Dear Lewy, this blog's first post could only be dedicated to you, who came in our lives, silently, almost eight years ago.
We often read that, on average, you need just of seven or eight years to accomplish your mission. Probably when we noticed it, you were already among us for a long time. Your presence at the beginning was discrete and not too intrusive, but it has slowly and surely take our space, day after day, as the water that drip and dig the rock. Now you have completely revolutionized our lives, you have not saved anything for Emma, you literally demolished her, a piece at a time, you have consumed her, even if she fought against you with each cell of her body. We know that you're about to get to the end, you're going to take her away, even if you'll never go away, because in a different way, you rooted in our heart, mind and soul.
The experience of you is a dive in the most lively pain, it' s a daily torment that puts each of us in front of apiercing sense of impotence.
In your fierce cruelty, however we acknowledge you to have been an instrument of truth, because by your arrival, you really made everything clearer outside and inside us.
You forced us to embark on an inner journey that we might never have done. We would have reach the awareness of so many things in a different way, but we want to see something good in you, so we recognize that you have given us an opportunity for growth.
We also realized that many more people we could imagine are dealing every day with the forced cohabitation that has touched us with you. Lewy & co., you are a nice group. Your sister is the most well-known Alzheimer's disease, but there is also the frontotemporal dementia, the vascular one, and all those neurodegenerative diseases that, although notorious for the terrible motor symptoms, are often associated with cognitive difficulties and thought disturbances as Parkinson's, Huntington's, ALS, and so on. All of you forced people to experiment a gradual, inexorable deterioration and to attend the slow consumption of a life.
There is no way out and more you seek it, more you can't find, it, and you'll lost yourself in a dense network of pain and despair.
We well know despair andloneliness and, for this reason, we think that the only way to tackle this kind of situations is to rely on a support network.
Noi l’abbiamo cercata e non abbiamo trovato molto, perché purtroppo è davvero complesso il mondo che gira intorno a queste situazioni, ma abbiamo comunque scoperto delle realtà che ci hanno dato le prime spinte per risollevarci in momenti particolarmente difficili del nostro percorso, come alcuni gruppi facebook che ci hanno dato l’opportunità di confrontarci con altre persone che vivono la nostra stessa situazione e, soprattutto, il CREAMCAFE, where meetings are organized to deal in different ways with cognitive disorders, and to offer support to sufferers and caregivers.
Thanks to your presence, we have also discovered we didn't really know people around us, because it's useless to deny it, but it is only in the difficulty that we know true feelings and real nature of who we have beside; when everything goes well, it's easy to stay. So we have learned to put aside expectations, to accept that there are souls with whom it's not possible to confront, we have learned to accept that, sometimes, to walk away is the only solution. There is also, however, who has not abandoned us, or even who has been unexpectedly present in the most difficult moment of our lives. So you gave us the possibility to trust in others, too.
Dear Lewy, you're sealed in our lives and you have changed them, we would have done without you in our passage on this earth, but anyway thank you unwanted guest, because you have made us understand who we are and where we want to go.
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