by Paula | Aug 19, 2015 | Anorexia sucks, Our ED Story
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?
by Paula | Aug 16, 2015 | Anorexia sucks, Family, Our ED Story, Uncategorized
We recently attended my extended family’s 2nd bi-annual (every two years) reunion; we all stayed in a very large, sorta creepy, old, sprawling house –complete with secret passageways and a servant’s staircase leading to the kitchen. There were about 20 of us at our ‘peak’ attendance, ranging in age from my 88 year old dad to my 2 year old grand-daughters.
Mostly, it was a lazy time together. We were awakened each morning by the youthful enthusiasm of my young nephews as they ran up and down the long upstairs hallway; their attempts to muffle their joy to let us old folks sleep were not the least successful. My brother and his wife made us a huge breakfast each morning; it was quite a treat to find coffee, eggs, sausages and waffles upon a leisurely arrival in the kitchen.
“Grandpa” Dan and I had to share the grand-daughters with their aunts, uncles and cousins, all of whom were smitten by X1’s charm and by X2’s determination to NOT SMILE, despite everyone’s silliest attempts. Eventually X2 would reward us with a beautiful shy smile, usually with grandpa kiss-tickling her neck.
Our last reunion, 2 year ago, was bittersweet due to my daughter, Guzzy’s, anorexia and our mother’s advancing Alzheimers. I carefully monitored and measured and administered Guzzy’s food for three meals and three snacks a day. Food was the medicine she desperately needed and also desperately resisted. Although my family did not really understand her disease, they surrounded her with love, and the event gave her some temporary respite from her ED fog.
My mother was angry and mad at us all; she really thought we had pulled a mean trick on her by bringing her to this strange place without telling her what was going on. It was both tragic and comedic as she lashed out at Dan: “This is the most terrible thing she’d ever heard”. Poor Dan. Poor mom.
That reunion gave us the opportunity to have a serious talk with dad, during which we all agreed it was time that mom live somewhere that was better equipped and staffed to deal with her severe dementia. It was a sad, but loving, conversation.
Fast forward to earlier this week: My mother is no longer with us–and while we miss her, we are glad she is now at peace. Guzzy is healthy and ate just as many S’mores as her cousins, without batting an eye.
Life is good.
by Paula | Jul 26, 2015 | Anorexia sucks, Our ED Story
When my beautiful daughter was diagnosed with severe anorexia in 2013, I was gobsmacked. The first days were spent coming up with a hundred irrational rationalizations and alternative reasons for her severe weight loss. Soon enough our new reality sank in: this was serious and this was not going away quickly or easily.
We embarked on a journey to a then foreign land of meal plans, therapies, and hospitalizations. For me it was an immersion-like education program in EDs: I camped out in her hospital room and talked to all the providers and therapists. I read voraciously and trolled the internet for information during the wee hours of the night. Little did I know that, for me, this journey would continue beyond my daughter’s eventual recovery.
The more I learned, the more I wanted to get involved in advocacy work. Once again, I came up with a hundred rationalizations and reasons for NOT getting involved: I am too busy and don’t have time; I’m ‘just’ a mom—there are others who are more qualified; What if I make people uncomfortable; What if people judge me because MY daughter was sick; and what exactly CAN I do?
While I was stuck in waffle mode; I read Amy Poehler’s book: “Yes, Please”. When asked how she manages her own hectic schedule; her reply went right to the heart of my personal dilemma:
“You do it because the doing of the thing IS the thing. The doing is the thing. The talking and worrying and thinking is not the thing. That is what I know. “
The DOING is the thing. That struck a chord. I was (almost) ready to get off of the proverbial pot. Then I went to the 2014 NEDA Conference in San Antonio. The Conference was amazing. I was able to meet and speak with other parents, with providers and with individuals in various stages of recovery. We shared stories: Stories of loss; stories of unconditional love and support; stories of suffering; stories of hope; stories that would break your heart; and stories that would lift you up.
Once back home, I was pumped up, but was still wondering–what can I do? I’m not a doc or a therapist, I’m an IT Project manager for heaven’s sakes. I plan and organize stuff. Then I heard it- that CLICK you hear in your own head when the penny drops and a solution to a puzzle appears: I can coordinate a walk.
I learned that NEDA provides a HUGE amount of support for its walks; including an email blast to recruit members for a walk committee. I was fortunate enough to get awesome volunteers for my committee (really – they ARE the secret sauce). NEDA provides step by step guidelines and support from a staff member; it’s been wonderful to know that whenever I have a question I can send an email or pick up the phone.
We formed our Walk committee early — in January and our walk is in September. This gave us time to familiarize ourselves with the walk process, get to know each other, and to develop and share great ideas. Have I mentioned that my committee is AWESOME?
Coordinating this walk has been a journey of discovery for all of us. We’ve all had to step out of our comfort zone to pick up the phone to call a media contact, a potential speaker, or a donor. Despite an initial dry spell in our efforts, we doubled down, refined our pitch, and are now reaping the benefits in positive responses from in-kind donations, speakers and financial support. Heck, we even got some caps and totes from the Packers to give away as prizes!
Every step of the journey we think of new ideas: some of which will bear fruit, and others that are filed away for ‘next time’. As I write this, our walk is less than two months away, and I am really pumped up to see the walker registrations and donations climb as the event gets closer. We’ve laid the groundwork for an AWESOME event. Of course small things can (and probably will) go wrong—it might rain, a speaker might bomb; I might get so nervous that I pee myself; but we’ll cope with whatever happens.
If I can coordinate a walk – so can you! My advice is to not limit yourself with self-doubts. I had exactly zero prior experience with non-profit charity fund raisers. If you have decent organizational and communication skills and a passionate commitment to preventing and treating eating disorders: You already have what it takes. NEDA can and will provide tools and guidance along the way.
That’s my story and my pitch. If you are interested in tracking the progress of our walk – check it out at Madison NEDA Walk. Madison is going to ROCK this Walk!
by Paula | Apr 25, 2015 | Anorexia sucks, Our ED Story
Anorexia was a dense, dark fog surrounding my daughter, Guzzy. The ugly fog separated her from her family and loved ones and prevented her from truly living her life. It prevented her from pursuing other interests or expending energy on anything other than her illness. During the depths of her illness, we would occasionally get rare and precious glimpses of our pre-ED daughter, but then the haze would inevitably deepen and she would recede further into its depths. Her world was very small, isolated and lonely.
I recently asked Guzzy if there was a particular moment during her illness when she realized that she needed to get better. There was. She had been staying periodically with her adult cousin in Milwaukee, near where she was being treated at the time. One night she found herself compulsively walking in circles around their small apartment while also reading a book. Her ED would not allow her to hold still –it demanded constant motion. Her orbit through the apartment took her through some lit areas and some dark areas, and she became irritated that the darkness was interrupting her reading . This was a lightbulb moment for Guzzy (pardon the pun). She didn’t want to be forced into the dark anymore; She wanted to read her book in the light – away from her Eating disorder.
Guzzy has been in a solid recovery now for about a year; and I only recently heard this story. As her mother, I did not notice any clear delineation of behavior until she was further along in her journey. In fact, she got somewhat worse before she got better. Recovery is rarely linear; and a desire to get better does not always translate into having the strength and ability to face down your ED. As one former sufferer told me “you need to feel the fear and do it anyway”. But, I believe that this lightbulb ‘aha’ moment was a necessary step for her eventual recovery.
Everyone deserves a life free of Eating Disorders. Everyone deserves to live in the light.
by Paula | Apr 10, 2015 | Anorexia sucks, Our ED Story
A new feature for my blog: A monthly post of thoughts and news updates from the trenches of the war against Eating Disorders (EDs). In the spirit of full disclosure, I am currently more of a ‘weekend ED warrior’ since ED is no longer a daily, tangible, and evil presence in our home.
To extend the war analogy: I believe there is a sort of Post-Traumatic-Stress-Disorder that affects parents that have tended their child through a life threatening illness. in my case, It does not take much to ‘trigger’ vivid and visceral memories of that time. I get flashbacks to sitting for hours at the dinner table watching my daughter silently cry while staring into a bowl of cereal.
I have previously written that the degree of care needed in Family Based Treatment in the re-feeding stage for anorexia is comparable to the level of care and commitment required to care for a newborn. Except: you know how to care for a baby–their needs are generally pretty predictable. Except: With a baby–other people are happy for you and eager (and able) to help; Except: with a baby–you will not be harshly judged for their condition; Except: with a baby, you can predict the next stages with a high degree of confidence. Except: A baby will not (purposely) sabatoge or resist their own care. I could go on and on, but you get the drift.
RANDOM ED RELATED NEWS
ED advocates have successfully shamed Amazon into pulling the outrageously titled app: Save the Anorexic Girl‘. The premise of the game is to fling various food items at an emaciated girl to save her from starving. Apparently, the cartoon girl would actually die if not hit in the head with a sufficient quantity of pies. Wow.. just…… wow. Who in the hell comes up with this stuff? I’d like to throw a cow pie at THEIR head.
Then there is this: Despite the fact that anorexia is the most dangerous of all mental illness, research to treat EDs is grossly underfunded. This is most apparent when following the money: A study in 2011 found that Research dollars spent on Alzheimer’s Disease averaged $88 per affected individual in 2011. For Schizophrenia the amount was $81. For Autism $44. For eating disorders the average amount of research dollars per affected individual was just $0.93.
Which is a perfect seque into an unapologetic plea for YOUR help to raise money in the battle against EDs. Click HERE to donate to the Madison NEDA fund raising walk… or sign up to walk with us. Hmmm… maybe I should invite a certain app developer to the walk; we can whip up some cow pies and have our own version of a ‘dunk tank’. We can call it ‘Crap on the App’.
by Paula | Mar 28, 2015 | Anorexia sucks, Our ED Story, Uncategorized
I am super excited to be the Coordinator of the 2015 Madison NEDA Walk on September 20th.
My daughter suffered from a severe eating disorder in High School. Her illness, treatment, and eventual recovery set me on a trajectory of education, advocacy and activism on behalf of eating disorder awareness and prevention. Help is available and recovery IS possible.
Last fall I went to the NEDA Conference in San Antonio, and was blown away by the dedication and passion of the NEDA staff, health care providers, parents and most of all, by those in recovery; who shared their hard-won wisdom and their stories. Stories that will break your heart and lift you up.
During and after the conference I asked myself: What can I do? This event is the answer to that question.
Now, the question is – What can YOU do?
1. Register for the walk – it is going to be AWESOME! Click Here to register and/or donate
2. Create Your own team! The walk will be even MORE awesome with more friends
3. Make a contribution. Help get our fund-raising thermometer to the HOT HOT HOT setting!
4. Tell all your friends, family, neighbors and that certain someone you’ve been too shy to talk to – I can’t think of a better ice breaker!
5. If you want to learn more about Eating Disorders or my family’s journey against ED – read my posts from the ‘eating disorders suck’ menu. But not until after you’ve contributed to the walk.
Below is additional information from (and about) NEDA
The National Eating Disorders Association’s vision is to eliminate eating disorders globally by promoting positive body image and self-esteem and by discouraging dieting behaviors, drive for thinness, and body dissatisfaction. NEDA is recognized and supported by sufferers, families, health care professionals and educators throughout the world. As you can see, raising awareness for this organization is critical in order to create a world where all women, girls and men feel confident about their bodies and are embraced for who they are as individuals, not what they look like. NEDA provides critical programs and services to support individuals and families affected by eating disorders like their National toll-free Helpline, Annual Conference, Parents, Families and Friends Network, NEDA Navigators and Preventative Tookits for Parents and Educators.
