Aiming Low Does Good: A Real Boy

During the month of February, Aiming Low Does Good is taking a closer look at physical disabilities and the people who live with them.  Our goal in telling their stories is to encourage you to do what you can, when you can, to make everyday life more accessible to everyone.

Today’s post is written by Catherine of Her Bad Mother, whose nephew Tanner is confined to a wheelchair because of Duchenne’s Muscular Dystrophy.

Every visit to the doctor, now, brings bad news. In the early days, there were reassurances and messages of hope – some boys make it out of their teens, there are ways to slow the deterioration of his muscles, he might stay mobile for a long time, he might still get to enjoy some of his boyhood in the ways that other boys take for granted – but now, there are only somber descriptions of what will happen next, of what needs to be done to make things easier, of what use can be made of his diminishing time.

They want to put rods in his spine, she tells me. So that he can stay upright for a bit longer.

Rods in his spine. He won’t be able to bend, I think, before remembering, he cannot bend now. Not in the real, active sense of bending, anyway: he slumps, he droops, he slides forward in his chair, unable to hold his own weight even while sitting, a Pinocchio without strings. His spine is collapsing under the weight of his body, his muscles having deteriorated beyond the point where they can provide any support. He’s like a doll now, a puppet, one that can’t move unless someone – and here all of us who love him and care for him turn into, in some fashion, puppeteers – does the moving for him. But he has no strings by which he might be pulled all the way up, out of his chair. He has no Blue Fairy to wave a wand and make such strings unnecessary. He has only wheelchairs and lifts and surgeons, and rods.

Rods in his spine. I imagine steel, or rebar, those skinny ridged bars that are laid in concrete, because even concrete isn’t all that strong, even concrete needs extra support, and what are muscles compared to concrete? Even concrete sags, to say nothing of wood and fiber and the things of which dolls and puppets are made, to say nothing of people, made of flesh, made of muscle. This is not reassuring. This does not make me feel better. Muscles, concrete, steel, wood, puppets… this is a grim fairy tale.

I focus on the rods, of course, because they are so visual, so visceral, so evocative of things that are monstrous (Dr Frankenstein and his wires and bits) and things that technological (“we can rebuild him“) and things that are magical (Pinocchio’s stiff, wood-rod arms and legs, made flesh, made malleable, with one wave of a fairy’s wand). I focus on the rods, because they unnerve me, and because they are, in a twisted way, a symbol of some elusive hope. They will hold him up. They will support him. They will be his backbone, now that his God-given backbone has collapsed. They will defy God. They will hold him up, now that God is letting go.

******

His heart is going, too. They have him on medication, the kind of medication that they give to grown-up men, to men who have had heart attacks, to men who fall like thick trees, clutching their chests, lives flashing before their eyes. He is just a boy, and yet his heart is weakening, slowing, limping under the weight of years that he will never see.

I am trying to not think about that, because there are no rods for the heart.

******

The thing about the rods is, they represent, right now, everything that we worry we don’t have, everything that we worry we can’t give. Tanner’s body is failing and growing all at once; he becomes heavier and weaker, weaker and heavier, every day, and my sister struggles, alone, to care for him. To lift him is to lift limp, unmoving bulk. It is to lift dead weight. Dead weight. She can’t do it alone. (What if he can’t die at home? — That can’t happen — But what if? — It can’t — What if?) She tries and she tries, but she is no Blue Fairy, she has no magic wand, only her arms and her back and her determination, and she fights with these, she fights through these, to lift her growing dying boy, to lift him and push him and pull him so that he can move, even just a little, because to move is to live, and he wants to live, and she wants that for him, but she is getting tired, so tired.

My heart breaks for her. My heart breaks for her, across and through and up and down and sometimes I worry that the pieces will shatter such that I won’t be able to put them back together and then where will I be, where will she be? There are no rods for the heart, but sisters can be rods, and I am trying to be hers.

It’s hard. It’s hard because the work of this is hard, and because we live in a world that makes this work harder, so much harder (a world filled with curbs and barriers, a world filled with obstacles, a world that doesn’t care, or doesn’t seem to care, when things get broken, whether those things are metal or bone or muscle or hearts). It’s hard because we are not built for this, this struggle against this obstacle-ridden world, this battle against time, this fight. I am not built for this fight. I am not made of steel. And who wants to be, really? We want to be flesh and bone and blood and muscle. Our weakness makes us human. It is because of that weakness that we feel, that we ache, that we thrill. Pinocchio wanted that. Pinocchio did not want the wood, the strings. Pinocchio wanted to be real. Pinocchio yearned to be real.

We are real. Tanner is real. No amount of rods or heart medications or mobility devices can change that, but that means, too, that none of those things will save him.

Being real is precious, but it is sometimes hard to bear.

Catherine writes at Her Bad Mother and Their Bad Mother and The Bad Moms Club and everywhere in between. This post is an adaptation of this post, which is not all that much different, really, but whatever. You can read more about Tanner here.

As this month draws to a close, we want to say thank you to Catherine, Tanis and Anissa for sharing their stories with us for Aiming Low Does Good. We hope you’ll remember their words the next time you see someone in a wheelchair, and that you will be inspired to see them rather than look beyond them.