Madison Rocked The Walk!

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!

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