One cold, early spring morning, I waded out into Cayuga Lake at the edge of Ithaca, NY to drown myself. I stepped cautiously over the ice-slick slabs of shale, careful not to slip before I reached the water. As my rubber boots filled with icy slush, the shock of the cold made my heart jump. Was I really going to do this? I willed myself forward. I wanted to feel my limbs turn to frozen weights, like my brother’s had. I wanted to feel my lungs fill with liquid ice, like my brother’s had. I couldn’t stand thinking about his death anymore, over and over, day after day. I had questions and I was desperate for answers. I had to know, did the panic leave his body before his soul? I also wanted to see him, at the bottom of the lake. Was he perfectly preserved by the icy water, like my dad insisted, or already just a pile of bones?
I barely got waist deep before I turned back to the shore and flung myself into the snow. Ashamed of myself for, almost a year later, being completely unable to move past my brother’s death. Even when I wasn’t in the lake, I was in the lake. I was always in the lake. Frozen.
My brother drowned the week before he was to graduate from Cornell, in a freak accident. He’d taken a canoe out at dawn, and it had somehow capsized. We don’t know how. We don’t know why. But it was May, when the water temperatures are still freezing, so we suspect he got hypothermia before he could swim to shore. We searched for two weeks, the entire lake crawling with boats and buzzing with helicopters. Then we stopped the search and held a memorial. My entire world folded in on itself. Every day I woke up into a nightmare. A rollercoaster of nausea and horror. People told me to give it time. “Time heals all wounds,” the old saying goes. So I did. I gave it time.
During that first year, I tried everything I could to force the image of him sinking into the black ether, face blue, hair waving gently, eyes wide open, out of my mind. I made pottery and then smashed it. I patiently sat with jigsaw puzzles and coloring books. I went into the forest with a chainsaw, cut down invasive species and set them on fire. I devoted hundreds of hours to punching pads and round-housing bags at the local mixed martial arts gym. I zombie-watched TV shows and absently scrolled the internet. Anything to just let time tick by. One day, some day, I was going to wake up feeling better, more like myself, less like I’d woken up in some brutal alternate reality. Right? But time wasn’t going to resurrect my brother, and it didn’t resurrect my old sense of self. I did not magically start to feel better. The more time passed, the more I missed him. It was like holding my breath. The longer I did it, the more desperate I was for air.
It wasn’t until four years after my brother disappeared that I had some answers about why I was losing the thread, and some hope that I would be able to find my way back to myself.
We all lose people we love along the way. In most cases, the passage of time is enough to get us through the acute stages of sorrow, when every reminder of the loved one is like a knife to the heart. When each of my grandparents died, I was devastated and I missed them, but I was not consumed by longing for their return. They all died peacefully, at the end of long, full lives. Most of us, after a person we love passes on, can gradually accept that they are gone, experience joy again and find meaning in our favorite pursuits. But when my brother died, I got stuck. My grief became a trap.
For a long time, I resisted seeking help because I believed—I still believe—that my reaction to my brother’s death was a normal human reaction to a horrifying loss. The idea of branding my grief as abnormal –as something that needed treatment—was repellant to me. But was feeling suicidal normal for me? No. Definitely not. Did I want to go on feeling this way? Also, no.
A year after my brother’s death, I was told I had post-traumatic stress disorder, so I began to see therapists who specialized in PTSD. They focused on desensitizing the event—asking me to repeat the facts of my brother’s disappearance over and over. How he’d been camping with friends right before his graduation and gone out alone in an old canoe at dawn to watch the sunrise, never to be seen again. The week we spent looking for him, alongside hundreds of his friends and our community members. The scuba divers, fishing boats, search dogs. The memorial where we all walked in a silent row by the lake, staring out across the water. The pair of his shoes that still sat by the back door of our parents’ house. The fear—the dread—as bottomless as the lake—that he was abducted by aliens or a serial killer, that he was still alive somewhere and suffering horribly—would make my heart lurch as I tried to fall asleep at night. How do you learn to accept this kind of thing? How do you ever learn to live with it? How is telling a therapist about it, again and again, going to change how horrifying it is?
Sitting in these nondescript offices on dull colored couches with people I didn’t know, trying to talk about the most profound loss I had known made me cry uncontrollably. I quickly grew to dread it, and then avoid it. I never stuck it out for longer than three or four sessions before quitting, too afraid of the tears to continue. Too angry at these therapists, sitting there nodding, staring at me dry-eyed while I sobbed, pretending they had any idea at all what I was experiencing.
My list of failed therapists kept getting longer and my life kept spiraling further and further away from me. I no longer seemed to care about the consequences of my actions. Then about a year after I walked into the lake, I got pregnant. Suddenly, I couldn’t just wait around until I felt better. I needed to get better now. My baby needed me to get better.
I committed to making PTSD therapy work. This time, some of it was helpful, particularly a treatment approach called somatic experiencing, where I focused on the feelings in my body—My heart feels like it’s about to explode. The top of my head is buzzing—and learned how to regulate them with things like breathwork, sticking my head in the freezer, or “focusing on the room.” I also tried meditation, acupuncture, massage, Reiki, and gardening. Anything to get my life and my emotions back to a manageable place. But nine months later, I had little to show for any of it. After my daughter was born, and I’d finished breastfeeding—now three years past my brother’s death—I turned to pharmaceutical medications. But SSRIs just sent me on a rollercoaster of anxiety. Benzodiazepines had a kickback that made me cry harder when they wore off.
The day my brother disappeared, I’d been sitting in the graduation hall at Columbia University holding a fresh master’s degree, excited for everything the world had in store for me. Now, I was a mentally unstable single mom who lived in fear of her own tears. I was overwhelmed and confused by a life that had become a cardboard cut-out version of the real one I had left behind and I had no idea how to fix it. I gave up on finding treatment that would help me.
The idea that grief can take two separate forms—one that resolves itself organically and one that endures—is at least as old as Sigmund Freud. In his 1917 book, Mourning and Melancholia, Freud wrote that grief resulted in one of two conditions. Mourning was a healthy form of grief over the loss of a loved one, a process of which one was consciously aware. Melancholia, on the other hand, was an unconscious, pathological form of grief that was difficult for the individual to understand and extended beyond the scope of the loss itself to other areas of life. Freud influenced grief research and treatment for decades to come.1
In 1944, psychiatrist Erich Lindemann published a landmark paper on the symptomatology of “acute grief” and coined the phrase “morbid grief” to describe some of the more extreme cases of grief he studied.1 Lindemann also developed the term “grief work” to describe the process of readjusting to a world in which the loved one is missing, a process that he found was similar in some ways to that of a patient adapting to a lost limb.2 Then came Elisabeth Kübler-Ross, a Swiss-American psychiatrist whose 1969 book On Death and Dying popularized her theory of five stages of grief: denial, anger, bargaining, depression, and acceptance. Another watershed theory was developed around the same time by British psychiatrist John Bowlby, who proposed that one’s experience of grief can be shaped by one’s childhood attachment type: Secure? Anxious? Disorganized? Avoidant?3 Two camps had begun to develop: those who thought grief was a painful, poignant part of the human experience, and those who felt it should be treated as a mental health disorder or medical condition.4
Where does the enormous part of you that loved the deceased person go?
Then in the early 2000s, a team of scientists set about developing a clinical definition for debilitating grief. Researchers at Yale University, Utrecht University, and Oxford University had been tracking grieving individuals in the first two years after their loss. Their studies found that while grief “normally” resolves on its own—in about 90 percent of cases—in the other 10 percent, it persists.5 Soon after that, the Yale group submitted a paper proposing prolonged grief disorder (PGD) as its own psychiatric condition.6
PGD is defined as severe grief that endures longer than a year after the death of the loved one.6 It is characterized by intrusive thoughts and yearning for the deceased,1 and is associated with suicidality.7 It is psychologically and neurobiologically distinct from acute grief, major depressive disorder, generalized anxiety disorder, and PTSD,8 and is largely understood as an attachment disorder.9 Like me, people with PGD tend to suffer a prolonged and profound loss of meaning and disruption to their sense of identity.1 Where does the enormous part of you that loved the deceased person go?
The initial studies used to develop the criteria for the disorder had focused primarily on elderly widows whose spouses died of “natural” causes.5 But since then, researchers have found if the death is “unnatural”—sudden, traumatic, or involving a child10—or if the bereaved is unable to get closure,11 say because the loved one’s body was never found, the risk of developing PGD can almost quintuple.10 As I read more about PGD, it began to speak to me.
Over the past decade, as neuroscientists grappled with what was happening in the brains of people who suffer long-term grief, they made a discovery. While PGD often contains some elements of PTSD, depression, and anxiety, it is most similar to addiction.6 Like addiction, prolonged grief tends to feature a conflict between craving and avoidance: Yearning for the deceased loved one alternates with an avoidance of painful memory triggers.9
The foundational studies proposing the connection between PGD and addiction were published in 2008 by Mary-Frances O’Connor, a psychiatrist who directs the Grief, Loss and Social Stress (GLASS) Lab at the University of Arizona. O’Connor ran fMRI brain scans on women suffering from prolonged, unabated grief who had been triggered with stimuli related to their deceased loved ones. The scans showed activity in the brain region central to the neural reward pathway activated by addiction.6
“That’s progress. You went there, and then you came back.”
It is no secret that love and loss affect the reward system. Attachment figures help regulate our psychological and physiological responses to stress, providing psychological safe haven in times of uncertainty. They bring us both joy and sustained happiness. Neurobiologically, contact with the loved one, or even thinking of them, can result in a release of oxytocin as well as natural opioids. Over time, our brains come to associate the loved one with these rewards.9 This is very similar to what happens to an addict who is physically accustomed to receiving a boost from alcohol or drugs. If you take away the source of pleasure, the receptors in your brain are thrown into a state of crisis. Whether the original source was a human being or a drug, the result of its absence is one and the same: a deep sense of yearning, or craving. When what used to bring you pleasure starts to cause you pain—for instance, memories of a deceased loved one who will not return, or hangover from a harmful drug—you can slip into the vicious cycle of yearning and avoidance.
There is still no pharmacological treatment recommended for PGD. In clinical trials, tricyclic antidepressants and benzodiazepines have so far failed to work. But researchers are beginning to study the effects on PGD of Naltrexone, a drug that has been effective in reducing craving in people with opioid and alcohol dependence.
For now, the only treatment for PGD proven to be effective is a form of grief therapy—a 16-week course—developed by Katherine Shear, a professor of psychiatry at Columbia University. Shear’s course does not focus on the grief itself, but rather on helping a grieving individual adapt to the loss. Her work is rooted in attachment theory, which emphasizes the biological importance of a person’s relationships with a small handful of individuals—relationships essential to a person’s well-being. When one of those important people is lost, it is critical to distinguish between the loss of the person and the loss of the relationship. Shear says grief is the “form love takes when someone dies.” The love does not simply disappear, and for the bereaved, the relationship doesn’t have to, either. To prevent the bereaved from losing the vital attachment relationship completely (which can stimulate yearning), Shear helps people to remodel it in their minds—to internalize it.
Shear describes places where people get “stuck” in this process of adapting to loss, like avoiding reminders that the person is gone in order to suppress the associated emotion or focusing on all the ways the death could have simply not happened. These roadblocks are all natural defense mechanisms we throw up to protect ourselves from stress, but when they go on too long and become reflexes, they can keep us from healing.
Just after my daughter’s first birthday, I visited a psychologist who had me take a very long multiple-choice test called the Brief Symptom Inventory. It featured questions like, “Do you feel like someone is always watching you?” “Do you feel like everyone is out to get you?” The day after taking the quiz, I spent several hours explaining to the psychologist everything that had happened to me in the few years since my brother had disappeared.
After considering the results of that test, the personal history I had recounted for him, and his own reading of scholarly articles and the DSM, the psychologist diagnosed me with Persistent Complex Bereavement Disorder, a precursor to PGD.8 He recommended not PTSD therapy, but grief therapy. This diagnosis was pretty uncommon and finding appropriate treatment was more complicated than simply checking a box in an online search bar. He recommended exactly one person: a woman named Karin.
I went back to therapy, and this time I stuck with it. Karin has never heard of Shear’s 16-week course—but she has over 30 years of grief therapy under her belt. As I worked with Karin, I realized her approach had a lot in common with Shear’s. Karin didn’t focus on the event of my brother’s death, the way the PTSD therapists had. She focused on him—not on the trauma of his death, but on the relationship I had lost. My identity as his big sister. Things we liked to do together. The ways in which we were similar. My favorite version of myself was the person my brother saw me as, and she helped me to realize that even though he’s no longer here, I am still that person. For the first time, I felt like I was talking to someone who understood how I felt.
I’m no longer afraid of the tears. Because I know I can get them to stop.
Around the time I began seeing Karin, I also stumbled on a drug that helped a little: gabapentin. Gabapentin is a seizure medication that is prescribed off-label for anxiety.12 Someone I know who couldn’t take benzos due to a history of addiction had been prescribed gabapentin instead, and suggested I try it. I found a psychiatrist who put me on a tiny dose of it three times a day. It didn’t make me woozy or sleepy like the benzos, and it didn’t make me jittery like the SSRIs. I wasn’t overtly conscious of any difference at all. But after a few weeks on it, I realized I hadn’t been sneak-attacked by a single the-day-is-now-over type of complete meltdown I’d gotten so terrified of encountering. The pain was duller. The tears less frequent. Caring for my infant daughter felt more manageable. Everything sharp and painful felt a little softer.
Gradually, crying stopped feeling so terrifying. Less like driving over the edge of a cliff into freefall. It started to feel safe. I still cried, but I could also stop. In therapy, Karin forced me to stand at the edge of the dark whirlpool of grief I had taught myself to run from at all costs, and look at it, little by little, in her office, where she could reach out and grab me before I was beyond the point of no return. She would ask me a difficult question, and once I’d gotten deep into my answer, once I had opened that door, she would stop me and force me to tell her all about the painting on the wall, or the snack I had just eaten. Once I was safely back in the world of mundane pleasantries, Karin would smile and throw me out of her office. “That’s progress,” she explained. “You went there, and then you came back. And now you’re going to get on with your day.”
One day, in the middle of therapy, I realized I was telling a story about my brother. Out loud. How I’d lost our train tickets when he’d visited me in China, and we’d had to ride five hours in the standing-room-only cattle car. All the migrant farmers had crowded around him to read his palm. He’d just gone with it, letting them pass his hand around like a newspaper, tracing over his palm with their fingers. I would have lost my mind; I had already climbed into the overhead luggage rack to get away from the crowd. But he saw the world with brighter eyes than I do. He was so much nicer than me. I was laughing when I caught myself and stopped mid-sentence. I braced for impact, waiting for that familiar feeling, for my face to crumple and my chest to cave in. For the first time in years, it didn’t happen. Suddenly, the person I loved most in the world, the person more like me than anyone else, was more than just a tragedy. I could remember him again.
Chris, a toddler, sobbing when we put the lobsters he had been playing with into the pot to cook. Chris, with his first video camera, filming himself making funny faces. Chris making billions and billions of nature and science videos, narrated in spot-on impressions of David Attenborough and Carl Sagan. Chris showing up late to the family reunion because he’d locked his stuff in a bathroom stall so he could wander around the airport filming and had come back to his bags surrounded by the bomb squad and gotten detained. Chris, the flying squirrel, climbing up something just so he could leap off it. Chris throwing his first backflip. Chris winning practically every freestyle ski competition he ever entered.
Chris, a freshman in college, getting on a plane to Haiti after the earthquake and raising thousands of dollars for NGOs with the videos he made for free and posted to GoFundMe. Chris convincing me to come to Haiti with him to plant bamboo to create a building material and top-soil retention system all in one. Chris sitting on a fire escape in Brooklyn, playing the guitar and singing me a song he’s written, a shockingly beautiful song about people on the subway being alone together. Chris asking me to cut his shaggy hair in the middle of a heat wave and laughing at how bad I did. That huge pile of hair, carelessly thrown into the trash. What I wouldn’t give for just one strand of it now.
Being able to think about Chris again doesn’t mean I’ve stopped grieving him. As I’m writing this, I’m crying. I’m still profoundly sad about what happened to my brother. All the time. Deep in my bones. That’s never going to change. But I’m no longer afraid of the tears. Because I know I can get them to stop. I still have a bottle of gabapentin in my medicine cabinet, but I no longer feel like I need it. I still talk to my therapist, but it’s less frequent and much less intense. I still yearn for a world made complete, full of vibrant light and joyful love, by his presence. But this yearning no longer overshadows the rest of my life.
And I’m so grateful for that. Both for myself and for my daughter, who now has a stable, loving, happy mother she can depend on. Sometimes, I tell her about her Uncle Chris, how she will never meet him but how much he would have loved her, and how they would have gotten along so well. I can tell her stories about him. I can explain to her both who he was and what happened to him without dissolving.
I can hold that love in my heart, and I can look at it. My brother is dead. It has taken me years, and lots of therapy, and drugs, to learn how to manage the pain of not having him in my life, to accept the reality that he is forever denied the life that should have been his. Learning to accept this, to live with this, does not mean my love for him will ever, ever fade. Wherever he may be, I will always be proud to be his big sister.
Lead art: Mary Long / Shutterstock
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