With the first diagnosis of ALS, Ev and I realized that our new status would be both comforting and overwhelming to our friends, family and colleagues. We knew we had to share our news, and in that knowledge, we kind of stumbled into a space that I came to call “The Tell.” The Tell was both planful and spontaneous, sometimes because we set it up so that close friends could share intimately, and other times because it just happened. That experience continues today, as both of us still have circles that are unaware of our new normal. I still run into people who see me with a cane and ask, “What did you do?” Invariably, my first statement is, “I didn’t do anything,” but I am left with the decision of The Tell, knowing how odd the person will feel if I go on to reveal why I am on a cane, and knowing how odd I will feel if I just leave it up in the air.
I’ve been trying to figure out how to write about The Tell for a long time, partly because it is so seminal to my dis ease experience, and partly because I am afraid that I won’t do it the justice it deserves. “Tell” is a distinctive word. As English speakers we usually associate it with its narrative definition. This verb form is key to what I want to discuss today, but there is also an archaeological definition that offers insights into the word. In the Middle East, a Tell is a mound containing layers of civilization, one built over the other. The noun illuminates the dis ease experience, as each of us grows to become layer upon layer of events and knowledge, unease and dis ease and comfort and joy built one upon the other. Our private archaeology mixes relics with relics, up and down the strata of our psyches. It is what makes us so complex and unique, so beautiful and dangerous.
So Ev and I constructed our version of The Tell. At first, I think we expected The Tell to be about our own grief and shock, and to a point it was. But what I soon realized was that news like, “I have been diagnosed with ALS,” spawns an incredible range of reactions, and the dis ease experience is not just in the teller, but also in the told. I learned quickly that there was no comfort and great comfort in telling. I learned that the profound sense of truth that I owned in my diagnosis had no bearing on the ways that friends and family reacted. Some responded with denial, others with anger. Some expressed hope, and others quiet acceptance. The presentation of our vulnerability and dis ease inspired human expression that ranged from the holy to the profane. As we shared our dis ease, we became conscious of how many of our friends, family and colleagues carried their own dis ease as well.
This is where the archaeology of The Tell comes in, for it seems to me that each of us is like those Middle Eastern mounds–once you dig past the top layer, long buried and hidden life artifacts become apparent. Some of those artifacts are pure joy, and some are horrifying. What we learned to expect was that sharing our dis ease invited others to share theirs. Since my diagnosis, I have heard stories of terminal illness, broken relationships, physical and psychological assault, hopeless addiction, flat out discrimination, physical challenge, abuse—dis ease that represented life loss and life hope dashed or realized. There have been many dis ease story tellers. Some would qualify their experiences, “I know that this doesn’t measure up to ALS,” while others would tell me stories that made my dis ease feel like I had dodged an atomic bomb. I always understood that we humans carry our past and present pains and joys, as well as our future hopes and fears, just underneath the veneer that we present to the outside world. I just didn’t realize how present those pains and joys were. Truly, it has been like traversing an archaeological dig, with each Tell illuminating a personal story and the human condition. It has been a gift of privilege and healing.
There exist institutions, specific to different kinds of dis ease that help people to tell—Alcoholics Anonymous for example. I have discovered my own institutions through the internet forums built for my brothers and sisters in ALS. These places are raw, and yet they heal. They often predict the course of dis ease, but they also offer ability in the face of breakdown. In these places, The Tell is not abstract, but achingly human. Often, I see inspiration and despair in the same sentence, uttered by voices already taken, and here is one of the things that is profoundly touching. Those that can find a way back from the normal brink of sadness and grief invariably talk about a friend, a partner, a lover, a family, a colleague that continues to embrace them in spite of their emotional or physical condition. Those that spiral into despair believe they are alone.
I am strengthened for my dis ease journey by the human experience of connection. When I am able to be with those who balance their ease and dis ease so that life goes on, who reject the disabilities that others of less creativity imagine for them, and who embrace the new abilities that they have learned along the way; these people strengthen and energize me. When I imagine myself cut off and alone, my vision is literally oppressed into a gray despair. I don’t want to oversimplify, but it is when others share the new abilities they have learned from dis ease, even when these are most subtle or even unconscious, that my own burdens seem less disabling and my vision seems clear.
Dis ease gives us the choice of The Tell. As a noun, it is acknowledging the messy jumble of all the layers of our experience. As a verb, it is the truthful sharing of how we feel. When I see the inevitable spiral toward the great gift that dis ease brings, I know it is the gift for which I have prepared my whole life, fully and humanly shared. Whether we wish to admit it or not–liberal or conservative, rich or poor, religious or atheist, gay or straight, black or white, English or Spanish–each one of us carries dis ease and the choice of The Tell.
To paraphrase George Burns, dis ease is not for sissies. Dis ease offers The Tell as the very human gift that can mean growth in capacity, even as ability shrinks. Through The Tell, I have learned just how resilient and brittle humans can be. Through The Tell I have seen how dis ease debilitates some and strengthens others, enhancing vision or blinding the bearer, marking where we were and indicating where we are going. It is truth in the narrative, and it is truth in the archaeology.
All of us carry dis ease. All of us seek to ease the hurt. All of us have choices, and all of us have no choice. It is the knife-edge of the present that each of us walks. It is the omnipresent question—will we be strengthened by the dis ease journey, or will the journey overwhelm us?
For each of us, only time will tell.