Here’s my worry about going to Africa to see the Born HIV Free project in action: that I’m going to start crying the moment that I arrive, and just not stop. And that I am then going to feel guilty about crying, and that I’ll then cry about that.
I fly to Lesotho on Saturday. I was supposed to go to Napa Valley, first, to hang out with some lovely women and discuss things like life lists and dreams and pixie dust and to drink wine and be light-hearted, and for some reason, some ironic reason or some absurd reason, that – that beautiful little oasis of self-indulgence – was grounding me, was helping me keep my emotional wits about me. I don’t know why, exactly. Maybe because they are opposing poles on the same fuzzy dreamscape, whereupon I live a life in which I get to do things like spend weekends in Napa and also go and support humanitarian projects in Africa and I wanted to see them reconciled. Because these things, these actually very real things, are, however different, nonetheless connected, inasmuch as they both have everything to do with this, this thing that I do here, on this page that you are reading.
But things changed, and I’m not going to Napa Valley first, and it hit me this afternoon as I was pushing aside the pretty dresses in my closet to see what clothes might be appropriate for visiting orphanages in Lesotho – what does one wear to visit hospitals and orphanages in Lesotho? – that I had really been relying upon the whole idea of Napa Valley – the Mighty Summit – as a buffer against the soul-rattling hugeness of the journey to Africa. Or maybe not a buffer – a transitional zone.
I like to think that I’m the sort of person who doesn’t take things for granted. I know how fortunate I am to have the life that I have; I know, too, that the terms and conditions of that life include no guarantees against frustration and sadness and pain and loss. I know, even the most difficult moments, that I have much to be grateful for, that I lead a life that is, for the most part, what the old philosophers might have called choiceworthy. I know that it is choice, largely, that defines my fortune and privilege: I am fortunate enough and privileged enough to be able to choose, to some not insignificant degree, my path and all of its little detours, to choose my pace and my direction, to choose to linger over or to pass by the myriad distractions of life, to gaze into the gloom or to seek out the sunlight. I am lucky, I know this.
It is also a characteristic of this good fortune, this privilege, that I am vulnerable to frustration and sadness (and, possibly, to depression; I’ll reflect upon this further someday) when I am forced to confront my limitations, when I look down this path or the other and see no way around a certain obstacle – some figurative bog or rock or troll-ridden bridge – and have to stop, give up, go a different way. That’s the very definition of privilege, I think – the luxury of getting pissy about being thwarted. Not that those who are less privilege don’t get frustrated at the obstacles that they are forced to confront – it’s just that, I think, the fortunate are more likely to put their hands on their hips and stamp their feet and say that shouldn’t be there, how dare that be there? and collapse to the ground in a resentful huff.
Or something like that.
It was just one night, and one night, measured against the course of a lifetime, doesn’t seem all that significant. But it was a dark night, and I have never been able to shed the weight of the memory of it. I have never been able to put it, as they say, in perspective. I never will.
Jasper was not quite six months old. I had not slept in weeks. I lay awake as he stirred and fussed, bracing myself for the moment when I would have to rouse myself fully to nurse him or change him or soothe him. The darkness that night seemed particularly black, the kind of black that has a density, a weight. To say that it felt like it was closing in would be to use a trope that gets overused when writers are trying to describe dark nights and oppressive fear, but in this case it was true. The darkness was closing in on me like a heavy fog, like an army of ghosts, like a slick of oil, like night made solid and sinister. I couldn’t breathe. Jasper continued to fuss. I fought the dark.
I fought the dark. I think that I won. Even at the time, I wasn’t sure. I’m still not sure.
If you have to ask that question, you should probably read this first – it’s the story of my nephew, Tanner, who is dying of Duchennes Muscular Dystrophy. It’s kind of a long story. But you should go read it, and maybe also my most recent posts about him, because the story matters. Take your time; I’ll wait.
So, yeah, I’m trying to raise money to make his biggest wish – to live out what time he has left at home – come true, and I’m trying to raise awareness of DMD, and of the challenges facing terminally ill children and their families, and I’m trying to do something, anything, that will make everyone – myself included – slow down a little and really, really cherish the time that they have with their children. And, yeah, that’s all a big job, but Tanner’s worth it – every child who struggles through this kind of thing is worth it – so. But I’m not doing this on my own – far from it – a whole bunch of people have pulled on their tutus (you got to that part in your reading, right?) and designated themselves Fairy Godpersons and are doing stuff to support Tanner and dreams and wishes and the whole project of being real. Stuff like: