I Have a Fatal Illness — Why Am I Not Despairing?

Since my ALS diagnosis, I’ve realized a fundamental truth about life

A family jumping together on a beach
A family jumping together on a beach

“I still believe that the unexamined life is not worth living: and I know that self-delusion, in the service of no matter what small or lofty cause, is a price no writer can afford. His subject is himself and the world and it requires every ounce of stamina he can summon to attempt to look on himself and the world as they are.” — James Baldwin

I have been writing these blogs posts since my ALS diagnosis last February in the spirit of Baldwin’s words. Each of my posts is an attempt to explore passing thoughts and ideas more deeply.

The imminence of mortality is my new reality. I don’t know how long I will live, but it probably won’t be more than three to five more years, possibly less. But that knowledge hasn’t been the occasion for despair or catastrophizing. Many friends and acquaintances have found that to be strange, even suspect. I think they imagine I’m putting up a happy front while freaking out behind the scenes. But that is not the case. Nor am I congratulating myself about my attitude — it is simply who I am. But I am, like others, asking myself why. Why am I not depressed about the fact that I will be dying sooner than I expected I would?

Just this morning the answer occurred to me. I think it’s because I had a mother and father who believed in me. They loved me palpably and encouraged me to make the most of my talents. My mother would call out to me and my sisters as we left for school: “Make the most of your opportunities” which eventually was shorted to “Make the most!” There were the usual parent-child conflicts as I grew up, but nothing that disturbed that bedrock of love and the resultant security I felt. The legacy of that is that I’ve been able to find a way to exist in the world as my voice began to disappear almost two years ago, and I feel mostly equipped to deal with the years of weakening ahead. My parents’ love imparted to me an adaptability; their message was: You’ve got this.

I feel an inexpressible gratitude to them for this. I am acutely aware that not all children get that kind of unconditional love and support, which is far more important than the things conferred by having wealth, or years of education.

During the last four or five nightmarish years of mean-spirited white men trying to foist their cruel policies on the country, I’ve often thought that something must have gone wrong in their upbringing. They failed to learn lessons of empathy and kindness that should be part of early childhood development. Perhaps something went wrong even earlier — their parents failed to make them feel secure and loved even as infants. When that sense of safety fails to be seeded early on, it’s difficult to make up for it later.

All you need is one truly present and supportive parent. My husband had a difficult abusive father, but he had a mother like mine who adored her kids and believed in them and instilled in them, particularly in my gifted husband, a belief that he was loved and would be loved by others and possessed the necessary skills to make his way in the world.

I understand now why my mother was such a big proponent of early childhood education. When my sisters and I were kids, she helped found and run a nursery school for three- and four-year-olds She became a big supporter of Head Start.

Such programs should exist for all kids, but what about the years before the age of three? Those are the really formative years in terms of establishing a strong sense of security and trust and confidence. If parents are not naturally loving and supportive, how can they be taught to be so? Not a simple question. It’s challenging to support your kids when your own survival is in danger, putting you on edge day after day.

Our future as a nation depends on having a mature, secure, and thoughtful citizenry that isn’t paranoid, and irascible, and out to redress grievances by inflicting cruelty on others with yelling and guns. In other words, we need people who have been raised in an atmosphere of love which breeds security and empathy. How can the chances for giving people such childhoods be maximized? I wish I knew. I only have questions about this, no answers.

Meanwhile, as this disease tests me, I am overwhelmed with gratitude for the gifts of love and support that came from my own mother and father.

Cai Emmons is the author of 5 books of fiction, most recently the novel, SINKING ISLANDS. Two more of her novels will be published in 2022.