Category Archives: Eating Disorders Suck

My perspective as a parent and as a community advocate in the fight against eating disorders

Eating Disorders SUCK!!

This is the first of several posts relating our family’s Eating Disorder Journey — originally posted in August, 2014.

I wish I had a punching bag with the letters “ED” on it.  I’d punch the snot out of it several times a day; after struggling through another meal with my anorexic daughter.

I knew nothing about eating disorders before my beautiful daughter stopped eating.  At 16 she had always been slender; and after a puzzling choice to become a vegetarian her weight plummeted.   She told us she was eating at school and/or with friends.  She told friends she was eating at home.  In truth, she wasn’t eating much at all.  I learned much later that her goal was to be under 200 calories a day; which is less than our brains need to minimally function each day.

She couldn’t hold still, she was in constant movement.  She couldn’t sit as she watched cooking shows on TV obsessively.  She prepared treats for school every day–treats she never ate; although the act of preparing the food helped fool her brain into thinking she had eaten.

She was officially diagnosed with anorexia in June of 2013, in a horrific series of discoveries and appointments with her woefully ill-informed doctor.  Thankfully, at the time I did not know that 20% of anorexics will die from the disease; I (and her dad and stepdad) were already awash in fear and uncertainty.

The summer became a blur of doctors, labs, psychiatrists, counselors, hospitalizations, therapies, nutritionists and meal plans.   We were driving her 150 miles (round trip) each day to her program, and I was working remotely in the offices of a former employer in the area — as much as I could.

Despite all this, she declined dangerously throughout the summer.   By August, her life was in imminent danger; we admitted her into an inpatient program over 250 miles from home, where she was treated by one of the only psychiatrists in the Midwest who is certified in Family Based Therapy for Eating Disorders (aka the Maudsley approach);  Dr. Julie Lesser.

By this time, our daughter was critically underweight and severely depressed. She slept. She cried. She ate. We did puzzles. She slept. She went to therapy. She cried. She ate. We played cards (LOTS of cards). She ate. We read books. She slept. She ate. She received dog therapy, massage therapy, daily psychiatric visits, group counseling, aroma therapy, family therapy, baby-niece therapy; along with her essential medicine: three meals and two snacks a day. She was closely monitored at all times; there were no gaps for the eating disorder to sneak in undetected.  I was with her every day- spending the nights with my oldest daughter and her family.

Eventually…. we were able to see occasional glimmers of her former self: she smiled and even laughed now and then. Her medical condition had improved, although she was still underweight. In September, she was well enough to go home to continue her re-feeding under my care. I was scared… but determined.

The immediate crisis was behind us, but there was a very long road ahead.

See Eating Disorders Suck Part 2 to read more about our journey.

Summer Inspiration

Summer is here in full force and I have the mosquito bites to prove it. (I seem to get tastier as I get older.)  June brings transitions as schools let out and schedules shift into summer mode.  For me, June means  outdoor music, outdoor tennis, and the Project Mar:a Art jam.

My USTA tennis team is in full swing (pun intended) and we’ve already had several matches.  We were short-staffed last week, and our captain was desperate enough to put me in on the singles court against a much younger opponent.  Gak – I had my misgivings, but was willing to give it a go.  We ended up having a great match, and after two plus  sweaty hours, I managed to eke out a close victory .  We were the last ones on the court, and our match was the decider among the teams.  Good thing i didn’t know that at the time!

Saturday night was an art jam  sponsored by Project Mar:a.  The use of the semicolon instead of an ‘i’ is intentional.  The Semicolon has become a symbol of a movement dedicated to presenting hope and love to those struggling with a variety of mental illnesses.  “A semicolon is used when an author could’ve chosen to end their sentence, but chose not to.  The author is you and the sentence is your life”  (from Project Semicolon)

The featured speaker was Dawn Smith-Theodore, author of “Tutu Thin” who spoke of her own struggles, and the pervasiveness of eating disorders among dancers.  There were some local performers and speakers, including myself–I spoke of my experiences as a mother and as an eating disorder advocate.

I was pleasantly surprised.  I had gone to the art jam last year, and it was a nice, but very small-scale affair.  This year, they used the High School stage for several performances, and had about 50ish people in attendance.  It  has been several decades since I was on a High School stage, and I had to fight the temptation to break into a song from Fiddler on the Roof.

After my speech, a lovely young woman approached me in tears, and asked for my phone number.  She’s been struggling for 15 years with anorexia and she wanted to give my number to her mom — so her mom could have someone who ‘understands’ to talk with.  We chatted a bit, and hugged.  You just never know what people are going through.

While I was at the art jam, Dan went to a live rock concert downtown – where he ran into several friends.  All in all, we both had great evenings.

 

 

Eating Right

I entered a 14 day challenge where I work out, to adopt 10 healthy habits for 14 days.  This includes drinking water (LOTS of water), no alcohol, no soda, enough sleep, eating 6 servings of veggies a day, exercising, stretching, keeping a gratitude journal, and NO sugar.

Somewhat surprisingly, the toughest item for me has been ‘no sugar’ .  I already exercise and journal regularly;  I’ve gotten used to the water (and peeing all the dang time); and so far, have eliminated soda and alcohol from my diet, while adding more veggies.  I am regularly scoring 8 or 9 out of the 10 point scale.

However, my sweet tooth is a well-deserved legend in our household. There have been a couple days I’ve especially gone overboard with the twisted logic of “You’ve already blown it for today, so go ahead and splurge!”   A more healthy response would be:  That was a yummy muffin; instead of:  “Dang, I blew it already today, so I might as well go ahead and have the jumbo bag of M&Ms too”.

I have concluded that for me the threshold of zero added sugar is counter-productive and unrealistic, and I am done beating myself up over it.

Looking through another lens: as an eating disorder advocate, I am  skeptical of dietary restrictions; even when given with the best of intentions.  The very act of restricting can be triggering for anyone with a history or tendancy towards excessive restricting or binge eating.   My own response is on the ‘binge’ side of the spectrum.

Studies show that dieting for weight loss is unsustainable and unhealthy; leading to yo-yo results and counter-productive metabolic changes.  The truth is, what is a healthy weight for one person, is not necessarily healthy (or sustainable) for the next person.

There have been a several occasions where I’ve encountered so-called experts giving advice on how to reduce calories; with the assumption that ‘everyone’ is interested in losing weight. I try to diplomatically challenge their views — with mixed results.  Many people are completely entrenched in the believe system that ‘everyone’ should be skinny and that skinny = good health.

I recall a conversation with a young woman who was hospitalized several times for being severely underweight.  Even when she was close to dying, she continued to received a barrage of compliments on her figure and attention from men.

It is a very disturbing reflection on our society that a woman who is severely underweight and near death is considered the epitomy of attractiveness.

As an eating disorder advocate, I have heard versions of this story many times.  The pervasive attitude that skinny = healthy is also a barrier to recovery, as sufferers are reluctant to lose that identity.

The notion that we should all be skinny is not realistic or desirable. We should not all aspire to be size twos.  I will never look like Gwyneth Paltrow, no matter how many 14 Day challenges I do.  My short, curvy body is strong and healthy and is just right for ME.  We should focus on our own health and wellness, without comparison to or judgement of others.

It can be good to challenge ourselves to improve our habits; with a goal of being a better version of ourselves.  Now, if you’ll excuse me, I’m going to walk the dog and then have a yummy spinach salad:  right after I take a pee.

 

Rockin the Mall of America

It’s Eating Disorder Awareness Week, and what better place to kick it off than the Mall of America?   The mall was rocking with over 1,000 walkers joining the fight against eating disorders.  The stage area was jam-packed and the intensity was high.
There were some Disney characters in attendance (although I highly doubt they were Disney-sanctioned; since several of them looked a bit frayed around the edges). In addition to several princesses, there was a very tall lanky version of Jack Sparrow, the efemminate pirate;  Guzzy and several other young ladies took selfies with the Johnny Depp look-alike.
I had a quick flash-back to the first time I attended a Twin Cities NEDA walk.  It was 3 days after my daughter, Guzzy, had been discharged from the Minneapolils Children’s hospital for life-saving treatment of her eating disorder.  This was in September 2013, before the walk moved to February, to coincide with the start of Eating Disorder Awareness week.   There were probably 150 of us huddled around a small stage for that walk, listening to a very technical (and exceptionally boring) speech by Guzzy’s psychiatrist.   The registration was unorganized and the ‘walk’ consisted of wandering around the inside amusement park.
From humble beginnings, great things can (and do) emerge.  I’m sure the organizers of that first walk had no idea that the Twin Cities walk would grow into the mega-event of last Sunday.
Standing in the Mall Sunday we found ourselves surrounded by an incredibly diverse crowd, many of whom were there to support a loved one:  a child, a parent, a sister, a brother, a friend, a lover, a spouse; we all came together in a demonstration of support and caring.
One of the speakers, Matt, shared his experience of going on a ‘field trip’ with other teens from his residential treatment program who were  wheel-chair bound.  On the bus to the destination, a few of the teens were comparing notes about what they would tell people if/when asked why they were in wheelchairs.  The plan was to tell people they had a heart condition– to avoid the stigma attached to having an eating disorder.   Matt had an ephiphany; why SHOULD they lie about their disease?  How can we begin to fight or destigmatize something if we cannot name it?
I admire Matt, Guzzy, Monica Seles, and the many others who are brave enough to NAME their illness and tell their stories; in hopes that others who may be suffering in the shadows, will find courage and hope in their words.
The 2017 Madison NEDA Walk  will be on Saturday, September 16th.  We haven’t set the program yet, but, maybe I can see if any of the Disney Princesses are available on that day.

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.

Neda Conference Day 2: Another great breakfast

(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!

OMG – I Met Monica Seles!

I was literally the first person to claim a seat for ‘breakfast with Monica’ today at the NEDA Conference.  I felt like a shameless groupie!  I wore my tennis earrings for the occasion.

When Monica took the stage: my first impression was: boy, is she tall!  Monica spoke very articulately about her struggles with Binge Eating Disorder; which she suffered from for many years.  While her family and coaches knew something was wrong, they did not understand that this is a medical condition that cannot simply be ‘stopped’.  So disciplined and controlled in most aspects of her life, she couldn’t understand why she could not control this element of her life.  It baffled her and those in her inner circle.

For many years, Monica’s obsession was not to win the next grand slam; but to get thinner, as she struggled with body image and binge eating demons.  It is particularly difficult to take a ‘time out’ to deal with a medical issue when you are a professional athlete.  You have contractual obligations, your winnings are needed to support your family and your staff and your staff’s family.  That’s a lot of pressure for a teenager!  She knew she had a problem, but didn’t know what to do about it–no one in circle really took it seriously.  Finally… eventually, she had a frank conversation with her doctor and began the healing process.

During the Q&A, I submitted two questions:  1) Her thoughts on the body-shaming directed at female athletes, including Serena and;  2)  why Monica used a two-handed forehand.  Only # 2 was posed by the moderator:  Monica laughed and said that was because when she started playing, she was playing with an adult sized racquet and needed two hands to control it — and it became a habit.

We were all given a copy of her book:  “Get a Grip”; and she stayed to sign copies.  I gushed up to her with a copy of my  Monica Seles Post  from March 2015 (I’m sure she will treasure it always). She inscribed my book with:  to Paula: keep Swinging, I’ll see you on the courts”.  She couldn’t have been more gracious!

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.