max s. gerber(the latest shot)

for the past few days i’ve been chasing a 6 week old kitten around the floor of my office, trying not to get my feet clawed and bitten. i’ve had to move fast and be vigilant. still, sometimes the little guy catches me, even though i’m watching him out of the corner of my eye at all times, even though my reflexes are pretty good for my advanced age. for all the many things wrong with me (and there are many) i’m still able to move about the world fairly well. i take this for granted every single day. so, i suspect, do most of you. if i couldn’t get out of the way in time my socks and pant legs would be shredded by now. but what if i couldn’t even hold myself up in bed? i’d be kitten fodder for sure.

lilly grossman has mitchondrial disease. if you remember from high school biology, the mitochondria are the parts of the cells that create energy. the energy to sit up in bed, the energy to regulate your body temperature, the energy to walk down the hall, the energy to dance or talk or write or chase a kitten around a room. this disease is very rare and takes many different forms. in lilly it seems to affect her muscles, primarily. she has trouble holding herself up. she uses a walker, and sometimes still falls over, lacking the strength even to lean on it. because it takes so many complex muscle movements to do so, lilly even has trouble talking clearly at times.

lilly is also eleven years old. she loves high school musical, the color pink and hannah montana. she laughs at the things her parents do, and generally seems to be having a great time, no matter where she is.

as someone who has spent a lot of time around sick children – and, more importantly, as someone who has spent a lot of time as a sick child – i can confidently say that i could not begin to imagine the incredible patience it must take to be lilly grossman. lilly is whip smart. she’s watching and listening to everything. she’s laughing at everything. she just can’t move very well. she has a lot to say. she just has trouble putting the words together and getting them out right. when that’s your whole life you get used to it. you can get used to anything. but just being used to something doesn’t make it less frustrating, especially not when you’re seeing everyone else float so effortlessly through the things that cause you to struggle every moment of every day. now to be fair, this is me talking – i’m not pretending to speak for lilly here. it’s quite possible that lilly doesn’t have a care in the world and she’s perfectly happy, even being a bit incapacitated. in fact, i’m sure of it. but the whole of a life and the breadth of any single person’s experience is never so simple, never so easily summed up in one pat and tidy way.

when i was a kid i was always shocked and a little annoyed when people referred to me as frail or fragile. sure, my heart didn’t work very well, but i was used to it. i didn’t think of myself as fragile, and it pissed me off that other people did. even though they might have been right, and even though there wasn’t anything i could do about it, and even though what they thought didn’t really matter. but i had my happy days and my not so happy days. my cynical attitude, of course, has a lot more to do with the family i grew up in than with any illness i was born into. my point, inarticulate though it might be, is that when i meet these kids i try very hard never to assume that their lives are all bad or all sunshine and roses. the fact of the matter is that their lives are like anyone else’s, full of good days and bad days. it’s just that you have to try a little harder for the good days, that’s all.

lilly’s parents, steve and gay, try hard for the good days. they’ve built their lives around making sure the good days outnumber the bad. they moved to san diego from cleveland, to a climate that was much more stable and much more gentle on lilly’s system. gay was telling me about how so many of her old friends have become the kind of women who say they don’t need a man for anything. convincing themselves, perhaps, if no one else. but gay insists that she’d be lost without steve to back her up. i’ve seen too many families tear themselves apart over the stress of a child’s illness, but sometimes you see one come together heroically, put unnecessary things aside and make their lives work for them. watching steve and gay care for lilly even in the short time i visited with them, it was very clear that in doing so they’re caring for each other just as much.