I remember hearing about my mom’s cousin, Suzanne, occasionally while I was growing up. In the late 1970s or early 1980s, Suzanne had developed anorexia, at which time very little was understood about the disease. According to family members, the rest of Suzanne’s life was a “waste.” She went from hospital to hospital, getting tubes in her nose and would immediately relapse upon discharge. There was a definite value judgment in how I was told about her life. I got the sense that others perceived her as lazy and selfish. That she had been married and had a daughter, and she ruined it all. My grandma would shake her head sympathetically every time Suzanne’s name was mentioned, “It’s such a shame.”
Hearing about this as a child, I was confused why Suzanne wouldn’t just eat. I was told that there was a point you reach when you can’t get better from anorexia, that her body had shut down, and she would be sick forever. She was in her early 60s but looked at least 2 decades older. Her bones were so weak from osteoporosis that she had difficulty walking, and she spent her life going in and out of hospitals, seeking treatment for more and more anorexia-related health conditions. She and her 80-year-old mother, who looked like twins, were content being homebound, or so it appeared.
My family’s reaction to Suzanne was a precursor of how my family would view my own illness. After seeing for myself how my relatives would give me a disgusted once-over and say insensitive comments at family gatherings such as, “Let’s all stand around and watch Charlotte eat birthday cake,” I had a new found sense of connection and camaraderie with Suzanne. I feel like our souls connected on some level, and although we never acknowledged it, we both knew that we knew.
I always wanted to talk to her about her journey through anorexia at a time when eating disorder treatment hadn’t even developed. I wanted to hear about what led to her eating disorder, how all of those hospitalizations changed her, and what her life was like in the aftermath of the onset of the disorder. Suzanne was never open about her personal life when we saw each other. It seemed like she was a skeleton in a human body, her heart beating, but barely. I never saw her animated or giggle or laugh or cry. I don’t know whether she ate or drank. I never saw her do either. She seemed in a trance much of the time, like she wasn’t all there. I recognized that vacant look of absence of life. I had seen it before in people I knew. I had seen it in myself.
After leaving treatment in 2010, I sent her an email saying I would love to meet with her to talk about our shared experience, but I never heard back from her about that. I felt like I had something I wanted to say to her. Unfortunately, I never got the chance. In May of 2013, Suzanne died due to complications of anorexia. None of my family members bothered to tell me that she died until after the funeral.
Even though I never knew Suzanne well, I was devastated by her death. I felt like we shared a bond that traversed small talk at family gatherings. Underneath her emaciated body, I could also tell that she had an exquisite soul that was beautiful, complex, and rich. I saw the commonalities between us. We bore our pain in similar ways.
Marya Hornbacher wrote the following in her book Wasted: “You never come back, not all the way. Always, there is an odd distance between you and the people you love and the people you meet, a barrier thin as the glass of a mirror. You never come all the way out of the mirror; you stand, for the rest of your life, with one foot in this world and one in another, where everything is upside down and backward and sad.”
I don’t believe that about everyone. A lot of people do come all the way back. I have seen it happen. I have seen people who I thought I would attend their funerals, and now they’re full of life, enriched, and better, completely better. People can get beyond the living hell of an eating disorder and go on to live fulfilling lives. The eating disorder voice can be silenced or muted.
However, the reality is that some people don’t come all the way back. Suzanne never came back. That is a tragedy.
Unlike my family members, I don’t think Suzanne was lazy or wasteful. I saw her like I see myself— having issues that are partially based on cultural, personality, and biological factors. I see that she developed an eating disorder at the wrong time, when anorexia was not a household name and before treatment addressed eating disorders. I see her succumbing to the seductive lure of anorexia and becoming entrenched in a lifestyle of size, restriction, and weight loss. I know, all too well, that seductive lure. I know all too well that anorexia is like a rabbit hole, and once you go in, it’s so hard to come out. And even if you do, you are forever changed.
I mourn the fact that I could never connect with Suzanne before her death. I wish I could have told her that I understand. I understand the hunger for death and starvation so much that it trumps all else. I understand and feel the deep pain that is inside of her because it is inside of me as well. I wish I could have told her that there was hope, that recovery is possible. It is not easy, but it is possible.
I would have plead with her, eaten a meal with her, or tried to avert the lost glaze in her eyes. I wish I could have told her that I loved her, and more than that, God loved her and was grieving with her. God grieved that his beautiful daughter lived her life from hospital to hospital, crippled with osteoporosis and plagued with heart difficulties. God grieved that her life was so difficult and hated the anorexia for depriving the world of his precious child prematurely.
At a family gathering a few months ago, I had the opportunity to speak with Suzanne’s brother. I told him how much his sister’s life and death meant to me, that this is what compels me to keep going. She is a causality of an unfair and cruel illness that took her away. In life, Suzanne was silenced, but her voice cannot be silenced forever because she had something important to say.
It is a fine line between death and life. If I had been born 40 years earlier, I could have faced the same fate. Eating disorders are complex, but they are treatable. I have been privileged to receive the help that I have needed, but others do not have that same luxury. The world is being deprived of the light these people have to give to others and the world. I cannot stand by and let these diseases devastate innocent victims without doing everything I can to combat it.
It gives me great comfort that Suzanne is with Jesus right now, and he is wiping away her tears, telling her that it is all over, that it is okay, she is safe now, forever. She doesn’t have to suffer anymore. I wonder if I will ever be able to have a conversation with her in heaven. I wonder if we’ll be able to cry together over the anguish of sin and culture and biology and death, with our robes white, washed clean by the blood of the lamb. When we meet again, everything will be redeemed and made new. Eating disorders will be relinquished of their power, and we will be whole.
I wonder what we will talk about if I see her again someday. I wonder what I will have to tell her because I don’t know how my story will end.