Laura Kenig delivered a eulogy at the conclusion of this spring’s Speaking of Stories: Personal Stories in Santa Barbara. Laura spoke with great dignity, power, and compassion as she recounted living through a parent’s worst nightmare: losing a beloved daughter to anorexia. Here is her script as she wrote it.
Who’s to say how long a person
Is destined to be here in the physical form?
I had a curly-haired, squeaky-voiced, petite daughter who brought me tremendous joy—from her obsession with pink, performing, and ballet to her incredible wit, intelligence, bravery, strength, and sense of humor. She was an artist, and I believe she was her dad’s mother reincarnated.
My only child, and precious daughter Zane, was here for 22 years. She died on May 13, 2016 as a result of, I believe, having been raped when she was 15, leading to a horrific and deadly battle with food.
She struggled with anorexia for almost seven years. The last three years of her life she was getting intensive medical help and treatment, which I believe actually made her worse and caused her to be actively suicidal and destroyed her soul.
In the process of watching Zane decline and digesting and absorbing her torment, I came to a place of hopelessness and was eventually able to accept her choice and her right not to have any more medical intervention for her anorexia. There’s a lot that led up to me being able to accept her decision.
Mostly the torment
Zane tried to kill herself in October of 2014 and 2015 and ended up in the hospital both times. It’s a very long and complex story, but I do believe she might still be alive today if she had not been raped. And I believe that the medical model of intervention for eating disorders was also a form of rape of her soul. After her suicide attempt in October of 2015, Zane tried to get her life back. She got out of the medical model of treatment, but she was not able to overcome the eating disorder and ultimately decided she would rather die from it than go back into treatment. I honored her wishes. When she announced that she would no longer drink water in April of 2016 (three years ago), I knew that she was choosing to die and I spent the next month by her side. With the support of my husband and hospice, I watched my daughter die.
Six months prior to Zane’s death, in November of 1015, she wrote the following letter to my parents:
“My mom asked me to write my thoughts on where I am at with my situation so that she will be able to talk to you about me and her reactions to my decisions.
Here goes. . . .
As you both know, it has been a pretty rough few years for me, most of which have been spent inside institutions of one sort or another. Predominantly, these places have focused on my anorexia, restoring my weight, administering medications, and attempting to provide therapy. Unfortunately, most of the places I have gone to have been remarkably close-minded in their approach to healing, focusing on labelling me and not acknowledging what I have to offer the world. While my time in treatment has often saved my physical life, it is clear to me that it has killed off all other aspects of who I am.
My SPIRIT has been SHATTERED, along with my MENTAL CAPACITY AND WILL to exist.
I succumbed to the world of modern medicine, a world of fear and us-against them conversations, where the patient is treated as less intelligent or capable than the so-called professionals. I know that all of these people had good intentions in their attempts to help me, They were never malicious, but it seems to me that they were misdirected. It is for that reason that I have decided to NEVER return to an institution to seek help for myself, especially if that institution specializes in eating disorders.
I say all of this because I am at a point with my weight and eating where I ordinarily would be placed back in treatment, but I have chosen to put my foot down and say no to this form of supposed healing. I made a lot of progress—working with my new therapists—Terri and Becky. They approach me with love and compassion as well as respect and have helped me to bring my ailing spirit, mind, and will slowly back to life.
I feel more alive now than I have in recent years.
I am asking myself and those around me tricky philosophical questions about life, death, and everything in between. I am exploring yoga, hiking, contra dancing, making friends out the world of treatment, listening to my dad’s music, and am going to school again. All of this is to say that
I am unwilling to let these aspects of me die in order to save my body.
I am willing to die in the physical sense, if that is in fact what happens—in order to not lose the sense of voice and self that I have re-gained.
This is RADICAL, EVEN DANGEROUS.
It can appear preposterous to someone on the outside. After all, I am a 21-year-old with the potential to do many great things.
AS I AM OFTEN REMINDED.
But those great things will never happen if I am continually being kept alive in an institution of some sort. Perhaps I will, with more time outside the medical world have a shift in willingness and begin to eat sustainably.
WOULDN’T THAT BE NICE.
I hope it happens, but speaking realistically I am likely to die from anorexia. But I will die in my FULL POWER, living a life I HAVE CHOSEN, experiencing what it is like to be ME.
If you have any questions, or want to talk more about any or all of this, please feel free to email back. I know my mom will want to talk to you both about this, as she asked me to send this to you in order to be able to do so. It is a really horrifying place to be in as a parent—a place I can only imagine as I have never had a child. I am lucky to have open-minded, loving parents as well as grandparents like you two.
My best to you and much love,
Just prior to Zane’s death, I wrote the following letter to friends and family:
Our dearest daughter, Zane, is going to be free from her suffering soon and is getting closer by the day.
Phone calls with family and friends, advisors and teachers—saying goodbye.
She is running out of steam.
Speaking in whispers.
Zayde, her beloved grandfather, and friend Judy are her constant companions waiting for her to join them on the other side.
Her strong, athletic body has withstood so much and is determined to keep her going in spite of her emaciated and anorexic condition.
This process is slow and agonizing.
It’s also filled with beauty.
The beauty of slowing down and just being together.
Carrying her outside today for some fresh air.
The lilac ritual.
The gift of listening so intently it hurts. And hurts.
The gift of tears.
Zane reaching for me in the middle of the night.
Sleeping in the hospital bed with my precious daughter.
The gift of memories.
Luxuriating baths and hair washes.
Singing to her – Special songs – Hebrew songs.
Prascilla Ahn’s song, ‘Dream’ (listen to it if you can)
Alyssa’s devoted friendship.
Encircling Zane with our love.
The gift of hospice and awesome nurse Jennifer.
Giving Zane meds—trying to stay ahead of her physical pain and anxiety.
Buying a baby monitor to hear her if we aren’t in the room.
Splitting the night shift with her dad. He the first half, me the second.
Zane wanting us to be together for meals.
Hers: ‘Charms’ Sweet ‘n Sour suckers.
Today the blue tongue – ‘sweet blue raspberry’ flavor.
“I wish we were home in Minnesota. I’d like us all to take our clothes off and jump into a cool lake,” said Zane.
The insanity of this eating disorder—insisting on daily weigh-ins—the torment continues.
“We would not be in this situation if it weren’t for this eating disorder,” says Zane.
End stage of a DEADLY and chronic disease.
No more medical interventions leading to walled-in, institutional settings not recognizing the beauty and individuality and needs of our precious daughter.
I love her so much I am letting her go.
It’s the right thing to do.
I know her agony, as a mother knows her daughter’s agony.
No one should have to bear what she has borne.
I suppose you could say that about me as her mother and about my mother as mother and grandmother.
I know my mother feels this agony.
My heart goes out to her.
And Joey, Zane’s dad.
We have been so blessed by this precious being in our lives.
She is so worthy.
Worthy of freedom from torment.
Worthy of all the love that is flowing her way.
I’m incredibly grateful to have known this dear, sweet soul.
My teacher of kindness and grace.
My little elephant.
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