How To Keep Going When Your Life Implodes

Pain, Change, and the Next Meaningful Step

(Content note: Discussion of suicidal thinking)

John Cotter was a writer in his early 30s—eager, ambitious—when his life imploded. It started with his ears. He'd hear roaring, thrashing noises. He experienced vertigo so severe he couldn't walk or stand or sleep. It went on for years. Eventually he was diagnosed with Meniere's disease, a baffling, debilitating, incurable condition that turned daily life into an unpredictable shambles. He despaired. He considered suicide. Ultimately, he chose to live. His beautiful memoir Losing Music is a story of love, acceptance, and what we do when the future we’d planned disappears below the horizon. Our conversation below is edited and condensed from two chats.

illustration by Maria Mendoza

Jessica: Many of us have experiences that divide our lives into a "before" and "after." You go from being a hale, healthy and—in your telling—kind of raffish guy to someone who is severely ill and disabled. How would people have described you before you got sick—say, John of age 29?

John: As someone with a big personality. Someone who takes up a lot of space in a room. I don't know that they would've described me as especially kind or generous.

Do you remember how you thought about disability at that time?

With a lot of fear. My dad was a guy who could be very generous and engaging, but he also could be quite cruel. Anytime someone came into sight with a disability that was visible, they were a subject for mockery.

I grew up in a schoolyard in which any indication that you were crippled-- I mean, kids are such little Nazis sometimes. I would see people in wheelchairs, or who were hearing impaired. I never wanted to be cruel. But I laughed at the same jokes everybody else laughed at.

You fall ill. You're trying to get a diagnosis, going from doctor to doctor and having bad experiences. I was thinking about a friend who has a complex medical situation. She’s had to develop this "patient persona” and walk a tightrope, being direct but not so intense she sets off alarms.

What did you land on in terms of your patient persona?

It was trial and error. I need to be very delicate and sensitive to their feelings, and very careful about how I introduce things. If I come across as too bossy, they'll get defensive. If I come across as too timid, they'll talk over me.

If you are too upset about this tragedy, you come across as unhinged.

The more you can think like a doctor, the better you're able to talk to doctors. Doctors tend to be rather haughty people and for good reason. They're awfully accomplished.

And they are people who typically have enjoyed pretty good health themselves. They would have to have, to get through the grueling education, residencies, the insane hours they work! If you're someone with a chronic illness, you simply can't do it.

That is such a great point. There's a selection process. The only people who make it through are people who have kind of superhuman constitutions.

Nevertheless, medicine is simply not as far along as we think. For rare conditions, the treatments that we think are there simply aren't. The problem I live with is not one that can be addressed medically. It has to be addressed psychologically, personally, socially—addressed inside myself.

It's difficult because when your life changes, you want to stay on the track that you were on. You have this idea of what the path might hold, and you've trained—through your education, experiences, work you've done on yourself—to live a certain kind of life. To suddenly be told you won't have that life is a kind of death.

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It was as though I was transformed into a bird, and I went to the doctor thinking that he could transform me back into a person.

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We have a vision of our future and we want that future. Perhaps we see the doctors as having the key to that future. The wizard in front of the cave has the key. If we just find the right wizard—

Then surely we can get it. Because science became what we put our faith in instead of magic.

It was as though I was transformed into a bird, and I went to the doctor thinking that he could transform me back into a person, but instead he said, "Let's see if we can make your life as a bird more comfortable."

I've been thinking a lot about the role of relationships in healing. Your wife Elisa is with you all along. She comes across, frankly, as a saint. And at one point, she limits the number of times you could mention your sickness in a given day.

It was a suggestion! Rather than a threat.

But when one person in a relationship is the caregiver, it's hard. I went through that when my husband had a concussion. Were there other structures you two created to help? How did you manage to keep it together under the pressure of your sickness?

It was extremely difficult. I mean, it helped that we love each other and are very committed to each other.

A lot of the tension in our relationship was me pulling away because I felt as though I was no longer the person she had committed to, because the sickness had changed me too much. I felt like a disservice to her to carry on as this diminished person.

Did she perceive you'd changed as much as you felt you had?

Oh, I think she would say I've changed—the horizons of what I could expect from my life were changing.

Maybe this is a legacy of growing up with an alcoholic parent—you have to adapt yourself, and your personality ends up feeling unstable because it's entirely responsive. It's not self-generating. So the nightmare for me wasn't, "This great person that I am doesn't exist anymore." It was this idea of what I could have been.

The self you wanted to grow into was still in the future, and now that future self was no longer available.

Exactly. Somewhere in Heidegger, he talks about this idea that we live provisionally. We don't feel as though we're ready to live our real lives. We're still at school, still getting everything together—

—preparing for the day our real life will begin.

Right. My old mentor Steve said to me, "You're addicted to being an embryo."

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I thought, “Christ, that's someone to be. That's something I can do that's useful.“

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And then, when you're very ill, you meet and befriend people who didn't know you before you got sick.

Yes. I can't overstate how important that was.

I was feeling very sorry for myself. One of the most shameful things in our culture is to feel sorry for yourself, which I find insane, because who doesn't, and with cause? Some guy writes a memoir about how his legs get blown off by a bomb. People say, "It doesn't have a trace of self pity!" I think I would allow some!

I wanted to lead with apology. I was walking with a cane. My balance was so bad. I could not hear because of this roaring in my head, like I'm going around with a piece of heavy equipment behind me.

Yes.

One evening, I was sitting in this coffee shop and a woman next to me was reading a book of philosophy. I was reading a biography of Jonathan Swift. She was thinking about getting an English PhD. We talked for hours. She said, "Let's do this again." We became work buddies. We still talk on the phone once a week. She did get a PhD. She built the desk I'm sitting at now.

The friends I knew before were wonderfully supportive, but I felt they remembered the person I used to be, so they were forgiving of shortcomings I had now.

Tiffany was the first real close friend that I made after I lost my hearing. She's always going to be a very special person to me because of that—learning that I was still enough, even the person I'd become was good enough to want to get to know.

Wow. The new friends helped you see that there was still a person alongside the illness.

The first time this happened— same coffee shop— was this woman who had just moved to America. She was weeping. I said, "Do you want to talk?" We talked for an hour. I never saw her again. She had been through a bad breakup. When she left, she said, "Thank you for listening," grabbing onto this very firm, sort of awkward handshake. A sense of, "You were a stranger who was there for me when I needed a stranger to be there for me."

And I thought, "Oh, well, Christ, that's someone to be. That's something I can do that's useful. Be present. Be someone other people can open up to."

Maybe in a way that you couldn't have been before.

I think that's right. I was so focused on my own shortcomings and regrets that I didn't see how much other people around me were struggling. Does that mean I recommend suffering as a way to experience the joys of empathy? <Laughs.> Not necessarily. Your mileage may vary.

Hearing aids are designed to disappear, so no one will know you have a disability. You mention shame. How do you think about disability now versus before you got sick?

Well, I'm on the inside now. It's a different world. And I was desperate not to find myself here.

We're a pride and achievement culture that prizes individuality and looks upon people kind of instrumentally. What's their instrumental value as opposed to their intrinsic value? The narrative around disability is with models like the Special Olympics, these wonderful athletes who are able to accomplish so much.

I don't mean any shade-- I think that Special Olympics are great. But I think the triumph narrative can function as another kind of erasure.

Say more.

We're awed by great achievement. The danger is in reducing all narratives to those narratives.

Everything is a triumph narrative, basically.

You can't buy a bag of coffee beans without reading a triumph narrative! "They said we couldn't do it, beat the big Folgers boys, but we did. And we're coming to your town!" I would love to see more room for voices that accompany us through life without dramatically pointing the way.

Something that I hear from people with disabilities—and I have felt when I've gone through periods of disability—is an almost allergic reaction to the idea of being "an inspiration." Why is the idea of being "an inspiration" so offensive?

It centers the person who isn't dealing with the disability— and my effect on their self-worth. And it simplifies who the disabled person is. A disabled person isn't their most impressive achievement. The disabled person is a complex soul made of senses, affections, passions.

So casting someone as "an inspiration" flattens the entire experience of that person to one instrumental function: to make me feel good about my life.

It's not a remark that signals communication. It signals solipsism. I didn't want to write an "inspirational" story. It's a story of adaptation and endurance and transformation. And love. It's designed to be a friend to the reader, but it's not designed to inspire them.

There's a difference between being an inspiration and being a companion.

I tried to write a companionable book.

This book is a companion to me.

That's kind of you to say. Thank you.

Your therapist, at one point, says you need to think about your 90-year-old self and be nice to him. Keep in mind his well-being. What did she mean by this?

She was a very practical person in her late seventies. She was saying, "Think about the next step you can take that will make your life more worth living"—the next step that 90-year-old man won't regret. I have anger at my younger self because he didn't know what fate had waiting, and had he known, maybe he would've made different decisions. She was saying, "You are your younger self compared with that old man."

She was pushing me toward acceptance, as opposed to railing.

If you had chosen to rail for the next 50 years, where does that leave the 90-year-old man?

Sick of railing.

Probably very hoarse.

And lonely.

What do you do now, keeping his well-being in mind?

I try to think of my future self more. I try not to disappear into intoxicants. If I have art that I want to make, try to make it. If I have relationships in my life that need nourishing, nourish them.

Is grief for the lost future is still there, or has it turned into something else?

I think once we endure something, it will always be a part of us. I'm skeptical of the idea of moving past anything. But I'm surprised by how I've come to accept the abilities that I have now, and how normal it feels to take in the world this way. The hearing aids are just a part of life. I'm never self-conscious about them anymore. I'm less embarrassed if I can't hear a conversation—I just think to myself, "Well, okay, that's not for me."

I'm able to find more reasons for living—to feel excited about life and in love with it.

You say one of the reasons you were able to cope was that you were beginning to forget the person you used to be.

I don't feel a sense of continuity with my previous self. When I look at pictures of myself before this condition, it feels like someone else— a brother. He processes the world in a way that I don't.

Do you know the poem "The Layers" by Stanley Kunitz?

No. Please tell.

Here’s the beginning:

I have walked through many lives,
some of them my own,
and I am not who I was,
though some principle of being
abides, from which I struggle
not to stray.
When I look behind
as I'm compelled to look
before I can gather strength
to proceed on my journey,
I see the milestones dwindling
toward the horizon
and the slow fires trailing
from the abandoned campsites,
over which scavenger angels
wheel on heavy wings....

That's wonderful.

I love that poem. When we become someone we wouldn't have recognized earlier, it makes me wonder, what is the self? Especially if some essential part of us can change so thoroughly that we feel like a different person?

Such a difficult question. The way we live right now, in our worlds that are mediated online and on social media, the self is this mood board we're constantly curating.

Right! A curated set of images.

The "self" is maybe almost too modern a way to think about it. I'm someone who doesn't necessarily believe in the existence of the soul. On the other hand, if someone's lying there in a coma, their sense of self may not exist in that moment, or it may. But their soul has every bit as much value as yours does.

The self is a process, don't you think? It's in a constant state of being born and dying.

I have this image of the self as something moving through time, acquiring and shedding circumstances and environments and psychology in order to go through its transformations.

Yes.

You had a period of actively wanting to die.

Constantly. All the time.

And you went from that state of mind to one in which you wanted more time in your life.

That's right. I want what's there.

How did that change happen?

One was an acknowledgement of the harm it would've done to kill myself. And a growing awareness of the experiences that I want to have in life. What's still in it for me?

I want to be able to hear my wife's voice. My mother's not getting any younger. I want to be able to hear her voice. I want her to have someone she can call. I was teaching— I want to hear my students' voices. My friends' voices. I don't want to not be there for them.

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Once you give someone a part of your heart, you never really get it back.

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Yes.

I'd flattered myself that I was someone others expected to live a useful and productive life. And I felt as though I'm becoming someone who can't do that, and this is going to disappoint people. I felt like I was betraying people by staying alive.

But really, of course I would've been doing a violence to them by killing myself. It's such a violent thing. A terrible thing. It leaves a wound. It's often read by the people who are left behind as an accusation.

I used to go on these chat rooms for suicidal people, and I was shocked by the violence that I found there. People talked about their physical body with such disgust. It's homicidal.

Yes, it is.

The people who care about me have given me a part of their heart. Once you give someone a part of your heart, you never really get it back. And I had given them a part of my heart, and I want them to have it. Our lives have grown together. And so to violently pull myself out— I don't want to do that to them.

What would you say to someone reading this who might be in that first phase, that phase of being suicidal?

Keep talking. Take the next breath. And if you can take the next breath, you can take the one after that and the one after that. I would say:

Life is absolutely full of surprises. And some of them are totally miserable, and some of them are wonderful. You've obviously found a lot of the miserable ones. But I promise it's a coin flip. If you stay with us—what I would say to them is, stay with me. It's hard for me to be in this world. I need you here to keep me company.

You are useful to me by being here. And I think your soul is beautiful, and something we need in this world. I think you have the capacity, no matter what you think, to help other people get through this. To do things you don't even know you could right now. Life is full of surprises and some of them are terrible, but you can be a good surprise in someone else's life.

Thank you, John. That's beautiful.

Thank you.

Do you feel like you understand something having written this book that you didn't before you wrote it?

We're in charge of the frame we put on our own experience.

Yes.

The book in draft one was extremely dark. I realized, for aesthetic reasons, I needed to find something to contrast with that. If you're writing nonfiction, you have to write about the things that are there. Because you can't tell a lie. So I went looking for those things that were there. And in the course of looking, I found them. The things I found were the things that draw me to the world, that keep me in love with the world.

It's amazing to see the worlds we're able to carry inside of ourselves without knowing it. I didn't know that I had so much inside of me until I started writing it down. I think making art is a kind of taming experience, too, where we take this thing that's wild inside of ourselves and we teach it to sing, to talk to other people. We teach it to ride around in our pocket. 

Note: If you or someone you know is thinking about suicide, please talk to someone.

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My book The End of Bias: A Beginning, about how people become more fair, just, and humane, is now out in paperback.