Kelly Coviello is an editor and the biggest Bruce Springsteen fan that I know. She is also very ill.
Coviello’s illness is complex and she explains it in detail below. More importantly—and the reason I interviewed her—she is particularly public about her illness in her life and on social media. We discussed why, in a culture that fetishizes youth and health, being open about illness is a radical and important act.
I wanted to chat with you because I feel like I get so much out of how you deal with your illness publicly. I think it is fascinating largely because illness isn’t a part of our public conversation and when it is, it is only dealt with clinically. I have talked with you about it before, but I was with my father when he was sick and I felt as though there was a pressure for me to not address in public. When I blogged about it at the time, I did so anonymously to avoid showing what might be perceived as vulnerability. It wasn’t until I really observed how public a face you put on what you are going through that I realized why that might be.
I guess we should start with what, exactly, it is you are going through.
I am dealing with an illness that really does not have a name. It is something that affects my immune system. It has all the markers for Lupus but it is not Lupus. I first became ill with this a few years ago, and the illness was precipitated by a tick borne infection. The doctors believe I always would have become ill but I needed a trigger. The tick borne illness was that trigger. I recovered last year from that bout.
Since December I have been dealing with a recurrence of this but it is more virulent than previously and as an added “bonus” it has given me the markers for something called Chronic Lymphocytic Leukemia (CLL). I am currently symptomatic 24/7. I literally am never free of symptoms and I also have to take several drugs right now that have made me violently ill at times. So my day to day struggle is to just try to live a semi normal life with a body that is defecting on me.
You are very candid about your day-to-day on social media. I am curious about what the process of dealing with this so publicly has been. I think that—and I might be wrong—until recently one could be dealing with an illness and was largely expected to keep that quiet. That expectation is still there, I am sure, but with the Internet people have been able to buck that.
I made a decision when I first got the diagnosis that I would not hide it. I did this partially because I firmly subscribe to the notion that only silence is shame. I hid my last illness from most people and it increased my feelings of isolation. I also decided that if nothing else, my dealing with this publicly might help someone else who one day might become ill. When they gave me the diagnosis I became obsessed with the idea of creating a legacy for myself. I thought that one way to do that would be to tell the truth about my struggle in the hopes that people who encountered my writings would remember it and perhaps use me as an example if they ever end up going through something similar.
There is an enormous stigma with illness in American culture especially. We fetishize youth and health and marginalize the elderly and the infirm. I want to punch a hole in that BS. I want people to realize that illness is a part of life and people who are sick are still just that: people, not objects to pity or fear.
It is interesting you bring up the issue about the fetishization of youth. In that sense, talking about illness is a deeply radical act, no? What response have you gotten? I imagine people are made to feel uncomfortable. This isn’t to say that you are making them uncomfortable, but something about this tear in the fabric of established aesthetic order is. How do people respond to you?
The responses have been enormously varied. Most people are very supportive with the public expression of my struggles but a few people did tell me they thought it was a “mistake.” I pressed them on that and their response was, “Well illness should be dealt with in the family.” I explained to them that I don’t really have much family and that it is my right and my duty as a writer to document my life, in its triumphant and tragic moments. They nodded and kind of disappeared. [Laughs]
I do think you are correct that what I am doing is in a sense radical. I am open about a struggle that terrifies most of us: the struggle with mortality. But the greatest artists, the ones I truly admire, are the ones who documented their lives and who never felt ashamed of their darkest moments. I spent most of my life feeling ashamed to be who I was, mainly because there weren’t a lot of Marxist feminists in Connecticut. [Laughs] But I learned through Riot Grrrl that speaking out about all of your struggles is also a way to unburden yourself.
The sense of suffocation that accompanies a lack of expression for me is unbearable. Most people have been understanding. I’ve even had some people send me gifts in the mail, letters of a deeply personal nature, thanking me for being so open. It has been rewarding to know that I have touched someone else’s life, simply by speaking my truth.
I think a lot of people feel—and not in this case in particular, just generally—like they need to have a response to everything. I know I feel that way sometimes. In cases of illness, particularly with some of the feelings of devastation and difficulty that accompany, people don’t feel like they know how to engage. But they don’t need to have a response to listen, right? Or to engage?
Nope. Just knowing someone is listening to you is enough. Some of the darkest moments of this struggle for me have occurred when I was around my best friend Jason. And he didn’t say anything in those moments. He didn’t offer facile words of comfort. He simply sat there with me and let me talk and his presence alone was all the comfort I needed. People don’t need to tell me all the time how sorry they are or they hope things get better. It’s enough just for them to be there and listen to me express what I am going through, and to do so without anger or fear. Sometimes shutting up and simply letting the sick person express themselves is the most loving and supportive act a person can commit.
I want people to know that sick people do not want to be lauded for their bravery. We do not need to be told how strong we are all the time. All we need is to be told that we are “allowed” to feel whatever it is we feel at any given moment-sad, confused, helpless. The constant praise for bravery often has a little plea attached to it: “Please stay brave because we don’t wanna see you upset.” But we have the right to be upset, and so do the people who love us. Relentless honesty is the only effective way to cope with an event as life altering as serious disease.