...Until Eating Disorders Are No More

Well, this is an interesting follow-up to the ‘fitspo’ discussion last week. Sarah Robles, the top weight-lifter in America, is bound for the Olympics and can barely pay rent.

…And even though she’s the U.S.’s best chance at an Olympic medal, she’ll never get the fame or fortune that come so easily to her fellow athletes — in part because, at 5 feet, 10.5 inches and 275 pounds, she doesn’t fit the ideal of thin, toned athletic beauty.

“You can get that sponsorship if you’re a super-built guy or a girl who looks good in a bikini. But not if you’re a girl who’s built like a guy,” she says. The 23-year-old from California became the highest ranked weightlifter in the country last year after placing 11th at the world championships, beating out every male and female American on the roster. On her best day, she can lift more than 568 pounds — that’s roughly five IKEA couches, 65 gallons of milk, or one large adult male lion.
(full article)

The thing is, if you passed Sarah on the street, a lot of people might make assumptions about her health based on her height and weight, and I doubt anyone would assume she was an Olympic athlete. She’s a prime example as to why I can’t stand that ‘fitspo’ crap - it promotes very narrow ideas of health, fitness, and attractiveness. If ‘fitspo’ is about motivation to work out, why isn’t there any with Sarah Robles? After all, she’s pretty damn fit!

 “Work hard, eat well, and maybe you’ll make it to the Olympics, just like Sarah Robles!”

That wasn’t so hard, was it? I’m sick and tired of only a single body type being represented as a healthy body. Sarah even did a great write-up about bone mass, body type, and physical health on her blog:

In a book I have about sports and exercise science, the definition of obesity is, “A pathological condition in which a person’s body weight is is 20-25% above their skeletal and physical requirements for a male and 30-35% for a female.” It says nothing about body fat, and it says nothing about your clothing size.

For my sport, MY physical and skeletal requirements are based on my weight class and levers. Because I am 5’10 and have a larger frame and long levers, I am best suited for the 75+ weight class and need my body weight to lift large amounts of weight. Am I considered, “obese?” Am I “unhealthy?” It depends on who you ask.

I weigh about 275 lbs. I’m assuming if my weight were actually on the [BMI] chart, I’d be considered “obese.” I think this chart is relatively bogus. Athletes, especially power athletes like myself are going to have a large amount of muscle mass, making them weigh more for their height than the average person. I can understand using this chart for the average or sedentary person but it is not applicable to all people. Why is there only one chart? Shouldn’t there be one for each gender at least?

In 2010, I had a Dr. tell me what my BMI was and it was 39.1 at 266 lbs.
(full post here)

Hearing her discuss it like that, I think the ‘fitness inspiration’ crap isn’t so much about being ‘fit’ as it is about fitting in: fitting into the image, clothing sizes, and arbitrary standards set by our culture, media, and beauty/diet industry.

There’s currently a fund to help Sarah make it to the Olympics and ensure her coach can go with her. They already met their modest goal of $2,500, but donations are being accepted throughout the month. The donation page can be found here.

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This was originally posted here on my Wordpress blog.

I recently talked about how punk rock and sobriety had a big effect on my life, and the appeal that punk had because of its foundational ideals of acceptance of all people. Black, white, gay, straight, fat, skinny – there wasn’t any room for to judge people over such superficial things.

That doesn’t mean people didn’t bring their own prejudices and insecurities into radical or punk communities. It’s easy to say, “We stand for this,” but being ‘not prejudiced’ against a given group or type of person isn’t as simple as saying you aren’t racist/homophobic/transphobic/sexist and then denying all responsibility when you end up doing or saying something which actually happens to be prejudiced.

That’s because not acting or thinking in prejudicial ways is a process that evolves as we erode our own ignorance. You can be well-intentioned in your ideas and words, but that doesn’t always mean you don’t do or say anything that isn’t offensive to someone – particularly something you have zero exposure to or experience with.

This week sees one well-known punk musician coming out in a very public way over a matter which will put a lot of these issues to the test. Tom Gabel of the band Against Me! (yeah, they spell it with an exclamation mark) has a six page interview in this week’s Rolling Stone coming out as transgendered. She (Tom) will be changing her name to Laura Jane Grace and doing hormone therapy. She and her wife will remain together. It’s all over the internet already, so I won’t bother repeating all the same details that are available everywhere else.

What I do want to talk about, though, is the knee-jerk reactions to this news. While I’ve seen more supportive comments and discussion than anything, the general lack of education on trans* issues is apparent by some of the things being said. And, it’s the internet of course, so people often make no effort to hide their ignorance or bias.

First, to get it out of the way, gender dysphoria is a real thing. I can only imagine the personal Hell it must be to truly feel as though the body you have is not reflective of who you actually are. Add on some socially constructed gender norms which forbid certain behaviors or styles of dress, and I bet it can get pretty damned claustrophobic just living in your own skin.

I’ve heard some people insist that people who are transgendered are ‘sick in the head’ or attempt to explain it away with similarly dismissive phrases. Suddenly, we’re all psychologists! The thing is, sometimes the people in our society who actually experience these things find their courage and voices long before we catch up, and find our senses, and learn how to respond to them with the dignity and respect they’ve always deserved.

It’s worth noting that homosexuality used to be listed in the Diagonostic and Statistical Manual of Mental Disorders as a mental health disorder until research in the 1970’s demonstrated that, aside from their sexual orientation, people who identified as gay were no more or less crazy than anybody else. And, especially in the past ten years, I’ve been pleased to see the growing acceptance of LGBTQ people, something I partially attribute to the way social media and the internet has drastically changed our ability to communicate ideas quickly.

But, there’s just one problem. The conversation seems to usually just be about the L, G, & B, and the T and Q are nowhere to be found. That’s because the idea of gay or lesbian is still stuck in the gender binary which strictly defines gender and strictly defines sexual orientation. Some of the questions and speculation on message boards has involved the implications for Tom’s marriage - does this mean her wife is now gay? No, it just means that the person she loves and is married to happens to be transgendered.

Regardless of whether or not you understand it or like it, there’s a whole segment of the world’s population that don’t feel as though they fit neatly into the sex they were assigned at birth or the expectations placed upon them by society to act, dress, or think a certain way based on their biology, let alone who they’re attracted to or love. I try to avoid discussing things that are overly political on here because I don’t consider eating disorders, body image, or mental health to be partisan issues. However, human rights aren’t partisan issues, either, however politicized they have become. Full equality before the law as citizens and human beings shouldn’t be controversial.

We defend our own intolerance or discomfort with complaints that these issues are ‘weird’ or ‘not normal.’ So what if it seems weird? And when it comes to gender identity or self-expression, the only standard for ‘normal’ is based on a societal majority. I don’t think it’s unreasonable to need some time to absorb information and work towards a real understanding of a particular issue, but at the same time, our own ignorance on a subject doesn’t justify any amount of judgment or disrespect.

I’m writing about this because I think acceptance of people for who they are and how they express themselves is a critical part of working towards an ideal where we have a culture of true body acceptance. I personally don’t see a huge difference between fat shaming, weight stigma, sexism, and transphobia, because they all stem from some a socially constructed bias that demands we all be a certain way.

Furthermore, the idea that someone who happens to be gay or transgendered is perverted or unwell is rooted in patriarchal gender norms – the very same gender norms which establish the mores that dictate how men and women should dress, act, and behave. We can’t have it both ways, to push away from those antiquated gender roles but then place limitations on how a person can define, experience, and express their identity.

Personally, I think it’s fantastic that she’s found the courage to come out in such a public way, and more importantly, she’s doing it with the support and love of her partner, bandmates, and friends. Instead of running our mouths with misinformed opinions, this is an opportunity to educate ourselves on this lesser known and infrequently discussed aspect of the human experience.

“…and the sun’s always rising in the sky somewhere. and if young hearts should explode from all the lies they’ve been told, let the new night bring you peace. and the promise of tomorrow. where can we wake to a new beginning.”
-8 Full Hours of Sleep, off of ‘Reinventing Axl Rose

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.