What makes a person special? Is it what they do? I’ve always thought so. As long as I can remember I’ve wanted to be special. Actually, I don’t think that’s quite right; I think I’ve wanted to be thought of as special. I guess I’ve associated specialness with certain things that are done or are to be done. This has led me down a pathway of ‘doing’ that has spanned my lifetime thus far. The problem is that I’ve hankered after ‘things’ that have not necessarily brought me to what or where I want to be. Quite the contrary; I have waltzed myself into some really dissatisfying situations that have nothing to do with what I want. I have been subservient to my idea of what some unknown entity’s idea of value might be.
My mother made me feel special when I was a small boy. She loved to show me off to people and seemed to think I was the funniest, most entertaining human being ever born (I reckon that’s still a shout, mind). Unfortunately for me, my mother decided to leave the family home at around the time that I embarked on that most straightforward of developmental stages - adolescence. To be quite glib about it this left me, up to the present day, dealing with a lot of ambivalence toward my identity. On the one hand I was the Little Prince; this prodigiously and innately gifted wunderkind who exuded a preternatural ability to connect with mankind on a cosmically-charged level. Without trying I could ignite in my audience a mystical, ancient flame that seared their collective soul. The Last Scion (to be fair, I reckon that’s still a shout, mind). On the other I have experienced feelings of worthlessness, ugliness and dirtiness on a daily basis since the point of abandonment. Some days I can’t leave my eiderdown cocoon. Some days I tell myself that I can’t see any reason why I shouldn’t take my own life when no matter what I do – whether it be ‘good’ or ‘bad’ – the result is a chronic ache; a pang for something that I can’t even recognise much less articulate. This good vs bad way of thinking typifies my process of splitting life into polarities. All or nothing. Black or white. This still holds sway despite years of continual personal therapy and immersion in Taoism and particularly the tenets of non-duality. It seems my weapon for and against these opposites has been ‘doing’. I have made it my MO to ‘achieve’ academically or to do something as innocuous as writing songs, which in my skewed perception became another means of justifying my existence and another method of glad-handing some intangible quantity into liking and admiring me. I am being glib here because this is my story which is for another time. I will get to it all in good time. Suffice it to say, I have a good deal of weight behind these existential conundrums. The ‘doing’ of life, which is intensified and even fetishized in our Western culture only serves to pile more work on top of the mountain of work we’re pre-occupied with doing. Like I say, that would be my story. This is not my story.
I first met R in 2012. I sat across from his house, a nervous neophyte of the Support Worker role, waiting for the agreed upon time to arrive. This was only my second time meeting with a potential new client and unlike my first role I would be meeting the whole family. This is a particularly jittery proposition for me (particularly for me in 2012). I have subsequently done the ‘Beauty Pageant’ as it is often playfully termed on countless occasions. It got easier and more comfortable for me as the years went by but it’s quite a delicate act not at all like your typical interview scenario. You present your credentials, sure but given the nature of the work you are aware that the potential client will be gauging you for compatibility on a more personal level than say somebody from HR recruiting a software developer. In a way, I entered these pageants with a wilful attempt at effusing radiance, likeability and charm. The quandary therefore becomes one of authenticity; what if it’s too wilful? It won’t seem natural. To a degree it just isn’t natural. But you try to balance it all out internally before sending it off out into the ether to be received by your audience. Like me! I’m special!
With R it was a much different pageant. I was given R’s support plan by his Case Manager and we met to talk about the finer points of his requirements. R was a 12 year old boy with cerebral palsy who also had epilepsy. Anybody with either of these conditions would struggle enough. R, however was also blind and non-verbal. These last two points made me wonder/panic how I would meet with R and communicate with R. The family would be there but I wanted to try, somehow to establish that much needed connection with him. He was the client after all. Mum and dad welcomed me in and I was introduced first to R’s younger brother (8 at the time). I was then introduced to R who sat in his wheelchair in the living room, his eyes scanning around like stones skimming oceans, taking seemingly everything in yet never meeting with mine. My initial impulse was to hug him. I disclosed this to the Case Manager after our meeting which I later found she’d relayed back to mum, who apparently loved this sentiment. Mum assured me that tactility was very much a part of communicating with R. I rubbed his hand as I sat next to him for the beauty pageant. Instantly I could tell how special R was chiefly in the reflection of his mother. This could have triggered a lot of archaic feelings in me – it possibly did at points across the next ten years though I don’t recall specifics now. My first feelings were of warmth and affection, largely coming from within the family home and from within me for this boy.
I began to work with R. I’d previously worked with a man in his twenties who had suffered a brain injury during a road traffic incident. His difficulties, already manifold, were compounded by mental illness. My work with this man might have been a ‘baptism of fire’ for me as a fledgling (though I find this wording a little repugnant and objectifying). However, I wasn’t really prepared for what my work with R entailed. I mean to say, I was prepared in a professional sense. I was fully trained. What I mean is, seeing, for the first time, a boy hoisted throughout his room using slings was deeply affecting. Almost ten years have passed along with several hundred shifts and yet I still feel that same feeling when I cast my eye back. It was a combination of shock, humility, empathy (to the extent that I could empathise given my own privileged abilities) and shame. I think the shame came from never having thought about people who lived in this way. From the shock I felt – why should I be shocked that this was this boy’s life? I was shocked though. I was shocked at the absolute dependence of this boy about to enter into his teens on everyone around him. I was humbled that I was to be one of these people.
I cannot possibly render the impact that R had on me into words. Being trusted with this child (as he was when we first met and as he shall always be to his parents) taught me a profound amount of humility but also gifted me with a far greater supply of esteem than I ever thought I could again experience. I am forever grateful to have met this family and for them to have welcomed me into their lives. Perhaps most poignant for me was what R taught me about how to be. To be with R was initially a little awkward for me. Without any explicit means of broadcasting his wants, needs, pleasures, fears etc., it was up to me to attune to R to discern what he wanted etc. I’m sure I didn’t always get this right, and like most human beings, I spent a good deal of time in doubt. I often had the feeling that R was silently harbouring a lot of irritability regarding me or at least a book’s worth of expletives. But therein was another lesson; I became comfortable in doubt and uncertainty and moved with it. With this I feel as though R inadvertently prepared me for one of the main challenges of being a therapist. Beyond this I feel like my years with R made me a dad far better equipped when my daughter was born in 2015. Whatever I may do well as a father I would possibly attribute to the relationship I had with R. That’s because it was one of attunement and presence – both of which are simply not attainable 100% of the time. I wish I could say I was the Patron Saint of Care however the truth is there were many, many nights where I just wasn’t wholly available to R. My mind wandered. My focus and attention, whilst not straying so far as to be irresponsible or to pose a risk did stray nonetheless. It’s easy to regret anything and I try to be kind to myself for the moments that I didn’t show up to R fully present. I wonder if he picked up on the times where I was distracted or not fully dialled in. In some ways this reminds me of adult clients of mine who as parents lament their lack of emotional or temporal availability for their children given the exigencies of work/modern life. We could get hung up on these criticisms but like I assure my clients, Winnicott championed the ‘good enough’ mother. I try now to bear this in mind when I start to feel the undertow of regret pulling at my heart.
I wish I could convey R’s presence. I guess a lot of us (well, maybe I’m just speaking for myself) ‘do’ things to communicate something we want to communicate. Maybe I do things to serve as a legacy or as signposts to some way I wish to be thought of and remembered. R didn’t have this luxury (not that he would necessarily have wanted to, mind you). This means I can only draw from how and who R was to convey his specialness, which is a little more nebulous a task that is extremely difficult to reify. If I had a list of things R ‘did’ they would provide handy signifiers of what I wish to share with you. Sadly, for you, unless you met him and spent time with him you will not have any real idea of his specialness beyond the words I am using here. I wish I could convey his specialness in ‘doing’ this writing. But therein lies my folly.
R’s presence was potent. Despite his silence and immobility you felt him in a room. The ribbon dance of his pupils suggested an alertness and curiosity; the occasional smile a secret he wouldn’t let you in on; his plaintive groans and event horizon yawns a curmudgeonly streak that reduced his immeasurable pain to a mere inconvenience. I cannot and will not ever comprehend the pain threshold of this young man. He met with his daily agony, seizures, multiple surgeries and impediments with so much resolve but also with so much composure, calmness and very little complaining, to the point where I wondered if he was cast of adamantium. If I had a bad day or a period of sadness and then I called on R in the evening my troubles were always contextualised. And that isn’t to say we all don’t have our sorrows, struggles, joys – and that it is absolutely OK and essential to experience them all in their fullest expression. I simply mean to say that R provided me a perspective that helped me over and over again. And yet, R never intended any of this. Nor was he an object in the world that simply existed to provide me with such. I really hope that I am not painting that picture. He did give me all of this, absolutely. But he was more than that. Effortlessly so.
One of my best friends has Morquio Syndrome. For many years I watched him tolerate with tremendous grace the well-meaning attention of able-bodied people. This would often be on nights out when drunken punters would sidle up to him and profess their admiration for him. I also supported a man with Duchenne Muscular Dystrophy. He really didn’t like being referred to as brave, courageous or inspiring. There seems a very fine line between lionising some disabled people and patronising them. That being said, to me R was a silent tsunami of strength, dignity and enormous personality. Not for anything he ever did. For being.
I’m so proud to have known you, Dude. Brother. I miss you so much.
Love
Mark
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