...Until Eating Disorders Are No More

In my last post about Lobby Day, I mentioned a story shared at the Congressional Briefing by mother Tracy Smith, who’s daughter Reanna died from her eating disorder while waiting for treatment. Tracy has agreed to let me share her testimony here to further spread the truth about the severity and life threatening reality of eating disorders. I’m deeply grateful to Tracy for her courage and willingness to share this story, and hope that others will learn from it. 

Please note that some of the specifics regarding her daughter’s death may be difficult to hear and are rather emotional, and if you are in recovery from an eating disorder, please take care of yourself while reading.

The following speech was given by Tracy Smith on Capitol Hill on April 24, 2012, at a Congressional Briefing held by the Eating Disorders Coalition as testimony to advocate for the passage of the Federal Response to Eliminate Eating Disorders (FREED) Act.

It has been seventeen months since my baby was taken.

My Family has been devastated by an eating disorder in the worst way possible. On Nov 15, 2010, my Daughter lost her life to an eating disorder. In less than twenty-three months this disease came into our lives and took over my child. Physically, mentally emotionally and in every aspect that you can imagine. Due to misdiagnoses by her pediatrician, lack of education and no coverage for her condition by medical insurance we were alone in the very short battle!

This is Reanna Yvette’s Story.

In early 2009, my daughter came home from school and told me she was a vegetarian. She was fifteen and a half years old. She was a loving, caring, giving child. She always wanted to make people smile; she had a strong love for life. She was an artist and loved to draw pictures of animation. She was a normal weight for her height, and was healthy. In less than two months she went from vegetarian to barely eating anything except lettuce. In that brief time, she lost over 25% of her body weight. The change in physical appearance and mental state were now very drastic and noticeable to everyone who knew her. She became very defensive about everything! I took her to her pediatrician Dr. Mohadeem, who had been her pediatrician for the past two years; with hopes that this would be where we could get help for what I knew was beginning to be a serious problem. Unfortunately, I was mistaken, during the examination I expressed my concerns regarding Reanna’s recent weight loss issue and eating issues. I was point blank told by Dr. Mohadeem in the prescreens of my daughter that “She’s the perfect weight for her height and that she is just going through NORMAL adolescent changes. As for the not eating, her body is changing!” We left, and now Reanna was truly convinced this is not a problem. See what the doctor said!  This just gave my daughter and this disease ammunition, because in her mind if a doctor said she was okay, she was okay.

Now six months into this nightmare, so much about Reanna has changed. Her demeanor is now defensive, mean, dark and aggressive. Her art work depicts anger, pain and death. She became a different person physically and mentally. Her eating habits were worse. She will no longer eat in front of anyone; she is going through stages with food and having peculiar habits with food. She now wanted fat free everything. If it wasn’t fat free she would immediately be agitated, she would scream, be very mad and accused me of doing it on purpose, setting the whole house in an uproar. She was territorial in the kitchen, she didn’t want anyone in the kitchen cooking, cleaning, organizing or putting anything away. She is now possessive with her food, not letting anyone eat or drink anything of hers. She was methodical in placing food in the refrigerator, she would get annoyed if things were misplaced or used by someone else. Her liking of the sugar substitute Splenda has now become an obsession; Reanna used it on and in everything. Walking became an everyday exercise, miles and hours a day. Anytime her weight, obsessions or activities were mentioned she became more defensive and combative. Her bathroom habits were changing also, she would be in there for hours. When I asked her about it I was always told, “I don’t feel good!”

August of 2009, she developed kidney stones, most likely due to her diet and lack of water. She no longer was having a menstrual cycle either. With her health issues not getting better, she was ill for quite a while. September she had an incident at school; she tripped on a peach and fell on her right knee and shattered it. Tore her ligaments and meniscus and fractured her knee cap. She was placed in a full cast up to her hip. I am not a doctor by degree but I was now very aware of the fact that her immune system was not functioning normally. Her bones were becoming weak from lack of nourishment. Her hair was becoming thin and her skin looked bit jaundice. All the while the doctors ignored my pleas and referred her to orthopedic specialist! That’s what they felt she needed the most at this stage. Three weeks of wearing her cast she wanted her cast cut off. With the help of her friends they removed it and now she could return to her bathroom habits. She would not let anyone see her naked or partially clothed. She refused to take her medication or continue with any medical care for her knee. Along with everything else she was going through, she dealt with the pain. I believed for a moment we were on a path for healing, as her menstrual cycle returned. Seems small now, but it was a major breakthrough I thought.

November 2009 we relocated to Arkansas, her health was continuing to fail. She had multiple emergency room visits for sinus infections, continuous pain in her knee and her diet now consisted mainly of bananas. To a new staff of doctors six states away from where this struggle had begun, once again sided with my now frail daughter, I was told by the doctor that her new diet was “OKAY” and I will never forget those haunting words that followed “AT LEAST SHE IS EATING”! I was so angry and everything now that I was seeing was a sign that she has a problem and no medical doctor was listening to our cries for help. So back to the banana diet it was, frying them, boiling them, baking them and any other combination with Splenda she could imagine.

February 2010, we moved back to California. We noticed that she got much enjoyment out of cooking for other people. Looking back now her Sister Kamber believes, it was her way to be around food but not having to eat it, this allowed attention to be drawn away from the fact she herself was not eating. We as a family would try to get through to her, pleading with her to eat! She had pulled away from her longtime friends and started to pull away from us - her family.  We had to tread lightly as things could take a turn for the worse depending on her mood. At times she would be receptive to our pleas and try to fight the disease. She would have a couple of good days and then the disease would win. I discovered that she now was binging and purging to satisfy our pleas to eat. She increased her time in the bathroom; we could hear her in the shower vomiting up her food intake. I was proactive and limited her time in the shower and how many she could take. I thought this would help it stop! All this did was cause more conflict in my home. Reanna was only eating to make us happy. The binging was progressively getting worse.

July 2010, Reanna went to visit her Aunt Teressa in Indio, Ca. Teressa was observing her and noticed that she was resting and in sweatpants all the time and sleeping. It’s the desert and it usually is in the 120 degree plus range, so this along with her physical appearance alarmed her. She confronted Reanna and Reanna started to fight her. She was no match for her aunt! My sister got her to finally admit she had a problem and Reanna told her she wanted and needed help. Teressa called me and insisted that we do something now or Reanna was going to DIE. I agreed and my sister went into action. She started calling hospitals the first one was Loma Linda Childers Hospital, it is supposed to be one of the best children’s hospital in the United States. She spoke with a person named Patty and Patty informed her that they did not take their type of medical insurance which was Medi Cal, there was no way they could have her on a walk in basis and be admitted with that type of condition. She did ask if Reanna was cutting herself, if she possibly was they could admit her for that and that would be covered. Out of desperation I thought about that for a minute! But knew that would be a quick fix to a problem that was deeply seeded already. Patty was kind enough to give Teressa a few other numbers of places for possibly help. She called multiple places and they would forward her to another facility, no one accepted Medi Cal. No hospital or treatment centers would help!  Teressa was disgusted to find out that unless we could afford to pay for treatment privately that we were basically on our own AGAIN! The treatment centers were too expensive the lowest price my sister was quoted was $799.00 A DAY! I realized at that moment that if I was wealthy I could possibly save my daughter! What a horrible thought to know! I am not rich and my beautiful daughter was fighting this on her own. How pathetic I felt! If I had a better job with better benefits we possibly could fight this.

August 2010, I went back to school to get a better job. I went to Truck Driving School. I knew that if I put all my efforts towards this I could get her the insurance she needed to fight this disease. In early September 2010 I got a job offer. This meant I needed to make drastic changes. Being a single mother I sent my daughters to live with their older sister in Las Vegas, NV. I would be employed by Night Trucking with an awesome insurance package. Unfortunately this meant I had to leave my daughter when she needed me most! I knew that this was going to be the solution to our problems. I was gone for seven weeks straight. I called every day and every night we texted often. My daughters would give me updates regarding Reanna’s condition, and they were not good. She was increasing her binging, purging and depression was more severe. No one could get her to stop, not even me.

November 7th 2010, I got to return to Las Vegas for ten hours. In those ten hours Reanna did not leave my side. I noticed her breath had a horrible unusual smell. It was not the pleasant smell of a healthy person. Our plan was for Reanna to be able to get the medical help she needed and then she would get better and be able to travel on the road with me. This was the relief she, we had been waiting for. She was very positive about it! When I left her the next morning she would not let me go! She hugged me like this was the last time she would ever see me. I never dreamed or could imagine this was the last time I would be holding my daughter.

November 13th, Reanna’s sister Gift called me and said that Reanna was not good and that she called an ambulance for her sister. Reanna was doubled over and complaining of stomach pains and having trouble with her breathing. At this point I’m trying to figure out how to get to her. I was on the road in Central California. The hospital called me and told me they needed permission to give her treatment. I agreed. They recommended that I get home as fast as possible. I had to have family make arrangements to pick me up and drive me to Nevada. On the drive all I could think about is God let me get there before something happens! It took me nine hours to get to my baby. When I got there she was in so much pain, she couldn’t sit still. They had her dosed up on morphine. I told her “Mommy is here and I’m not leaving. She replied “you promise”.  Reanna was in so much pain and it was not being controlled by the morphine any longer. Tests had not been completed and they had no idea yet what exactly was going on.

To manage her pain they put her on a ventilator and put her into a medically induced coma. In the middle of the night she came out of the coma and tried to pull the respirator out of her throat. They had to physically restrain her and tie her hands to the bed. They put her back into the coma and I never left her bedside and watched her twitch all through the night. In the morning they were planning to do an upper gastrointestinal endoscope procedure. That plan failed when Reanna’s body started crashing. Her blood pressure was dropping, she had a high fever, she wasn’t responding to any treatments. She now had to have emergency surgery to see what was going on with her. The doctors took me aside and told me to pray, they didn’t think she would make it ten minutes on the surgery table. I kissed her goodbye and told her I would see her when she was done. By this time I started calling family and friends, people were driving two hundred and fifty miles to be with her. My daughters were distraught and in a daze, not believing that this was happening. Four hours pass and Reanna was still fighting for her life. The doctors were amazed that she made it through surgery. They couldn’t believe what they pulled out of her stomach, unprocessed food from the last week. Her stomach forgot how to process food, her bowels perforated and she went septic. I was informed that she wasn’t out of the woods by any means and the next week would be the hardest. I was told to continue to pray.

Our family was now by her bedside she was still in a coma recovering from surgery. Monitors started going off, Reanna’s blood pressure started dropping and her heart stopped. They called code blue and nurses and doctors started working on her. We witnessed them pounding on her chest trying to resuscitate her. They got no response; they shocked her heart four times and finally brought her back. It was the most devastating ten minutes of my life! They moved us from Reanna’s room to a conference room and explained to us that she was no longer breathing on her own; the machines were now keeping her alive. Every one of Reanna’s major organs were shutting down. They said they could keep bringing her back, but we as a family had to make a choice as to how much we were going to put her little body through. I sent my daughter’s home at this point. I watched them pump everything they had to offer to help make Reanna comfortable at this point.

November 15th at 6:15 am Reanna went into cardiac arrest again. I instructed them to stop. She passed away at 6:30am. I can’t put into words what I felt or tell you exactly what I was thinking or doing at that moment. My world simply stopped!

After my daughter passed, her best friend Linda found her journal in her room.

The last thing she had written in there was:

“Where is the help I was promised?
Not here, not my fault I want help!”

A couple of days later while going through the only things left of my daughter I found her Bucket List. Yes, my seventeen year old daughter had a Bucket List. Her number one was- To save a life.

This is now my mission. I am here today to ask that Congress will hear our cries and pleas. Help us save the next generations from this silent disease that does not discriminate against race, size or sex. We train our physicians and medical staffs to recognize obesity because it’s a disease you can see. We inform our communities to eat healthier and to exercise to help maintain idea weight. Why do we NOT train our doctors on eating disorders like anorexia or bulimia? Why do we NOT train our pediatricians to recognize this disorder?  We do we NOT actively educate the public on this disorder. Why are we NOT fighting medical insurance to cover and assist with this disease!  As in Reanna’s story being skinny is NOT ideal for her body size and height. We assume a skinny person is a healthy person, never knowing that for some it may be an eating disorder silently killing them like, Emily Rose, Nicole, Chelsey, Elle and Reanna Yvette.

I meet families every year with stories like Reanna’s. These illnesses are treatable and preventable, but our current societal attitudes, knowledge, and system of care fails patients all the time. Please read and share to help honor her memory and spread the truth that eating disorders are deadly, and we cannot afford to regard them them as anything less.

Putting this here because I might blog about it at a later point, and thought I’d share it for now to see if anyone else had any interesting thoughts. That, and Facebook has a tendency to have things get buried after awhile, and I spent a lot of time writing this, so I’m archiving it on Tumblr.

Today on Facebook, a good friend of mine posted the following:

I’ve been totally caught up lately in examining how feminism has a history of racism, homophobia, transphobia, classism, cissexism, etc, and I don’t think that the word “feminism” can’t ever be separated from that history…in other words, I think I’m making a conscious decision to not identify as a feminist anymore. Whoa.

This was my response:

I’d say that it had to start somewhere and it’s ever-evolving, just like any other philosophy or movement. If the ideals and foundation are sound, though, then it’s the job of radical thinkers (like yourself!) to call things out when you see them and help advance the issue towards one that reflects its full potential.

To me, feminism is completely incompatible with all the prejudices you identified, but plenty of people get exposed to mainstream feminism and come from sheltered backgrounds where they just haven’t yet connected the dots on how all the issues are connected, or that they may actually have their own prejudices against things they don’t understand because they haven’t been exposed or educated on the subject.

That absolutely doesn’t excuse someone for doing or saying things that are racist, gender biased, sexist, homophobic, transphobic, etc, but that doesn’t mean that those people are inherently those things, either. It’s similar to the eating disorder work I do where, before we earn support for our cause to be supported, we have to go in and educate people to understand the seriousness of the issues we want them to support.

I’ll be the first to admit that it’s… frustrating to ask politely for something that is so self-evident like adequate mental health care for a life-threatening illness, but part of it is just meeting people where they are at. If someone has never heard anything about eating disorders except for what they see on the cover of gossip magazines in the grocery store, I can’t expect them to realize that they effect diverse populations, have the highest mortality rate of any mental health disorder, etc. and I’m willing to educate on that fact.

Especially in the past year, though, as I’ve examined gender as a social construct with regard to my own eating disorder past and the barriers I encountered in getting help and being taken seriously, I’ve decided feminism is undoubtedly the necessary vehicle to bring about the changes required. At it’s heart, I see a vision where people are seen as people first, absent of any assumptions you might make about their personality, character, or interests based on their biological sex, gender identification, sexual orientation, race, etc.

The problems identified within the feminist movement are rooted in patriarchy, NOT feminism, and we are all inevitably severing our own roots to that patriarchal system because with few exceptions, we were all brought up in it no matter how much we fought it. For some people, those roots run much deeper than others, and I think it would be reactionary to turn your back on the movement which fights against patriarchy just because there are people involved who still haven’t fully realized the level of influence patriarchy has had on their life and worldview.

To me, the real question is what can be done to deal with it in a healthy way that isn’t confrontational or exclusionary (because feminism is for everyone!) but is also uncompromising in its intolerance for the pervasive and oppressing mindsets/attitudes that some people still haven’t broken free of.

Nothing starts out as perfect and you’re essentially working towards an ideal. A good foil to it is the idea that the US was founded on the ideals of a democratically free society, but it was flawed from its inception because it included the social systems of capitalism and puritanism, both of which are by their very nature patriarchal. It’s always been the job of more radical thinkers to call to attention the hypocrisy and injustice of outside ideas that allow prejudice to thrive within a system or philosophy who’s foundation shouldn’t allow for that prejudice in the first place (although someone should explain that to people like Bob McDonnell).

The important difference, of course, is that democracy is a system of government and feminism runs far deeper than that. But similarly, if you live in the US there’s a good chance that you have been exposed to the same capitalistic, puritanical bullshit. Some of us see through it really easily and feminism doesn’t seem so radical. Other people need to be completely re-educated and be exposed to new ways of thinking about the very basic nature of how we regard ourselves, our bodies, and what it means to be a diverse population.

This of course does not excuse prejudice and injustice. It just means we need to shout louder and more often.

“Yes of course, I’m scared of getting hurt, and yes of course I’m scared of being wrong. But at the same time my silence will convict me and the evil will carry on.” -Ian Mackaye, ‘Do Not Consider Yourself Free’

Even though I’ve been celebrating all February, it’s officially Eating Disorder Awareness (and Prevention/Advocacy/Education) Week!

Sometimes people say to me, “I don’t know anyone with an eating disorder.” Unfortunately, that’s probably not true. Often, people who are sick don’t ‘look’ obviously unhealthy and can go to great lengths to hide ED behaviors.

Maybe you know someone who you think IS struggling. There’s no time like the present to reach out to them and offer them support. Remember, eating disorders are serious and sometimes fatal.

Maybe YOU are struggling. There’s no time like the present to seek help. It is an inalienable truth that everyone is fully deserving of health and happiness, no matter how badly you might feel currently or what the eating disorder might tell you.

Maybe you just have an unhealthy relationship with food. Do you feel guilty after eating? Do you ‘blacklist’ certain foods? Do you feel like you have to exercise to ‘make up’ for eating? Do you hate your body? These thoughts have become normalized in our culture but they are not ‘normal,’ disordered eating behaviors can still have very serious health consequences.

 hat can you do today, this week, this year, to change the way you think about bodies, both yours and those of others?