Pádraig is doing great work. Here is an example. It looks like something he has done before: pushing and pulling an object away and towards him. In this case a small step stool.


What is different here is that he is standing, not in his standing bed or a standing frame, but by himself and supported by therapists and myself. That difference is humongous. He has to keep his balance, check that his legs are in the right position and keep his upper body and hips in balance.

There was a time when what I wrote was what I was feeling, what was happening, what I was thinking. I didn’t think twice about it. I was living a life dominated by existential threats: practically loosing my home (for several years) from one day to the next when we went to Hamburg; seeing my family split up between countries; struggling to keep my job; and above all, a constant threat to Pádraig’s life.

Almost five years later, Pádraig’s health is relatively stable and improving (with constant uncertainties lurking in the background); going back to my work was made practically impossible; we are still travelling between countries; there has been another health scare in the family; relationships, emotions, energy levels, hopes, my positive outlook – all that and much more is constantly being tested; at the same time, all that gives me the strength to get me through difficult days and moments.

Over time, I have changed and changed what I am writing about. There have been threats, comments, requests, or just views passed on to me nearly breaking my spirits. There has also been incredible encouragement and support. But I know that what I am writing is not as raw as it was, is a variation of reality, is lacking the despair, the passion, the fury, the ‘I’m beaten’-taste, the aggression, and the depression of my life. It’s sanitised, cleaned up, covered.