This is an entry by my husband, Chimp. No, I’m not actually married to a philosophizing simian – “Chimp” is his longtime internet handle. – Jocelyn
Jocelyn asked me if I’d contribute something to No Poster Girl, and I wrote some things that I eventually thought might be fit for the light of day. She could use a week without the pressure of crafting an entry, and I am trying to work my way through a year-long bout of writer’s block. I don’t think I can tell her story as well as she does, and I won’t try. I have nothing to add about the disease itself that others won’t say better than I can. So instead of those things, maybe I could write some things about what my part in our story is like. I will warn you that I talk for a living, and I can talk for a long time.
“She would of been a good woman,” The Misfit said, “if it had been somebody there to shoot her every minute of her life.” -Flannery O’Connor, “A Good Man is Hard to Find”
I spend almost all of the time I’m not working taking care of Jocelyn, each day until my back gets sore and I can’t do any more. I’m fighting a disease of my own – anklyosing spondylitis, a form of rheumatoid arthritis – but it’s well-managed. Knowing when to call it a day is part of the management. We don’t go out since she can’t take the strain of an hour going to a restaurant or a movie. We don’t get outside on the weekends. We don’t travel to visit family or take vacations when I’m not teaching. I write, teach and take care of Jocelyn all the time. Our television died in January of 2009 and I didn’t realize it until May of that year. We live very simply, but out of pocket medical expenses eat up most of what’s left. I am still very much here and every bit as committed to making a life with her as I was in our best days, before the illness ever appeared.
All of that will be familiar to friends and family, and no surprise to anyone who has read a bit of No Poster Girl. It’s not lost on friends and family just how much this takes either, and those close to me have always been vocal and effusive in praising me for my part in this. I’ve been told I’m “saintly” and “superhuman,” and that “there just aren’t people like [me] anymore.” I’m always grateful when people say these things to me, and I know that they want to be very vocal in their support. They often don’t know what else to do, and some affirmation always lifts my spirits a bit, even if I’m self-effacing when it happens. Of course, I can never let go of one inconvenient fact. All of these things are false.
I have no extraordinary abilities. I can’t play as fast as Jaco or hit the paint with Mike Mussina’s knuckle-curve. I’ve had a lot of luck doing what I love to do, which is philosophy, but about 90% of that is stubbornness and squeezing three nickels out of every one of my intellectual dimes. Anyone who thinks of me as saintly is badly mistaken, as is anyone who thinks I cannot be cruel or cowardly. I’ve left some messes behind me. Maybe a little digging would show the same of most saints – Augustine has his Adeodatus, after all. And maybe to live an extraordinary life in that sense is just to make something great out of messy particulars. But if so, what I do is not that extraordinary.
As Jocelyn got sicker, one of the things I would try to do was remain open to what people told me about their own struggles. When I would try to explain what was happening to others, people often opened up to tell me stories about how they or their families had had to do similar things. While I wouldn’t have wished those things on any of them, it felt better to know that I wasn’t the only person in the world dealing with something like this. There is nothing special about me in those respects; people like me are all around you, you just haven’t heard their stories.
When Jocelyn’s illness began to accelerate in 2006, I had moments where I didn’t think I could keep up with it. I had to fight a growing sense that it would be too much for me over time. Somewhere in that year or the next, something struck me. I could do this. Women have done this. I don’t mean to say that if women could do it, anyone could do it, as you might say, “That question was so easy, a child could answer it.” I realized that what was happening to us has happened, in one form or another, as long as there have been partners and families. The last daughter in a big family never marries, stays home to take care of the last parent to go. Grandma moves back into the house or the apartment, and her daughter takes care of her. Then her last granddaughter takes care of her first granddaughter. All of this becomes invisible because of who does the work, who cares for whom. They become part of our past, but not our history, not what we share with one another in public. I would have wished all of them less circumscribed lives if they had wanted them, but when I came to realize they had been there all along, I did not feel so alone.
Maybe that sounds optimistic when you read it. I don’t believe it is. Optimism would suggest that the fates or higher powers will inevitably or eventually arrange things in some better possible way, perhaps even the best. I don’t believe that, and neither does Jocelyn. This doesn’t make us pessimists, either. There is a willful disregard to being an optimist and a certain indulgence to being a pessimist – allowing yourself to let go of a sense of having a hand in an outcome, and congratulating yourself for being more clever than the rest of the room. Pessimism is a luxury. Pessimism is an abandonment. When things were at their worst in 2008, I once said to my mother, “I can’t get pessimistic. Things are too bad for that.” Whether things go better or worse from where we are has a great deal to do with what we do. In short, shit matters.
It’s a shame that it does, because we only control small parts of it. And knowing as little as we have at so many stages has made every turn for the worse more terrifying, every turn for the better more confusing, and every lull in between feel like the beast was catching its breath to come back for more. No one could tell us what would come next, or what we could do when it came. Medicines produce the opposite of their intended effects, test results turn hypotheses on their heads, and whatever pattern we find by adjusting will adjust itself a year from now.
Many of you reading this still have something that we do not. You have a story of a conventional sort. Your kids will be born, they will graduate in 2023 or some such, you will retire to the Gulf Coast or the Poconos or the Ozarks. You’ll wake up tomorrow and the appointment will follow the lunch at the restaurant that will be open on the street you drive to your job each working day. A will follow B will follow C and you will anticipate A’s arrival back while you’re tooling around with C. But there is no such story for us any longer.
Diseases have their stories, of course. They only have two, though, and both are written by those who do not have them. In the first story, our heroine contracts The Disease, but The Disease never has a chance because our heroine is full of spunk or gumption or has an old soul (every folk tale has its regional variations) that The Disease cannot overcome. Our heroine has her dark night of the soul. The Disease is a formidable opponent and looks like it might snatch her from us, but our heroine outlasts, outsmarts, out-hustles The Disease. And we all feel better for having cheered her on. The end. In the second story, our heroine contracts The Disease, but despite her strength, spunk and gumption, The Disease is mightier and they march together towards her Noble Demise. Everybody loves a good Noble Demise, one where you cry and your crying for our heroine redeems her, you and anyone who might be standing nearby. Everybody loves this story. We love this story, and we have been close enough to it to feel its breath on our cheeks. One anomalous test result years back hinted at the possibility of an incurable – surely terminal – form of adrenal gland cancer, and oh, how we wanted it to be cancer. We know what cancer is. Cancer’s an unholy bastard, but cancer makes sense. Everyone believes you when you have cancer. The whole world believes in cancer. We stared at one another in silence that night, but each of us could feel the other thinking, “Let it be cancer, let it be cancer…” And isn’t that just like cancer not to show up? Good for nothing metastasizing sonofabitch.
There have been people – people I have no need to speak to again – in whom I could sense some exasperation at her failure to pick one of these stories. Get better or get out already, they seemed to say. Maybe the grand scope of history was on their side. Those who got sick and got better could keep up with the tribe as it wandered across the savannah; those that died could be missed and missing them posed no further danger. Those who get sick and don’t get better are a recent invention, held together with pharmacology and surplus nutrition, and no one is born ready for this sort of story yet. How could you be? Maybe you went to bed last night with the whole thing figured out, and you think you’ve written a third story. But The Disease got up two hours before you, had four cups of coffee and reinvented itself after it read your draft. You wrote that story – and a hundred drafts before it – because you wanted to feel like you controlled The Disease, that the world would behave itself if you pushed the right buttons in the right order. But you do not control The Disease. You cannot control it for her, and you cannot control what her suffering does to you. You live a life where those things you cannot control are pushed to the fore. You cannot stop resisting it, because doing so is walking out on her. You must become someone who is not diminished by these things. How do you live a life where what matters most is not in your control?
Part II continues here.