National Eating Disorders Association

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akvalkyrie
Heartbroken and desperate

The Story of Anna

I don’t know how the story ends. But it will.

All I feel is grief. The heart wrenching, stabbing pain of grief that wells up until it reaches the lower lids of my eyes and cascades out like a raging river. If noticed soon enough, I can push it down or release it bit by bit with a trickling tear down my cheek. Or at least I used to be able to control the fury. Almost twelve years of damming up, fighting with hope, the panic that halts my breathing and speeds up my heart has heightened uncontrollably and has now taken control of my being.

Before this grief, I was able to confine the chaos to lonely nights curled up by the toilet sobbing and jerking. I thought no one could hear. I thought if I kept it to myself, no one would worry thinking I had it under control. I could fix this. But I can’t. Now I wake up to the deep primal screams emerging from the depths of my core, my body convulsing from the unattended fears of the day. Everyone hears, rolls over, and goes back to sleep. They know what I haven’t accepted. It is not my journey or my decision to make. This is not my disease. I am not a part of the conversation any longer. ED is in control of my adult daughter.

The control was gradual. She was 10 years old. Unsure of her place in a blended family. Gifted and different. And always compassionate. At three, her emotions merged with the dying spruce trees infested with Spruce Bark Beetle, tears rolling down her tiny face as she sang an original composition to ease their pain. She placed her needs last, self-appointed as the caregiver of her two younger sisters: 7 and 9 years her junior.

Not one to act out, she held in her resentment and fears. The cutting started and ended quickly and quietly. But the need for some control of her life grew. Then came the voices, both internal conversations of perfection and the social and familial demands of that ideal body. This she could do. And she did. Quietly and subversively through middle school. Food remnants chewed up and spit out into paper towels and stowed in the corners of her closet.

She was lauded for her running. She was in the zone. And ED talked with her at every stride. The summer before sophomore year, she broke her wrist. And she gained weight when the weight of her cast made running painful. ED consoled her. Her weight quickly plummeted. Then down again. By August, she refused to eat.

Aunts on both sides of her family had struggled with eating disorders. I had watched years before, as my then 16 year old sister dropped to a very low weight picking at her food while watching me eat with unadulterated judgement. Her hands were orange from her diet. I wasn’t going to do this with my own daughter. Counseling had helped my sister long before treatment facilities existed. It did not help Anna.

Less than two months later, weak and on a heart monitor, hospital nurses jiggled Anna awake when her heart dipped below 35 beats per minute. I was sure she was going to die. I panicked. With my husband commercial fishing, I was left to the ignorant advice and comments of friends, family, and medical staff. I learned the term Orthostatic testing and envisioned her heart withering away as her body, unable to find adequate fat supplies, eating her muscles and attacking her heart.

Anna was despondent. The black eyes had replaced the lovely sweet hazel eyes months ago. Her hate was evident. When people would tell her how good she looked or give advice about a diet, I wanted to rage. Her father, my ex husband, retreated to his own state of despondency. He couldn’t discern between his own fat phobia mantras and the life threatening force that was taking away his daughter. All advice was that this was a phase that she would outgrow just like the daughters and sisters (and selves) that weathered this storm before her. But I knew. I had lived with it first hand. Against the advice of friends, family, and her father, I made the decision to send her to an eating disorder residential facility. She needed to be fixed.

And she was, temporarily. Family Week was a joyful time of reconciliation and amends. She affirmed that without me, she wouldn’t be alive. I was sad for the people who had made this journey with their young girls for the fifth time, but we were not that family. We had overcome as a broken family. And she returned to school two months later, completing all of her correspondence courses with A’s, with the exception of one D - the equalizer grade that proved that perfection was overrated and a D was just fine.

Anna graduated high school placing a respectable and high average 17th in her class. She had a long term boyfriend and got accepted to a university which was her number one pick - with a full ride scholarship. Life was good. And four years later, it wasn’t.

With the breakup of her five year relationship, she spiraled. Her feelings of inadequacy and unworthiness quickly surfaced. She partied, drank, and dated still not alleviating her pain. But ED was there to pick her up…. And bring her down. Professors reached out to me. Anonymous letters to a leading expert on eating disorders ended with a facebook message informing me of the dangers of anorexia. I politely emailed back telling her that I was all too familiar with anorexia and knew of my daughter’s condition.

Anna changed with the knowledge that others were concerned. She had found a new identity. She talked openly with her professors about her treatment plan that involved missing 10 days of school. She shared her struggle with her sorority sisters. Her roommates embraced and supported her. Earlier in the year, her beautiful, healthy face had been plastered all over campus with oversized banners as a featured student of UPS. But this identity was easier for her. She no longer had to hide her eating disorder. She was able to embrace it while still being accepted. She graduated that year. Sad to leave this family and support that allowed her to be herself, she struggled again with her lowest weight ever.

Now I sarcastically laugh at my fears and clench my fist to my heart at my mistakes. What I would give for her previous weight. At this lower weight and three more attempts at both inpatient and outpatient care, Anna is facing her final days. The extra $300/day for After Life Care offered when she was 15 may not have helped, but we didn’t try it because of the cost.

I have lived the past 12 years for my other two daughters. At four and six, they have grown up with the fear of death. My youngest has said her goodbyes multiple times. She hates her sister and has lost friends who judge her for honesty. I applaud her frankness. At 17, she is the most authentic. She was a pawn in Anna’s disease. Anna baked incessantly with her, and she ate the food in hopes to make Anna feel better. Then the judgment of eating was thrown back at her with such vehement disgust. This disease makes enemies of sisters.

Her other sister was closer with Anna. She tried to understand Anna and this disease. She researched and wrote of the disease. She was her confidant. But this spring, when Anna was in ICU across the street from her college, she couldn’t visit her. Even though she knew that Anna was alone and on her deathbed, she couldn’t dig deep enough to visit her. She had seen her the month before and knew that she wasn’t strong enough. Her protective bubble hardened.

And I didn’t visit either. Nor did I talk with the doctors. Anna continued to text me every morning, as she had done for the past two years since moving to Portland, to let me know she was still alive. She told me how things were better. Her swollen, bleeding feet weren’t so bad. Her vitals were stable. The fear of the edema stopping her heart had mostly subsided. And she was sure she could be out of the hospital soon.

Ten days in ICU (the ICU nurse shocked that she had only one visitor and no family), three brushes with death, and another two and half weeks being moved from one floor to the next gave her some time to get better. With me as the bodyguard, her sisters and I visited Anna.

I heard her lark like voice, yet I didn’t recognize the Holocaust victim pushing an IV pole and walking towards us even though she had sent us a “selfie” to prepare us for what we would be encountering. She gaily introduced me to the oncologist staff, then later the social worker. Nurses and doctors told her that she was medically fragile, yet all Anna heard was that she was better. And she decided that she really didn’t need to go to residential. She had a plan.

This will be the last time her youngest sister sees her. Despite her hate, she loves her sister too much to see her like this again. On the way home from college, her other sister stayed with her for a couple of days in case she dies over the summer. Her tolerance of the lies has left her void of compassion. To the dismay of us all, we have voiced how it would be easier if she just died.

Two days ago she was discharged after a voluntary two week admittance for a refeeding program. She was up more calories/day. But she still refuses residential support. Because of her BMI, her options are limited. Only place will accept her. She has her own insurance and a bed waiting for her. Both her aunt and I are ready to fly there with her. My husband wants me to deem her unfit and force her into residential. This is his way of telling Anna he doesn’t want her to die. But the truth is, this is not our decision.

The team compiled relayed that she has a 100% chance of dying within six month if she doesn’t go to residential. Whether forced or voluntary, her chances of recovery have been reported to be less than 50%. Anna knows this. She is working on a plan.

I don’t know how the story ends. I do know that our lives will forever be changed.

Cher01
Feeling helpless

As I'm reading your letter I sit here crying because of the similarities with eating and spitting in cups and napkins leaving this all in her room under her bed and closet, dresser drawers. It's so heartbreaking to watch this go on and my daughter is in such denial. I hope your daughter can overcome this terrible disease I wish the best for you and your family. God bless

_admin_moderator
Hi Cher01,

A portion of your post was edited due to the mention of specific foods that may be triggering to other forum members. Our community guidelines are always available to review here, http://www.nationaleatingdisorders.org/community-guidelines. Please continue posting :)

_admin_moderator
Edit

Hi akvalkyrie,
A portion of your post was edited due to the mention of specific numbers that may be triggering to other forum members. Our community guidelines are always available to review here, http://www.nationaleatingdisorders.org/community-guidelines. Please continue posting :)

akvalkyrie
Thank you for acknowledging...

My fear has been that Anna will wither away and no one will know her. These past 12 years have been difficult, to say the least. I've visited this site before, as a "newbie" mom seeking answers. Now I am one of the more experienced parents. Your advice about self care, and self love even, is appropriate. I wrote the letter to send out my version of the story so her struggle isn't lost. I had a massage and talked with my counselor to talk about "what next?" Discussions that I couldn't even have imagined I'd ever have.

My fervent desire is for her to move back home so she can be with family and friends who love her. The time of judgment and feelings of failure are long past. Now is the time to embrace what is good and remember the joys. Again, this is not my story or my decision. The option has been given lovingly.

Anna's story is not a good one. Yours is much better and the ending that we all hoped for. I am truly thankful that you are able to read and reply to this with such a grateful heart. My best to you with the gift of life that you've chosen to take.

akvalkyrie
Prayers are always welcome

Thank you so much for the post. Anna is talking about coming home. There is really nothing left for her in the city. This can be a start over or a place to die. Either way, all expectations of life, (getting a job, having a family, proving herself in some career) have been lifted. She has nothing to prove to us or herself. Acceptance of how life is, and not what we want it to be, is a powerful and healing path for us.

My heart has lifted with the thought that perhaps the love and prayers of her family and community could make a difference in her desire to live. I know the thought of being alone is hard for her. Reading your post gives rise to that possibility of hope again.

Blessings to you. I am glad you chose life so that you are able to offer experienced and compassionate words of encouragement to others who are in need.

2Joy2love
thinking of you

I have been praying for you and your daughter and the rest of your family. You have been in my thoughts.

2Joy2love
Hi akvalkyrie,

Hi akvalkyrie,
I have been thinking of you and Anna, I hope that things are doing better you are not alone. I will continue to pray for both of you.

akvalkyrie
The story did not end here

To all of you who are experiencing the helplessness and heartache of this horrid disease, I wanted to share that this story did not end with my daughters death. She did not go to residential. Instead, she formed her own team, on her own terms, and is still alive. In fact, she is thriving!! From the 100% chance of dying to two years later truly alive and well!

I still find myself falling in the old patterns of panic. Fourteen years of living with uncertainty, self blame, and fear are hard to fully let go of. With every illness, call home that she is stressed, or, worse yet, no calls, I hold back the old patterns and rejoice in her "normal" contact.

She is resilient. And so are we...her sisters, me, and her dad. We are better because of this nightmare of a journey. Certainly not one we would have asked for or would repeat if given the choice, but we had no choice. The plan was not our choice, but evidently it was meant to be our walk.

I want to thank the young woman who told me that there was hope. I don't know you, but you have been that voice in my head that allowed me to believe it was possible to come from certain death by starvation to looking forward to her 10 year high school class reunion. You have no idea how I hung on to your words.

With that, I wanted to be that hope for other parents. Recovery is possible. Anna told me that she just needed to be in charge and not be sent back to yet another residential facility. While they were critical in the early years of her recovery, they couldn't help her get past the shame and lack of control. She had the tools, she just had to use them to fight her "abusive spouse" named Ed. He still is that nagging voice, but she is able to temper it with logic and love. Shame has turned to embarrassment. Failure has turned into learned lessons.

I still don't know how the story ends. I do know that our lives have been changed forever. And, life goes on.

Carol1234
Thank you for the update, akvalkyrie!

Hi akvalkyrie,

Thank you. I wasn't on these forums when you were first posting about your daughter, but I am so happy that she and you and your family are in a better place. I admire the perseverance and work that you've put in to get to a place to take positives from this struggle. I'm also glad that you wrote "I still find myself falling into the old patterns of panic." That's something that has been on my mind a lot as well; my sister is doing better now after several very scary years of struggling, and I agree, it's hard to forget the fear even though she is in a much healthier place now. Hearing you say that helped clarify that thought in my head, and it's uplifting to see your resilience! Congratulations again to your daughter, yourself, and your family for your tremendous growth in this battle. It gives me so much hope to hear your continued resilience and successes!

Carol1234

2Joy2love
akvalkyrie

akvalkyrie,
I am so happy for you and Anna and the rest of your family. I have thought about you and Anna during the last two years. Thank you for telling us your stories and for giving us an update. Hope is so powerful. It is so inspiring to hear how Anna found her own team and took control of her health. It is possible to fight the ED and win.
2Joy2love