A mom’s journey from denial to advocacy

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!



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