by Paula | Aug 31, 2014 | Anorexia sucks, Our ED Story
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.
by Paula | Feb 27, 2018 | Anorexia sucks, Our ED Story, Uncategorized
It wasn’t the woman’s thinness, or her choice of a small salad that gave her away. It was HOW she was eating, or rather not eating: she poked aggressively at her salad dozens of times, spreading its contents around and around before raising a tiny forkful to her lips; she wiped her fingers and mouth repeatedly with a napkin to remove any trace of grease; she picked at her food before dropping it back into the bowl or into her napkin. She exaggeratedly went through the motions of eating, while actually consuming very little.
Sitting in Panera, watching this woman out of the corner of my eye: it all came back to me in a visceral rush of memory: all those endless hours sitting at the dinner table with my daughter–watching her struggle to eat. She picked, picked, PICKED at the food, breaking it into ever smaller bits, as if she was willing it to simply disappear. Like all those afflicted with anorexia, she was a maestro at concealing food — tucking it away in unexpected places when we weren’t looking. She demonstrated great ingenuity in her tricks to deceive us into thinking she had eaten more than she had. Sometimes we caught on, other times we didn’t.
We were lucky. We had access to good doctors and therapists; I was able to work from home during much of her recovery; we had insurance that covered the enormous medical expenses; and my daughter was still a minor, so she did not have the choice to evade treatment. Even with all those advantages there was no guarantee of recovery–it’s a marathon with no finish line in sight. But, we were lucky; she did get better after a year of intensive therapy and hospitalizations.
As I write this, it is eating disorder awareness week. It’s a good week to reflect on our own experiences, and to share stories. The following is an excerpt from the NEDA (Nat’l Eating Disorder Assoc) Web Site
NEDA’s theme this year is Let’s Get Real with a goal to expand the conversation and highlight stories we don’t often hear. Our culture has complicated relationships with food, exercise, and appearance.
30 million Americans will struggle with a full-blown eating disorder and millions more will battle food and body image issues that have untold negative impacts on their lives.
But because of stigma and old stereotypes, many people don’t get the support they deserve. Join the conversation and help us raise awareness, bust myths, get people screened, and start journeys to healing.
When I started talking about my daughter’s illness, I was amazed at how many OTHER parents, co-workers, friends, family members, etc. had their OWN story of suffering to tell; they just needed someone else to start the conversation. Let’s get real, and keep the conversation going.
by Paula | Sep 18, 2017 | Anorexia sucks, Our ED Story
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.
by Paula | Jul 10, 2017 | Anorexia sucks, Our ED Story
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!
by Paula | Oct 6, 2016 | Anorexia sucks, Our ED Story, Uncategorized
(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!
by Paula | Sep 29, 2016 | Anorexia sucks, Our ED Story
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.
