by Paula | Feb 27, 2018 | Anorexia sucks, Our ED Story, Uncategorized
It wasn’t the woman’s thinness, or her choice of a small salad that gave her away. It was HOW she was eating, or rather not eating: she poked aggressively at her salad dozens of times, spreading its contents around and around before raising a tiny forkful to her lips; she wiped her fingers and mouth repeatedly with a napkin to remove any trace of grease; she picked at her food before dropping it back into the bowl or into her napkin. She exaggeratedly went through the motions of eating, while actually consuming very little.
Sitting in Panera, watching this woman out of the corner of my eye: it all came back to me in a visceral rush of memory: all those endless hours sitting at the dinner table with my daughter–watching her struggle to eat. She picked, picked, PICKED at the food, breaking it into ever smaller bits, as if she was willing it to simply disappear. Like all those afflicted with anorexia, she was a maestro at concealing food — tucking it away in unexpected places when we weren’t looking. She demonstrated great ingenuity in her tricks to deceive us into thinking she had eaten more than she had. Sometimes we caught on, other times we didn’t.
We were lucky. We had access to good doctors and therapists; I was able to work from home during much of her recovery; we had insurance that covered the enormous medical expenses; and my daughter was still a minor, so she did not have the choice to evade treatment. Even with all those advantages there was no guarantee of recovery–it’s a marathon with no finish line in sight. But, we were lucky; she did get better after a year of intensive therapy and hospitalizations.
As I write this, it is eating disorder awareness week. It’s a good week to reflect on our own experiences, and to share stories. The following is an excerpt from the NEDA (Nat’l Eating Disorder Assoc) Web Site
NEDA’s theme this year is Let’s Get Real with a goal to expand the conversation and highlight stories we don’t often hear. Our culture has complicated relationships with food, exercise, and appearance.
30 million Americans will struggle with a full-blown eating disorder and millions more will battle food and body image issues that have untold negative impacts on their lives.
But because of stigma and old stereotypes, many people don’t get the support they deserve. Join the conversation and help us raise awareness, bust myths, get people screened, and start journeys to healing.
When I started talking about my daughter’s illness, I was amazed at how many OTHER parents, co-workers, friends, family members, etc. had their OWN story of suffering to tell; they just needed someone else to start the conversation. Let’s get real, and keep the conversation going.
by Paula | Oct 6, 2016 | Anorexia sucks, Our ED Story, Uncategorized
(written after Day 2 of last week’s NEDA Conference)
The breakfasts at the NEDA conference have been amazingly awesome. Yesterday was Monica Seles, and today I ate with a group of NEDA Walk coordinators from around the country; from Seattle to Philadelphia and many points in between.
I picked up lots of pointers for next year, and met some wonderfully dedicated women. It was therapeutic to compare notes about some of the challenges associated with putting on the walks.
The very best part of the NEDA conference is the stories of the people here, including:
A young woman whose partner had a terrifying relapse — she struggled to understand and to successfully advocate for her through multiple hospitalizations; A dad whose young son is being treated for severe anorexia and is routinely met with disbelief that a boy can be afflicted; a middle-aged man who spoke of his decades-long struggle that went un-diagnosed for most of his life; The young woman who cannot find treatment in her state; the dad who intellectually understands, but cannot emotionally get his head around why his daughter won’t eat; the young woman who clawed her way to recovery against difficult odds.
Then there is the woman whose story paralleled my own in treating her anorexic teen daughter. She shared some post-recovery insights from her daughter that rang true with me:
- “Thank you for loving me enough to let me hate you” (during refeeding).
- “Recovery is hard. Choosing recovery is even harder; parents may need to choose recovery for you, until you can choose it for yourself”.
So – right now I’m inspired and worn out and wondering what on earth I’m going to do for breakfast tomorrow!
by Paula | Sep 4, 2016 | Anorexia sucks
This post is in response to Dr. Zorba Paster’s recent column in the WSJ It is possible to be too thin. This is the email I just sent:
I have serious concerns about the impact of Sunday’s column to those who may be suffering from an eating disorder and anyone struggling with body-image issues.
I am a mom of a daughter who is in recovery from severe anorexia, and am the coordinator of the annual Madison NEDA Walk to raise funds and awareness in our community in the fight against eating disorders.
Eating disorders afflict thousands in our community: The problem is serious and it is pervasive. We have lost at least three young people from our community to eating disorders this year – including one young woman in late August: Chelsea Stahlke; Unfortunately, Sunday’s column perpetuates a culture that results in even more suffering--which I am sure was NOT the intent.
Based on the title of the column, I was excited to see the issue being addressed. However, after reading it, I was disappointed and appalled on two fronts: 1) the examples of how to interpret BMI were male-oriented without any reference to impacts on women’s health and body image and: 2) the perpetuation of the harmful concept that BMI is a reliable measure of health.
The acceptable exceptions given for having a ‘high’ BMI were entirely male-oriented: citing muscular ‘guys’, soccer players, body builders and football players–along with a reference to Wisconsin ‘boys’; without acknowledging that women with ‘high’ scores can also be muscular and active, versus obese and unhealthy. Statistically, women are more likely than men to suffer from body image issues and fat-shaming.
I cannot overstate the damage caused by our national obsession with BMI scores. BMI alone is absolutely not a good indicator of health; yet, ironically, it is frequently used to turn individuals away from life-saving treatment for a serious eating disorder, if their BMI is not below the threshold set by their insurance carrier. There are many heart-breaking cases where individuals who were very sick had to get even sicker before they could receive treatment. Talk about a Catch-22?
Our national obsession with thinness is only exacerbated by focusing on this single metric, to the point that young girls and boys that do not meet the one-size-fits-all threshold are shamed and labeled. Below is an excerpt from the National Eating Disorder Association blog on the topic:
“The BMI and other such indicators are notoriously inadequate measures of an individual’s overall health and fitness. As such, the controversy over the practice of schools sending home so-called ‘fat letters’ to parents is well-founded in a concern that these reports are misleading (at best) and dangerous (at worst). Yet schools in at least 19 states are required to screen kids for obesity and report BMI scores to parents.
The danger here lies in that fact that these reports send confusing messages to parents and children about weight, which may inadvertently serve to promote unhealthy attitudes and behaviors about size and open the doors for eating disorders in an age-group that is already at risk.”
I would appreciate the opportunity to speak with Dr. Paster, on the issue. I am confident that he has the best of intentions to improve the health of everyone: including those who are being harmed by the pervasive use of BMI measures.
I also encourage Dr. Paster to consider supporting the 2016 Madison NEDA Walk. Our purpose is to raise funds and awareness in the fight against eating disorders.
by Paula | Apr 3, 2016 | Anorexia sucks, Family, Our ED Story
I had started this blog with a story to tell: the story of our family’s experiences stemming from my daughter’s serious eating disorder. The story started almost three years ago with the shocking realization that Guzzy was critically ill with a diagnoses of severe anorexia, which led to multiple hospitalizations; failed treatments; days of desperation; long weeks and months of re-feeding; the slow climb to weight restoration; the even slower climb to brain function restoration; and of her gradual reclamation of life.
Now; our paths are diverging–as mother/daughter stories must do. Guzzy is a young woman now: making more of her own choices; dealing with the stresses of life, relationships, jobs, etc. and she is taking ownership of her remaining recovery journey. For her — that is part of growing up. For me — it is part of letting go.
It isn’t easy: She lives with us, and as I have told her: a large part of the ‘mom’ job description is to worry; a tendency that is heightened by her history. We are navigating the seas of her increased independence together.
by Paula | Jan 30, 2016 | Anorexia sucks, Uncategorized
I recently learned that one of the 300 souls that participated in our September Walk against eating disorders lost her life due to complications of anorexia in December. She was 17.
Why did she die? Her passing is a grim reminder that 15- 20% of those diagnosed with anorexia will die — either directly from the affects of starvation or from suicide brought on by the despair of the illness. While we may be able to see the affects of anorexia on the body , we cannot always see the despair, anxiety and depression that underlines the condition. It is heartbreaking.
Why am I talking about this? The young woman’s mentor and teacher reached out to me because of my connection with NEDA. She wants to DO something to honor the young woman’s memory and to raise awareness in her community. She is translating her grief into activism. Some of the most dedicated eating disorder activists are those that have lost someone close to them.
What does this mean to me? It’s time to re-ignite my recently dormant inner-fire. It’s time to look at activities for Eating Disorder Awareness week (end of February); It’s time to convene the 2016 Madison NEDA Walk committee.
What does this mean to the NEDA walk? We are having our organizational kick-off in a couple weeks. We will honor the young woman’s memory and do everything in our power to prevent losing another walker. From any city. Ever again.
What does this mean for you? To all of my readers (I know there’s at least three of you): Please consider registering for the Minneapolis NEDA Walk in February Mpls NEDA Walk link… or to donate to the walk via my page: Donate here. Learn more about How your NEDA donations help. If you can’t go to Minneapolis — Stay tuned for more information about local events associated with Eating Disorder awareness week.
Be well my friends.
