Motivations for externalising love and grief

Most of my friends didn’t get to meet my brother Spencer. Even my closest of friends really only knew him through stories they’d hear from me. The few memories I do have of Spencer, laughing with friends of mine or the family’s, are ones I hold close to my heart. There’s only so much one can understand through second hand information, especially when it comes to someone like Spencer. So much interaction with people with special needs is affective and emotional. Even the most superficially mundane sounding stories can reflect moments of overwhelming joy and tenderness. Telling someone that he got a new blender for his birthday doesn’t even begin to do justice to the wonder, excitement, and gratitude in his eyes – the intensity of his warm embrace.

Though I hate how hard it is to capture all these nuances in articulating these stories, I know that often more is communicated in the tone than in the content of the words themselves. After Spence died in November 2021, a close friend of mine (though I can’t remember who) sent me a text in which they said that they had known how much I loved him from how I spoke about him. This touched me quite deeply at the time and I was pleased that my love came across from the way I spoke. Not pleased because I felt (or feel) any need to justify my feelings to others, but because, at some subconscious level, I wanted my friends to know my strength of feeling because it is such a defining feature of my up bringing and who I am as a person.

I want to use this space, amongst other things, to do just that – to externalise all this love and grief which has been deeply intwined with my soul. Until he died, though I am sure I still would have learnt a lot, there was less need for a project like this. Much of what I hope to explore here will be the shifting and changing nature of my feelings for him, working out what to do with the love that remains, but that now lacks an object to attach itself to. It is, quite frankly, a desperate attempt to keep a hold of that part of my life, the memories (good and bad), the love, the lessons, the struggles. Though I want to hold onto all of this until my knuckles are white, I can’t change what has happened and consequently everything that came before has taken on a new form. I hope by embarking on this journey I will be able to both understand and accept the nature of this new form, and possibly birth something new out of the ashes.

I want to recount old stories so hopefully some of you can enjoy the laughs and the tears, the joys and the frustrations that we all felt growing up with Spencer as a part of our family. I want this to be a space where I can hopefully learn to write freely without (self) judgement. However, beyond this, I also want to document the progress of the investigations that have arisen out of the aftermath of his death. I understand much of what follows will not be the easiest of reading, but I hope that amongst the darkness and tragedy, one can spot the moments of beauty, love and solidarity which have carried us through thus far.

My hope, I suggest tentatively, is that this journey can help proliferate some the amazing facets I have learnt from being part of the of community of people with special needs and those that care from them. I hope furthermore that it can provide some insights into grief, for myself as much as any readers, and that these may in turn act as foundations for future solidarities.