I read a short article today about a young mother and her experience with a son who has Tay-Sachs. It resonated in some strange ways. Unlike Emily Rapp, the young mother, my parents have seen me achieve and experience quite a bit, and will continue to do so for a number of years more. Yet, like Emily Rapp, they will ultimately have to bury me and experience life without me — a job no parent should ever be assigned. And even though I am sorry — terribly, and tremendously — I have not told them so because I do not know how.
But what echoed in my chest the most from the article was the sense of time and purpose Rapp so eloquently writes about:
Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.
Rapp’s determination — that she and others like her — are parenting “for the humanity implicit in the act itself” is, I think, parallel to the most significant and elegant lesson I’ve learned in the past nine months. Too often, our society, our culture, our friends, and even our families train us — as we train them, and ourselves, in a vicious feedback loop — that success and achievement are measurable in financial terms and superficial goalposts. Spend your time making money and climbing whatever career-ladder most suits you, pursue some artificial end that has been entirely manufactured and maintained by that career track itself.
Getting sick has refused those ideas.
Instead, the lesson is this: exist for others. Choose a career that will benefit the lives of those around you, those in communities that need the help of others, those you love. Don’t exist for money or your own achievement — at the end of the day, those imperatives will leave you feeling without identity and empty. Do something that improves the lives of others, whoever those others may be. For years, I wanted to be a college professor, and that career would have put me in a position to help students better themselves through education, critical thinking, careful reasoning. I wanted to work, ideally, at a public university or community college, where I imagined I could help students who would most benefit from the lessons I know I can teach.
But with a shortened lifespan I realized that that dream may not be achievable in the time I had left. And as much as I wanted to be — and still want to be — a college professor, as much as I love academics and the niche I have carved out for myself in that world, there isn’t the time to do it meaningfully. To do it in a way that benefits others. To do it in a way that means something beyond myself and my own achievement.
So, as I’ve mentioned before, I’m going to finish my dissertation (a project I always intended to see through to the end, regardless of other circumstances) in Spring of 2015 and, in Fall 2015, hopefully enroll in an MDiv program and begin studying to become a Unitarian minister.
I’ll miss research. I’ll miss teaching (tremendously). But, as a minister, I can reach more people in less time. I’ll be in a position where I can positively affect the lives of as many people as possible in a short lifespan with the skills and talents I have.
I’m no saint. I don’t claim to have life right, or to have figured it out. I fall on my face with, honestly, a frightening regularity. I make mistakes — constantly — but I try to own up to those mistakes and learn from them. And if those things are true about me, I can use those experiences and that knowledge to reach out to people and pass along what I’ve learned — which, hopefully, will help someone along the way. Or at least try my best to do so.
I wish I could have learned this lesson in any other way. I wish it hadn’t taken a terminal diagnosis to teach me that our time is short and so we must experience the moment as fully and honestly as possible — and help others do the same. But life is unfair, and uneven, and scary, and often these things happen for no reason. As Rapp admits, a child’s terminal diagnosis reveals the worst to parents: “The long truth about their children, about themselves: that none of it is forever.”
And in the face of that uncertainty, that terrible, terrible truth, I wonder if the only thing we can do is ease the challenges we encounter on that path that we are all on, together.