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.

Mulling Priorities

My job is all about helping teams be successful, which  In the ‘lingo’ of agile software development, includes “Managing your WIP” (Work in process); to ensure that teams and individuals identify and focus on the most important work that is needed right now.

Most of us have been overwhelmed at some point in our lives, and have had to make some deliberate choices about what is important NOW, and what to let go.  I recall busily mopping the kitchen floor one summer day, when my then 10-year-old son came inside and asked me to play catch.  I paused:  I looked at the floor, I looked at my son.  I dropped the mop and grabbed my mitt.  My floor stayed grimy, and that was OK.

For the past three years I have coordinated a walk to raise funds in the fight against eating disorders.  It was and is an important and personal cause, and it has been an amazing journey. I have met wonderful,  committed individuals who continue to serve as personal inspirations.  Oh, and we also raised a lot of money.  Now–it is time to start organizing the 2018 walk.  Yet, I pause. 

2018 also brings an election – an election that provides a critical opportunity to stem the tide of division and hate that has dominated the national political scene.   Nowhere is this more important than in my own backyard, where the Koch Brothers have taken well-funded aim at Senator Tammy Baldwin.

When I started the eating disorder walk, three years ago, I had zero advocacy experience.  And, aside from ranting, blogging and donating, I do not have any political experience.  Yet, I will learn;  because…. it is the most important thing, right now. 



A Bittersweet Walk

The 2017 Madison NEDA Walk, to raise funds in the fight against eating disorders was Saturday; and we exceeded our fund raising goal, raising over $25,000.

Mother Nature smiled on us with a gorgeous late summer day.  We had great music by Beth Kille to set the tone for an energetic  morning.  Speakers included Dr. Brad Smith from Rogers Memorial Hospital and Flora Csontos from Senator Tammy Baldwin’s office.  We had over 200 walkers in attendance and despite some troublesome runaway balloons and a few other minor glitches, everything went really well.

This year we included a silent auction,  — including the sale of a football with signatures from all the Packers players and coaches!  I ended up bidding on and winning a few items myself – some of which may end up as Christmas presents, since I feel a little sheepish going into a business for which I personally solicited a gift certificate, and using the gift certificate on myself.  (Really – I PAID for it!)

The local news did not cover the event itself this year, but they did invite us to do an Interview live on the Friday 4:00 news.  I think we got our point across, but this clip also serves as a reminder that no one will ever accuse me of being particularly photogenic.

The walk was bittersweet for me, as my youngest daughter, Guzzy, is currently experiencing a dip in her own roller coaster recovery journey, and was too ill to attend.  It is a  reminder that we walk not only for those that are able to be present on a beautiful September morning; but we walk for those that have lost their battles, and those that are too ill to join us.

It is not enough, but it is something.

Beauty and the Voice

Tonight I put my name in the hat at the local Moth Story Slam.  The theme was ‘beauty’.  Anyone who is interested in telling a story puts their name in the hat.  They pull out names, one at a time; until ten people have shared their stories.  Unfortunately, my name was not pulled out of the hat to share.  While I am disappointed, I’m happy to have this venue to share what would have certainly been the best story of the night!

“Beauty and the Voice”. 

Recently some friends and I were discussing movies that are different when you see them a second time – movies with a ‘twist’ at the ending:   once you know the ending, watching the movie a second time is an entirely difference experience because you see the clues you missed the first time around.  When watching Sixth Sense for a second time – you may find yourself yelling to Bruce Willis – Hey Dummy, you are DEAD!

The winter and spring of 2013, I missed a lot of clues that in retrospect were pretty obvious.  Granted, I had been distracted by my own emergency appendectomy and the arrival of my beautiful twin grand-daughters .  My youngest daughter turned 16 that spring – her nickname is Guzzy; the name my Alzheimer’s stricken mother came up one day when vainly trying to remember her correct name, and it stuck.

When I looked at Guzzy that spring I saw a beautiful and intelligent young woman.  However, she did not see her own beauty… This is what she saw, and ‘heard’ when she looked into a mirror:

You are ugly, you are sad, pathetic and FAT!      

At this point in her life, Guzzy had yet to tip the scales in triple digits.  I later learned that her goal was to get so thin that she could wrap her fingers around the largest part of her thigh;  yet even once she achieved that horrific milestone– the voice in her head telling her that she was ugly and fat only got louder.

At the time, Guzzy told me she was eating at school; she told her friends she was eating at home.  The truth was… she wasn’t much of anything at all – mostly  dill pickles and celery drenched in mustard.  She would bake treats almost every day to take to school – which fooled her brain into thinking she had eaten, because she had touched, smelled and ‘experienced’ the food in every way other than consuming it.  She would watch cooking shows obsessively, all while pacing   or jiggling at the edge of her seat – making sure she burned calories even while ‘relaxing’.  The cold spring made it easier for her to mask her alarming weight loss with baggy full coverage clothes.

Despite all these clues, I didn’t connect the dots.  No one smacked me in the head and said “Dummy – she’s starving herself”!  While I knew something I was wrong, I was  gobsmacked with the diagnosis of severe anorexia.  This led to a terrifying summer of hospitalizations, doctors, meal plans, therapies and a crash course on eating disorders.

Her diagnosis led me to ponder:  What is beauty?  We live in a   highly appearance-oriented and judgemental culture that is toxic to positive self-esteem and positive body image.   I have since talked to young women who have been complimented on their thinness up to and (incredibly) DURING their admission to the hospital to save their lives from starvation.  These impossible and unhealthy standards of beauty are cruel and dangerous.

At the end of the summer in 2013, Guzzy continued to decline.  Knowing that 20% of those with her diagnosis do not survive, we admitted her on an emergency basis to an intensive in-patient program in Minneapolis.  She received talking therapy, aroma therapy, massage therapy, dog therapy, bunny therapy, baby niece therapy, puzzle therapy, and the most important medicine of all – Food!

After almost 4 weeks of hospitalization, we saw glimmers of her former self and she was out of immediate danger.   She was released to my care;  I was on leave from work and she was on leave from school.   It was my job to feed her and it was her job to eat.

I read countless books aloud to distract her from the very real pain of eating; we played cards and did puzzles together for hours on end.  There was a memorable afternoon when after eating yet another mandatory snack, Guzzy looked down in her lap, and looked up wide-eyed and announced “I Have Cleavage”!  That was a good day!

Yes, my beautiful girl was slowly emerging from her Eating Disorder haze into a healthier and stronger version of herself.   For her 17th birthday that spring we we went to one of the most beautiful places on earth:  Hawaii!!   We were surrounded by beautiful nature:  miles of beaches, ocean vistas, we saw a breeching humpback whale and sea turtles on the beach.    But by far, the most beautiful sight of that trip was this:

My gorgeous daughter wearing a swimsuit, sitting on a blanket at the beach while happily  munching on a bag of potato chips.    Now THAT, my friends, is true beauty!








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!