The more I ponder, the more I realise that kindness is really everything. I haven't just been pondering; it's been the defining theme of the last two weeks, demonstrated in such inescapable practical demonstrations that I couldn't help but become fully aware of the power of kindness and the comparative effects when it is lacking.
For those of you that don't know, I've had a recent spell in hospital. Many aspects of hospital life and the treatment I was undergoing can be overwhelming for anybody. Patients in a hospital environment are by definition extremely vulnerable. They are in a foreign sensory and social environment, the relationship is unequal in terms of physical power, knowledge and social power. Emotions are already stretched by being ill. Control is taken away, routines are different, treatments are given abruptly and the degree of explanation and processing time varies from professional to professional. For people with autism, whose anxiety levels are already elevated and processing times longer, and who depend on their familiar routines and sensory environment to remain regulated, these changes can be even more challenging.
More to come on that in my post about experiencing hospital as an autistic adult. What I want to talk about here is how these effects can be mitigated. Why, for example, I went to bed calm and hopeful and had the best night's sleep I'd had in weeks directly after a whirlwind of unexpected activity and two very traumatic procedures, yet two nights later after an uneventful day I cried myself to sleep feeling alone, scared and vulnerable. The thing that I've found is that although there are certain aspects about being in hospital that cannot be changed, the experience can be utterly transformed by the attitudes of those around.
It is all down to kindness.
My first few days in hospital were saved by the kindness of three individuals in particular, though others helped too (not to mention my army of Peggies who rallied round like nothing I have seen!). A nurse, a cleaner and a student nurse were the three people that made those first few days bearable when everything was foreign and overwhelming. They showed me that patient care has little to do with your job title or pay grade and everything to do with your nature and approach to interactions. Gentleness, patience, attention to details and the unspoken. Acceptance and compassion. Time, in a hectic environment.
As the days passed, I witnessed both sides of this countless times both for myself and the others on the ward. I wanted to cry for people when they were misunderstood or not given the time of day. Each time you could see the misery when faced with unsympathetic "care". The decline in capacity to try making progress, to get needs met, to be positive. The frustration with themselves at not being a good enough patient. The increase in resignation, acceptance of being in pain or discomfort or doing without the things they wanted or needed or their questions answered. I rejoiced inwardly when true care was shown. When patients and staff laughed and chatted. When dignity and independence were maintained, when needs were able to be expressed and treatments were positively engaged with.
My time here has brought home the discussions around mental wellbeing, particularly when caring for and working with people with complex and profound needs, that I introduced after Joanna Grace's Sensory Engagement for Mental Wellbeing training (I was sure I'd blogged about that but now can't find it!). Much as I have always been convinced of the paramount importance of promoting ways to support wellbeing when people have complex needs and require medical and personal care, I feel I have a new understanding through my recent lived experience. I am painfully aware that mine is just a tiny taste of what many others experience: I have still been independent in personal care and can largely access mainstream communication methods. But I now have a glimpse into the what it really feels like - the real internal effects of the complete vulnerability of being in hospital/being cared for and I hope never to forget some of the scariest experiences of my life.
What I hope in equal measure is to use this experience to the best of my ability as I become well, to champion ever more a true caring approach, to try and explain why it is just non-negotiable, and to try and lead by an ever-self-questioning example. I will share far and wide the stories of late night hot chocolate, of facilitating a terrified person to do something they thought impossible, of thoughtfulness, noticing, and just a spare second in a busy day. I will get better so that I can pass on the kindness I have received, because I know. I know what it can do.
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