as a consequence of an eye disorder that has no end.
According to Prof Manu Keirse ‘living loss’ is when you have to cope with your own disease process for many years. In connection with Usher Syndrome, this means that your partner or your child also has to cope with the consequences of your impairments caused by Usher Syndrome. Or if you as a parent have to take care of a child suffering from Usher Syndrome and you have to adjust your life again and again to the impairments of your child, and the impact this has on your family and the future.
“Loss that lasts the entire life, is permanent and rather increases or gradually leads to new losses.”
With the diagnosis for Usher Syndrome parents lose the normal development of their child, their expectations and their beliefs. This also holds for young people who are told about the diagnosis by their physician or their parents. For partners and children of a parent suffering from Usher Syndrome the expectations for the future and their roles within the family change as well.
Everyone responds to this in a different way: shocked, with disbelief or with anger, or by seeking distraction, by going into the survival mode, by searching for information or by finding it difficult to attach to the child. People can be stricken dumb or, on the contrary, go into the action mode. Loss affects the entire family. Children often mourn more indirectly and sometimes postpone their mourning. They can express themselves in various ways that are all ‘normal’: from withdrawing or regressive behaviour to psychosomatic complaints or, just the opposite, by showing great strength.
Suffering from Usher Syndrome is a living loss, it is not something that will wear off. During life, you will experience loss over and over again and you will have to cope with this. This is part of your life. Your eyesight has deteriorated (again), making something more difficult or even impossible. Your poor hearing will be of no help in compensating this loss. It also works the other way around, in that loss of hearing can have an effect on the eyesight, giving you a feeling that your eyes have seriously deteriorated as well. Every visit to an ophthalmologist and ENT specialist for a check can be highly confronting in that hearing and eyesight have deteriorated again.
Typically, the source of the sorrow remains and so the mourning will always be there. You continuously have to cope with loss. Recognition that this loss is there and is allowed to be there, now and in the future, may give you space to acknowledge your sorrow at moments that you need this and to contemplate this. People around you can best support you by listening and to recognise that this sorrow is there (again).
“Listen, listen and listen even more… This is of major importance. It enables you to properly respond to what the person experiencing this loss indicates.”
‘Living loss’ is the term introduced by Manu Keirse to indicate life-long mourning that you experience when you or a beloved is hit by a chronic disease or impairment. This is about sorrow that can come up any moment, expectedly or unexpectedly, and that may increase over the years.
The process of living loss is heavy and intense. Especially when at milestones you are again confronted with what your child cannot do yet or will never be able to do, when you notice that you have lost certain skills that you still had a year ago, when sorrow overcomes you or when you are fed up with everything.
However, living with a living loss is not only about experiencing loss. We also see that it is a process that can give strength. You become more creative in finding solutions, you get an enormous drive, you’ll be increasingly assertive and you can more enjoy the smaller things that are really important.
These are the two different sides of the process. We contemplate the sorrow, the fatigue, the anger, the fear and the heaviness on the one hand and the strength, humour, creativity, trust, love and joy of life on the other.
Source: ‘Helpen bij verlies en verdriet’ [Help with loss and sorrow] by Manu Keirse