The other week, my mom wrote about something that I’d been unable to write about: my sister’s struggle to cope as the single mom of a dying and disabled child, and the dark, difficult space of that struggle, and the breakdown that came when that space became too difficult to occupy. I’d been unable to write about it – even though my sister had given her full blessing for the telling of the story – because it was stuff that just seemed too hard to articulate adequately; it was the stuff, I said the other week, ‘about guilt and shame and anger and mental and emotional breakdowns and how when you have a suffering child the suffering extends beyond what you can imagine and how that’s hard to talk about because shouldn’t you contain your suffering on your child’s behalf?’ The hard stuff. The stuff that raises questions – and few answers – about the tension between selfishness and selfishness in parenting and where the line is between doing the very best for your child and acknowledging that that best comes, often, at costs that are sometimes hard to bear. The stuff that complicates the whole idea of the long-suffering mother of a dying and disabled child as a hero.
It’s stuff that I don’t have words for. There are limits to telling other peoples’ stories, even when they tell you everything, even when you’re living right alongside their story, even when you share so very much of their story. There are limits, because no matter how intimately you share another’s story, the deeper and more complicated strands of that story remain, sometimes, just out of reach, such that you can see them but not quite wrap your hands around them. I don’t know anything about being heroic. I don’t know anything about being expected to be heroic. I’ve watched my sister be heroic, and watched her struggle under the weight of the expectation to be heroic, but I haven’t lived it, so I don’t have the words to really explain it.
Here are her words:
On the harder days, the harder moments… I do not feel like a hero… I feel, actually, that it has all been a farce. That if I was hero, I wouldn’t have these emotions… that I would be able to do it without complaint, without question. I was too scared to face these emotions and feelings, too scared to admit that sometimes at night I prayed to God to spare Tanner and me and Sophie, all of us, all of this. Please God, even though he is brave and courageous, please, why put him through this? And then I prayed to God to forgive me for even having such thoughts. What would people think? My heart aches when he says that he hates his wheelchair, when he says that he doesn’t want to be in it anymore. My heart aches that he can’t run and jump and play with the other kids. He just trails along in his powerchair and watches, wistfully. I cry sometimes for the things that all parents want for their families but that we will never have, and then I cry for crying about it. I just want to spare him this. Or is it me? Do I want to just spare me the heartache?
Tanner is a gift, I know. And he has given me so so much. Taught me so much, made me so alive and so aware of how absolutely precious life is…. so how can I possibly have these emotions? Let alone say them out loud. But we have to face our demons, otherwise we are not really living, are we?
These past few months really did bring me to my knees, life in general was not kind and then it all crashed together and two months ago I really thought – what the FUCK? (can you swear on a blog? sorry but no other word can really encompass the emotion!) (sisterly editorial note: of course you can, honey.) WHY ME??? Isn’t it all just enough? Really, God, I know they say life only gives you what you can handle, but I feel like God, the gods, karma, the force… they must think that I am Mount Olympus. I didn’t think I would make it… thoughts of my father haunted me… but you know? In the crucial moment, I did reach out. To be truthful, it was more that I fell, and HARD, and could not get up again. The people that love me picked me up and steadied me. And for the first time ever, I let them. My friends and family saw me at my most raw, undignified moments. They stroked my hair as I cried… well, wept uncontrollably is more like it. They simply held me while the numbness set in and then finally abated… and I was real for the first time in a very long time… the velveteen rabbit, limp but real.
So the moral of this story is everything does happen for a reason… everything. Though it can be crushing, life sometimes, we have to have faith and know that this too shall pass and maybe it will be hard, harder than you can imagine, but it will pass, somehow. And all there is to do is love well and be well loved and let yourself be well loved.
I wish that loving her well was enough. I too often worry that it isn’t. Heroes need so much more than love to carry on in heroism, not least the understanding that they do not need to be heroes. Or that they do not need to be heroes alone. Because they can’t do it alone. None of us can.
Which, god. How often do we tell ourselves that, tell each other that? We can be heroes. It takes a village. Save a mother, save the world. And we do it, we make our efforts, we do our level best to be there for whoever needs it, but at the end of the day, the people – the women – on the front lines are there alone, slogging through the trenches, taking the fire. There’s a reason that the hero, in myth, is archetypically a loner; the heroism of self-sacrifice derives, in large part, from the distinguishing nature of that sacrifice – the sacrifice distinguishes the hero, sets her apart from the crowd, the community. I have to do this alone, says the hero, and we believe her, because wouldn’t she be less of a hero if she didn’t do it alone? Doesn’t heroism require that kind of unique, individualistic bravery? Doesn’t it require self-sacrifice, which itself can only be undertaken by one lonely self?
In which case, fuck heroism.
Let’s not be heroes. Let’s just be people, with big hearts and strong hands and a willingness to bind those together and let’s surround anyone who is being pulled to heroism – even if it’s just (just!) the mundane heroism of motherhood or caregiving or loving – and whisper to her – shout to her – we don’t need another hero. Let’s just be ordinary, and do this together.
Here’s to ordinary. Here’s to ordinary, and to love. May they save us.
Closing comments, sorry. Too much heavy here.