Category Archives: Our ED Story

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.

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!

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.

My Club

It occurs to me that I am in a club  that I didn’t sign up for.  There are clubs for parents of multiples, there are clubs for parents of children with Downs Syndrom;  there should be a club for parents of children with mental illnesses.  It is reminiscent of the story Welcome to Holland; wherein the mother plans a trip to Italy, but wakes up to find herself in Holland — their new baby has a disability and the ‘planned’ itinerary to go to Italy has been altered significantly, she finds herself in Holland – living a different kind of life than she expected.

In my upper-middle-class community we have clear expectations for our young people as they launch into the world.  High school with honors is to be followed by college with honors (or at least without dishonor);   they are expected to successfully navigate through the complex social jungle that is high school (preferably enjoying every minute of these ‘salad days with a group of popular and attractive friends);  followed by navigating the temptations and choices offered by a college setting; usually  while living away from the watchful eye of their parents for the first time.

In truth, neither I or any of my kids followed this ‘golden’ path.  With apologies to my children: they inherited a number of characteristics from my side of the family:  This includes the shortness gene, a  geek gene, and a  varied dose of whatever gene contributes to depression.

Readers of this blog know that my youngest child, Guzzy, is in recovery from a serious eating disorder.  The path behind her is rocky, and the path in front of her is hazy.   Last night I spoke with a woman who lost a daughter to her eating disorder at an event they were sponsoring to raise funds  in their daughter’s memory.  As I hugged her tightly, I thanked her for doing this.  Her repy was “what else can I do? crawl into a hole?.”

As a parent, we go on– while supporting our children (or honoring their memory) as best we can.  Friends  who have not gone down this path do not know what it is like, and do not understand–through no fault of their own:  It’s akin to explaining what it’s like to be a parent to someone who has never spent time with a child.

Personally, I struggle with how to answer the question:  “How is Guzzy”?   I generally say “Fine, she’s doing Fine”.  What else can I Say?  Perhaps I could offer that she is swimming somewhere between Italy and Holland and I am yelling advice and support from the shore–advice that is most often blown away with the wind.

 

 

A Shift in the Narrative

I had started this blog with a story to tell:  the story of our family’s experiences stemming from my daughter’s serious eating disorder.  The story started almost three years ago with the shocking realization that Guzzy was critically ill with a diagnoses of severe anorexia, which led to multiple hospitalizations; failed treatments; days of desperation; long weeks and months of re-feeding;  the slow climb to weight restoration; the even slower climb to brain function restoration; and of her gradual reclamation of life.

Now; our paths are diverging–as mother/daughter stories must do.  Guzzy is a young woman now: making more of her own choices; dealing with the stresses of life, relationships,  jobs, etc. and she is taking ownership of her remaining recovery journey.  For her — that is part of growing up.  For me — it is part of letting go.

It isn’t easy:  She lives with us, and as I have told her:  a large part of the ‘mom’ job description is to worry; a tendency that is heightened by her history.   We are navigating the seas of her increased independence together.

The Middle Ground

It’s been awhile since I’ve posted.  Guzzy’s story of recovery is on-going and belongs to her to write.  She is somewhere in the middle ground between her illness and a full recovery.

On Facebook today, I stumbled across a blog about the Recovery Middle Ground.  The blog resonated with me; I know many people who are ‘mostly’ better, living reasonably normal lives;  but continuing to struggle with their eating disorder.   Full recovery IS possible; but it is not predictable or linear.

A couple of week’s ago, Dan, Guzzy and I participated in the Twin Cities NEDA Walk; and I’ve recently started to shift into planning mode for the Madison 2016 walk.  Getting busy with this year’s walk feels good – it feels good to start the DOING.

NEDA Conference – Year 2

It was my second year of attendance at the NEDA annual conference.  This year I took Guzzy with me to San Diego as well as my husband, Dan–we extended our trip to combine the conference with a couple days of sight-seeing.

San Diego is jaw-dropping gorgeous.  The hotel for the conference was on the bay and the weather was perfect for 4 of our 5 days there.  On the 5th day, San Diego received approximately 1/5 of its annual rainfall. Goodbye whale watching tour, hello museums at Balboa park!

The conference got off to a great start with breakfast the first morning.  Sitting right behind us was Jenni Schaefer — a well-known author and acclaimed speaker in the Eating Disorder world. In recovery herself, Jenni has written what is *IMO) the best book available from the perspective of someone who has been there:  Life Without ED.   Jenni had donated a signed copy of the book to our walk and she speaks at some of the bigger NEDA Walk venues around the country.  She is famous in the ED world – -and she was sitting 5 feet away!

So–I got up and introduced myself to her.  I had no sooner gotten out the words ‘coordinator of the Madison Walk’ when she announced — “Oh, I would Love to speak at the Madison Walk!”   Obviously I was thrilled–we chatted a bit more; and after that I was too nervous to talk to her during the rest of the conference for fear she would change her mind!    Assuming we can coordinate the schedule; we will have an AMAZING speaker for next year’s walk.

The conference was attended by a myriad of scientists, treatment providers, activists, NEDA Staff, moms, dads and those in recovery.  It was awesome to see these communities come together for a common cause.  It is the dedication and passion of the PEOPLE that make all the difference.  We met a young woman who gushed over the healing powers of flotation – which was key in her recovery;  I met parents from Alaska who had spent thousands of dollars traveling and seeking intensive treatments in other states for their critically-ill daughter, after having been told initially to wait a few months for a mental-health provider to swing through their remote town–even as their daughter was critically ill.   The lack of treatment in non-urban areas is a tremendous challenge.

The conference continues to inspire and I could see it through a slightly different lens with Guzzy by my side.  The first keynote was  Jennifer Siebel Newsom, Director of the documentary Miss Representation;  she gave a wonderful and passionate speech about the gender assigned roles attributed to our children from very young ages and the impacts that has on us personally and collectively.   Guzzy has often chided me for my feminist viewpoint, so I was particularly happy to have her hear a feminist perspective from someone else: someone younger, attractive, intelligent and most importantly– not-her-mom.   (editorial comment/rant:  I realize that many people get the heebie-jeebies from the word ‘feminist’ and will fail to identify as such, even if their perspective is one based on equity and fairness.)

I was able to meet with a couple other walk coordinators;  attended several break out sessions:  some were great, some were blah and at least one, dealing with study results about brain chemistry, was over our heads.   Guzzy chose to nap during the session pertaining to College for ED sufferers.  But, I have all the notes for when/if she is ready to think about that.  Might be  next month, might be next year, might be never.

While San Diego is beautiful, it does not hold a candle to Wisconsin in the Fall.  Although I will most definitely yearn for warmer climes in the months to come.

 

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!

Walk Eve Butterflies

It is Beyond my wildest expectations.  The Madison NEDA Walk is tomorrow morning, and we have already  raised DOUBLE our original fund-raising goal.  The weather is going to be gorgeous and I have just learned that a local TV station WILL be covering the event.  I feel like singing “One Day More’ from Les Miz.  Tomorrow is going to be a thrill ride.

Every single person on the walk committee (and at NEDA hq) has been AMAZING!  We all have demanding day jobs, yet everyone has found time to promote and prep for this event.  Every time we have an obstacle, someone steps up in both big and little ways.  It’s a great team.

Friday night most of us got together for a tote-stuffing party at my house.  It was an opportunity to share a relaxing glass of wine with this dedicated and inspiring bunch; prior to circling my dining room table 200 times grabbing fliers, coupons, pens and other miscellania  to stuff into the walk totes.

Due to the overwhelming response, we will not have enough totes or T-shirts for everyone. While this is an inconvenience–its a great problem to have, since there’s no such thing as ‘too many’ walkers at this kind of event  Most importantly, we have an abundance of what is truly important: Enthusiasm, mutual respect and a message of caring.

Last winter I wasn’t sure if I should, or could, coordinate a NEDA walk — but I took the leap.   I am so glad that I did–the journey has been rewarding in a thousand ways; many of them unexpected.

Right now:   The totes are stuffed; the T-shirts are sorted; the speakers are confirmed; emails have been sent; assignments have been made; my own remarks are written; the checklists have been checked; the forms have been printed; the van is loaded.

Let the Walk Begin.

 

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?