Tag Archives: Eating Disorders

Madison Rocked The Walk!

Whoot!  The 2016 Madison NEDA Walk is in the books, and it’s another record breaker!  We had roughly 250 walkers– and raised over $23,000 –Thanks to all who contributed and/or walked!   (Donations are still being accepted through 11/9 at Madison Walk site). A local TV news was there, and aired a brief segment about the walk:  NBC 15 clip.

An important part of the event is the registration timeframe–there is a flurry of activity while people check-in and receive their T-shirts and totes.  (After last year’s shortages — I’m happy to report that we had plenty this year!)  Walkers had a chance to visit with sponsors, read through available educational material,  get a snack, talk with others, enter into the prize drawing, listen to the live music, etc.

Our first, and featured, speaker was Jonathan Tsipis, the UW women’s basketball coach:  He gave a great short talk about the impact of eating disorders on young people–especially athletes, and the negative messaging about their bodies that constantly bombard young women.   He was warm and engaging – both on stage and off.  (Maybe I’ll start watching basketball?)

We had two speakers who spoke of their family’s loss.  The speeches were incredibly moving — I admire them so much for having the courage to speak of their loss with a message of hope and recovery to others.

The top team raised $8,000–an amount that puts them on the leader board nationally as well; sadly, that team was driven by the loss of a much beloved family member in August.   I truly hope her family found some small comfort by honoring her memory at the walk.

A representative from NEDA, Lauren Smolner, had flown from New York to be with us;  she led us in a poignant moment of stillness and silence to remember those that have lost their battle.

The day had started cold and crispy – but the sun made a much-appreciated appearance by walk time.  The walk is a 1 mile stroll around around Vilas Park–an incredibly beautiful venue;  you can see pictures on the Walk FB page.  The walk is symbolic and reflective- versus being any sort of race.  (I later learned that one participant showed up in race gear, expecting this to be some sort of 5K event – too funny!)

Upon the walkers return to the park, we held a drawing to award the many prizes that were donated by  local businesses; many walkers received restaurant gift certificates, spa certificates, etc.

An enormous thank you to: the walk sponsors, in-kind donors, committee members, volunteers, family members, speakers and the WALKERS who helped make this year’s NEDA walk both a meaningful experience and a successful fund raiser.

Together — we did something special.

2016 NEDA conference Day 1

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.

Tragic Consequences

Readers of this blog know that I coordinate an annual NEDA Walk in my hometown of Madison, WI to raise funds and awareness in the fight against eating disorders. As such– I am the contact person listed on the website.

Recently I receive an email that stopped me in my tracks — it was from a relative of a young woman from our community that recently passed away from complications of her eating disorder–after struggling for many years.  The relative requested materials about our walk to solicit donations in memory of their loved one.

When I received the email I was at an outdoor music festival, surrounded by music and the hum of a very vibrant crowd–including many friends.  It was  surreal–I sadly reflected on this  woman’s tragic passing, while simultaneously being bombarded by the sights and sounds of a lively festival.

After a follow-up phone call to the relative to offer condolences and to arrange a meeting–I wandered the festival in a bit of a daze.   I was (and am) awed by the family’s courage to use their personal tragedy to help others, while feeling an obligation (and privilege) to make this walk a special and meaningful event.

This loss has served to underscore the high stakes of the fight against eating disorders:  what we do is important, and our walk does make a difference — to this young woman’s family as well as the hundreds, if not thousands, of other sufferers and their family’s in our community.  We are providing an important rallying point to demonstrate support and compassion; advocacy and awareness at a time that our community is reeling from this recent loss.

I watch contributions to the walk increase with mixed emotions–knowing that the current uptick is driven by loss.  Yet, what better way to honor her memory?

We will be incorporating a moment of silence for three young women who lost their battles during our walk.  It will be somber, it will be sad.  These losses remind us that the stakes are high.

The war against eating disorders needs warriors of all types.  I fight with a blog and a clipboard (with a large dose of tenacity thrown in for good measure).   Others fight by providing treatment to individuals and their families; or through lobbying, or through research, or through writing, or by sharing their recovery stories, or through organizations such as NEDA (National Eating Disorder Association.   Others fight by donating to events, such as our walk.

I understand there are many good causes ‘out there’.  People tend to participate and get involved in causes that are close to their own hearts.  Dear reader – I hope you have a cause that you are passionate about, something that is bigger than yourself.  Giving of ourselves keeps us human, keeps us humble and enriches our souls.

 

Getting Mad at the Sunday paper

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.

9 Eating Disorder Truths

This was recently posted by the Academy for Eating Disorders–based on decades of experience treating eating disorders.  It directly rebuffs some of the most common myths and mis-perceptions about eating disorders.  I offer it here, along with  my own personal commentary (prefixed by ‘PP’); if you only have time to read one of these – read the last one, its SOOO important!  And when you are done reading, sign up for the NEDA walk closest to you.

  1. Many people with eating disorders look healthy, yet may be extremely ill. PP:  The misconception that you have to look like a skeleton to have a eating disorder can make it more difficult for sufferer’s to seek out treatment — many are told ‘ they don’t look like they have an eating disorder’; when they try to get help.
  2. Families are not to blame and can be the patients’ and providers best allies in treatment.  PP:  Unfortunately, there is still a cultural propensity to blame the parents (often the mother) when a young person is diagnosed.  In reality – Moms and dads are usually their child’s strongest advocate against the eating disorders.  They need support… in the same way a parent dealing with the serious illness of their child needs support.
  3. An eating disorder diagnosis is a health crisis that disrupts personal and family functioning.   PP:  Boy Howdy;  they aren’t kidding.   If anyone in your family has been diagnosed with a serious illness, such as cancer… you can relate.
  4. Eating Disorders are not choices, but serious biologically influenced illnesses.  PP: Telling a sufferer to ‘get over it and just eat normally! ‘can be the equivalent of demanding that I do the splits.  It isn’t that I don’t want to… but I am unable to.   Hollering and demanding that the behavior change is likely only to make the sufferer feel worse about their inability to meet your demands; deepening their anxiety.
  5. Eating Disorders affect people of all genders, ages, races, ethnicities, body shapes, weights, sexual orientation and socioeconomic statuses.  PP:  Unfortunately many, many sufferers will not seek treatment because they don’t think EDs affect someone like them; OR they may encounter serious obstacles when seeking treatment such as:  providers who don’t take them seriously (because they don’t fit the stereotype of someone with an ED):  lack of available treatment in their area and/or; lack of affordable treatment.
  6. Eating Disorders carry an increased risk for both suicide and medical complications.  PP: Have I mentioned that eating disorders SUCK?
  7. Genes and environment play important roles in the development of Eating Disorders.
  8. Genes alone do not predict who will develop eating disorders.  PP:  This seems a bit redundant with #7… but OK.
  9. Full recovery IS POSSIBLE!!! Early detection and intervention are important.   PP: There is HOPE; there is life after ED!

Why?

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.

Dancing with the Stars v. NPR

I don’t watch very much TV.  However, one of my biggest guilty pleasures is Dancing With the Stars on Monday nights.   Dan shakes his head in wonder at his  normally TV-averse wife settling in with glee for such a mindlessly cheesy display.

Monday night, two aspects of my own world unexpectedly collided, when one of the (quasi) stars,  Alexa PenaVega, was dancing to a song “Make It Rain”; which is about dealing with inner demons.  She shared her own 6 year struggle with bulemia that started when a director called her fat when she was a child actor.   Alexa proceeded to perform an astonishing contemporary routine exemplifying the struggle to break free from her eating disorder.

Alexa was incredibly brave to discuss her eating disorder in front of such a large audience, and in such a positive and truly beautiful way.  Unfortunately, Alexa’s perfect score and standing ovation for her dance didn’t prevent her from being voted off the dance floor later that night–a vote that was based on her performance from the prior week.  While I was sad to see her go, I was thrilled that she set such a positive example for others that may be watching and silently struggling, thinking they are alone in their pain.   What a great example of ED advocacy in the mainstream media.

A few days later I was listening to NPR – I love NPR, and I do NOT consider that a guilty pleasure. Most of the time, I find their reporting fair, intelligent and interesting… at least I did until Wednesday when they aired a report on the rising incidence of obesity in America.  Even NPR didn’t challenge the notion that skinny=healthy; even NPR didn’t cite any actual science around the notion (which many studies have refuted)  that heavier adults have poorer health that their skinny counterparts;   even NPR got caught up the blame game for people who struggle with their weight;  even NPR didn’t spend a single second of air time addressing the food industry’s culpability in saturating our collective diets with added sugars in most of the foods we buy.  Even NPR didn’t point out that the single accepted measure (BMI) for obesity is horribly flawed,  Even NPR bought into one of the single biggest lies of our culture, which is that skinny people are disciplined, good and healthy and heavy people have no self control and are lazy.   Can you tell that it pissed me off?

This week,  I have greater respect for Dancing With the Stars and less Respect for NPR.   I can now fool myself into thinking I am watching DWTS for its socially redeeming features;  versus as a mindless escape.  Nah – I don’t think I can sell that one!

 

Madison Rocked the NEDA Walk!

Lake before walk 2015 Fam at NEDADawn n Alec at NEDA walk

At the end of the day – It’s all about the people; and the people of Madison came through big time for our National Eating Disorder Walk!   I could not be happier or prouder of the result.

The weather and the venue were perfect.  There is nothing as sweet as a warm September day in Wisconsin; and there is nothing as beautiful as the views by Madison’s lakes.  If you could overlook the backdrop of the dumpsters behind our registration tables–the other vistas were gorgeous.

The only committee member to actually arrive at the venue on time to setup, took a gorgeous picture of the lake next to Vilas park;  a picture of calm before the crowd began to arrive.  And… It. Was. A. Crowd!   We had over 300 people attend the walk – well over anyone’s expectations when we started out last winter.

The first crisis of the day was immediate and urgent.  The bathrooms were locked.   My Son, Ben, did his first good deed of the day by tracking down a park ranger to unlock them.  His second good deed of the day was bringing his wife, Jessica, who was a terrific help at the chaotic on-site registration desk, along with my daughter, Kelly.  Guzzy finalized the volunteer troupe of my kids, by staffing the prize table with her BF and with Ben.  Hubby Dan also stepped up big time; at one point giving the shirt off his back to a volunteer who needed one for a photo op. (Giving us all a cheap thrill)

Other committee members  recruited family members to flesh out our core team to about 20 volunteeers.  We needed all of them!  We had music, we had refreshments, we had fliers and prizes from our sponsors, we had temporary tattos, we had loads of prizes, we had bandanas for the doggies, and once the speakers got underway–we had tears and we had hugs.

A local news channel covered the event;  we appeared in a 15 second blurb on the evening news.  If you look really closely you can see me clutching a clipboard and Guzzy strutting her stuff while carrying the banner with Dave leading the walk. See it at News coverage.   Although the news anchor said we hoped to raise $10,000… we have raised over $18,000 and I expect that to climb to $19,000 by the time all the after-walk donations are in.

I Emceed the event, which required frequent navigation of the maze atop our small stage; which contained a variety of sound and musical equipment.  Two of our lessons learned for next year:  Rent a bigger stage and get a bigger sound system — they had a  trouble hearing in the back.

Our first speaker was Dave.  Dave is also a member of the walk committee AND was our TOP fund-raiser after coming on like gang-busters in the week preceding the walk. Dave’s story was both incredibly sad and incredibly inspiring.  He was/is a brilliant young man with a bright future; but at one point he lost almost everything due to his eating disorder; but he has since managed to take back control over his own life.  Later during the event, a young man approached me and told me how much Dave’s story meant to him.  I am hoping the two of them connected in person.

The other speakers were also fantastic – everyone showed up (which is always a concern) and did a great job.  A local pizzaria delivered 10 large pizzas at the end of the event (JUST in time); all of which were quickly devoured.

Our contacts at NEDA HQ watched our progress with interest – we were one of several walks being held last weekend, and the comment that was shared with me was “Madison is Kicking Butt”!   Yah… That’s Right — we kicked us some ED butt and it felt good!

The Home Stretch!

Yesterday I received a text from my husband asking why there were 6 large cartons on our front stoop.  A quick call confirmed that these are the National Eating Disorder Association tote bags that we will be filling with goodies and giving away at the Madison NEDA Walk.  In addition to 6 cartons of tote bags, I am also struggling to stash away the many in-kind donations and prizes we have received.  My closets are bulging (a good problem to have).

I received the ‘tote text’ just as I was arriving at the home of one of the walk committee members for an in-person planning session with the whole team.  With everyone’s busy lives, we have struggled to meet in person, so it was great that almost all of us (5 out of 6) were able to be there in person; the room buzzed with the resultant energy (although the lightening storm outside may have also contributed).  This group has enough ideas and energy for 6 walks!

With the walk only a month away, we are now pulling out all the stops to promote the walk, align volunteers and finalize logistics.  The teamwork is great, and it is  gratifying to see the walker count and donations steadily creeping up and up.  It feels really good to be doing something tangible in the fight against eating disorders.   We are going to line the NEDA Walk route with  Eating Disorder related facts–which help keep us all focused on WHY we are doing this.  Here is a sampling:

  • In the US, 20 million women and 10 million men suffer from a clinically significant eating disorder at some time in their life.
  • 40-60% of ELEMENTARY school girls aged 6-12 are concerned about their weight or about becoming too fat.
  • Anorexia Nervosa has the highest premature mortality rate of any psychiatric disorder.  (that’s the one that sends shivers up and down MY spine)
  • Eating Disorders affect over 30 million people, but only receive $28 million in government funding for research.  In contrast, Alzheimer’s affects 5.1 million people and receives $450 million.
  • The average American woman is 5’4″ tall and weighs 165 pounds.  The average Miss America winner is 5’7″ and weighs 121 pounds.   Fashion models are thinner than 98% of American women.
  • 95% of all dieters will regain their lost weight in 1-5 years.
  • Eating Disorders don’t discriminate.  They affect Whites, Hispanics, African Americans, and Asians at similar rates.
  • The treatment costs of an eating disorder in the US ranges from $500 to $2,000 a day.
  • Dieting and body dissatisfaction are among the greatest risk factors for the development of an eating disorder.

Another local fact, is that there are very limited treatment options in our own community — most families need to go to Milwaukee or Minneapolis for treatment.  That is a real hardship for families as well as a barrier for treatment.

Even as I continue to promote the walk and get tangled up in the details of planning this event;  it is important to keep focused on WHY we walk.  It is our personal experiences with eating disorders that  motivate many of us.  In my case, I started walking for Guzzy, but I continue forward on behalf of everyone’s sons and daughters.   How can I not?

 

A mom’s journey from denial to advocacy

When my beautiful daughter was diagnosed with severe anorexia in 2013, I was gobsmacked.  The first days were spent coming up with a hundred irrational rationalizations and alternative reasons for her severe weight loss.  Soon enough our new reality sank in: this was serious and this was not going away quickly or easily.

We embarked on a journey to a then foreign land of meal plans, therapies, and hospitalizations.  For me it was an immersion-like education program in EDs:  I camped out in her hospital room and talked to all the providers and therapists.  I read voraciously and trolled the internet for information during the wee hours of the night.  Little did I know that, for me, this journey would continue beyond my daughter’s eventual recovery.

The more I learned, the more I wanted to get involved in advocacy work.  Once again,  I came up with a hundred rationalizations and reasons for NOT getting involved:  I am too busy and don’t have time;  I’m ‘just’ a mom—there are others who are more qualified;   What if I make people uncomfortable; What if people judge me because MY daughter was sick; and what exactly CAN I do?

While I was stuck in waffle mode; I read Amy Poehler’s book:  “Yes, Please”.  When asked how she manages her own hectic schedule; her reply went right to the heart of my personal dilemma:

“You do it because the doing of the thing IS the thing. The doing is the thing. The talking and worrying and thinking is not the thing. That is what I know. “

The DOING is the thing.  That struck a chord.  I was (almost) ready to get off of the proverbial pot.  Then I went to the 2014 NEDA Conference in San Antonio.   The Conference was amazing.  I was able to meet and speak with other parents, with providers and with individuals in various stages of recovery.  We shared stories: Stories of loss; stories of unconditional love and support; stories of suffering; stories of hope; stories that would break your heart; and stories that would lift you up.

Once back home, I was pumped up, but was still wondering–what can I do?   I’m not a doc or a therapist, I’m an IT Project manager for heaven’s sakes.  I plan and organize stuff.  Then I heard it- that CLICK you hear in your own head when the penny drops and a solution to a puzzle appears:  I can coordinate a walk.

I learned that NEDA provides a HUGE amount of support for its walks; including an email blast to recruit members for a walk committee. I was fortunate enough to get awesome volunteers for my committee (really – they ARE the secret sauce).   NEDA provides step by step guidelines and support from a staff member; it’s been wonderful to know that whenever I have a question I can send an email or pick up the phone.

We formed our Walk committee early — in January and our walk is in September.  This gave us time to familiarize ourselves with the walk process, get to know each other, and to develop and share great ideas.   Have I mentioned that my committee is AWESOME?

Coordinating this walk has been a journey of discovery for all of us.  We’ve all had to step out of our comfort zone to pick up the phone to call a media contact, a potential speaker, or a donor. Despite an initial dry spell in our efforts, we doubled down, refined our pitch, and are now reaping the benefits in positive responses from in-kind donations, speakers and financial support.  Heck, we even got some caps and totes from the Packers to give away as prizes!

Every step of the journey we think of new ideas: some of which will bear fruit, and others that are filed away for ‘next time’.  As I write this, our walk is less than two months away, and I am really pumped up to see the walker registrations and donations climb as the event gets closer.  We’ve laid the groundwork for an AWESOME event.   Of course small things can (and probably will) go wrong—it might rain, a speaker might bomb; I might get so nervous that I pee myself; but we’ll cope with whatever happens.

If I can coordinate a walk – so can you!  My advice is to not limit yourself with self-doubts.  I had exactly zero prior experience with non-profit charity fund raisers.  If you have decent organizational and communication skills and a passionate commitment to preventing and treating eating disorders:  You already have what it takes.  NEDA can and will provide tools and guidance along the way.

That’s my story and my pitch.  If you are interested in tracking the progress of our walk – check it out at Madison NEDA Walk.  Madison is going to ROCK this Walk!