Butterflies, Hobbies, And Lupus or How I Became Labelled And Pinned To A Board

My father traveled back to his mother’s home country once in his lifetime. He met three relatives, none of them close to him (two twice great aunts and a cousin), and the only thing he came back home with was the impression that being a spinster in his mother’s home country meant having odd hobbies. Both of the aunts he met were spinsters, one a former school teacher and the other a former nurse, who collected butterflies and ants respectively. They were very eager to share their collections with my father.

When the spinsters died my father somehow inherited these bug boards, which he kept out of sight most of the time. Every now and then though my father would pull out either the boards with the fragile butterflies or the tiny ants and comment on how much dedication and time it would take to amass such collections. Every insect was neatly labelled and had be stabbed, er pinned I mean, just so to the board. Mostly when these products of hobbies came on display I’d leave the room. I couldn’t imagine what it would be like to be captured and pined against a board for all time.

I don’t remember what happened to the collections, I think my father found someone or some group to share them with, but I can still see those stabbed insects as if there are right here in front of me. And while I cannot comment on hobbies, for spinsters or otherwise, I think I do understand a bit about what it’s like to be one of those poor insects, trapped to the board.

You see having a chronic illness, such as lupus, is a bit like being captured when you were just freely moving about and getting on with life. Suddenly you are caught in a net of testing and medical appointments all the end result (if you are lucky) of getting your nice, neat little label or diagnosis. By that point you have already been stuck to a board so to speak. You have become, like it or not, a specimen of a human with a specific disease, in my case lupus. And try as you might, pull as hard as you want, you cannot really come off that board. You lack the energy, the strength and the ability to do things that others take for granted.

Sometimes, when you are having a “bad day” you are pinned to the bed or a chair as you watch the rest of the world go by. I don’t want to believe those insects were pinned to the board while they were alive, but if they were then I guess they too go to watch things go by while they slowly felt themselves drifting away from the life they used to have.

While you are pinned down, nicely and neatly labeled you hope someone will come along and help you get off the board, say a nice doctor or two. All you really want to do is shed the label (although I confess there is relief in knowing that there is a name for what you have) and just get back to being normal. You know, normal like everyone else is normal. Today’s one of those days where I’d really appreciate a helping hand or two, you know something to just get up a bit off this board if possible.

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