I’ve been talking, thinking, discovering and comparing.
There are injured here whose accident occurred 16, 20 and more years ago. They were in their late teens, their parents in their thirties, when disaster struck. Some have been telling me that their adult children receive up to 15-18 hours of therapy every week and that they have been regulars at different therapy centres for many years. Those injured have clearly benefitted from all that support, and have regained some level of independence but none of them can live independently. Some are living with their families, some are being looked after around the clock by paid carers.
I have been thinking back to 2015, when Pádraig came here for the first time. He was on PEG nutrition and only eating small amounts of pureed food. He had started to take some liquids orally, but just very small amounts. One of the first things that happened here was that we were told to stop PEG nutrition. What followed were what we considered to be huge steps forward. No miracles, but very significant steps forward, giving us high hopes. I thought that with the right support Pádraig could recover maybe not all of his independence but a high degree, within a few years.
Over the past 3, 4 years – and that is still a really short time apparently, given Pádraig’s injuries – Pádraig has been making really significant progress, but his progress happens (mostly) in small steps and takes time, a lot of effort and persistence. Staying ambitious, pushing the boundaries, inventing new approaches, staying fresh, recognising and celebrating progress — all of this becomes more challenging as the years pass. Giving in, surrendering to routine, accepting things as they are, getting into a rut, becoming stale and drained of energy, staying sad — is like a honey trap, it sucks you in with the promise of a calm, less stressful life, slightly sedated almost, slowly but surely leading to the end of the line.
The families I am meeting here, those who have been through what we are going through, have adjusted their lives in slightly different ways. There are the ones who go along with their adult child, providing support wherever needed, but also letting go of them. There are others whose lives seem to have been taken over and absorbed by the care they provide to their family member. Hope for independence, self-determination seem to have disappeared. They all keep going, but it’s not always easy to see the spark, the enthusiasm, the energy that was there, no doubt, many years ago.
Systems originally created to provide support have morphed into systems that create dependencies and demand compliance; systems that are always right, never wrong; are self-preserving, self-centred. When change is needed, they take as their starting point the status quo.
Einstein has defined insanity as “doing the same thing over and over again and expecting different results”. If Einstein is right, we’re accepting insanity as the norm.
There is nothing new about this thought, really. The real problem is: what, if anything, will I do about it? Without going insane myself?