Grief, Loss, and Funerals for Our Abilities (Billie)

Usually the acquiring and losing of skills and abilities is compressed towards learning when you’re younger and losing when you’re older. In some ways, chronic illness and loss of ability is like aging in super speed with your body fighting back to retain what it can. While we often think of people as how they lived, not how they died; so too do I see among the loss and death of things in chronic illness the vivacity and life that carries us through it.

It may seem confusing to have life and fun so intermingled with death and loss; it can be hard with chronically ill folks as some might describe, “watch them die slowly” but in truth you’re also watching them live. In some ways the triumph of life and joy and fun over great adversity is a hallmark of the human condition and an essential part of our nature that has led from the first cell that existed on the planet through its descendants, each reaching sexual maturity, reproducing, and protecting their offspring long enough for them to reach sexual maturity. That unbroken chain from the proverbial slime in the primordial soup through single-celled life like bacteria, still ubiquitous and successful today, through other branches of successful modern life like plants and animals; even fast forwarding to hominid - think great apes - evolution from the first apes to stand upright to the first tool users to your most distant imagined ancestors all the way to your life today - every single organism from that first cell to you exists suspended in time in an unbroken chain.

That chain is no shorter and no less impressive for any human being alive today, including the human I interview today, Billie, a veteran of EDS (Ehlers-Danlos Syndrome) with other conditions like POTS (Postural orthostatic tachycardia syndrome), has some great take aways. Last time, we covered the psychology of surviving sickness.

Today we continue chatting about how appreciation of the high points in our life change throughout life. That is to say a great blackberry that you eat when you’re 27 might be more appreciated in a genuinely grateful kind of way at 57 when you can’t eat them anymore than when you were 27. This idea, that gratitude need not occur simultaneously with experience, is one of my favourite take-aways from the session; but it’ll make more sense when Billie communicates it herself. As usual, content warning for graphic descriptions of sickness and dark humour.