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 29, 2016 | Anorexia sucks, Our ED Story
I am in Chicago for the annual NEDA conference, and am a little tipsy from the wine at the kick-off dinner as I write this. MONICA SELES IS HERE!!! I will try to be first in line for ‘breakfast with Monica’ tomorrow to buy her book about her experiences living with an eating disorder and to hear her speak. Perhaps I will bring her a copy of my Blog Entry (see http://paula-ponders.com/monica-seles-speaks-out-against-eds/ ) about her, as well as a tennis ball for her to sign (I happened to have one in my car – go figure!)
Aside from meeting tennis icons; the thing I love most about the NEDA conference is hearing people’s stories. Tonight I enjoyed a class of wine with a table of parents, and then went to dinner, where I sat with a group of dedicated young women who are all professionally involved in fighting eating disorders one way or another.
First were the moms… they break my heart. We shared our stories and our heartache. It’s a unique kind of suffering to watch your child self-destruct despite all your love and support. The moms (and dads) at THIS conference understand that all too well. I heard about: the 22 year old bi-polar and anorexic daughter who won’t take her meds or go to her counseling appointments; the insurance company who won’t pay for much-needed treatment; the child who committed suicide in the hospital while a nurse stepped away from her station. So very sad.
Often, parents feel a sense of isolation, guilt and shame; compounding their sense of helplessness and despair. We come together to console, commiserate and support. We understand and we care. It is not enough, but it is something.
Then… a walk down Wacker Avenue, past the Trump Tower (I will try to refrain from political commentary) to Chuck’s restaurant. I ended up at a table of young, attractive and vibrant women. One is an athletic director and coach in Portland Oregon – she strives to promote healthy body image among her student athletes–which can be challenging in a co-ed sport requiring swimsuits. She advises that one of the challenges with girl athletes is that they need ‘permission’ to be aggressive. The challenge with boys is that they need to manage their aggressive tendancies. Interesting.
Many of the young women work for non-profits: one manages an on-line community to support those suffering from eating disorders as a positive and constructive alternative to the disgusting ‘pro-ana’ sites on the web. A couple other women are lobbyists that promote legislation to support funding and coverage for mental health issues. Another is a program director for an eating disorder treatment center. Wow – that is a lot of inspiring commitment!
I hope they all vote.
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.
by Paula | Oct 25, 2014 | Anorexia sucks
Oh, the stories. Stories that break your heart; stories that lift you up. Stories of lost years, suffering and sacrifice; but above all: Stories of Hope and Inspiration.
Breakfast at the National Eating Disorder conference: A table full of beautiful and compassionate young women from all over the US; all of whom have recovered from a devastating eating disorder and are commited to sharing their stories and energies to help others. Stories of misery, hospitalizations, therapies, treatments, interventions. (more…)
by Paula | Oct 16, 2014 | Anorexia sucks
This has been an amazing day, I am already fired up from the inspirational people I’ve met this evening at the National Eating Disorder Association Conference. My brain is already brimming and the conference has barely started.
My first ‘AHA’ moment of the day occured as I was waiting for a flight in the Houston airport. I have been reading ‘The Children’s Act’ by Ian McEwan. The narrator is a judge who decides a difficult case wherein a family’s religious beliefs prevent them from agreeing to a life-saving treatment for their 17 year old son. The hospital appeals to the courts to allow the treatment, and after significant deliberation (SPOILER ALERT), the judge rules that the hospital can administer the treatment. Tough decision – right? After his treatment and recovery, the young man writes the judge with the insight that it was actually the best possible outcome; the family held true to their religious beliefs AND his life was saved, since the decision for treatment was TAKEN OUT OF THEIR HANDS. Talk about your Win Win situation! (SPOILER ALERT postscript – the rest of the book isn’t quite so uplifting… but I chose to ignore that for purposes of this specific epiphany.)
When I read that part, I got chills, because that is EXACTLY what it was like to stand up to my daughter’s eating disorder. ED wouldn’t let my daughter choose to eat, so we took that decision away from her in order to provide the life-saving treatment she needed. I have read accounts of sufferers expressing relief when their parents ‘made’ them eat; allowing them to eat without debilitating anxiety and guilt — because they had no choice in the matter, no matter how loudly ED screamed in their ear. A win, win, lose situation, with ED being the loser.
The conference hotel is in downtown San Antonio – it is absolutely beautiful (and it better be at these prices!) We had some introductory sessions this evening, and I’ve met several beautiful young ladies that are recovered and helping others in a variety of ways. I have also met several other parents, including a dad who shared his heart-breaking story about his 17 year old daughter who continues to struggle after several rounds of hospitalization.
There are many exhibitors that are largely treatment providers from around the country. Next year I want to set up a stand and sell ED punching bags and dart boards. I think they would sell like hot cakes!
