storm the castle!
the whole story.
since losing my brother to the eating disorder battle, i've felt many waves of emotions. everything ranging from complete dark sadness to a motivation and passion so strong that it hurts. when seeing someone you love so much lose to something that COULD HAVE should have been prevented, it just doesnt sit well. there is strength inside of me that keeps yelling change. change. change. and to this day, i am not 100% positive where it comes from.
having the hope for change is completely different than being a part of the change. those who know me know that i am not a sitter. i dont let others fight my battles. and frankly, there is usually only one way to do something and it's mine. (a definite characteristic of both my brother and me.)
several months ago, my mom and i had received ours weekly newsletters from NEDA announcing that Missouri would be hosting their 5th annual Missouri Eating Disorder Advocacy Day in Jefferson City. immediate response: scared, intimidation, and questions. after some thinking, we knew that we needed and wanted to attend. this could be the start of change for me. maybe i could learn how to get my voice heard?
last week, we received our advocacy packet and well, you can say there were a few panic attacks between the both of us. what does this look like? what will we be doing? i don't know anything about laws? will we have to talk to them ourselves? i'm nervous. what if i cry in front of our senator? this will make a difference!
so, we studied looked through our packet of information. we saw who we would be meeting with and who would be on our advocacy team for the day. overall, we just knew that on thursday morning we would leave kansas city and drive to jefferson city. who cares if we didnt know what we were doing? we were changing lives.
thursday morning came. i was up at 5 a.m. with nerves running through me like a train. it literally felt as though there was a lump in my chest combining an array of emotions inside my chest. but i got up and ready. outfit not complete until my pin was placed over my heart. i knew my brother would be with me during this day and helping me along the way to find the strength, courage, and right words to say but i didnt feel complete until i could see him.
you could say that my brother and faith were the thing holding my together at this moment.
we arrived at the Capitol around 9:30 a.m. nerves still rushing and questions going on for days. with all the anxiousness i was feeling, i was also experiencing a calmness and peace about being here today. for this cause. for my brother. i about to make a difference. whether a tiny one or a monumental one didnt matter. a change is change.
our directions were to meet promptly at 10:00 a.m. in the capitol to began our session. we arrived, received our directions, post cards for thank yous and gathered with other people who have somehow been affected by eating disorders. there were several survivors, parents, sisters, brothers, dad, grandparents. all these people have been impacted by eating disorders.
we began with several speakers. the first speech was given by a research doctor in the eating disorder field. she spoke facts that sent literal pain through my body. it was intense and true and so not okay. i've chosen to share just a few with you now.
- 500,000 Missourians will suffer from a serious eating disorder at some point in their life.
- 30% of girls and 16% of boys in American High Schools will suffer from disordered eating.
- American Academy of Pediatrics has called attention to the sharp rise in hospitalizations for eating disorders among children under 12.
- For females 15-24 who suffer from anorexia, the mortality rate associated with the illness is TWEVLE times high than the death rate of all other causes of death!
- Only 1 in 10 men and women with eating disorders receive treatment. With treatment the mortality rate decreases from 20% to 2-3%.
- Average cost of inpatient treatment is $30,000. It is estimated that individuals with eating disorders need anywhere from 3-6 months of inpatient care
it was painful to hear statistics after statistic. this curable and treatable disease is taking innocent lives daily. we have the power to help. we have the voice that other have been robbed of.
our next speaker, was Miss America 2008, Kirsten Haglund. talk about a positive role model for young girls in this harsh society. she was a phenomenal and passionate speaker. she herself suffered from an ED when she was younger and is now so involved and has her own organization to help fight this battle. \http://kirstenhaglund.org/
"The initiative to create KHF came from my own battle with an eating disorder, and desire to expand awareness of this disease. While traveling the country as Miss America, I heard firsthand, story after story, of young men and women who, with professional help, were able to recover from their eating disorder and embrace total wellness and health. Along with this truth however, comes the sad realization that treatment costs, largely not covered by health insurance, can be devastating. Residential treatment and/or inpatient care can be an individual’s only beacon of hope for recovery; their only chance at life. However, this specialized care can cost up to $2,500 PER DAY.
We know that cancer and diabetic treatment plans, emergency surgeries, and other life-threatening illnesses can be costly as well. Fortunately, someone with such a diagnosis may be covered by health insurance and not required to pay for treatment “out of pocket”. So why is this not the case when one is diagnosed with an eating disorder? The illness is not a choice nor is it a phase. Rather, it is a life-threatening, physical and mental illnesses that will require full and specialized treatment by professionals in the field."
we ended our speaker session with a "why are we here?".
we were there to ask lawmakers to support two sets of bills: H.B 131 and S.B 160, requiring Missouri health insurance plans to cover the treatment of eating disorders, which were sponsored by Representative Rick Stream and Senator David Pearce. we were also there asking for support for the HB 132 and SB 161, which would call for an actuarial analysis by the Joint Committee on Legislative Research on the cost of adding eating disorder coverage to Missouri health plans. (basically, do the research to prove how many Missourians we would be helping by providing eating disorder insurance)
with that, we were told to "STORM THIS CASTLE!". we also go word that SB 161 was about go on the Senate floor.
without hesitation, i headed to the Senate Gallery.
this picture shows Senators voting on SB 161. at 32-2 this bill passed right in front of our eyes. this was HUGE. this meant we had the Senate on our side to go ahead with actuarial research all costs associated with the insurance reform. definitely a great step in the right direction.
after this celebration, we spent our day in and out of Senator and Representatives offices talking about how important these bills are in order to get help for 500,000 Missouri citizens that will fight this battle. it was a different feeling. intimidating but encouraging and such a great experience all together.
since Senators were required on this floor this day, we spoke to many of the assistants. it was definitely overwhelming at first but after the first or second stop i found myself saying things like "two years ago this coming tuesday, i lost my brother from an eating disorder. we couldn't find adequate treatment for him and he passed away in california by himself. we need this insurance reform......." the first time that came out of my mouth, i literally could have puked. it was so raw. so disheartening. it literally caused my heart to ache. but its the truth.
with each conversation, we all grew more and more brave hashing out facts and getting to the point. to see the look after we had shared our information was sad. you can clearly tell these people are not educated on this disease that will impact them. in someway. in somehow.
i was so impressed with Representative Ken Wilson and his office aide. WOW. i had missed him on my stop but after leaving some information to pass on, his aide called me and set up an appointment to come back. i arrived back at his office at 1:00 p.m. i sat across from him in his sophisticated office with leather chairs, pictures of his grandchildren, and golf memorabilia.
i began pouring my heart out. his eyes widen as i mentioned my brother, a male, had lost his battle to an eating disorder. he was shocked. we had great conversation about my expectations for this bill and what i would like to see in the future. he wanted more facts. i left a two-page fact sheet. i handed him a postcard with a picture of Brandon and said "if you help get this bill passed, this is just one example of the people you could be helping." i was
brave. and i was
proud. he told me that if we could get the bill to the floor, then we had his vote. what a true testament of this amazing man. he then proceeded to ask if it was okay to mention this and our names in his capitol report. and his aide snapped a photo.
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| our advocacy team for the day with Rep. Ken Wilson. |
it was a perfect ending to such an inspirational day. i felt like i was making a change or difference with every person i came into contact this day. if anything, i spent a whole day talking about brandon. and for me, that was a gift in itself.
since the senate did pass the bill, we are now in desperate need to let our House know how important it is for them to support the Senate's decision. if you'd like to help, you can look
here to find your representative and let them know they should support SB 161 and HB 132 (actuarial study bill to identify all costs associated with eating disorders insurance reform) as well as SB 160 and HB 131 for the eating disorder insurance reform bill. if there is no audience, they dont think its important. let's let them know we need this.
i am so blessed that i got to experience this day. despite the nerves and anxiousness, i know that i did what i could and am determined to do more in the upcoming months and years.
i know that i made Brandon proud of me and as good as that feels, it would feel even better if he were here to high five me and wrap his arms around my neck for a sibling hug. i will cherish those hugs we shared and do my best to ensure that no other sister has to write a blog post about fighting for something that her brother SHOULD have had.
you could say the stitch holding me together right now are faith, determination, hope, and Brandon.
broth,
i know you were there with us the whole day. thanks for the strength you provided me and the courage to speak to our legislators. this is all for you buddy.
love,
sister
